Jed's Journey

Latest MRI results

2010-09-14T14:42:00.002+02:00

14th September 2010

Hi there,

Jed's MRI results are stable. Our last MRI was 20 July 2010 and there is no change since then. We pray that the surgeon got the entire tumor out and that the temodar (chemo) is working to mop up any left over cells.

The results still need to be reviewed by the neuro surgeon but according to the radiologists review my son's cancer is stable - thank you Lord God and thank you each person who has stood by us today and prayed with us.

Ray and I have discussed doing another scan in 2 months but will continue to take it day by day. The CSF leak was very evident on the scan and whilst it looks rather shocking on the image it is causing NO discomfort to Jed.

Jed's spine remains clear of any drop mets!!!! AMEN!

In God we Trust.

Thanking God for healing my baby.

Love and hugs

Bonni

Jed's mommy

Jed's Pathology

2010-08-27T12:34:00.002+02:00

27th August 2010

Hi everyone,

It has been a while since I updated with what has been going on...... the news isn't good.

Jed's pathology came back from the US that the tumor is now an AA3 (Anaplastic Astrocytoma grade 3 - high grade glioma). The original pathology may have been wrong or the tumour has morphed into a more aggressive grade because of the high doses of chemo and radiation. The worst news is there is no treatment plan for an AA3 as it does not respond to chemo. I've been to see Prof Janet Poole at the Johannesburg General Hospital to ask her if she has ever treated an AA3 patient and she has not and nor does she know of any "local" cases. What she did know about the tumour wasn't positive..... She referred me back to the US and I'm now researching and trying to locate doctors in the US that have some experience with this high grade tumour. Thank you once again to DHL for doing all the shipments free of charge and with urgency!

I want more for Jed's life..... more giggles, more smiles, more walks and adventures. I would give up anything I own to save my son! I dream of packing his school lunch box one day and doing his homework. I dream of his birthday parties and the friends he'll make. While you look at the watch today and wish the day away so you can leave your job, I ask that time stops..... pauses and that I can live in THIS moment forever! This cancer has robbed me of everything I have ever worked for and taken away the joys I once felt but it will not take away my faith as more and more I realise the only person that can save my little boy is God, so if you want to do something for a mother who is broken, pray!

Jed is doing well, the only issue being low platelets. He is happy and full of energy. There is morning vomiting but this is controlled with the zofran.

The attached picture was taken from our little break to Emerald - where we had an AWESOME time.....

Love you all and thank you

Bon x x x
Jeddy's mommy!

Update with Newspaper article

2010-08-11T14:21:00.001+02:00

11th August 2010

Hi there,

Been a while since I updated my special Jed10 supporters.

Jed is doing well. He finished his first round of temador trial chemo on the 26th of July so we start the next round in 23 days time. He tolerated the chemo so well and even his blood results were outstanding (just below the normal ranges)

We sent all the tumor slides (samples of the "monster" removed in his latest surgery) to the US for them to review and confirm that they agree with the SA team's pathology. I have heard back from them; they do NOT agree that Jed has a Pilomyxoid Astrocytoma but it is some form of Astrocytoma. The chemo we are using at the moment is for all types of Astrocytomas and we are positive that the growth is an astrocytoma due to the star-shaped brain cells called astrocytes.

Jed's tumor changed from a Pilocystic Astrocytoma to a Pilomyxoid Astrocytoma from grade 1 to grade 3 - my understanding is that with chemo and radiation treatment the tumor's get more aggressive. I pray that this is not the case with our boy once again! I'm feeling confident with the team in the US. I believe they will come back to me with confirmation by early next week. Thank you to the DHL team who have ensured that the samples arrive safely. The lastest shipment left last night and contains all the tissue samples taken from Jed during all 3 his brain surgeries. See attached article published in our local newspaper.

The CSF leak is the same size maybe a little bigger than a few weeks ago but I am not overly concerned as Jed is doing well in his physical functioning which indicates no pressure on the brain.

My prayer requests

That the tissue samples arrive safely in the US
The US team confirm that the cancer is treatable and recommend a chemo treatment that is effective
and that by the mercy of God the surgeon removed the entire tumor - this remains our prayer!!! Jed is healed, Jed is healed, Jed is healed.....

Thank you to everyone for your messages of support and love, I often feel that some may be bored with the ongoing drama of my life so when I get a message, a mail or a letter my heart rejoices! This is the hardest experience of my life and I appreciate each one of you so much.

In God we Trust!

Love and hugs
Bon x

News on Jed

2010-07-07T20:13:00.002+02:00

7th July 2010

Hi there,

We met with the oncologist on Tuesday and he has recommended Temador at 120mg - Jed was on this protocol in Feb 2009 but we stopped it due to low blood counts (platelets) therefore I will be nagging for platelet donors again soon. This is not an IV chemo but an oral. The side effects are less than the trail chemo and we will try this before going for the Avastin (which has very harsh side effects)

DHL have sent the pathology slides to the US for confirmation that the tumor is Pilomyxoid Astrocytoma - there are two doctors over there looking at Jed's protocol to ensure that we are on the right path with regards to treatment going forward.

Jed is doing amazing, his left side weakness is no longer evident AT ALL (thank you Lord) and he is running around like a normal little boy - the only time you would notice the surgery is if you saw him from the back. He is my miracle boy and I want to say thank you to each of you for the prayers over this difficult time.

We MRI on the 20th of July 2010 and then we will know what we are dealing with...... our prayers are that the surgeon got the whole tumor - cystic cells and all. He explained that he went very deep into normal brain and removed every part that looked like cancer, scare tissue and radiation damage.

Radiation is not an option in this country as we don't have proton (direct at the tumor) - Jed has had maximum dosage of conversational treatment. If there is growth we will take Jeddy out the country if need be but for now we just pray, breathe and hold onto the hope that the surgeon got it all out.....

With love and hugs
Bon
x x x x

Today's update

2010-06-17T20:14:00.003+02:00

17th June 2010

Hi there,

I have just called Linksfield to confirm that post surgery Jed will be in isolation and have a dedicated sister looking after him. Dr Klass (pediatrician at Linksfield he actually dx Jed back in August 2008) has confirmed that they have staff issues due to the soccer but will ensure that Jed is given priority. He said he and Dr Weinberg discussed once again the risks of the surgery and from then on I heard bla bla high risk bla bla due to radiation healing is a huge problem bla bla bla....... as long as my son is pain free and I want to see his smile asap, the rest is just talk at this stage!!!

Today Jed is still mobile, he is falling like a drunken boy but he is still determined to move around and be independent. He has fallen three times pretty badly and I think he may have cracked his nose as it is swollen and blue.... but he is not complaining of pain at all. His best friend Thami (see photo) is staying with us and they are laughing playing games and enjoying normal things boys do. So neurologically Jed is "okay"..... the nausea is controlled with the very high doses of steriods - I am yet to see the steroid rage come out. Although he is very emotional - crying about silly little things like the TV on the wrong channel or his bottie not warm enough so the steroids are kicking in as Jed is normally so sweet.

I got busy and organised today. Got Jed's new bedding for the hospital and goodies to decorate his room - I'm going Toy Story 3 as it seems to be very "in" at the moment. I have got him a duvet, pillow, carpet and a few dvds for the hopital. I got him sheep skin from Michelle and special creams to prevent bed sores. I have meds for tummy issues related to high doses of pain medication. I have clear liquids and new bottles - I got zip up tops as nothing will be able to go over his head (already there is swelling). I have purity and liquid food supplements, nappies as he won't be able to move and bed sheets and wipes.... please let me know if I have forgotten anything. Feeling organised makes me feel in control and with cancer u have NO control so this obsession is therapeutic at this stage. I'm sterilizing the bedding and hospital clothes now and will pack them up tomorrow - "keep on swimming, keep on swimming, keep on swimming!!"

Gillian Declan's (he sadly passed away from cancer) mom dropped off some cooked meals which was a wonderful and welcomed surprise, as you all know I just HATE cooking so starving to death would suit me right now... Ray has already lost 12 kgs with all this cancer stress and I guess I found half of the 12kgs which is great as eating seems like a huge mission (I have room to starve a bit) but yes, we are keeping up our strength.

Please pray, I'm isolating myself more and more I guess this is selfish but I just know that if I speak on the phone it may just push me over the edge which I'm currently leaning over - toes already gribbing the sides... today Alida phoned and it took so much strength not to cry that I think I landed up sounding rude, sick and mad.... so let's stick to mails.... but thank you for the beautiful messages of strength and love at this putrid time!

Love
Bonni Jed's mommy

Jed's Reality

2010-06-15T17:06:00.000+02:00

15th June 2010

Hi there,

The update so that my phone silences...

Dr Reynders told us that we have days with Jed - the cancer is very aggressive and almost at full size. My baby is suddenly weak, he can't really walk and the pain is setting in... but he is playing in true Jed style.....

Our time with him is precious so I will not be taking calls to chat and repeat myself.

We are seeing a surgeon to discuss the possibility of taking the tumor out to relieve the pressure to avoid pain for Jed. He is reluctant to operate as the
wall around the tumor is hard due to the two previous operations in the same location. South Africa has a proton radiation and if I find it this will also make Jeddy be more comfortable during this time. Please feel free to donate to this if you feel you would like to.....

We do not want new visitors at this time as we don't want to entertain anyone and to be honest this is our family time. I will do all I can to ensure Jed does not suffer and that if this is God's will then I pray he directs us and gives us the medication required.

How am I???? Well I broken to the core - there are honestly no words to describe this pain - death for me would be a pleasant and welcome experience. I picture not seeing Jed in his school uniform and never seeing that little tooth growing in his mouth - I think of sleeping without him in my arms and I know that I couldn't do it.... so on the how am I... I am currently strong for my son whilst shattered as NOW this is about Jed and not me.... or Ray or his precious Gwannies..... we all need to be strong for MY SON. My precious beautiful wonderful son!

Jed's bank account details to assist with care during this time.

First National BankAccount No: 62218655184Branch: GreenstoneBranch code: 201510Acc Name: Jed SucklingReference: Your name or if you prefer anonymousSwift Code: FirNZAJJA 188

Bonni - always Jed's mom

Vusi died yesterday

2010-06-08T10:22:00.003+02:00

Hello everyone,

Our little Vus Vus puppy died yesterday. He was barking at the maid and I hit the bed and shouted "Vusi stop barking" he got a fright fell off the bed, hit his tiny head on the corner of the set of draws, broke his neck and was dead on landing. We rushed him to vet and I insisted they do everything to try bring my little puppy back, but it was too late......

Vusi was not just a dog, he was the little boy who at 3am when "suicide hour" hit would lick my tears and cuddle up to me. He was my replacement of the lack of affection, he'd keep me warm and he was my little comforter. When Jed would go for treatment I'd say "we gotta get this done coz little Vus Vus is waiting". Jed would rush through it so we could get home to our doggie.

My heart is broken into a million pieces. Losing Vus just highlighted once again how in an instant your world can change. - If I never shouted to him to stop barking he may not have fallen off the bed.... if . ... if ... if....

On the way to the vet I was crying and driving very fast. Jed said... "mom don't drive fast, Vus Vus is already with Jesus, Jesus told me... there is a special heaven where doggies go, and mom Vus is okay so stop crying" - my son shocks me....

The clocks ticking is louder and the silence is hurting my ears.... I miss my little doggie and I feel extra lonely now....

Ray has already said that he does not want another dog in the flat but it doesn't matter cos Vus is irreplaceable.

In Nemo-The Movie-Dori sings to Nemo when he is scared of the dark "just keep swimming, just keep swimming, just keep swimming" and when times are hard I sing it too... but right now the current seems too strong...... with my puppy gone..

Please pray for us.

Love Bon and Jed

Update and Rainbows and Smiles

2010-06-02T13:14:00.002+02:00

25th Mat 2010

Hi everyone,

......sorry for being so quiet but I have been enjoying the normal things that most of us take for granted. Jed and I have been going to play games (video arcade games), watching movies and living it up. It has been the most amazing time, Jed is eating so much better and his weight is at 22.8kgs this morning (and to think in September it was 16kgs)

We had a wonderful fund raiser to raise funds for Jed and Jordi. A special heartfelt thank you to everyone who came along and supported the boys. The evening was a huge success. We managed to raise just enough for the MRI scan which is a huge relief. Pat - thanks for all your hard work. I don't have any photos so if any of you took photos please send them to me. Jed's next MRI is on the 21st of June 2010 so please keep praying... Our pray is NED - NO EVIDENCE OF DISEASE - God can do this!

Jed is still going for Occupational therapy and he is showing some improvements with his fine motor skills. He is still having a hard time writing and doing some tasks as his hands still shake. The shake is caused by the damage from surgery and/or radiation. He calls it his wiggle - the wiggle has hampered his writing but not stopped him. He is now writing his name clearly and has mastered writing up to number 4. I am still home schooling him for 3 hours at day and he continues to amaze me with his intelligence (mmmm wonder where he gets it).

At the last blood test, we found out that Jed is Vit D deficient - so I am supplementing him, as I have read some interesting facts on Vit D working to help slow down or stop cancer cells. The last blood test showed his count was 24 and my aim is to get it up to 60 - 80. On Thursday we will do a full blood count to check sodium levels, liver function and Vit D. Thursday I will be taking him in for his port flush and to DELIVER GIFTS TO THE CHILDREN IN OUR ONCOLOGY WARD!!!!!!

My charity Rainbows and Smiles is now legal and with the help of my dear friend Dawn Van Vuuren from local magazine we are doing our first awareness day on Saturday. The sole purpose of this charity is to bring joy to children with cancer and create awareness. Membership to the organisation costs nothing and all members are open to all information and details regarding the organisation. Basically you join, you get e-mails and photo's of kids with cancer receiving a gift... simple..... As membership grows so does awareness for childhood cancer! Please see attached invite for Saturday! Rainbows and Smiles constitution is available for anyone to read, review and comment on. This is my way of "paying it forward......"

I thank you all for the continued love, prayers and support.

Love Bonni
Founder of Rainbows and Smiles
BUT MOST IMPORTANTLY PROUDLY JED'S MOMMY

Brain cancer awareness month

2010-05-06T11:09:00.001+02:00

5th May 2010

Today is May 1st, and it is officially Brain Tumor Awareness Month.In 2000, more than 26,000 children in the US were living with a brain tumorEach year 3,400 new cases are diagnosed.Every day 9 children in just the US are diagnosed with a brain tumorBrain tumors are the leading cause of cancer death from childhood cancer, accounting for 24 percent of cancer-related deaths in 1997 among persons up to 19.76 percent of children diagnosed with a brain tumor are younger than 15.There are more than 120 different types of brain tumors, making effective treatment very complicated.Pediatric brain tumors are different from those in adults and are often treated differently.The combined five-year survival rates for childhood brain tumors has increased slowly, from 54 percent to approximately 60 percent.However, for some pediatric brain tumors (e.g., brain stem gliomas, atypical teritoid/rhabdoid and glioblastoma multifome), long-term survival rates remain below 20 percent.Quality of life for survivors of pediatric brain tumors is influenced by the long-term side effects of treatments such as chemotherapy and radiation.Brain tumors are treated by surgery, radiation therapy and chemotherapy, used either individually or in combination.Less than 3% of all cancer funding is directed at the twelve major types of childhood cancer.Wear grey for Jed, spread the word and show us you careTogether we can help to find a cure TODAY
Jed appears with me in the video and earlier with Vusi...... Jordi does not have brain cancer but spinal cancer (in remission) appears in the video on his swing. Jordi's MRI is on Monday and surgery on Wednesday (please pray all goes well as he is having some cold/flu symptoms)

In God we Trust - BELIEVE!!!!

Enjoy the video

http://www.facebook.com/#!/video/video.php?v=1422698857503

Love Bon

Update on Chemo Protocol

2010-04-20T11:07:00.001+02:00

19th April 2010

Hi everyone,

After an intense meeting with our oncologist we have decided to go onto the "watch and wait" period with MRI's every 2 months - for those who think this is too often I'd like to remind you that Jed's tumor grew aggressively after his 2nd surgery and it was at half way after 4 weeks. The medical aid have agreed to pay for the MRI scans every 4 months which means we will pay for every 2nd MRI - we are looking at about R13 000 - 15 000 per MRI (but I'm going to negotiate a cash upfront discount and plead my case). PLEASE ensure that you get your fund raiser ticket - we are having the function on the 15th of May and there are still 50 odd tickets up for grabs - this fundraiser is for Jed and Jordan - Michelle has a self payment gap on her MRI's of about R9 000 per MRI so we are both kind of stressing so PLEASE attend our little function for these amazing dudes. We promise a night of fun, great prizes, gifts and entertainment at only R160 per ticket.

We have our last Vincristine push through on Sunday and then our watch and wait begins... already Jed's blood counts look like a normal child's results. I'm thinking over the next 2 months I am going to take him to the shops, to play golf, the park, to play with friends and enjoy his chemo break - I intend to enjoy my son as never before and I look forward to the most amazing quality time, fresh air and people - a blessing!

I would like to also suggest that the first week of May we make our prayer week - I will be mailing out a prayer each morning for a week, clear and specific requests regarding Jed's healing, if you don't want to receive the mail let me know, otherwise you are all gonna get it.

Thank you to everyone who has donated clothes to Rainbows and Smiles, Norms, Charls, Winny, Claire and Barbara (AGAIN). The charity is almost legal and I look forward to posting pictures of children receiving toys to make them SMILE!

Another thank you to Becks (my IKO's were rather difficult to meet this year so I thank you for the ongoing support) and my precious cousin Shirley - you both know why - I love and appreciate you so much!

In God we TRUST!!!

Love and hugs
Bon
Proudly Jed's mom (oh and Vus Vus)

Hypersensitive to Carboplatin

2010-04-20T11:04:00.001+02:00

12th April 2010

Hi there,

A quick update from a very emotionally exhausted mom. Yesterday was week 49 of the Vincristine/Carbo protocol for Jed... over the last 3 sessions Jed has started to develop what I thought was an allergic reaction to chemo. After a long, lonely night of cleaning vomit, taking temps and research I now realise that Jed has rejected the Carboplatin (the chemo that is keeping him stable). I'm feeling extremely anxious as the next recommended protocol of Vinblastine has had no success on PMA brain cancer. I contacted 13 mom's through the night and they all confirmed my worst nightmare - with Vinbastine their children experienced growth.

Jed has hypersensitivity to Carbo which can be fatal. Once again, there was no doctor there during the IV transfusion and this was a request I'd made a week prior to coming in for the chemo. (but what the hell do I know?????) Thank God Elize was there and reacted very quickly. The doctor arrived about an hour into Jed's reaction. By this time Jed's heart rate was coming down from 164 and the oxygen (on 5) had brought his saturation up from 80 (thank you GOD for no collapsed lungs) - I'm angry, hurt and upset that once again I faced loosing my son to what I put down to a lack of knowledge and incompetence. I want to be Jed's mom and not his doctor!!!! The recommended protocol as no success so WHY recommend it!

I've e-mail America and I'm waiting to see what the next step will be, will we try Vinblastine and pray knowing each child is different, will we go onto no chemo watch and wait or will I sell my soul and take my son to America for treatment - this is the decisions Raymond and I we are faced with....

Please add me to your prayers as I honestly feel like I'm at breaking point. The ground has been kicked out from under me and I've got no where to turn and not one person medical person is giving me the hope and reassurrance i need so badly.

I'm not answering my phone as I'm simply too busy contacting doctors and getting as much information together as possible - I will not give up on my son!

Bonni

Jed's MRI Results

2010-04-02T15:02:00.001+02:00

2nd April 2010

Hi there,

Jed is stable, no new growth, still some cells that seem busy but no visible tumour growth or tumour - thank you all for your prayers. Whilst I am jumping for joy at this result I'm still fully aware of what brain cancer is all about and the joy of hearing stable is often replaced with the fears of the next MRI... I celebrate that living with this news for the next 3 months is a gift from God. We did not complete the spine MRI as Jed woke up during the MRI. The spine is always just a precaution.

Jed's IQ test has come back as Average (some area's slightly above average and other's slightly below) - this is a huge huge huge huge miracle. Let me remind you that Jed has had grommets, tonsils, adenoids, teeth before he was diagnosed and then, brain surgery (9 hours), recurrence that brought a more complicated brain operation for another 9 hours, followed by 31 sessions of radiation, a port operation, a BURST APPENDIX that sat in his gutt for 48 hours while he was in full septic shock (he went into surgery with a collapsed lung)..... and pulled through to follow aggressive high dose chemo for 81 weeks - we are currently on week 47 - this child is of AVERAGE intelligence along with 68% of the general population. That is a miracle! I wanted to attach the report but I have not received the electronic copy yet, as soon as I do I will attach it and send it off to you all.

The pychometrist and psychologist have come back with a lot of recommended therapy to correct the issues Jed is facing post surgery. Jed has a wiggle (shake) in his hands - this was a huge hamper during the IQ test as he writes VERY slow. This happened during his first surgery and while I have been fully aware of it I have not done anything about it but try and get him to TRY..... I have been advised to get Jed some educational packages on computer for him to work through. Awesome idea as he loves being on my computer and the shakes will not be as much of an issue. Occupational Therapy and physio were recommended. I have already started the OT but as Jed does not enjoy physio at all and finds it very boring (and I agree) we decided to rather continue with the swimming pool exercises and are trying him out at tennis lessons (15 - 20 mins a time)... It is all about Jed enjoying himself and having fun!! The other things they recommended I can do with him at home!!

The function is going ahead and an independent account has been opened. I believe about 60 of the 120 tickets are sold already. Ray's mom, Pat, has taken on this project to assist with Jed and Jordan's medical expenses. The tickets are 160 per person. It is a three course dinner (home made yummy food), we have booked a DJ and Cindy's Florist have given us flowers for the tables at cost price. So far it is all coming together nicely. There are going to be tons of give aways and a few raffles at the evening. Please let me know if you want a ticket and I will gladly send off the details. We have booked the date for 15 May 2010 at the Edenvale Moth Hall (also free). May is brain and spinal cancer awareness month! Attached picture is taken near the venue!

Rainbows and Smiles (my little thing) delivered over R500 worth of goodies to Unitas on Wednesday. Toys to make children smile. Iona got a little teddy that you make yourself and some beads, Aiden a dump truck, Reef a music system, A new Leukemia child got a puzzle and panda bear and a new brain cancer child - art set and model car set to keep him busy while he covers. I LOVE giving out the toys and I believe it is the best therapy for me. I'd like to thank Winny from The Magic Company for the donation of 2nd hand clothes and bags.... come on people - we all need to clean out our cupboards for winter.... I sell the clothes and use this money to buy the toys. Rainbows and Smiles next project is to assist an 8 year old orphan (cancer child) with some clothes, food and smiles toys. Canca TLC have given me her details and I'm looking forward to selling clothes to do this for a child!! So please let me have your scraps to sell off to people who need the clothes... it is a win win all round.

Lastly, please pray for our boy Jordi who has his surgery on the 14th of April - we pray for a successful surgery and that he is up and walking too. Please pray for Michelle on this day. We will be seeing Dr Edward Gurnell on the 13th of April - the dude from Carte Blanche Medical regarding his medical breakthrough on mice with brain cancer - I need to know when they start testing on humans and how advanced the current technology is. Please continue to pray for this research with Scorpion venom.

Reef needs prayers for his Liver, Jaryd is in for aggressive chemo and please remember all our children with cancer and the parents of children no longer with us!

In God we Trust and continue to thank him for Jed's healing.

Love and hugs
Bon

General update

2010-03-18T11:35:00.001+02:00

18th March 2010

Hi there,
It has not been an easy couple of days. On Tuesday morning at 7am we lost Connor Ross! To those who have supported me through this emotionally-charged situation I can only say thank you. I’m broken to the very core and I just can’t believe that this precious child has left us. It feels like in one horrific, terrifying moment the reality of cancer has hit us once again.
There is nothing anyone can say or do that will ease his mother’s pain. Leigh was in the process of raising funds to get Connor his bone marrow transplant; his passing away is a horrific shock to all of his family and his extended oncology family. I received some well thought out advise “Bonni distance yourself from these children”.... well my comment is “there is enough people distancing themselves”. I have started taking the anti-depressant again and will continue until this HUGE hole in the pit of my stomach is gone. I can do nothing but think of Connor with his woolie sheep laughing and playing with Jed. He would always share his vomit bucket with Jeddy. When Jed walked in the room his whole face would light up. I am honoured to have spent Sunday with Connor where I got the opportunity to spoil him with games and smile toys. We also got his mommy some nice goodies and snacks – it may have made NO difference to the outcome but for the time I spent with Connor he was happy and looked forward to playing with the toys and games we got for him. (Thank you to Andrew Geddes for his donation to “Rainbows and Smiles”)
See attached picture!
Jed is okay – no I have NOT told him about Connor – I can only protect him from this sadness and it is a decision I do not regret and believe strongly in. I have never lied to Jed so if he asks about Connor I will tell him “he’s gone home....”
Jed has mouth sores and a huge mouth abscess from the chemo and his lowered immune system. We are treating it aggressively with two strong antibiotics; if it has not cleared up by Friday afternoon, Jed will need to go into surgery to have the abscess drained. Feeding him is NEVER easy and now you can just imagine how hard it is... even his bottle is hurting his mouth so we are syringe feeding him and giving him soft goodies. Yoghurt is a no no as Jed is neutropenic.
We will be hosting a fund raiser for Jed and Jordi on the 15th of May 2009. May is Brain and Spinal Cancer Awareness month. Both Jed and Jordan have escalating medical bills and as Michelle and I are both not working we need the help of our support base. We are looking at having an evening of fun, dance and plenty of snacks and food. We are selling tickets at R160 and at this stage we are hoping that Jed and Jordi will be able to attend the function. We only have 120 tickets so please let us know if you are keen.
Rainbows and smiles is a little charity that I have started, the aim is to support children with cancer by making them smile. The charity will assist with anything the family needs, from food, snacks, electricity bills anything..... I raise money by selling 2
nd hand clothes – last month we raised R500. A special thanks to Elizabeth, Michelle, Andrew, Barbara, Deirdre (from Planet Nails in Lambton) and my little old mom who donated so many bags of clothes. Anything sells so please think of us when cleaning out your cupboards. We sell them to the cleaners who in turn resell them so we need heaps of stock to make a difference.
Jed’s MRI is the 31st of March at 8am.... “In God we Trust”
Keep praying and sending me your love and support – I promise you it is needed!
Hugs
Bonni

Update - lots of assessments

2010-03-04T10:03:00.002+02:00

4th March 2010

Hi there,

It has been a while since I updated. I got to the point where I felt I didn't want to overwhelm you guys with all our life issues but today I was the one overwhelmed by you asking for an update. So before I start, thank you for caring so much about Jed and please, if you don't want to receive mails please let me know - no offense will be taken I know everyone is busy at work... that way if you want an update you can view his blog at http://jedjourney.blogspot.com/ or his facebook group "Save Little Jed".

It has been a very busy period for me with Jed needing lots and lots of testing to determine what damage has been done to his brain from the radiation. Sometimes the damage only shows in later years so we needed a starting point to refer to. We had a Psychometrist assess him and she did a 2 hour evaluation with him. We will get that report in about a week or two. He also had a 4 hour eye exam... most of the time he spent annoying the lady trying to test his eyes - the test was broken up over two days as Jed got soooooo bored during the testing. I am VERY happy to report that Jed's vision is 100% perfect. Considering the location of the tumour this is wonderful news and well worth the cost of the test!!!! He then had an evaluation by a new Occupational Therapist - they think he has SID (sensory integration disorder) caused from the cancer - the OT - Rachel will work with Jed every week on a Thursday from now on. Jed is still doing his swimming instead of the physio and he is doing very well - he has managed to swim 5m across the pool - I'm so proud of him. On the 13th of this month Jed has to see an educational psychologist as part of the recommendation from the psychometrist to determine if Jed will be able to attend a main stream school next year or will he need a remedial school. I honestly I don't mind either way as long as he gets to go to school!!!! I also took him to a homeopath to see how she could work with the oncologist - that turned out to be a complete waste of money as none of the medication, although natural, can be given to Jed according to the oncology dietitian... so who knows.... A special thank you my cousin Rachel in England who did some fund raising and this is covering a large part of these expenses!

Jed was due for an MRI on the 2nd of March - yip yesterday - the neurosurgeon and doctors have decided to push the MRI out to see the real effects of the chemo and to see if the contrast enhances over this time. His MRI is booked for the beginning of April. I am extremely anxious about this decision and Jed is very shaky in the mornings and then I have all kinds of negative thoughts but by lunch time the shaking improves and he is filled with energy.

Jed's chemo did not go well on Sunday and he has developed an allergy to Carboplatin chemo - this was a rather serious reaction - he went bright red and his ears started burning - he was screaming "help me Mommy" - the nurses administrated phenegan - allergy medication and the reaction stopped about 20 mins later. Going forward the doctor and I have agreed to pre-treat Jed with allergy medication to avoid the allergic reaction. Jed will also be monitored very closely as the chemo is given. Nothing in life is ever simple hey!

Jordan's surgery has been moved to the 14th of April so please keep that date in mind for extra prayers. The other day Jords was playing with his water gun in the pool and he pointed it up to the sky and shot it towards the heaven and then shouted "hey mom I shot God" - I found it rather funny as the relation is very real to Jordi and he was having fun playing water guns with his heavenly Father!

Vusi has finally had his ballie removed from his tummy - today in fact - and was sterilized at the same time. Even this made me sad, I now will never be a granny, the chemo and radiation have made Jed sterile. Even this is a mild concern considering what the overall risk is!

Thank you for your loving messages on mail and thank you for not forgetting me. If one thing I can tell you besides this being a horrid experience - it is also very lonely at times.

My life sure has changed!

Attached is a photo taken by my friend Jenny of Jed playing in her garden!

Love and gentle hugs
Bonni

Positive News

2010-02-08T18:38:00.003+02:00

8th February 2010

Hi there,

Jed's chemo went very quick and so well - no tears and he got a certificate for bravery from the sister! This week we did only Vincristine. His counts look really good. HB is 10.7 (just below normal), White cells at 3 (very good for a chemo kid) and platelets at 142. Even the Neutrophil counts are looking good so no in jecting my boy for a while. I am enjoying having this new "healthier" son around!!! Thank you so much for your prayers. PLEASE keep them coming... we still have a long road ahead!

Some other positive news is Jed is finally starting to eat better - he is eating Jungle Oats in the morning - which is amazing!!! And he has started to eat mince (5 - 6 spoons at a time) that Ray's mom is making for him. These are 2 new additions to his very limited list of food items so I'm very pleased and I think the food may have something to do with the increase in blood counts. This is also a sign that perhaps the monster is not there, as he is finally eating - although it is baby steps they are in the right direction....

Jaryd Smith - Rainbow boy - is having his spinathon on Saturday. Please feel free to pop in and support. I'll be the half dead girl on a bike - I've commented to spinning for 5 hours....mmmmmm I wonder if I will survive that. I'm actually really excited for the day and I'm hoping Belinda's fund raiser will be a huge success. Jaryd's wants to work with children with cancer and the fundraiser will enable him to help others and pay his own treatment expenses. What an awesome kid! Imagine wanting to help others after a 12 hour operation on your leg and the most aggressive chemo. His determination and courage should be a testament to us all! Jaryd is 9 years old!

Jordi's operation has been moved to the 3rd of March 2010 - both Jordan and Michelle have flu and had no alternative but to move the operation. Please keep praying that Jordan's operation will be a success and that he is walking soon!

Tomorrow I will be attending a CANSA TLC training session to enable me to support others. Please pray for me. I am very torn as to HOW involved I want to be with cancer families. My heart has really taken a beating with seeing much suffering but I do feel that I've been placed here and I need to ensure that I do my part. What my part is - only God knows???

Keep praying for the J's - Jarry, Jordi and Jed and remember darling Reef, Jono, Bi-arke, Leah and Aiden.

Attached is the information on Jarry's spinathon!! If you can't spin, pop in and laugh at me - it will be good for your soul!

Love and gentle hugs
Bon
PS: Vusi is not having his ballies done this week as previously stated, the dam vet refuses to come out of the operation to inform me how the operation went - he says he won't have time..... oh really! Well I will be taking my other son to another vet who will have time! Vusi's ballie is actually a bit of a concern as the one is trapped up - near the top of his willy - so they have to do a double cut and my boy weighs 1.2 kg..... Not a serious concern but another normal for me.... I'm having lots of normal moments and loving it! Imagine enjoying stressing over NORMAL stuff - it feels wonderful!!! - embrace your normal moments and enjoy them.

The monster is sleeping

2010-02-03T17:34:00.001+02:00

1st February 2010

Hi there,

Jed's big chemo went okay on Monday - Neutrophils are very low at zero so I am injecting him daily with Neupogen; which is torture. Imagine injecting your baby - it totally sucks. Anyhow 4 down and only 1 to go. His counts are so low that I have had to make the decision that no visitors are allowed, so I'm feeling rather down. I am missing Jed's laughter as he plays with Thami or Jordan. Jed is also having pains in his joints from the Neupogen and Vincristine (chemo) but the swimming seems to ease this. He vomited coco pops all over Ray this morning which was pleasant to witness but after zofran Jed was feeling much better and so was Ray (after a wash)!!!

We saw the Neurosurgeon today who confirmed that the latest MRI scans look fantastic. There is no visible tumour however there is an increase in contrast. Is it cancer, is it surgery scaring, or is it radiation??? At this point we don't know - we are just blessed that there is no visible new growth and that for now we can breath a little easier. We have 40 weeks of intense chemo left and 6 weeks after that we can do a PET scan and confirm if the cancer is still there. At this stage the monster is sleeping...... I already have "scanxiety" for the next MRI which will be end of March 2010. I have joined a Pilomyxoid support group and realise how truly blessed we are with this news as so many are not as lucky :-(.... I am still going to send the MRI to the states for their input - turning every stone - twice, three times, whatever is needed.

some other updates:

Jarry is doing well after his 12 hour leg save op and a direct quote from Belinda his mom which I received on Monday
"HOT OFF THE PRESS!!!!! Doctor has just phoned me......the histology results are 100% clear.....Did you hear me 100% CLEAR.....NO LIVING CANCER CELLS COULD BE FOUND....NOT EVEN ON THE BONE THEY REMOVED, NOT IN THE SURROUNDING TISSUE, NOWHERE....GOD, YOU ARE SOOOOO VERY FAITHFUL AND AMAZING AND I'M SO STOKED I CANT STOP CRYING!!!!!!!!!!!!!!!! "

Jarry will continue with chemo and they have a long road of physio ahead but what a wonderful bit of news, thank you to everyone who made rainbows and sent gifts for him. I appreciate it so dearly and I know Belinda was delighted with his room and the gifts!!!

Jordan Tromp's MRI remains clear - he is in full remission - NO EVIDENCE OF CANCER in his spine - what an amazing miracle that is!!!! Jordan will have surgery on his foot on the 8th of February in an attempt to get him walking. Jordan is still paralysed from the knees down but Michelle has found a surgeon who is believes he can get this little boy walking with "walk aids". Now that will be the ultimate for Michelle and I can just picture him walking and I can't wait for that day. Please send lots of prayers for Jordan and Michelle. This is a little boy that has overcome cancer and now begins the journey to regain his strength so he can walk again!!

And finally, please may I ask for prayers for Irma and Jan - Rene's mom and dad. After losing their precious daughter in December they are now faced with financial ruin. They have been evicted from their home and lost just about everything material. These parents are grieving is that not enough!!!!! I have transferred R500 from Jed's fund to them and I pray that this can at least provide some help for them. I am determined to get my ass into gear to raise funds and awareness for children like
Jed, Jordan, Jarry and for families, that like Rene's, loose EVERYTHING because of this HORRID disease!!! It just doesn't seem fair.

Attached is a photo of Jed10 with a MASSIVE DHL Truck - we are keeping up our operations skills by route planning and Jed is very proud of his mommy's work truck - thank you Steve!

Love and hugs
Bon, Ray and Vusi
PS: Vusi is having surgery on the 9th of Feb - de-ballies - nothing serious but ja, while i'm nagging for prayers - just add our puppy please!

Chemo update

2010-01-05T07:54:00.002+02:00

4th January 2010

Hello friends, Chemo went well. Jed's counts look good'ish (is that a word)....10.2 for HB (nice, low but nice), White cells 3 (low but okay'ish) and platelets at 56 - eeeeeeeeeeeeeeeeekkkkkkk - I started giving Jed a supplement called "Shark Liver Oil" and his platelets have been great - last week I was advised to give it to him every 2nd to 3rd day as the Vit A content is a little high in the South African product so .... his platelets are dropping.... I'm going back to one a day from tomorrow and I will see if they climb again and will monitor his Liver Functions.... I have also added Garlic and parsley to his supplements.... In my last mail I mentioned that Lefa was in remission...... I was wrong, he died.... he relapsed and he is gone.... I'm so broken and hurt! I remember Lefa and Jed running around the ward and together undoing their drips - as they both had ports - blood came shooting out and messed all over Jed; he looked like he had been stabbed. At the time it was not at all funny.... looking back I can picture these two little monsters playing with the drip lines.... Lefa had a gorgeous smile and the most beautiful dimples. Once when he was in ICU I went up with toys and goodies for him and he opened his eyes and said "hello mama Sipho, I love you" (Sipho - Jed's nickname)...... I remember thinking what a gorgeous kid he was and how with that one sentence he melted my heart! I asked the doctor today why so many of our children were dying, (today the hospital was empty.... only Jed ......) and he said "Bon, out of 10 children with cancer, 8 die".... this is my life, this is my reality and this is my worst nightmare.... I can't even express in words how helpless I feel.... the reality of cancer doesn't hit you as a parent until you see the devastation with your own eyes. WHY OH WHY is more not being done for our babies...??? - I'll tell you why, because after a child dies a parent stops breathing for a while, they break, and when they pick themselves up they can't face anything to do with cancer, so they close the book and move forward.... - with breast cancer - people survive and commit to awareness campaigns and charities and fun-walks and posters.... you know I read fair lady mag over breast cancer awareness month and there were 3 full page adverts. During childhood cancer awareness month - NOT ONE magazine had a gold ribbon advert, no lady at clicks handing out FREE gold ribbons... zip, nothing, zero......... if you think having breast cancer is hectic (and trust me I know it is) - try hugging a mother who has watched her child fight and then die from cancer.... My dream is to see pink, gold, red all equally represented! ..........(And as she pulls herself together) Please remember Jarry's big operation is happening on the 14th of January 2009, may I please ask that you pray for him. I will be fasting and praying on the 13th and I will be visiting the hospital on the 14th to be with his mommy! Reef is doing better and is home (finally) with his mom and dad! If you would like an update on Reef please mail me as his gran sends an update from time to time. I am also planning a fund raiser breakfast for some time towards the end of January - just waiting on my mind set to correct itself and then I will communicate the details. The money raised will go to Jed and Jordi's fund account. Jed for supplements and Jordi is in need of a super cool wheelchair. The gold pins from CANSA arrived. I was allocated 85 pins to sell. The pins are R30 each and are for childhood cancer awareness. This has nothing to do with Jed or Jordan's fund - it is for the TLC CANSA association. Please re-send any orders to me directly and you can transfer the money to Jed's account directly. I paid for the 85 out of my personal account (for admin issues) and transferred to CANSA. I was told that it was easier for the allocation of the money. Please continue to pray for us and keep us in your hearts! Attached photo was taken on New Year's day! With love and hugs

First post for 2010 - in God we trust

2010-01-03T12:44:00.002+02:00

3rd January 2010

Hi my friends, As I sit here reflecting on advances and set backs over the past couple of years, I wonder what the next one has in store for us. For my oncology friends who are sleeping on hospital chairs in their children's cancer wards and watching their children whilst facing their deepest fears, may you be able to sleep peacefully for a moment today.... May the beeping machines and chimes not wake you unnecessarily my precious friends. For Irma, Jan, Voilet, Melissa, Sandra, Wendy, Lauren, Dawn and all those coping with the recent or not so recent loss of a child, may you find a measure of peace knowing that your baby is no longer in physical pain and that they live on in your hearts and the hearts of those who were blessed to have known them in this lifetime. For those who rest living between MRI scans awaiting MRI verdicts & the resulting sentences, may you be able to find a little time to treasure the good moments and not let life pass you by as you worry. For those in remission, (Jordi, Lefa, Reef and Darrien), let them savour all the life they can and let them live life to the fullest! To my Jeddy, my miracle son, You are my prince, my gentle warrior and my very best friend. I am blessed beyond words to be your mommy, gifted with the joy of your presence in my life. Five years have flown by and I can only pray that Jesus blesses us with so many more years together. Jed you are gorgeous, I cherish our moments together, whether watching cartoons or figuring out a new action figure.... Being with you is knowing intrinsically the speed of time, and my helplessness to slow in down even for a minute. I need only watch you sleep to feel a sting in my eye - I love you Jeddy and I thank God that he has brought you thus far! Please pray for Ithuteng's mommy Violet, he got his angel wings on New Years eve..... no bone marrow match was found and we lost a very special child who we all loved dearly. The attached photo was taken of Jed and Ithuteng after Jed's appendix operation - the boys loved to swop Playstation games and run around the ward. I know Ithuteng has left a huge crack in my already broken heart.! Please pray for Jed's port to give blood, the port has somehow blocked and the doctor's can't use it for blood tests. As you know Jed goes weekly for chemo, blood tests and if required tranfusions so his port is essential ....On Monday he was "pricked" twice - his veins are not very good. Please pray for Jaryd who has major surgery on his leg on the 14th of January 2010 - this operation is to clear him of cancer (Ewings Sarcoma) and the surgeons are confident they can save his leg. Pray for strength for Belinda and Jason as they wait outside the theatre - it can be a very hard wait; time freezes...... Jaryd's counts are still very low so we need to pray that he starts eating and gains some much needed weight before his operation to give his body a boost! And lastly, thank you for praying for us, for believing with me and for being my strength. Thank you for supporting me with words of encouragement. Each e-mail and sms has been cherished and appreciated! There is no way I would still be sane without you and I ask that you please continue to walk with me on this journey; with Jesus leading the way!

Love and hugsBonni, Jed10 and Vusi

MRI tomorrow

2009-12-02T17:54:00.006+02:00

1st December 2009

Hi guys,

Firstly stop what you are doing as I'm sure most of you will read this around 8am tomorrow and at that time Jed will be having his MRI - this MRI will determine if the Carbo/Vinc chemo is keeping his tumour stable (although we pray for shrinkage or a total disappearance). Ray and I are both very nervous for this one.... I'm scared because of the "break" in treatment when Jed's appendix burst HOWEVER we need to keep our thoughts, minds and hearts positive... we need to believe and focus on a positive outcome for this MRI. Jed is healed!!!!! (say it over and over)

And as for this past week.....

Shoe wee this has been an awful week. We lost Christopher Beets and Rene - I don't have words to express the pain I feel. Rene's death has hit me really hard. I have not been able to scrapbook for "her" since I heard. Irma and Jan are very heart sore as are all the staff and friends/family at Unitas. These people/children become family. We share our "home" away from "home" and when one child goes it is like another chip off your already smashed heart. I don't know how I'm going to walk past room 9 and not think of Rene.... I don't know how I'm going to cope without Irma's company. Oom Jan's "melk coffee" will no longer be my hospital treat.... I feel so heartsore. Rene was given 3 months to live 9 years ago.... a true fighter..... I'm gonna miss her so much, my eyes are sore from sobbing.... (alone in the bath or early hours in the morning)!

Bob (Ray's mom's boyfriend) is loosing the fight to cancer.... the suffering is beyond torture and I pray the Lord takes him tonight....

As for my other family drama of this week.... no comment other than.... ma it is nice to have you with us, you are a blessing - please stick around and remember I love you and need you so much!!

Nothing else for now, just keep those positive prayers coming through today, pray that Jed's mommy and daddy get through the long long long hours waiting for the results.

Love and hugs
Bon, Ray, Jed and Vusi

2nd December 2009

Hi everyone,

MRI scan is done.

The tumour is stable - in other words there is no change. The doctor noted some enhancement but this could just be a little of the contrast hi lighting in the damaged (surgery and radiation) area of the cerebellar (back of the brain).... so how do I feel; thankful, blessed and smiling knowing that for another 3 months we can rest knowing that the chemo is keeping this bast*rd still....

We continue to believe that our miracle is around the corner and that one day we will stop chemo and live a normal life... but until then, we keep praying, we keep thanking God for another day, another week, another Christmas..... I will meet with Dr Weinberg and discuss the scan in more detail - I may include Dr Snyckers if I feel I need further explanations or options.

Thank you to everyone that prayed for my baby..... Ray, Vusi and I are so thankful for the love and overwhelming support.

Becks, I'm dancing and feeling happy - and still plodding in normal mode (shock!)

On Friday I will attend Rene's funeral - pray for Irma and Jan..... this is going to be a difficult day for all of us! I feel that she may be chatting to the Lord and handing out firm instructions for miracles from heaven.... I missed her so much today!

Love
Bon

Chemo on Monday

2009-11-26T13:00:00.002+02:00

24th November 2009

Hi,

Jed has been getting some fevers but nothing too hectic. His red cell count is low at 8.5 - which explains why he is sleeping through the night - well he did last night. His white cells are at 4 - still boosted from the neupogen shots and his platelets were at 98 - this is due to the neupogen and hopefully the Shark Liver Oil is working for him. Jed had Vincristine (chemo) yesterday and seems to have responded well. His legs are sore and he is not managing too well with the swimming at the moment. I have requested that today Sister Fiona cuts his swimming time down. Yesterday after 10 mins Jeddy was exhausted and just wanted to come home..... His infection marker is at 9 (just a cold) but Dr Reynders has sent away a blood culture... We have the "trolley" (Mel's old pram) and the push bike (with a handle) so if we go for a "walk" he has "wheels" and can relax and enjoy while mommy does all the work....

Christopher Beets is still not doing well at all. Please may I ask you to send the prayers - I have been told that it comforts his mother. Just knowing people care gives you enough strength to get through another minute, hour or day... they are going through every mothers worst nightmare so please do send a prayer or just some thoughts to Lauren. Mails can be sent to me and I will forward them on. To my special friends who have sent - I thank you so much!

We are doing Jed's MRI next Wednesday the 2nd of December 2009 - I just don't have the strength try sound chirpy as this is really playing on my mind. I hope that one day the MRI's get easier but for now I feel like I have a ton of bricks on my whole body and the pain in my heart is physical. I seem to be holding back tears all the time. Yesterday I went for a shower and took Vusi with... I sobbed and sobbed... Vusi was a great comfort.... YES I SHOWERED WITH MY DOG! Vusi is having an operation in 2 months time, the vet say that they have to cut the lump out as it could turn to cancer (I hope this means it is not cancer now). Even my f'ing dog is giving me a hard time!

Jed and I are off to the "reach for a dream" Christmas function on Thursday and Jed has written his Christmas Wish list to hand to Santa. Top of the list is a fish.... so ..... i wonder how Father Christmas will feel about a fish (I already know how dad feels about having another pet in the flat)

Please keep all Jed's friends in your prayers (the J team) Jed, Jarry, Jordi, Jono and the others, Rene, Reef, Lefa.......also I ask for prayers for Larry my brother, he is on a huge suicide mission - as life just does not seem worth it for him anymore.... He is so different since the accident and I can only JUST manage to hide my frustration as my son fights for his life - my brother just wants to end his....

If anyone is keen to do a fund raiser for Jed and Jordi (he needs a new wheelchair urgently) please let me know. I can provide a list of all expenses for the boys and trust me it is rather a heap to manage when one parent is no longer employed. Anyone who knows me, knows that I HATE asking so please just arrange something for my boys and don't even mention it to me... Jed's account details are on facebook and the blog. Facebook is "Save little Jed" and the blog is http://jedjourney.blogspot.com/

Attached is Jed and poor little Vusi - they are still cuddled up sleeping as I type this... the bond is so sweet.... Vusi is very tolerant!

Love and gentle sad hugs
Bon, Jed and Vusi

Fifth birthday Party at Shelley's house

2009-11-18T10:29:00.001+02:00

17th November 2009

Hi there,

Yesterday was chemo - it is now moved to Monday's as it just fitted in with Jed's blood counts. Although Jeddy is full of flu the doctor went ahead with the Vincristine dose. Jed's blood counts were good due to the neupogen injections which I have been giving.

When we arrived at Unitas I saw Rene and had a "moment"... tears, snot and totally cracked.... then Vera from Cansa tells me to go to room12 for a therapy session... I am immediately "cheesed" right off. I was not in the mood for the ..."so tell me how you are feeling" kuk... but Vera doesn't take no for an answer. I marched off with my sulky face to room 12 only to find a massage lady waiting for me who did not say a word. I got a full back and neck rub and it was amazing. After that I had my hair cut (even shorter) and a blow-wave - a luxury I don't seem to ever find time to do... it once again, reminds me that there are people out there who do care and make a difference. Here is a thanks to the two ladies who volunteered to cheer the Onco moms up with free treatments.

Dr Reynders (aka Dr Rain-Deer) has confirmed that the MRI will be done in 3 weeks time. Naturally I have a bad case of PMS (Pre-MRI-Stress). The conversations in my head are driving me crazy and there seems to be no silencing them. I have the reasonable, hopeful and religious Bonni believing in the miracle and then there is the over-stressed paranoid Bonni picturing growth - I try to silence them by keeping focused on the now.... and the now is great. Jed has hair, energy and is strong enough for chemo. All we can do is pray that the MRI shows shrinkage or no sign of anything but normal brain tissue... oh God PLEEEEEEEEEEEEZZZZZZEEEEEEEE.....

Please may I ask that you pray for Jaryd (his 5th block of chemo started yesterday). We pray for a leg save and that NO physical damage is done to his leg - Jarry has Ewings Sarcoma. Rene is next - I have started making a scrapbook for her mom on her life; whilst making each page I grow to love this little girl more and more. Rene has a rare blood disorder and her body is rejecting her blood, on Monday her HB (red cell) count was 5.8 - she is bleeding from everywhere, ears, mouth, nose, her vomit is pure blood, so a miracle is really needed for my precious friend Irma and her baby Rene.... Reef is back in hospital with an infection marker of 200 - pray for strength for his mommy who was so excited to go home with him only to return 2 days later. Pray for Connor, he needs a bone marrow transplant as his AML blasts are at 6% meaning the chemo is not getting him to full remission... his sister Megan is hopefully a match if not I will be "toy-toying" (is that a word) for you all to get checked! Jono and Jordi are doing well - yippee.

Attached is a picture from Jed's birthday on Sunday - we got a Ben10 Four arms cake and spent the day with family at my sister's house.... thank you Lulu you are the best!

Love and gentle hugs
Bonni

My fifth birthday

2009-11-03T19:39:00.001+02:00

Hi there,

Went for bloods again on Saturday and again Jed's counts are too low for chemo. His platelets are not recovering. He is full of bruises but in very good spirits.

I just watched him open a few of his birthday presents this morning - what a gorgeous little smile. Today my baby is 5 years old. Jed has given me the best 5 years of my life. I have learnt what I now believe to be the real meaning to life and he has forever changed me. I cherish every moment I have with him and I will never stop praying or believing in a miracle for my son.

Happy Birthday my love...

My precious little boy,
You are my pride and joy,
You are the perfect son,
I feel I have already won.....

For the ballies in your head,
a million tears I have shed,
And when it gets too hard at night
you wrap your arms around me and say "mama sleep tight"
Oh God please make this right....

Your soft little touches and gentle kiss
turns my hell into a peaceful bliss
I love your smile
I hear your tears
God knows my fears
Dear Lord I ask for many many more years

You make the sun shine on every cloudy day
I wish I could cuddle your pain away
Jesus please let my baby stay!

Creative juices are awake it seems......Happy Birthday my Snoekie Nocks..... I love you my baby.

Prayers for platelets to go up urgently required! A LP will be done on Monday next week to determine what is up with Jed's bone marrow. But until then I have asked for a complete break from hospitals, doctors, chemo, and cancer. This week I celebrate the joy of my son turning FIVE!!!!

Off to the zoo with Granny Barbara and my very own monkey!

Love and gentle hugs
Bonni

General update of Jed

2009-10-19T21:00:00.002+02:00

18th October 2009

Hi there,

On Friday my mom and I took Jed for blood tests.

He started bleeding from his nose and mouth. I was calm when it first happened but when the blood started pouring out of his nose and mouth we decided it was time to take him to the hospital. Blood tests showed that the HB counts were low and his platelets were at 32. We arrived at 11am and knowing that my donor platelets were not going to be ready till Saturday (thanks Barbara my special friend) I was very nervous about how long we would have to wait, knowing there is a shortage of platelets and that Jeddy was losing blood. Lucky for us they arrived at 15h00 and they were transfused successfully and I was able to take Jed home for the evening.

So no hospital visit was needed on Saturday as all counts were done. I will keep monitoring him as I am concerned about the low HB count.

I went with Michelle and Jordi to see a surgeon on Wednesday to determine if there is anything that can be done for Jordi to make him mobile. The doctor explained that a series of operations would be required to enable Jordi to stand and walk. He told Michelle that Jordi would never play sport or run around like a "normal" little boy. Michelle was heart broken... she has however but her faith back in God and is now working extra hard to build up Jordi's feet with the help of a Physio Therapist. Surgery is on hold for the next 3 months as they work on Jordi's overall strength. If God can heal a tumour wrapped around Jordi's entire lower spine, then getting him to walk is no big deal for the Big Guy!

I saw Reef briefly on Saturday. Lydia was allowed to bring him out for a couple of minutes. He is swollen and bloated - he looked very uncomfortable but all of this is part of his bone marrow transplant process. I was allowed to kiss his little foot which was blue from the low oxygen levels. Please keep this little man in your prayers. He has a wonderful mommy and daddy waiting to watch him grow up!

Jed has started doing Physio in the pool with Teacher Fiona and he is loving it. She is working on increasing his muscle tone and getting him stronger. It is such a pleasure watching him splash around in the pool. He is very good and seems to be having so much fun. Vusi and I sit and watch his every splash - it lasts about 30 mins and we go on a Tuesday and Thursday. I'm hoping Jed will be strong enough for this Tuesday so please keep him in your prayers. Fiona commented that the right side weakness is not at all noticeable and it was the BEST compliment "I" have received in a long time. Let us hope as he gets stronger his little hands shake less and there is zero damage from radiation and surgery! See the picture attached of my brilliant son!

I have been advised to take him for OT and some more play therapy - it is on this week's "to do" list - please pray I find the right people that Jed will enjoy working with.

Hope you all have a great week and thank you for the continued love and support.

Love
Ray, Bon and Vusi
dx August 2008 JPA (cerebellar hemisphere - left)
Brain Operation (8 hours)
January 2009
Brain Operation (9 hours)
February
MRI showed cancer was back and at 3 cm (3 nodules visible)
31 Radiation session with temador chemo
August 2009 Appendix Burst
Emergency surgery
Currently on Vincristine/Carbo protocol at Unitas in Pretoria
at last MRI the tumour was stable with no clear nodules - our first miracle!
"In God we Trust"

A healthy naughty boy

2009-10-12T20:49:00.000+02:00

Hi there,

Blood tests on Saturday came with the normal frustrations of waiting for the results. Jed was once again a little darling. No tears when they pricked him and only a full when they removed the plaster - well I removed it. All counts were low but not low enough for a transfusion (yippeee). I am a little concerned about his on/off nose bleeds but I refuse to let anything negative creep into our very positive couple of weeks. Jed continues to do fantastic, he even has hair (a little) at the moment. If you didn't know that Jed had brain cancer - maybe - just maybe - you'd think he was just another naughty 4 year old.

I haven't posted an update on the visit to Dr Snyckers, for a number of reasons. It was not the most positive of experiences.... he did not overwhelm me with his charm. I was warned about the lack of charm but if I am gonna trust you with my child's life ..a little charm would be nice.... surgery is currently not an option. I wanted to meet him and I did... If surgery becomes essential at some stage I will re-look at that decision. And Secondly, I believe that Dr Weinberg knows the way into Jed's brain and if ever we needed to re-visit surgery I think my gut would go back to the man who has saved Jed's life twice. Just pray that we never re-visit this decision. The visit to Dr Snyckers is checked off my to-do list. The man is a wonderful surgeon and now he knows about Jed... that was my objective so for now it is done.

Today I woke up feeling rather down, missing the normal things like shopping, working (oddly, i enjoyed that), my garden, friends and just living.... but the day ended well... Jed, Ray, Vusi and I went to have professional photo's done with Cathy Heaton. What an amazing photographer and person. I even had my make-up done. Jed was the perfect little model for his photo shoot... Cathy saw Jed's article in "your baby" mag and joined his facebook group (Save Little Jed) and we became friends. She offered to take pictures of Jed as a gift - what an amazing gift by one of the most talented photographers. I hope you enjoy seeing them as much as we enjoyed having them done. Jed had such a great day that when we left the quiet northern estate he threw a mighty EAST RAND tantrum. I was most embarrassed by his behaviour and when I spoke to him about what he did, he told me it was not his fault he was upset because Vusi was sad to leave the house. mmmm

If you would like to see more of Cathy's work visit http://www.cathyheaton.co.za/

Please remember our boys and girls in your prayers..... also the mommies of angels.

Love
Bon, Ray, Jed10 and Vusi
"In God we Trust"

Jed doing fantastic

2009-10-07T16:30:00.003+02:00

7th October 2009

Hi there,

Thought I'd send an update out quick.

Jed had "big" chemo on Saturday - all counts had come up nicely and he was ready for the treatment. I am a very proud mommy; as Jed did not cry once on Saturday. I watched him lay like a soldier as Sister Hannie put the scary port needle in; I watched him smile as she removed the butterfly clip from the port and then I watched him laugh as I clapped...the pride just flowed out of me... he really is a brave brave boy. Saturday night was crazy post chemo with night sweats, vomiting and a hectic nose bleed. Sunday he started to improve and today he is on zero nausea medication and is playing (full of energy). This is only by the grace of God - I can't begin to thank you enough for your prayers.

And some additional prayer requests:

Jaryd - Ewings Sarcoma currently in hospital with an infection.
Reef - Leukemia - undergoing a bone marrow transplant - the youngest child in the country to have a bone marrow transplant - in total isolation with a rash and he is swollen up at the moment. His mother has flu and is not allowed near Reef until she fully recovers - Please pray for her speedy recovery so that she can be with her baby soon - she must be so anxious
Siyabonga - Lymphoma - out of ICU and back with the Peds team at Unitas.... he came down on Friday night and gave a weak thumbs up to everyone - on Saturday he started walking
Jordan - Spine cancer - paralysed - we pray that he remains cancer free and we ask that his mom gets answers regarding his legs soon. He is crawling on his knees at the moment so our prayers are for his FULL recovery - this little man deserves to run around....
Jono - Leukemia - currently he has blood clots
Tina - blood disorder - not doing well at all - her brother Mark died at the age of 8 with the same disorder - we pray for her healing - she is paralysed on the left side.

Rene - blood disorder - we pray that she continues to live out her miracle life - she was given 3 months to live - 9 years ago - she has had over 1000 platelet and blood transfusions... she is alive with zero bone marrow and continues to amaze the medical profession.
Erich - PMA - brain cancer - currently using quantronics and we pray for his tumour to remain stable...
Ithuteng - URGENTLY needs a bone marrow donor - Leukemia relapse.
Lefa - Stem cell transplant - currently doing well

I thought I'd just keep you all busy praying for the kids in need of prayers at this moment... there are many more but for now these are on my heart. These children and their parents have become part of our lives.

Please keep Socky Gwan (my aunt) in your prayers as she goes for her CT and Bone Scan today. Breast Cancer with spread to Liver - we have to have a clear scan! Attached is a photo of Jed playing with Vusi in his little pool. The picture was taken yesterday (just look how great Jed looks) at the gwans house (Socky and Funny)

Love and hugs
Bon

Loving being a mommy

2009-09-30T10:13:00.001+02:00

26th September 2009

Hi there,

I have been screaming for a break and I believe I finally have got one. YES! We went in for chemo on Saturday and Dr Reynders decided that Jed's platelet counts were just too low to go ahead with the Vincristine/Carbo chemo. Red cells were in the normal range at 11.5 this is largely due his blood transfusion last week but also explains his energy levels and fantastic mood; his white cells are just below normal range at 4.64 - higher than ever. The main concern is his platelets at 66. Generally we don't give chemo unless the platelet count is above 75. We had platelets available (thank you Barbara) but the doctor explained that Jed's bone marrow could become lazy and that "it" needed to work to get the platelets up without a transfusion. Now the up side to all this information is I HAVE A HEALTHY LITTLE MAN who is chemo free for a week. - there is a down side to no chemo but for this week I refuse to focus on that... I want to enjoy my son!

With this.... it means our isolation is not as strict; so we went off for a day in the sun and loads of fun at Jordi's house!!. We had a fantastic Sunday and one that will go down as one of my favorite days ever. The weather was perfect and the food was delicious. Ray and Wayne made a braai, while I swam with my little man. Jordi had two other friends over and it was amazing watching Jed interact with them. In fact, Nobi (one of the friends) is coming for a "sleep over" tonight. Jed is so excited. The simple things I once took for granted, like my boy playing with other kids..... I'm more excited about the sleep over than the kids!!! I have plans to make tents, a picnic, TV games etc etc!!! Attached is Jed and Nobi having a swim at Aunty Shell!

On Wednesday at 15h15 I finally get to see Dr Sneakers (spell??) at Milpark. I have been told over and over that this is the best neurosurgeon in SA. It has taken 4 long months of waiting to see him. i want to show him Jed's latest MRI scans and discuss what he thinks of the tumour location and surgery options (IT IS JUST A DISCUSSION) - at some point it may be a discussion Ray and I will have to re-open and I want to ensure I have the best on hand, who is well informed and willing to take Jed as a patient. I however, don't want a surgeon operating on a tumour I want him operating on Jed; the boy; the little man; my son and if I feel that he is in fact cold and distant we will return to Dr Weinburg. Treat the child not the cancer! Make sense??? To me it does.....

Jed has not complained much about abdominal pain lately... please keep praying that the blockage has just healed by the power of positive thinking and God!

Now onto a serious note, one of Jed's friends Siyabonga has been sent off to ICU. I phoned the ICU unit about 5 mins ago to find out how this precious little man is doing and I was told that he is slightly better than yesterday. The information is limited from ICU as I am not family (although I spend more time with the onco kids than my own family, aaaaaaaaaa)... This however does not mean that Siya is out of the woods, he still needs our prayers. If an oncology child goes to ICU they sometimes don't come back...... and pneumonia is taken very seriously if you don't have a strong immune system. I understand his mommies fears and I wish there was some way I could help her ...but the truth is if it was me sitting on that ICU blue chair I'd want everyone to pray.... so I hope that by asking you to pray for him - I am somehow helping her.... He is in my prayers today big time.

As always remember the J's - Jed, Jordi, Jaryd, Jono and our Reef, Lefa, Siya, Rene, Darian.... and every child and adult effected by cancer. Pray for a cure, pray for healing and pray for the parents!

Special prayers for Bob (Pattern Gwan's boyfriend) with cancer - he too is not doing well!

In God we Trust

Love and gentle hugs

Another hospital stay

2009-09-21T17:47:00.001+02:00

21st September 2009

Hi,

At around midnight on Thursday, we rushed Jed to Unitas with terrible tummy pain. We arrived and the sister on duty had to prick Jed 4 times before she got the port needle in to draw bloods. My baby screamed and cried with the most excruciating pain. I felt the same as always - totally helpless. At 4am he finally drifted off to sleep in his mommy's arms but rolled around in pain - even though the pain medication was at the max level. Friday we spent the day doing x-rays and a CT scan. Jed was given Iodine to drink but unfortunately he vomited most of it out (I don't blame him it tastes horrid). We did x-rays hourly to follow the contrast and then the CT scan but because the iodine was vomited out it was really difficult for them to read the scans clearly..... The doctor has not confirmed if it is a partial blockage in the intestines or inflammation in the intestines. He was treated for inflammation with cortizone, pain medication and laxatives. If Jed's tummy does not improve Ray and I will look for another opinion, as this seems to be a continuous struggle and we just don't understand the reason behind it..... - AS IF BRAIN CANCER IS NOT ENOUGH!

We arrived home just after 12h00 today and I'm still feeling rather anxious and angry.... yip angry. I don't seem to be able to shake the anger I'm feeling inside. Seeing Jed screaming in pain is torture of the very worst kind - and WHEN DO WE GET A BREAK - as he starts improving boom another bump in the road... kuk kuk kuk! Wish I could just scream ...................

Jed's blood counts look awful; red cells at 7.6 (transfusion was done); platelets at 58 (poor little boy) and white cells at zero!! So isolation and confinment!

I hope that the way I feel is going to ease up soon.

Please pray today for Jordi's MRI results. He went in at 6am - MRI was done from 8am till 11am.... Michelle and Wayne are now waiting for the results. I'm so nervous but I'm trying to be strong and positive for my darling friend. I do believe we will get good results and as Michelle always says.."In God we Trust".

Reef is doing better from what I understand; he has started to eat a little and his temperature is stable. The response to the platelet donation for him was amazing, thanks to everyone involved. Please keep this little man in your prayers too.

And the other's in the ward, Jono, Rene, Itutheng, Caiden, Siyabonga, and every child with cancer. We pray for medicine to advance and for everyone to be aware of this horrible sickness.

And as always pray for my baby boy, there is no greater love than this.

Attached is the reunion of Jed and Vusi....

Love
Bonni

Pain in legs

2009-09-14T14:12:00.001+02:00

14th September 2009

Hi there,

Jed's bloods looked good. Only concern is red cell count is down to 8 - I will just monitor this.

Jed's is having terrible pains in his legs. I was beyond stressed as I was convinced this was tumour pressure but after chatting to my on-line support group - I believe it is the Vincristine-chemo causing this problem. On Saturday Jed could not walk at all, and it was the most heart breaking thing to witness (makes me realise Michelle's pain watching Jordi). But on Sunday he started using the washing basket as a walk aid and pushed it around to take the pressure off his feet. After a hot bath, massage and some panado Jed was walking on his own by mid day. Today he is sore but is walking with the washing basket (filled with toys and Vusi) and sometimes on his own with his feet wide apart. I guess the doctor will need to decide if the Vincristine dosage may need to be reduced. PLEASE pray that this sorts itself out and that Jed is running around by tomorrow. Doctor suggested another MRI (if no improvement) but I'd rather wait. No more contrast in my son's body for a while if I can avoid it.

It has been a horrid couple of weeks for me and all of sudden I am afraid to be alone (freaky). Anyhow I have one of Jordi's helpers coming in 3 times a week to help me cope! She plays with Jed most of the day and just keeps me company. I feel that I shouldn't be having this kind of luxury given that I am not working but I need it for a while. I am just so paranoid and yes, scared! As soon as I feel up to it I will reduce her days but for now I just can't be alone; I even nag Ray to come home early... annoying Bonni. Jed is my joy, my life and not feeling confident to handle a stressful situation is heart breaking.... but for now i have help and I will be fine!

Please pray for Jed's legs, Jed's cancer, Jed's mom, dad and dog too.

Prayer requests for Reef (below is an update from his gran re his bone marrow transplant); Jordi (MRI on the 21st of September), Jaryd (Ewings Sarcoma), Lefa (ALL), Jono (ALL at the age of 16), and all the other kids (please include the angels Reagan, David, Kelly, William, Luther and Nicole)

Love and hugs
Bon

Jed's progress post appendectomy

2009-09-08T15:51:00.002+02:00

8th September 2009

Hi there,

Finally home!

Jed is doing well, I actually didn't realise that my son was so strong, he continues to amaze me. Jed is 4 years old and this appendix was his 7th operation (grommets, adenoids and tonsils, dental work, 2 9 hour brain operations, port, appendix with drains) ....my brave and amazing little boy. I admire him more than I have ever thought it possible!!

He is pain free and medication free. Our only concerns at the moment are his appetite as his weight is at 16.8kgs, I can't push or force him to eat as the food will just comes up or out (both sides are giving problems). I'm just giving him teaspoons of supplements and he is holding it down. One sip at a time. He is up and about, walking at a slow pace and today we will attempt a little exercise. Chemo went much better than we believed.

Please pray that he continues to amaze us with his strength and to thank God that Jed is with us. For anyone who does not believe in miracles read up about a burst appendix for over 24 hours; then think about it happening to a child with a white cell count of 1 and a red cell count of 9 that is on chemo - in other words no immune system. His infection marker was over 200 - only prayers and Jesus got that count down!

Also pray that Jed's tummy starts to work as it should. I won't go into too much details but my hands are raw from washing his shorts! A task that is my honour but it would be nice for Jed if this came right soon. He gets very embarrassed.

Vusi the dog is our little bundle of joy and Jed was delighted to see him. We have had to take a few precautions with Vusi but the vet has sorted it all out.... I refuse to take this puppy away from Jed as he now has a best friend to play with.

The list of people to thank is just too long. Granny Barbara for the love and support; Granny Pattern and Socky Gwan; La; Michelle, Wayne and Jordi; Alida (my sakka sak); the folks at Ster who prayed non stop; for Pastors Rameesh and Bokkie who listened to me sob on the phone and prayed with me; for the staff at Unitas; Ray (for all and more); Belinda (Jaryd's mommy); to each person who prayed non stop for Jed and sent messages... and to my little funny balloon mommy for taking care of me while I fell apart.

Jed is a miracle and we have to believe that there is a reason why God and his angels are looking out for him. One day when Jed is a grow up man we can moan at him for all the stress he has laid in our hearts...

I know that I would not be here if it was not for your prayers, love and support - no words left - just keep praying for us please. Watching your son going down fast can physically kill you... I think i almost died of a broken heart!

Special requests for prayers: Reef - bone marrow transplant today, Jaryd (Ewings Sarcoma with an infection marker and low blood counts), Jono (ALL), Darrian (in remission), Rene (blood disorder), Samuel (the little boy from ICU), Connor (AML), Lefa, Erich (Pilomyxoid), Tabs (brain cancer), and all the others..... thank you for supporting, and praying for these precious warriors!

In God we Trust.

Love Bon, Ray, Jed10 and Vusi (the puppy)
Attached is a photo of sleepy mommy, Jed and the "paws for people dog" that visited Jed.

Jed;s Progress

2009-09-04T16:00:00.002+02:00

2nd September 2009

Hi there,

Jed had a better day, he is breathing on his own but the lungs remain a concern. Physio seems very intense and painful - he tends to scream through the whole process. Especially on the side where the op took place. I feel like the bad guy lately coz I hold him still while they bang away at his lungs, prick him and drug him off to surgery.

I saw the cut for the first time and was shocked at how big it was (maybe Jed is just small and therefore it looks huge) - I asked why it was so big and the surgeon explained that as the appendix had burst the operation is different to the normal appendix operation. The drains were removed and that was awful; Jeddy screamed and he looked terrified. My poor little boy. He was screaming at me "mama why are you letting them kill me PLEASE HELP ME".... All I could do was hold his tiny legs and fight back tears.

Jed has had awful nightmares since we arrived and he wakes up screaming "no no no please no picking - help me please"... so I got a child psychologist to come in today. After a brief evaluation she explained that while Jed understands his sickness (like a 4 year old child can) and he doesn't blame me - he is suffering from intense pain shock. The pain he felt was so bad. I feel terrible for not insisting on an x-ray or CT for his tummy sooner. I wonder why no one explained just how much danger he was in, although I could see it (and feel it). When I asked why his lung collapsed, my answer was he was is respiratory failure... this is just all beyond me ....

As for the appendix I think now maybe it might be related to the cancer - I read something about stool blockage causing an abscess (Jed's was 7.5 mm) and his chemo does cause hectic tummy issues.

All I can do now is look forward, try not to focus on this last week and keep taking it moment by moment. He is smiling today and tried to walk but he is just too weak and thin at the moment. His infection marker is down to 29. Tomorrow the doctor will decide to put an NG tube in to feed him as he has no interest in eating. At this stage I'm willing to try anything but I really tried so hard to avoid it.

I let Jed paint my face today and wore the makeup with pride. I also took some of the money I (we) raised from the T-shirt sales and bought some goodies (for the coffee shop here....mmmmm) for the kiddies that have been with us this week. Rene got a pink bunny (blood disorder), Samuel got a huge big blue bear (9 months got a Trachea) and I made party packs for each child in the hospital. I got the ones who could move around to come to Jed's room and collect the goodies. It was very nice for him and I. I didn't take photos as I just don't feel at this stage it was appropriate - I just think imagine someone asked me for Jed's picture... so it was unconditional little smile toys.

For those of you who have ordered shirts - they are ready - I just need to collect them.

Please pray for our Jed, Reef (bone marrow transplant), Jordi (MRI coming up), Jaryd (Ewings Sarcoma), Rene (blood disorder), Connor (new AML patient), Erich (MRI showed small tumor growth), Siyabonga (not sure as he has been in strick isolation this week like Jeddy), Lefa (neuroblastoma), Ituteng (ALL), Tabs (brain cancer) and all other children walking this horrible road.

Thank you to Ray's colleagues at work that wear a gold ribbon for Children Cancer Awareness Month. Ray looked great with his ribbon on and mine is even on my Pjs. Imagine walking into your work place and eveyone you know is behind you showing support for your son by wearing a symbol of support - Gold ribbon for precious children. I thought it was so special and when we told the other mom's we all had a good cry.... (which seems to be what we do a lot together)

Jesus please continue to hold Jed in your arms, and Lord I thank you for his progress under your protection!

Attached is Jed and Edith is favorite nurse!

Love
Bon x x x

Faith in the face of adversity

2009-09-01T08:21:00.002+02:00

31st August 2009

Hi there,

Ray bought my computer quick so I could send out an e-mail. Even my fingers hurt as I type.

Briefly

Thurs 26 - Jed complains of pain in his tummy and head at 2h20 am. 4am we leave for Unitas. at 6am Jed's fever starts to climb, he has a seizure with a temp 39.5 - his body goes into septic shock. He hallucinates seeing fairies, popcorn, ants and a golden bridge... the "blue team" are called to Jed's room. Sister Hannie and Sister Elize work with extreme speed with the "blue team".... I watch as Jed's starts to slip away from me.... Doctor believes (as we all do, it is brain related), bleeding on the brain, fluid blockage - due to temp.... meningitis.... the panic doesn't stop - (I just vomit and vomit... I'm helpless.... useless....) More blood tests, x-rays, CT scan of brain.... nothing is confirmed.

Friday - no change, Jed's condition gets worse. He is screaming and non stop in pain. Doc decides to look for infection cause again (ruling out the brain and port needle), sonor done - appendix has a cystic formation, X-ray - confirms there is a problem - CT scan confirms the appendix has burst and Jed is getting weaker. The appendix burst "about" 7am yesterday. At 16h00 Dr does surgery... It is explained that as Jed has no immune system, low blood counts and his lung has collapsed from septic shock the risk is huge. 17h06 Jed is out of surgery and dr sneaks me into recovery, Jed is alive..... ICU for the night. (I confirm, it is possible to sleep standing up alert and with your eyes open)!

Saturday - I nag to move to oncology ward as ICU staff have NOTHING on our onco ladies....I'm missing my nursing team who know me (my stress levels) and my demands (each teaspoon of medication is explained to me). In onco we hug and tuck each other in at night. Jed's infection marker climbs after surgery.

Sunday - Lungs are weak, weak, Jed is breathing with the help of oxygen... He is suffering and the pain is breaking me. Infection marker 199 - Jed is limp, weak and sick. Sicker than I have ever seen him (including after both brain surgeries).

I picture, those huge big balls that knock the old building down.... keeps banging and banging at me (i'm the old building) - I can't run, I can stop it, I can't move - just gotta take each blow until it stops... I wonder if my core foundation is breaking through this!

Monday - after praying and begging everyone to pray his infection marker is at 78 - this drop is beyond the doctor (thanks God).... Jed starts to show signs of breathing patterns improving (no oxygen at times). The drains (in tummy) are still full of fluid and today marks day 4 of Jed eating and drinking nothing - yip he is getting fluid through the drip but as we all know Jed does not have any fat to lose!!!! The "banging lady" (Physio) shows no mercy - bang bang bang!

Chemo is out of the question - week 5 no chemo (cancer.....)

And that is were we are at this moment! Somehow brain cancer was just not enough for Jed's body... Burst Appendix which is TOTALLY unrelated to cancer is what is currently hurting my little hero. It just goes to show we are NEVER sure of what lays around the corner... I never ever believed Jed's appendix was in trouble. The doctor has confirmed that Jeddy was in excruciating pain and still is sore (however managed better now)

Please also include Reef (prep for Bone Marrow Transplant underway - cancer marker is at about 3%) and Jordi (MRI coming up on 21 September) in your prayers. Now add Johnathan (our new 16 year old), baby Myburgh (our new 1 month old), Siya, Lefa, Darrian, Erich (MRI scan on Wed), Tabs, Jaryd (Ewings Sarcoma - prayer for Belinda his wonderful mommy who is not dealing with the news well), Luther's mom and dad, Connor (ANOTHER new child) and all the children with cancer.

PLEASE also remember that September is Childhood Cancer Awareness Month - Gold Ribbon - please wear a piece of gold ribbon for my baby his friends.

Please please pray that God fixes Jed and thank you for the love and messages!

Love from
Broken Bon x

In the olden days

2009-08-25T12:08:00.002+02:00

23rd August 2009

Hi,

I sit here and wonder if in 10 (or 20) years time a mother of a child with cancer will say... "did you know that about 10 years ago mother's gave consent for their children to have chemo" and mother2 would say with horror in her voice "I actually heard about a mother of a 4 year old boy who actually gave the chemo tablets to her son!!!" and the mother1 would reply "could you just imagine how stupid and desperate that mother must have been to give her own child poison!!".... God I pray for a cure... I just don't understand why poison is the only treatment protocol. We send men to the moon, fly across oceans and yet we can't cure cancer! I was reading in my Brain Tumor Mom's Support Group that you are advised to wear gloves and a mask when giving your child oral chemo (this was our first treatment back in Feb) to protect yourself from the toxic chemo. You should also wear gloves and a mask to clean up "chemo" vomit. Well oops...... chemo vomit has been my perfume for months now!

We didn't do chemo this week as Jed's platelet count was only 29. The chemo has suppressed his bone marrow so we will have to wait to see what the counts are next week. I pray they are good as I know that the treatment is essential. His blood counts have not recovered in 3 weeks and this is a huge concern for me.

x x x
Heaven got another angel this past week. Nicole - please pray for this child's parents!
x x x

An update on my little Childhood Cancer Awareness Drive... I have raised a little money so far for the kiddies. I am hoping to give each child a teddy (as seen in the picture). The teddy shirt will read "I wear gold for my hero" Gold being the childhood cancer ribbon. If anyone is interesting in supporting this drive please buy a shirt, cap, badge or teddy. ALL THE PROFITS will go to gifts for the children at Unitas hospital. I'm hoping to raise enough to get each child a teddy and activity toy. If you don't want to purchase anything you can donate a toy. I don't have a separate bank account for this and it is not an official fund raising thing, it is just a small token for these kids. Some of the moms have asked for a shirt so if there is any money left, I will give them a shirt. Many of these moms (like me) no longer work so it would be a nice gesture from us. I think I'm doing this mainly to keep myself focused on something positive - when living in a nightmare you need to keep your eyes on the sunshine. I read in a book (my sister's keeper), "I'm building Sun Castles while waiting for the Tsunami"

This weeks prayer requests:

Reef awaiting Bone Marrow Transplant - Cancer Marker must be below 2% by Wednesday (some of us will be fasting on Tuesday and praying)
Jordan MRI due on the 21st of September 2009 - we also pray that he recovers the use of his legs
Erich - MRI due on Thursday (same tumor as Jed)
Luther and Nicole parents..... angels R.I.P

An our Jeddy - for platelet counts and for NO tumour GROWTH - hec pray for NO TUMOUR AT ALL!!!

And all children and parents affected by cancer.

With love and hugs
Bon, Ray, Jed and Vusi (the puppy)

In God we Trust

2009-08-16T04:53:00.003+02:00

At about midnight last night Jed got a sudden fever of 38.5 - is it not amazing how a mommy just knows. I woke up suddenly, put the light on and took his temp. Ray and I rushed him to Unitas... just before we left he did a huge pooh and it was ikki, blood coming out of his little bum and lots of screams of pain. Constipation is due to chemo and generally a poor diet. By the time we reached Unitas the fever had broken (I had already given 8mls of Panado). The blood results showed no infection. His reactive protein marker was less than 2 (anything above 5 indicates an infection). Other blood results; Haemoglobin (Red cells) at 10.2 (normal is 11 - 15), white cells at 5.97 (this is an escalated figure from the daily neupogen injections I gave Jed), and platelets are very low at 38 (this means lots of bruising). I am confident that his blood results will improve this week as we did not do chemo this Saturday. Next chemo is 100% Carbo (no longer the reduced dose) and Vincristine. Dr Reynders was amazing last night he spoke the nurses through what to do. So basically we rushed Jed to hospital due to a huge chemo pooh. Honestly to watch a 4 year old give birth to a pooh is very sad to witness but all part of the journey to recovery. We got home at 7am this morning with a happy little boy!

I have had a bit of an emotionally hectic time since the MRI. The build up and then waiting for the results is just too much for any parent to have to go through. I've been feeling very down and just to be honest I was so hoping for shrinkage. We are still dealing with 3cm..... I decided to make an appointment to see Dr Weinburg at Linksfield and have him go through the MRI report and scans with me. I wanted to compare the last scan with this scan from a neurosurgeon's point of view. Dr Weinburg did both Jed's brain operations. He was very positive about the MRI results and explained that at the last MRI the tumour was in 3 nodules and this as I understand it, is 3 growth points - the main one being at 3 cms. He could not clearly confirm that the nodules were still present (due to contrast issues) but he said the fact the tumour is not growing is "beyond medical science" - aka "a miracle".... let us prayer that this is beginning of my son's miracle and that soon we will see NOTHING on our MRIs. We spent a little while discussing the removal of the tumour (another operation) and he confirmed that surgery was not an option for Jed at this stage. He also mentioned that Jed's brain fluid was doing its job (no shunt needed) We discussed Jed's shaking in the hands and twitching legs and he explained it was damage from the surgery. I am blessed that this has been the only side effect and Jed is managing fine.

On the 30th of September I have an appointment to see a doctor Dr Sneakers - A neurosurgeon from Milpark. I would like to discuss his point of view on the tumour and will present him with the next MRI results (MRI number 7). I have heard that Dr Sneakers is one of the best. Seeing a neurosurgeon costs about R500 but I can honestly say it is money worth spending, I just feel like I understand the results better.

September is Childhood Cancer Awareness day and I have decided to try raise a little money to buy some "things" for the kids at Unitas. When the children go for chemo they generally spend 3 days in hospital a month (this is not counting the weeks they have infections) or if they are like Jed they spend every single Saturday at hospital. I'd like to raise some money to buy a few things like beading, fabric painting, lego, scrap booking, stamp pads and some little awards to hand out for the brave kids. These kids generally don't go to school so the joy of receiving an award is often unknown to them. I think a little medal or a sticker would go some way to helping encourage them. The nurses could give them out after major treatments, operations or bone marrow transplants. If anyone is interested in buying any items please let me know. I am also going to be selling T-shirts, caps and badges. The t-shirt will read "I wear GOLD for my hero" with a Gold childhood awareness ribbon on it. Everyone knows the red ribbon is for AIDS, the pink for Breast Cancer but how many people know that GOLD is for our little hero's that fight during their childhoods. I will also make a few T-shirts for the kids (if I have raised enough) that say, "BALD in the new cool" with a little Bald stick man. I have already paid for the artwork to be done and I am hoping to have samples by Monday. Please let me know if you would like to buy a shirt, cap, badge or donate a gift. Any gift ideas are welcome. As soon as I can the samples I'll send out an e-mail. T

And in other news, I got Jed a puppy, he named him Vusi, so there is a new addition to our little 10 family. Totally an impulse decision. As Jed is not allowed friends this little puppy is his new best friend. At the hospital last night Jed was screaming at the nurse to hurry up coz his puppy was waiting for his dad. I am now a granny!

And lastly, Jordi's chemo and treatment protocol has been completed which means his parents have booked his MRI - the date is 21st September 2009. I am going to request that we fast before his MRI for a day, to pray for Jordi's MRI results and for strength for his mom and dad (Michelle and Wayne). This will be their first MRI since Jordi's surgery, chemo and radiation. In fact we can all just fast for a cure for cancer too. No family should ever endure cancer!

"In God we Trust"

Love
Bonni, Ray, Jed10 and Vusi10 (the doggie)

No greater love

2009-08-03T12:17:00.000+02:00

3rd August 2009

Hi,

As i'm typing i'm fighting the urge to let the lump in my throat burst - I'll be wailing like a African mama at a funeral... I tell you the urge to explode is there.... I fight the physical pain in my chest with every key stroke... and the reason.. MRI... breath MRI.... breath... MRI MRI MRI MRI.... an MRI is our cancer marker... how is the tumour doing? We booked the MRI for the 5th of August 2009 on Wednesday... Please pray for wonderful results...please, please, please..... splash splash (my silly tears)

Jed had his big chemo although his blood counts are still super low the doctor advised that we could not delay for another week. Jed had 80% of his Carbo and the full Vincristine. He vomited lots during the night on Saturday but has been very chirpy today considering. Jed continues to amaze me with his determination and strength. On Wednesday I will start to inject him with neupogen (this will assist the bone marrow to start working).

Today I spend the morning at the craft shop and had coffee with Janet. I've missed this over the last two weeks... I felt I needed to get the break but I did spend 99% of the time with a massive headache from the stress of being away from my boy... Lucky for me, Janet knows me so ignored my pounding headache and chatted away about the "little things". As we walked out of the coffee shop i saw a mom with her son walking casually past us... I then asked Janet if that women knew how lucky she was that her son was healthy.... Janet said "No buddy, not unless she knows you or someone like you". Please don't ever take anyone for granted.

....lots of people have said that they don't know what to say to me... I'm at that point as I type the next part of my mail... To Becks (Anthony Beckley), Shirley Beckley (his gorgeous wife), Brian Hull, Chuck and Yunita Mowray thank you so very much for paying for Jed's MRI on Wednesday. Knowing the status of the tumour means knowing if our treatment plan is working.... you may be saving my babies life... how could I ever say thank you... thank you just doesn't seem enough....so no "right" words but know how much we appreciate this wonderful wonderful gift! May God Bless you for this! Anthony please don't be grumpy for the public mail... I just love you guys and I can't do anything else but tell you this way so let me just have this little moment to tell the special people just how wonderful my friends are....

Attached is my PERFECT boy, perfect in every single way.... no greater love!

Love
Bonni, Ray and Jed10 000!

One Year

2009-07-26T21:10:00.002+02:00

23 July 2009

Hi there,

On Thursday it is one year that my wheels started coming off. I got the call at 19h00 from my hysterical mom.... "Larry has had an accident on his motobike and I don't know what happened" she was sobbing, screaming and generally being a mom in crisis. I was sitting having my second bottle of wine and debating what to do... Pietermaritzburg to Johannesburg after one and a half bottles of wine ..mmmmm with a baby in the car. I then phoned and got to speak to the chap in the ambulance and was told it was a "P1" case... I remember saying what does P1 mean? and he said PRIORITY ONE - your brother could die. I went crazy... I remember kicking the cupboard door down and sobbing uncontrollably. Over and over I kept thinking, this can't be happening I have already lost my brother Robin, please no no no ..... I arrived in JHB at 3am on the 24th of July and saw Larry laying asleep and "fighting" for his life. I remember thinking "nothing could be worse than losing my brother..... nothing".... 8 days later my son was diagnosed with a 6cm brain tumour! My two favorite boys both having head troubles.

So Jed and I decided that the 23rd of July 2009 was not going to be a sad day and we were going to some how make this a celebration of life. Socky Gwan (my aunt) was coming to visit and it was her birthday the day before. Funny Gwan had to stay behind as she had a slight cold. Socky Gwan is in remission from cancer which spread to her liver. Socky is our miracle. Jed and I decided to throw her a surprise birthday party. We made a huge Soccer cake, cookies, cup cakes, and loads of yummie snacks. Pastor Bokkie and Socky arrived early and we had a wonderful day. The 23rd of July 2009 was a wonderful day of love with my beautiful family. See picture!

Jed's blood counts were low - too low for chemo so yet again we skip another week. I don't have to explain my feelings on this as I am sure you all understand that I'm nervous about the tumour growing without the chemo. I just have to believe that if the chemo is this toxic the cancer must be having a hard time. I have to monitor my son very closely as his red cell count is at a dangerous 7.5 - the red cells carry oxygen. We take it day by day and if need be hour by hour. He has also been vomiting which is confusing me as the chemo is on hold. I do know that the side effect of his tumour was vomiting. I'm trying not to dwell on negative thoughts (this is taking loads of energy).

Jed's weight has dropped by 600 grams - he is back at 18.1 kgs. It takes me a full week to build up 100 grams but he can loose 600 grams in a week. I went looking for food supplements without more than the RDA nutrition (due to his treatment) and every dam item at dischem was about weight loss. I tell you there are too many fatties on this planet. You buy cheese and the heading says LOW FAT - yoghurt LOW FAT - I search my butt off for FULL FAT and HIGH KILO JULES. I'm trying not to stress about the weight loss - Jed had a active week last week.

I'd like to end my weekly mail on a lighter note. Jed's facebook site hit over 1000 members this week. I don't know 1000 people and although my friends and family were eager to join, it was amazing to realise the response on his "save little jed" site. I only send this mail - the facebook and blog site is the work of my Socky Aunt and mom. Anyhow I phoned my mom and said that I just could not believe how many people had joined the site. I was so grateful for the response as in my heart I hope it means they are praying for my baby. Anyhow my mother lets me in on her secret. She has been going on the site "Are you interested" - it is a chat room on facebook. She puts herself "out-there" and then when the millions of men show interest - she stalks them into joining Jed's facebook site. There is honestly no limit to a mother's love. Bless you my mommy!

I ask with all my heart that we pray for Jed's counts to go up naturally without blood products, we pray for a clear MRI in two weeks and we thank God for the miracle of Socky and Larry.

A special thank you to Barbara for the platelet donation!

With love and hugs
Bon, Ray and Jed (aka The Tens)

Continue to pray for Jed 10

2009-07-19T21:07:00.001+02:00

19th July 2009

Hello,

The vivid honest truth is my little man is not doing great. He looks exhausted, pale and weak. He looks like a child with cancer! His treatment of Carboplatin was not given this week as overall his muscle tone, reflexes and blood counts were just too low.

Red blood 8 (normal 11 - 15) - below 7.5 is a transfusion - this explains why Jed is tired and so pale, white cells 1, and platelets at 31 - normal range is 200 - 450. I wondered why we did not do the platelet transfusion as from what I have read anything below 40 - you run the risk of internal bleeding - the doctor explains that we need to protect Jed from too many foreign blood products. It is at the point where almost every week we have had to give him blood or platelets. A special thank you to Dale for coming to my rescue and donating platelets for Jed - although it was my turn there is no way I would have been able to travel that far away from Jed. Dale I can't tell you how much Ray and I appreciate your donation. We have requested that your platelets be used for another child (as you know the demand is so great). A very dear friend of mine Barbara has offered to donate this week and that will free Ray up to do a blood donation for Jed.

Our pray for Jed, "

Lord I pray for Jed's immune system to grow stronger day by day. I ask that you protect his 18.7kg body from all infections. The same Spirit that raised Jesus from the dead dwells within Jed. With your grace and power Lord, heal him of his Pilomyxoid Astrocytoma brain tumour - guard his body and give him complete health. Please Jesus protect him from nausea and give his legs strength to run and play! Lord bless his mommy and daddy with a healthy son. I ask you this with my whole heart Lord please! I thank you for healing now Lord!!!!!"

Amen

You see I will get you to pray - just by reading these words you have prayed for my baby boy!

Thank you to Cousin Rach (I love you); Aunty Thelma, Zelda and Meg and Michelle (Jordi's mom) for the love, support and presents. Michelle the big cardboard box was a wonderful idea, we have made a super cool house with it!

No new pictures of Jed today as he is not his normal sexy self - so decided (once again) to place a baby boy picture of Jed (aged 7 months) taken in Egypt when visiting Anthony and Shirley Beckley .

Love and special hugs
Bon, Ray and Precious Brave Jed10

Thanks Andre for platelets

2009-07-12T21:56:00.002+02:00

12th July 2009

Hi there,

Jed's blood results were no surprise, I knew the platelets were dropping as he had some very bad bruising... he looked like a little abused boy. His legs and butt were black and blue. Platelets were at 24 - his nose had just started bleeding when we got to the hospital. It was such a relief to know that we had clean platelets ready and waiting. Thank you so much to Andre Beaud for making the donation on Thursday. Andre you have given the greatest gift to my son. I am however monitoring the access to all computer equipment around the house... as i'm typing Jed is grabbing at my keyboard... it's Andre's genes from those platelets i'm telling you! His red blood was also below normal at 10 but this was good (for Jed) and due to the transfusion last week. White cells remain at zero... He had neupogen to get that bone marrow working so we hope for an increase. His legs seems sore today from the way he is walking but he is not complaining of any pain (he definitely gets that from my side of the family!! - and the sarcasm floats into the virtual world)

I've had a few down days but it is all Jed's fault!!!!! - he has been asking me very real questions. He really is super smart for a radiated 4 year old. He asked me on Saturday "mama when are my ballies going to be gone?" now I never lie to Jed, I tell him the truth as much as he can understand.... my answer was "baby the ballies are no longer 3 ballies and you only have one but it is still big so we need to still fight it with the doctors and the yukkie medicine" - he seems very disappointed with my answer. It is heartbreaking as the older he gets the more he is understanding that he is different! So i'm even more in love with him and holding him closer than ever, my precious darling baby boy who is my world.

I did my therapy session today... craft shop and coffee with Janet. Ray went to deliver a parcel to DHL with Jed - off to DUR overnight no doubt. I would not allow him to use another courier company and "we" were the cheapest for the Sunday handover!!! I enjoyed the coffee and told Janet when I was getting anxious and she told me in her strong no kuk voice that this was good for JED. She mentioned that I was with him 24/7 and me having 2 or 3 hours away from him was doing HIM the world of good. mmmmm, I did look forward to the break and it is wonderful to sit with someone who knows what I am are thinking and I don't have to pretend to be brave or strong, so if I break it is okay... she is my safe "person" (and best friend) and I thank God for Janet Beaud and her hubby!

Please prayer for Jordi who is in hospital for an infection (spine cancer), Jed (brain cancer), Uncle Bob (cancer), Andi's dad (throat cancer), Tabs (brain cancer), Angelica (brain cancer), Lefa (bone marrow transfusion), Henk (leukemia), Darrian (leukemia), Jolene (brain cancer), Kathlyn (brain cancer), Reef (leukemia),Katheryn (brain cancer), Connor (brain cancer and spine) and the new child that came in last Saturday (not sure of her name but it sounded like tummy cancer)

Attached is a picture of Jed receiving the Andre's platelets! It is my turn this week, and I will be donating for another child as I know that Jed should maintain his counts at least for another week - please feel free to join me anytime!!! I will continue to drive this forward.

With love and hugs
Bon, Ray and Jed "The Tens"

Blood again (gummy berry juice)

2009-07-06T15:39:00.002+02:00

6th July 09

Hi there,

This past week was a little difficult with Jed vomiting and a runny tummy. I can't seem to keep up, constipation versus runny tummy... we hope that this week will prove to be better. This weeks blood results were surprising to Ray and I. The directed platelets had arrived (thanks to Trevor) and we were told that Jed would not need platelets although his counts are super low at 68 but it is red blood again this week as his count was at 8 (normal 11 - 15)... Jed is showing signs today that his platelets are dropping with some bruising on his little butt and back. I am monitoring this and will ensure he is kept still and that playtime is more relaxed. He was given the blood transfusion and we left Unitas just before 22h00 - another long day for "The Ten" family. Jed has been doing well since the chemo and we are blessed again that he is up and about! He is not complaining of any pain which makes mommy's heart very happy! Ray and I have requested an MRI to be done and Dr Reynders has agreed to one being done in 6 week. If there is one thing I have learnt about a Pilomyxoid it is NO two tumors behave the same, no cancer, or child can be compared to another... You may have the same diagnoses but no cancer is similar to another (just what I have read). I no longer look for "happy" stories I just pray for a cure soon. Please can we pray that God neutralizes the source of Jed's cancer; we pray that the doctor has given the correct chemo to knock the tumor right out; we pray for a clear MRI and that Jed is totally healed from cancer and that it never returns to his precious little body. We pray that there are minimal long term side effects from the intense radiation and the chemo. And I pray that you all continue to use the power of prayer though the Holy Spirit and my son is blessed with a long and happy life! I don't really have much news this week - but I did go out for a little while on Sunday with my friend Janet. I went to get some more "home schooling" things for Jed and some activities for him, some paints, games and storybooks (things he can do whilst keeping still). We enjoyed a cup of coffee and it was actually nice to be out - Janet understands I become anxious so she is so considerate and will always ask if I'm okay and if I want to go home to Jed. I thank God for wonderful friendships, and everyday we share with Jed - not one minute is taken for granted.

With love

Bon, Ray and Jed x x x (aka "The Tens")

Ben 10 day out

2009-06-28T20:51:00.002+02:00

29th June 2009

Hello there,

It was wonderful to step out of Planet Cancer and enjoy a day of fun at the Ben10 exhibition at Gallagher Estates. I believe my sister and the gwans nagged the world until this dream came true. When Nicole phoned she said that Jed could invite his best friend - we decided that Jordi would be the best one to take with us... as every other kiddie we know could attend during the normal exhibition times.

We arrived at 7am and both Jed and I were super excited. Jed was dressed warm in his Ben10 jacket from the Cape Town team. Nicole from Gallagher met us at the gate and we entered through the loading area. Everyone was expecting the boys and we were treated like royalty. The area was cleared to control infection for the boys and they had the opportunity to enjoy every part of the Ben10 experience. There were jumping castles, trampolines, swings that went up and down inside the jumping castle, Ben10 movies, photo booths, games, a magic show which was done especially for Jed and Jordi and so so so much more. Jed ran around so excited - I could hardly take pictures as he was all over the place. As we moved around, the area was cleared of people (crew) so that there was no risk of germs for the boys. Nicole never left our side and made sure that we were kept happy at all times. Jed really took to her and was playing with her none stop. She is so beautiful inside and out so my son has great taste! We also got to meet "Four Arms" and "Accelerate aka Faster Guy", Jed clung to me like a monkey as the characters came close and kept his distance. He was honestly more interested in playing with Nicole. We left just before 9am and it was one of my best days ever. I had tears of joy watching Jed having such an amazing time. The management team also arranged a Ben10 gift pack with bedding, curtains, clothes, towel and a Ben10 puzzle - all with the super logo on it... Jed and Jordi must have felt so special. Jed is still talking about how much fun he had. I just can't say thank you enough for those who made this possible for my boy.

And in other news....

Ray's platelet donation went perfect on Thursday. Jed did not require platelets as overall his counts looked good. Platelets 122, Red at 10 and his white cells - immune fighters are still at the lowest levels but we are mostly indoors so I am not too concerned.

Michelle and I decided to take Jed and Jordi out to a toy shop after the Ben10 show to get him a Ninja Turtle truck, Jordi has one and Jed really loves it. Michelle suggested we go to a massive warehouse type toy shop to avoid people and we go mid day while most people are at work. Not only did the boys get to meet Ben10 but also choose a toy each. I did use the fund card for Jed's toys. He decided on a Turtle Truck, a Turtle mask, and some fighting gear (for war with dad). The toys came to about R500 and I haven't bought him much in a while so I hope no one minds that I spent some of the fund on toys. It was wonderful seeing Jed deciding on which toy to get.

A special thanks to my sister Shelly, Anthony and Norms for the support, love and gifts. I love you guys. Norms the Ben10 poster is awesome!

It was big chemo on Saturday so today we have had to deal with Jed's runny tummy, vomiting and generally not feeling great. He also has a rash on his chest that is irritating him slightly. We just pray that the chemo effects settle soon. I am speaking to a couple of other parents of children with PMA - the support has been amazing, the hardest part is when you realise the other children are not doing well; each day remains a blessing and a miracle. Please keep praying!

Overall, this has been a blessed and wonderful week, even the blood counts played along.

Attached is Jed and Jordi watching the magic show, Nicole is sitting behind them!

With love
Mom10, Dad10 and Jed10

Gummy Berry Juice

2009-06-22T11:09:00.002+02:00

22 June 2009

Hi Jed10 supporters,

So much news this week - will try keep my therapy session short....

First and most important chemo and blood results: Haemoglobin/Red Cell count was VERY low at 7.4 (Normal 11- 15); White cells also very low at 1 (normal 5 - 15) and platelets were 98, which is low but I was very surprised by this one (Normal 200 - 450). Jed needed a blood transfusion - the red cells carry oxygen so this explains why little Jed was very breathless after doing a little exercise and very pale, even his lips were snow white. With counts this low we are very much in isolation and Granny's are back to wearing masks! It is really ikkie living like this. We have decided to do direct donor blood - blood holds for 30 days so we need to pay for it to be processed and stored. I believe it costs around R2500 (we are okay for money and if we use the blood the medical aid does pay most of it!). Ray will do the donation after he has done his platelets. Ray is doing platelets this Thursday and then he will do the blood 3 weeks later. Jed's transfusion should hold that long. Platelets are fully covered by the medical aid as if Jed does not use them they go to another child... where (for whatever reason) it does not work the same with blood... I will find out more.... this is all so new and i'm learning daily!

Jed is eating today and playing - so the blood has given him the much needed boost! We call the blood "gummy berry juice" so he is bouncing around coz he had lots and lots of "gummy Bewwy duice" and it took ages (4 hours to do a blood transfusion - platelets only take an hour)...

I did my platelets donation on Thursday knowing full well that Jed would not use them. I've got really good at knowing what Jed will need; as in Platelets, Blood or Neupogen.. I knew he would need Blood... anyhow all went well, I did faint but it was over very quickly and the team took good care of me. My blood pressure was really low at 70/50 and it was actually at 90/60 when I started so it took some nagging to allow them to put me on the machine. I have booked for 4 weeks time and I'm looking forward to helping Jed or another child. The day after my donation I felt really good. I believe that I fainted mainly due to anxiety from being away from Jed for so long and my poor diet plan!!... Remember Andre had NO SIDE PROBLEMS!! Think of what Jed goes through EVERY WEEKEND!!!! Nag nag nag nag.....

Jed's hair started to fall out like crazy last week, it was a HELLO REALITY CHECK for me - I decided to cut it really short to avoid the patchy look.. I cut on a No 3 and he is looking super cute. I was actually told that Jed's hair won't fall out with his treatment plan but the doctor says all kids react differently. I don't mind his little head being bald it is just I don't need another in your face reminder! - See our cute Jed10 with his new hair-do!

Jed weight is up by 100 grams - he was 18.1 kgs, but yet again there was a build up of pooh, it was 3 days since the last time his tummy worked. If I give him the med's for constipation he gets the runs so I'm still working out the perfect dosage. His tummy has worked today for the first time so I might have it right. Can't do too much meds, bum eina, can't do too little, doesn't work, pooh goes hard, bum tears, from lining being weak from chemo - bleeding butt is not fun for anyone.

Andre and Janet Beaud welcomed baby Nicolas on Friday night. Ray looked after Jed and I went through to meet the little man, he is gorgeous and so perfect. Janet is doing very well. Nicolas was born at 2.4 kgs. I sat holding him and thinking of Jed when he was born, the dreams we have for our children..... that I still have, and that I hold onto all the time..Lord heal my baby please!

My sister, Lulu (Shelly), sent an article to "Your Baby" and it was published in the letter section in the July Issue on Page 8, it is actually what I wrote for the blog. Thanks Lulu, you never stop amazing me with your constant dedication. I see your next mission is trying to get Ben 10 to make a private visit with Jed. I love you Lulu!

Happy Father's day to all the daddy's out there, remember how precious life is and how blessed we are to have our wonderful children. Dad, to you I say Happy Father's Day and although you can't speak about what is happening I somehow understand... no words are okay daddy.... just know I love you!

Ray, you are the greatest dad!!! Thank you for dedicating every single weekend to chemo, for cleaning vomit/pooh with me, for holding Jed's hand and keeping him happy through the craziness we face... thank you also for taking us into your home and supporting us! Thank you for playing Ninja Turtles on PS2 over and over until it drives you nuts whilst pretending it is the greatest game on earth; thank you for sword fighting before you have even sat down every night; thank you for playing doctor/doctor (a game that Jed is way too good at) .... Thank you for being my friend after all we have been through.... You are the WORLD'S GREATEST DADDY!!!

And..lastly, please pray for Jed, Braidy (who has brain surgery on Wed, we are fasting on Tuesday for him), Larry (my brother), Erich (also a Pilyomyxoid, that he regains the use of his leg and arm soon!!!!) and Jordy (he has chemo on Friday again)!

With lots of love
Bon, Ray and Jed x x x

Chemo No 5 - 76 left

2009-06-15T11:28:00.002+02:00

15th June 2009

Hi,

Jed's chemo went very well. No vomiting. Your prayers are working!!!!

Blood results: White cells at 2.06 (Normal is 5 - 15), his Neutrophils and Lymphocytes (Viral and Bacterial fighters) were VERY low so he had a Neupogen shot - this brings up the white cell counts; making the bone marrow work harder.... Red cells at 9.3 (Normal is 11 - 14), this is slightly low but does not warrant a transfusion - just means Jed will be a bit tired this week and grumpy. Platelets were at 125 (Normal is 200 - 450), Jed did not need Andre Beaud's platelets as they only do the transfusion if the platelets are about 40 or below. They try protect the kiddies from foreign "blood" products as much as possible. Andre's platelets were there and ready but would be used for another child. What a gift!!!! My platelet transfusion is this Thursday and I am 100% sure that Jed will not be needing them as his platelet count is very "good". I'm donating for someone else and yet I'm just as excited to do it. I'm hoping that you guys find it in your hearts to start donating for these children too. Please... nag nag nag.... If you want any more information on this please call me anytime or just drop me a mail. This is my way of promoting something we can do that can help Cancer Children live a longer a better quality of life.

Jed gained 200 grams, i'm sure this was a massive pooh as his tummy did not work for 3 days, but as Judy the dietitian was congratulating me I decided to suck up the credit for it... I have worked very very very hard on his eating and I enjoyed the praise. Jed is now 18kgs... 2kgs from goal weight! Jed's supplements for the week cost me/us/you R368 - I thought that was rather expensive for a little guy but they are working so it is worth it. Although I'm moaning about the expense it is Jed's fund paying and not me! I got the name of the supplier of the supplements and they agreed to give it to us at a much lower price (so if you know of anyone needing supplements I have contacts)

Jordi is out of hospital and back home doing very well! Thank you to everyone who prayed for him during his stay in hospital. I saw Michelle on Friday and I think she lost about 5 kgs while Jordi was ill. She really looked thin (gorgeous but thin)... I'm still living on Jed's scraps so my weight is rather healthy.

As for me, I'm doing okay, been crying lots this weekend and trying to figure out the answer to my questions of ...why me, why ANY of these beautiful children.... bla bla.... just feels like i'm living a nightmare and that at any moment someone is gonna tap me on the shoulder and go.... ha ha just kidding this isn't your life...wake up wake up!

Please keep praying for us and keep our faith going....

Love and so many huge hugs
Bon, Ray and Jed x x x

Chemo been reduced, Jed doing well - medal still around his neck

2009-06-08T15:58:00.002+02:00

8th May 2009

Hi there,

I know if I don't write this on Monday my Jed10 supporters start to worry.

I have WONDERFUL news..... Jed handled the chemo VERY well. The doctor was concerned that the Carboplatin was actually just too toxic for Jed's little body so he reduced the dose. This will give Jed's body time to recover from his infection. As time goes the doctor will increase the dose but hopefully by then Jed's body will be able to handle the full dose of Carboplatin and Vincristine. His treatment plan is week 1 (Carboplatin and Vincristine - aka BIG CHEMO) then 2 weeks of Vincristine only, then week 4 (Carboplatin and Vincristine - BIG CHEMO) then again 2 weeks of Vincristine only,..... the cycle continues for 81 weeks with a break on weeks 13, 17 and 21. Cycles start in week 25, 31, 37, 43, 49, 55, 61, 73 and 79. So we have done 4 weeks of chemo. The side effects of Jed's chemo are; Carboplatin - Bone Marrow Suppression (this is why he always needs blood or platelets), Nausea and vomiting (and boy does he suffer with this one!!!); Vincristine-causes constipation (hence the infection), hair loss (already started), pain in the jaw (not complained of this), tingling fingers and weak ankles (this is also why he sometimes doesn't walk well).

and the best news is.... that Jed gained 200 grams last week and is now 17.8 kgs. I give... me me me all the credit for this, I have made more picnics, clown faced bread and yum yum milkshakes then ever before. I am still acting as the dustbin and therefore keeping my weight at a very healthy state! Jed has done brilliant considering he never ate for 6 whole days when the infection was present. The NG tube will go in if he gets to 17.6 kgs again, it is therefore imperative to keep his weight up. He can't tolerate the chemo without his body having some nutrition. I meet the dietitian on Saturday again to discuss more food ideas - our goal is 20 kgs at 107cm tall. She has been a wonderful support.

Today, Jed is doing very well, he is up and playing which fills my heart with happiness and takes the edge off the last couple of weeks. They had to give him bone marrow meds which hurt all of his joints so for a couple of days he could hardly walk... that was heart breaking to see.

Andre Beaud has made his appointment to make his platelet donation for Jed. He goes in on Thursday morning. I have had my results - my count is 347 000 so I will be donating on the 18th of June and then Ray on the 25th of June, his results are 253 000. My friend's husband (Trevor) will be donating on the 2nd of July - so at this stage we are only a couple short of meeting the quota. It is a long process and takes a huge commitment. I will be forwarding out a mail on the process soon and I can only plead with you that you read it and maybe make a decision to do it for Jed or for another child. If only I knew sooner; what an honor to have your platelets save a life of a cancer child or adult. I would give my life to save a cancer child (any ONE of them) and all they are asking is for some of our platelets...... please! I apologise for not doing the mail sooner but I have done some research and I don't wanna send out incorrect information and cause frustrations. I am currently typing out the list of no no medication that you need to avoid before your donation week.

I thank you for your prayers for Jed and for the beautiful messages and words of encouragement I have received.

With lots of love
Bon, Ray and Jed x x x
"In God we Trust"

When reality hits too hard .......

2009-06-03T10:10:00.003+02:00

2nd May 2009

Hi,

My heart is so broken I can actually feel the physical pain. Cancer is a bastard!

Jed was admitted to hospital on Wednesday with awful tummy ache, he was screaming and shouting, "mama help me"... Ray and I rushed him to Unitas and after the blood tests we were told his infection marker was 60 (it should be below 5), his white cell count was ZERO. He was dehydrated, constipated and his system was poisoned from chemo. His tiny body was shaking in pain, there are no words to explain how I felt. He was given morphine, cortizone, zofran, paracetamol and buscopan. After watching Jed suffer for 3 long days and 3 long nights Ray and I finally had the conversation about stopping the chemo and letting God decide what his plan for our baby was. We asked the doctor how much time we would have if we took that decision and he explained we'd have 6 months at the most. The problem is the quality of those 6 months... the impossible decision. I looked at Dr Reynders and between hysterical sobs I asked him if it was his baby what he would do. He replied that he would give the doctor 3 months and see how the chemo goes, if there is no improvement he would stop as he couldn't see his child suffer. We now give the doctor some more time but I just don't see how Ray and I are going to make it through.....

I haven't been able to pray for the duration of the week as I have so much anger inside that I just feel my prayers are not being heard. I know there is no cure, I know what I can see going on in my daily life but God said he would never give us more than we can handle. Surely he knows me.......... Just pray for Jed please!....

And ... the good news is. We are home for a couple of days. We skipped chemo for last Saturday as Jed was too weak and depending on his counts he will have his treatment this Saturday. He was also given a medal from the nurses for being the bravest little boy in the hospital (i'm sure they all get one). Jed has not taken his medal off and is bragging to his dad and gwans how he won a medal for being so brave!!!! I'm actually very proud of the medal myself. I have seen a wonderful dietitian about his eating, Jed has 20% malnutrition and she is working with me now to help me build him up. He was admitted at 17.6 kgs but after 5 days of NO FOOD, only a hydration drip I wonder where we are with the weight now.... I have a smart action plan and I have already started working on it. Today he ate chicken for the first time since he got sick so maybe things will improve.

More good news, Andre Beaud will be giving Jed's first round of platelets. On the 11th of June he will be off to Unitas to make the donation. If you see Andre please ensure he is eating well and do not stress him out at all, he needs to stay well and chirping for his big day! I will be sending out a mail on the donation process and those who are O positive and read the criteria you can decide if you would like to donate for Jed. Ray and I did the donation pre-test today and I am actually on a VERY MILD and low dose of anti-depressant according to the doctor so dependant on the pre-test results we too can give our baby platelets. I will send out this mail tomorrow. What is wonderful about this process is that if Jed doesn't need the platelets on Saturday then the next child in line gets them. So they NEVER go to waste. Platelets only last 5 days. If you are not O positive and feel you would still like to donate all I can say is, you will be doing the most wonderful thing for a cancer patient. When you see a mommy or daddy running in with their child bleeding from all over as the platelets counts have dropped - there are no words to describe the sense of urgency on their faces. We have had to wait up to 24 hours before to receive platelets as the shortage is that bad. I guess people don't donate as the criteria is very strict and the process does take time. I must be honest I didn't even know what a platelet was before .... ja ja....

With the biggest request to pray for Jed and with so much love and thanks for your support.

Love, hugs
Bon, Ray and Precious Jed 10
x x x x

Still in Hospital

2009-05-30T19:55:00.003+02:00

30th May 2009

Jed is still in hospital and not doing well at all. The one good thing is that his temperature has normalised but he is still on Morphine 6 hourly for the abdominal pain. Bonni says he is terribly weak and has lost a lot of weight. He has not been able to have chemo this week because of his current condition. Please pray urgently for Jed, Bonni, Raymond and the three Gwans.

Love: Thelma

Hospital

2009-05-27T21:32:00.002+02:00

27th May 2009

Jed had been admitted to hospital. He has not been eating or drinking at all today and was complaining of severe pain in his tummy. They are still doing tests to try to establish the cause. At this stage it looks as if he may have a bladder infection. If his fever keeps going up and does not break within the next hour, the doctor will be called out. Please urgent prayers are needed because his blood count is very very low. He is currently having a blood transfusion.

Thelma (Soccer Gwanny)

Chemo week 3. 23/24 May 2009

2009-05-24T21:24:00.003+02:00

24th May 2009

Dearest Jed10 supporters,

Hell, did we get a shock - Jed's platelets dropped to 18 - aaaaaaaaaaaaaaaaaaaaaaaaaa - I knew they would have dropped but was shocked by how much they dropped by. The Unitas team worked non stop to get donor platelets for Jed but once again, we had to sit waiting on the list for our platelets. "Lucky" for us Jed's platelets were the lowest so he was first on the list. I am going to research this week on how a donor system will work. So far I know that Platelets last 5 days from day of donation; so the donor would need to be available on a Wed/Thurs (then 24 hours to process). We are going to need a lot of platelets over the next 81 weeks and I am going to ask that if you are interested in helping Jed to please contact me via e-mail (please think nicely about this commitment - you know like in all areas of your life #**@). As far as I understand you would need to be 0 positive blood group. You would need to take a half day off work as the process takes 2 hours and you can only donate once a month. Ray is not able to donate as he has been on aspirin in the last couple of weeks and I'm drugged up to my eyeballs on anti-depressants. I will let you know more as soon as I have met with the clinic.

The rest of the blood tests didn't look good... white cells at 1 (normal 5-15.00), and red cells at 8.8 (11.0 - 14.0) - Jed's doctor decided to hold off on the blood transfusion. His words were, let us protect him from blood products for as long as possible.

Jed lost another 200 grams this week. If anyone cares I gained 1.4kgs this week - due to eating Jed's scraps to avoid food waste. I started sobbing at the sight of the scale... (when Jed was standing on it).... I am now the most determined force feeder on the planet. I am doing a star chart and a good boy eating reward system. If Jed eats he gets a star, if he doesn't he gets a sad face - when the week is up I will buy him a dream toy if he gains weight. Nothing like getting him obsessed with the scale, hell it has done me no harm in 35 years...

Thank you to everyone who sms'd me on Saturday morning, it was such a nice surprise... people were thinking of us at chemo... it just made me feel so special. Next week Saturday is the big boy Chemo-Carboplatin at 550mg - this one scares me as I remember the way my baby looked after this. It is a massive and harsh chemo so please keep Jed in your prayers big time!

Jed is still doing well, he remains an inspiration to me, he is so happy and positive all the time, if he would eat I honestly believe he'd be given Saint Hood!

Jordi starts his new chemo on Monday and Michelle is also having a difficult time with his eating. Please keep her and Jordi in your prayers.

We thank God for Jed and continue to pray for our miracle.

With lots of love
Bon and Ray

One day at a time

2009-05-18T17:45:00.002+02:00

18th May 2009

One day at a time sweet Jesus
That's all I'm asking from you
Just give me the strength
To do everyday what I have to do
Yesterdays gone sweet Jesus
And tomorrow may never be mine
Lord help me today, show me the way
One day at a time

Second chemo update

2009-05-17T22:37:00.003+02:00

17th May 2009

Hi everyone,

What a pleasant surprise this round of chemo has been. Both Ray and I are shocked at how well Jed has reacted. We discussed our concerns with Dr Reynders at our appointment on Saturday and he explained that the first chemo is the strong one - then it is 3 weeks of a different and not so strong chemo and then the strong one again. This will continue every Saturday and will always be dependent on Jed's blood counts. His red count is 10.5 (normal is 11.00 - 14.00), under 10 is a concern so this is good news, his white cells are 2.00 (normal is 5.00 - 15.00), his platelets are 135 (normal is 200 - 450). All his counts are down (which means his immune system is down) however, we knew this and except it is part of the process. I was actually surprised that the results were this good as the chemo was extremely strong. Thank you for your prayers.

The eating is a HUGE concern Jed is now at 18.4kg (and I kept his shoes on) so he has lost a total of 600 grams in a week. The doctor has increased the Zofran (nausea medication) and Jed is now on cortisone for a couple of days. I know cortisone has all sorts of negative side effects but Jed has been so well. He is eating so much better, drinking fluids and he is full of energy. His cheeks are rosy and he looks amazing. He has had no pain since the cortisone started.... Jed is also on a daily supplement of protein, I feed this to him with a syringe and I pretend it is medicine (excellent idea I got from my sister, Shelly)

We are still very happy with Dr Reynders and the staff at Unitas; each Saturday we are amazed at how professional and caring the team are. Dr Reynders was so supportive regarding our concerns with Jed. He told us that if we are ever worried, at any time day or night, we can bring Jed to see him. He has made himself available for Jed and we feel so blessed to have such a great doctor.

After chemo Jed was so well we decided to pop into Jordi's party. His mom, Shell and dad, Wayne threw him a superhero party to celebrate the end of a very emotional and hectic radiation session. Jordi had to have a General Anesthetic daily for his radiation. The fact that this was behind them was a huge reason to celebrate. We didn't stay long but it was lovely to see all the adults in their superhero outfits and Jordi surrounded by love and support. People are wonderful and life has honestly taken on a different meaning to me. Every single day is a blessing.

Please may I ask that we continue to pray for Jed and Jordi. I have added a picture of Jed kissing his mom, I hope you like it as much as I do! .

Please add my brother to your prayers. He has (once again) been admitted for major depression which may or may not relate to his head injury from his accident in July 08. We are waiting for him to be transferred to Tara! Larry hasn't been the same since his accident, he just doesn't seem to be able to cope with reality anymore. My favorite men are in serious need of prayers. Please add my poor mom too, her heart is in a zillion pieces as her babies are all in crisis.

"Mommy you continue to amaze me; the thought of you sitting at Helen Joseph admitting your son and trying to get him into Tara breaks my heart ..and whilst you are doing all of this, you still phone to check on Jed all the time. I love you mommy and I'm so sorry that you are facing all this sadness in your life.... you are the strongest tiny person, I am honestly so proud of you mama"

Thanks to Aunty Thelma (Soccer Gwan) and Lulu (Shelly) for helping my mom today with Larry - I'm not sure what we would do without you both.

With love
Bonni x x x

With love after 1st of many chemo sessions

2009-05-12T18:20:00.003+02:00

12th May 2009

Hi everyone,

Chemo was hectic - well not the actual chemo but the night after and the last few horrid days. Jed was terribly sick... his gran (Ray's mom) cried when she looked at him and there were times over the last couple of days where Ray and I just looked at each other and without saying a word knew what the other was thinking ......"is it worth it to put him through this..." Jed didn't eat for days and the biggest worry of all was he also stopped drinking. He slept all the time and I sat watching him, making sure he didn't choke on his own vomit. Jed's first round of oral chemo never effected him like this so this was a total shock to our system. I was so scared... I hardly slept - as he was sore, his tummy, his bum, his legs and also aaaaaaaaaaa his head.... Our new doctor has been such an amazing pillar of strength for me. I phoned him on Sunday night very panicked (yet again) and he explained that the chemo causes brain swelling and that could be the answer to the headache - also Jed was dehydrated so that was making the situation worse. Anything but the tumour. The new doctor (Dr David Reynders) is wonderful, he phoned everyday after the chemo and constantly checks on Jed - he cares!!!!!!

If you know ANYone that has ever had chemo, give them a huge hug; to all my loved ones who have been through it, ..."you have more strength than anyone I have ever met. You are a super hero.... " If you haven't walked the road - I don't think you can comprehend what this poison does to your body.... the sweats, the cold, the shaking, the nausea, the pain... horrid I tell you! At one time Jed was screaming saying "somebody is killing me mama" - it was so sad to witness.

Today is my birthday - 'happy birthday to me... " I have been blessed with two of the BEST presents I could imagine; the first is my little boy - who woke me up by playing with my hair and the other is the fact that he ate food today... It was the most amazing gift. If you offered me a million rand or for Jed to eat a yogurt - I'd choose the latter and I was granted the latter today ... he's had a yogurt, a sausage, juice and a slice of bread. Each mouthful is such a joy to witness. I now sms the grans each time he eats so they are so relieved and enjoying the moment with me.... such joys that others take for granted hey!!!

I decided NOT to take any post chemo pictures, I don't ever want to think of the way he looked and I felt that it wouldn't be nice to share that with anyone. I've attached a picture of the gwans, it is a rather old picture. These are the ladies that love and support us daily .... Soccer Gwan (my aunt) has Jed on her lap, then it is Uncle-Bob Gwan (Ray's mom) and then The Funny Gwan (my mom)

Jed has had one chemo session so only 80 sessions on this course left... only 80 hey - prayers will be essential..... the next session is on Saturday but we will chat to the doctor as the side effects also had him very concerned about Jed going forward.

I know that there is a lot going on with the economy; please know that I am praying for job security for my friends (that's each of you) and for your well-being too. As my good friend Anthony Beckley would say, "one day at a time and what will be, will be... so we live in the moment and enjoy what we have today!"

God Bless and thank you for your prayers.

Lots of love, hugs'
Bonni and Ray x x x

Chemo "one day at a time"

2009-05-08T18:43:00.002+02:00

Hi everyone,

It has been such a blessing receiving so many messages over the last day or two on my phone. Thank you so much.

Jed has had a very hard time since the chemo. He is vomiting a lot, his tummy is running, his mouth is sore (and his butt), he shakes and his doesn't wanna eat or drink. The doctor is now monitoring his weight very closely. He is just under 19 kgs and at 107 cm he says it is becoming a worry. He explained to us about a feeding tube that goes through Jed's nose and into his tummy. I'm not going to think of that just now and keep trying to feed him as much as I can. Today he has eaten a slice of dry bread and each bite was such a miracle. He has kept the bread down. He is no longer interested in the drinking supplements as I think dairy products make him nauseous. He has also just starting drinking some coke. (bla bla bla coke no nutrients but better than nothing). If anyone has any ideas relating to food I am open to anything. I've done everything I can think of... using cookie cutters for the bread.... so i'm running out of ideas.

I'm sure that in the next day or two the eating may improve.
9th May 2009

Thank you once again for your love, support and prayers. I have attached a picture of how the chemo goes into the port, much better than finding a vein.

To all the mommys out there have a wonderful mother's day on Sunday. And to the three Gwans, Funny (mom); Soccer (aunt) and Uncle-bob-gwan (Ray's mom) - I love you all more than I can express. Your love and support is so special to me. Thank you for always rushing to be with us, thank you for wiping my tears, for crying with me, for never missing an MRI or a single operation for Jed, thank you for sitting on plastic chairs and waiting for hours on end for results, for feeding us (even if it is tranquillizers) and for always believing that there will be a miracle for our boy. I feel so blessed to have you in our lives! Happy Mother's day!

Love
Bon x x x

MRI and start of chemotherapy (not oral)

2009-05-07T18:33:00.001+02:00

6th May 2009

Hi everyone,

The MRI is done. Thank you for your prayers, without them I would never have got through today. I was strangely calm so I can only say that it was due to your prayers. My mom never drugged me this time.

The results are.

The cystic lesion measures 1.1cm x 2.1cm in the transverse plane and 1.9cm x 2.8cm in the sagittal plane.

In essence we believe this is good news. I knew that realistically the MRI could not be clear and as Jed was vomiting a lot, my concern was that it had grown substantially. The results show that with the radiation and with the aggressive chemo we have halted it's growth. It remains at about the same size, in the same place as the MRI dated 12 February 2009 (considering this tumour grew 2.8 cm in 4 weeks this is a MIRACLE).
The MRI conclusion report reads: "There is a surgical defect in the left cerebellar hemisphere where a tumour was removed. There is no mass effect. T2 hyper intensity in the surrounding tissue (this could be due to radiation!!!!) There is a subtle enhancement in the rim of the cyst but there are no nodular lesions (praise God) however, this requires follow up. MR imaging of the spinal cord is normal with no evidence of drop metatases (thank you God)
The chemo is running through Jed now and we have been warned that it is very strong and I may have a hectic night/day ahead. At this stage I am so thankful that the Lord has given our medical team the guidance to do all they have done for my son and that thanks to HIM I still have my precious boy in my arms for yet another night.
With lots of love and hugs
Bon, Ray and Jed

Start of long road of chemotherapy

2009-05-05T10:34:00.001+02:00

5th May 2009

Hi there,

Just an update on little Jed.

We have decided to change doctors. We met with Dr David Reynders at Unitas on Friday (yip the PUBLIC HOLIDAY) and he will start Jed's chemo on Wednesday. On Wednesday we will arrive at Unitas in Centurion at 12h00 and stay there for the night and maybe Thursday night too. He wants to monitor Jed during the chemo as he will be using a very aggressive type of chemo. This gives us allot of reassurance knowing that we will be in a safe place, should Jed have any negative side effects from the chemo.

Unitas will be our new hospital going forward and we will no longer visit the JHB Gen - there are a number of reasons for this decision. The treatment he will receive will be the same as at the Gen. There is no standard treatment or cure for Jed's cancer so no matter where we go - it will be more about the service and well-being of Jed. We will miss Professor Janet Poole and can only hope she will remain in touch with Dr Reynders and together they will support each other for Jed's sake.

I will at Unitas with Jed from 12h00 tomorrow (Wednesday) - I will be all alone at the hospital with Jed and I welcome any visitors (if you are healthy please). Please if you live near the hospital and would like to come in for a quick visit I would appreciate it. No children under 12 are allowed in an oncology ward.

I have not heard from some of you in ages. Please sms and mail me from time to time and tell me about YOU and your loved ones. I don't always answer my phone as I land up crying and I have to be super mom 24/7 but would appreciate a mail from time to time.

Jordi finishes his radiation tomorrow, he is still crawling around and making his mommy very proud. So a special thank you to the Lord for being with Jordi through his radiation; going under GA daily! Jordi is a true little champion!

Please pray the chemo goes well, attached is a photo of Jed before his port operation. He is back to his naughty self and he is finally out of pain, the eina is better!

Love
Bon and Jed

Port done

2009-05-01T09:26:00.002+02:00

30th April 2009

Hi everyone,

We are finally home with our precious little boy. The operation went well - Professor Peter Beale was wonderful with Jed.

Jed woke up in al lot of pain and he was screaming with big scared eyes. He looked like a beautiful innocent and terrified baby! He was looking at me shouting "mama why are you doing this to me, please mama help me!!!" - I have never in my life felt more helpless and completely pathetic!!. All I could do was cry with him and tell him how much I loved him.

We had a little drama as the doctors left a needle in for the chemo but the chemo mix will only be ready on Friday - I started shouting for the nurses to take it out, it was the biggest dam fish hook needle I have ever seen. I completely lost in with the nurse and Ray had to calm me down. I was a little bit of an embarrassment but the needle was promptly taken out so my temper tantrum was worth it. They also left the drip in - which they removed again after me making lots of noise.

Jed is now playing with his new toys and is looking allot better. We are keeping him drunk on pain medication and will continue to do this until he is back to his old happy self.

Thank you so much for your prayers and please I ask that you don't stop praying for our boy. Also thank you mom, Socky Gwan and Pat for being with us today.

Attached is a picture post operation - this shows the plaster and you can almost see the port - I can see it clearly - looks like a lump about the size of a 50 cent piece!

All my love
Bonni x x x

Port operation tomorrow afternoon

2009-04-29T15:46:00.001+02:00

29th April 2009

Hi again,

After a billion phone calls and loads of frustration Ray has managed to get hold of Prof Peter Beale. He will operate on Jed tomorrow afternoon at 16h00 - No food from 10h00 (that will be easy) and no fluids from 12h00. It is always a frustration when they operate on kids late. We will arrive at the Donald Gordan in Parktown (opp DHL Parktown) at about 14h00 or just after.

Please I ask that you pray with all you have that tomorrow is pain free for my baby boy. Please!!!!

We also have an appointment with a NEW medical team on Friday (they agreed to the public holiday appointment) - Ray is pretty fed up after the run around we have had over the last couple of weeks. I am not going to comment on this and will go with what Ray decides. At the end of the day, we have to put Jed's best interests first, after all tumours don't go on holiday over Easter and public holidays unlike doctors. (Tumours also don't vote) I'm always mindful of what I say about the medical team we have had thus far, but when it comes to Jed I will not tolerate any kind of lack of care. I'd rather he was under a caring, loving doctor than the best in the country. Although we pray to get both! As you can "read" I've had a guts full of doctors today! I wish I could invent my own Janet Poole, Dr Klass and Peter Beale and keep them on call 24/7 for Jed and Jed only!

So please remember to pray for our baby boy!

With lots and lots of love
Bon and Jed x x x

GOD OPENS DOORS

2009-04-29T15:41:00.002+02:00

29th April 2009

I NEED A DOOR TO OPEN...Father in the name of Jesus I pray you open doors for the person whoSent me this as well as those I am sending it to. Only you can open

Doors no man can close and for that we honor you today.

Thank you for The open doors of life, health, strength, prosperity, wealth and loveAnd thank you for closing the doors of death, sickness, weakness,Despair, poverty and bitterness. We love you today Lord and give youAll the glory and all the praise. I seal this prayer in Jesus nameAmen!!!If you need God to open a door pray this prayer for the person whoSent it to you and for those you are sending it to.Believe in your heart and you shall receive what God has for you.I need a door to open!God closes doors no man can open & God opens doors no man can close.If you need God to open some doors for you...send this to ten people,AndIf you don't need God to open some doors for you pass it on anyway... . Have a blessed day and remember to be a blessing

Port still not done!!! Worried mom!

2009-04-29T11:32:00.001+02:00

29th April 2009

Hi everyone,

I'm a bundle of nerves at the moment as I am yet to hear from the surgeon regarding the port. I've become a stalker at the Gen with my numerous phone calls. Jed has had zero treatment for over a month now. Ray has just tried now and he was rudely told that it is up to the surgeon to fit Jed in. Ray has managed to get Peter Beale's office number and address; he is on his way to his offices now. If we do not have a date and time soon we will look for another oncologist and surgeon. I have already made a couple of calls.

The tumour (pig) grew 3 cm's in 4 weeks.... so we don't have time on our side, if only the doctors had the same sense of urgency. It seems they are too busy to assist.

Jed has had a wonderful couple of days, no vomiting and has some colour in his cheeks. It has been lovely having my happy, healthy little man at my side.

Please pray that the port happens soon so that Jed can continue his treatment going forward.

With love
Bonni

Blood count good

2009-04-20T16:43:00.001+02:00

20th April 2009

Hello there,

Jed's blood counts are up! Thank you to everyone for your prayers. His platelets are 223 (thousand), white cells are at 3 and red cells are back to a normal 12. The next step now is the port. Jed's blood count indicates that treatment can continue. His port operation will take place next week. Prof Poole has to confirm when the surgeon is available. We have requested Professor Peter Beale to do the port at Linksfield. He is away this week so we will only have confirmation on Monday. Professor Poole is hoping that the port will be done on Monday already (the sooner the better).

We went over the chemo risks (the plan is yet to be confirmed). It is all very overwhelming and we pray that the risks are something Jed will never have to face. He MAY get twitches in his legs and arms; his balance and walking MAY be affected; he MAY lose his hair (the radiation patch is still bald); his eye lids MAY go droopy (not sure why this is) and then the normal chemo risks of nausea and exhaustion. If he is allergic to the chemo then the risks are far more serious (but for now we hand it over to God and we don't even worry about it) We will need to keep his area (home) very hygienic during the chemo and they recommend we limit him from visitors (however we will allow people to see him if his counts are good)

The chemo will be done at the Gen. I spoke to Prof Poole about going private at Donald Gordan, she basically said it was our choice but she is based at the Gen. I will therefore remain at the Gen for the duration of his chemo. However, should Jed need to be admitted we will go over to Donald Gordan.

The question everyone is wondering now is.... when is the next MRI.... it is going to be in about 4 weeks time. The MRI will show if the radiation has worked, no matter what the MRI shows chemo goes ahead. Our prayers are that by a miracle of God the MRI shows that the tumour is gone, 100% clear and that Jed is healed. I am very nervous for the MRI and I am not pushing Prof Poole for this step.... she will discuss it with us when she is ready. Please pray about this. We have been told that this tumour can be shrunk by radiation and chemo but not completely... we know that God can do anything and with the power of positive thought and prayers we stand united in the belief that the tumour is gone!

For now, we are blessed with a full week off and no treatment... we pray that the port operation goes well and that we can start the next round of treatment.

Attached is a picture of Jed hard at work!!

Please continue to keep us in your thoughts and prayers.

With lots of love and hugs
Bonni x x x

Donations

2009-04-20T13:25:00.001+02:00

Total Donated R 49,411.31

25-08-09 Michael Hibbert R300.00
25-08-09 Glenn Mc Dougall R6921.00
24-04-09 Anonymous (ref Jed Medical) R 300.00
24-04-09 Jasen and Jax R 200.00
24-04-09 Anthony Beckley from DHL R 500.00
24-04-09 Rachel Suckling R 3 214.97
18-04-09 Wayne and Tertia R 1 000.00
15-04-09 Anonymous R 2 000.00
8-04-09 Anonymous (Absa bank transfer) R 200.00
4-04-09 Bruce and Libby R 1 173.62
4-04-09 Soccer Gran (Thelma) R 200.00
3-04-09 Anonymous R 1 180.00
3-04-09 Mr BP Booysen R 1 197.72
1-04-09 Bianca Barr R 300.00
31-03-09 DHL International!!!!!!!! R 12 000.00
31-03-09 Crew Room Lounge R 1 350.00
31-03-09 Bernie Butler R 200.00
30-03-09 Anonymous (East London) R 500.00
30-03-09 Anonymous R 400.00
30-03-09 Roger and Carol R 2 925.00
28-03-09 Karen Theunissen R 100.00
27-03-09 Mike Perdita and Corriana Druce from DHL R 1 500.00
27-03-09 Ingrid and Greg Clarke R 3 000.00
27-03-09 Crew Room Lounge R 1 000.00
26-03-09 Crew Room Lounge R 3 770.00
26-03-09 Laurian and Dennis Seaton from DHL R 500.00
25-03-09 Topsy and Marina from DHL RBG R 500.00
25-03-09 Nancy and Donatel R 200.00
25-03-09 Anonymous R 300.00
24-03-09 Tammy Cocking from DHL R 250.00
24-03-09 Anthony Beckley from DHL R 1 000.00
23-03-09 Nikki day from DHL R 300.00
23-03-09 Jean R 250.00
23-03-09 Anonymous R 250.00
18-03-09 Anonymous R 5 000.00
18-03-09 Anonymous R 1 000.00
18-03-09 K Theunissen from DHL R 50.00
17-03-09 Anonymous R 1 500.00
16-03-09 Bonni Suckling R 100.00

I lost it today

2009-04-15T09:59:00.003+02:00

14th April 2009

Hi,

I went mad today, knew the day would come again eventually.... actually started on Monday morning and manifested into full blown madness this morning.... went through to Ray's room and told him I was in no condition to take Jed to the Gen and then went off for a drive. Thought about suicide a bit then realised that the immodium, Buscopan and 5 multi-vitamins (all I had) would not do the job... madness I tell you!!! Went off and had a lonely wimpy coffee and made an appointment to see the shrink, time to re-visit anti-depressants! After, the pity party I went to visit Jordi and his mom. That really did me the world of good, Michelle is so positive and watching Jordi's progress gives me so much hope. Michelle and I spoke about our faith and how we needed to stay strong. She gave me a much needed hug... only a mommy going through something similar can understand this crazy moment.

Jed's blood tests improved. Ray phoned me with the results 12.1 for Red, 3 for white and 156 for platelets... Our next blood test is on Monday next week. This is wonderful news. Although the transfusion was on Thursday - I believe the blood test results are positive sign that his body is starting to come right after the strong chemo. Ray is a fantastic daddy for taking control today!

Sometimes you hear people say and I've heard it more than once lately, "this journey you are on with Jed will be understood later on in your life. Although what you face daily is very difficult, at some point you will understand the reason."

Mmmmm. Yes, I have learnt from this experience; I have learnt to beg God on my knees; I have learnt to put my pride in my pocket and ask for help; I understand madness (first hand); I have learnt what it feels like to be extremely lonely in isolation; I have learnt what petrified really feels like; and yes, I have learnt the VALUE OF LIFE and real friendship. I have learnt that strangers can be so kind, that hugs in my personal space can be wonderful (anyone who really knows me will understand that one).

I look at what is really important - sorting the junk (some people included) from the real issues at hand. Every single minute of my day is a privilege, I don't wish the day or week away anymore, the time seems to always be going too quickly lately. My hope for you as you read my sorry--ass pages is that you breathe in life fully, you relax more, you play more and cherish your moments.....Do you really know how blessed you are to feel safe, even when your life isn't flowing perfectly at all times? That in itself is your blessing! This isn't a practice run this is the ONLY life we have.

I would always give the "lady with the kid" (ja, that one) at the traffic light, money, or bread or whatever I had at hand. I would look at her with the pity I see when people look at my son now, and I would think how cruel life can be. When I look at her now, I think how lucky she really is..... how blessed she is, how beautiful her mismatched child is and how healthy that dirty little face is,.... seriously, that is how I see it now. Don't get me wrong, I still give to her but I see her in a whole new light now! DHL was my life, I loved (almost) every single day at work and I always felt so blessed and lucky to have such an awesome job. (Jed still believes every yellow DHL Van is mommy's!!!) Now I look at "lady with the kid" and I think how blessed and how lucky she is...

We continue to ask God for Divine intervention and protection for my precious Jed, Jordi (spine cancer), Gilbert (kidney cancer), Lisa (Leukemia), Lewis (cancer), Bob (cancer) and the "lady with the kid!"

Attached is Jed, looking like a little angel, finally he can shower and wet his whole head... the radiation section is peeling but it has healed nicely!

I'm staying at the gwans until my madness improves - already missing my darling boy and it's been only a couple of hours!

Love
Bon x x

BLood and platelet transfusion

2009-04-09T20:39:00.002+02:00

9th April 2009

Hi there,

All over and done for today... one day at a time. Jed is very sleepy but still playing PS2 with his dad. The grans sat with me the whole day and I thank God for them both!!!!! I'm still having pathetic panic attacks at the Gen!

Gilbert's surgery went well. I went down to see him after his operation. The surgeon removed his kidney and his dad told me he was informed that the surgery was a huge success. I left Gilbert with a couple of presents to open up when he is feeling better. Thank you for praying for him with me.

Jed's next blood test in on Tuesday and we pray his counts are up, this little man has seriously had enough pricking and poking for a while.

Thank you all so much for your prayers and support.

Attached is a picture of Jed - this one is not a happy pic, but it shows clearly the difference between the platelets (orange stuff) and the blood. Jed calls the orange power juice and the red superman flying juice..... way better than platelets and blood.

Love to you all, enjoy Easter with your family
Bon x

Another transfusion tomorrow

2009-04-08T21:19:00.002+02:00

8th April 2009

Hi there,

Just got home from another exhausting JHB Gen day. Jed's blood counts have dropped again, his WCC (white cell count) is at 1 and his HBC (red cell count - as I understand it) is at 7 (both is way way below normal even for a chemo kid). His platelet count remains low at 43 (anything below 40 is a transfusion). So tomorrow we go back for a BLOOD transfusion (this is the normal red stuff - the platelets are orange).

Lots of people have sms'd and asked if they can donate blood or platelets for Jed, unfortunately the blood and platelets go through some process or other and they can't just take any ones (not even mine and Rays). My answer is yes, donate, maybe not for Jed but for some other kid. The blood/platelet shortage is serious and I ask everyone who can donate to please do it. Don't wait for them to come to you, find a place and donate!

Yesterday, was such a happy day, we played and made bead necklaces (see the picture). I just don't understand why his blood levels are taking so long to come right. Janet Poole asked me twice if I was giving him oral chemo and I told her nothing for over 2 weeks, so it is a mystery! She did say it was from the chemo and not the cancer. Let's just put it this way...(and pray it into reality), the chemo we gave him was so powerful that it killed off everything first time round and now we are waiting for him to recover and get his strength back.... Please God!

My mom, aunt and pastor are coming with to the Gen tomorrow so that I don't have to go through it alone, and we have a wheelchair now so in Jeds drugged state we can wheel him around. Also we are getting Emla tonight to numb the area before the pricking starts, so all precautions are being taken to make it as easy as possible. The grans were sent shopping for presents and I believe they went a little crazy and spent R500 on surprises; he deserves it! The transfusion will take a couple of hours so I will mail you later.

Have a blessed Easter and remember the meaning of this time. Please continue to pray extra hard for our boy, Jed; for Jordi; and all the precious little ones with cancer!

With love and hugs
Bonni, Ray and Jed x x x

All good

2009-04-07T18:15:00.003+02:00

7 April 2009

Hi there,

My last couple of mails have been a little sad so hopefully this one is gonna make you all feel better.

JED ATE FOOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Breakfast: Tubby toast (French toast) a whole slice, lunch: Sausage and Bacon, 3 pm snack: A WHOLE yogurt, Dinner: a mini pizza and a banana purity. He also had 3 glasses of water, a juice and a bottle of pedisure. Please God let this be a turning point. Never in my entire life have I seen Jed eat so much - and ANYONE who has ever met Jed will know this is a miracle, he hates food and has done from day 1!!!!!!! I'm so delighted.... Please God let this continue....

Our next blood test is tomorrow at the gen, the red cells were also down so we are eager for those results. The transfusion went okay on Saturday. Prof Poole sedated Jed and this was much better, the trauma (on mom, dad and Jed) was way less. 3rd attempt she found a vein.... She made a comment that his veins are really bad....! Chemo is on hold and he will not have the operation to do the port until has blood levels are normal. This could take 2 - 3 weeks. We have decided to ask Prof Peter Beeld to do the operation. He did Jordi's operation (on his spine) and I have read up on him. He sounds brilliant. The next MRI is in 6-7 weeks.... We pray it is 100% clear and Jed is our Miracle.

Some more good news, is that JORDI is Crawling on all fours. I had tears in my eyes when Michelle sms'd me the wonderful news. This is the boy that was NEVER gonna walk again, if he is crawling on all fours unassisted this is a future soccor star in the making. We give thanks for your prayers for this little boy! God is totally in control!

I have attached a picture of Jed, with the worms we made during education play.... hope you enjoy, Jed made the yellow one and I made the red one!

Lots of love
Bonni x x x

Platelets down, radiation over and a weekend at the Gen! (3 April 2009)

2009-04-03T18:46:00.004+02:00

3rd April 2009

Hi all,

I just walked in from the hospitals and radiation.

His white cells are slightly better at 2,6 but the platelets are very low again (20). I knew something was up as he got a nose bleed last night and again at the hospital... Jed generally doesn't have nose bleeds. They had no platelets available for Jed today and after many hours of waiting, we decided to go to radiation. We got a call to say they received a bag of platelets at about 16h00 today, so the transfusion will take place tomorrow morning at 10h30 - please God let them find a vein and thank you that Ray will be there with us....! Please please i urge all of you to donate blood and platelets, this kind of thing apparently happens allot. Platelets and blood go through a process and this is essential as it is checked and cleaned, you can't "last minute" donate. We asked about Ray's platelets again and were told that the platelets need to go through the process.

On a positive note, it was our last radiation session today. Jed will continue with play therapy at the Sandton Oncology Centre but NO MORE SCANNING!!! I got him a cake and we sang "Well done Jed" to the tune of Happy Birthday.

I special thank you to Janet my friend who held my hand from blood test to hospital; to collect cake; to radiation; to hospital and home! - She took the day off work and it was so amazing to have her with me..

Please pray for Jed's count and for protection!!!

We hope the Ben10 lights killed the ballies at scanning and this we ask and pray with all our hearts!

With love and hugs
Bon, Ray and Jed x x x

JUST A POEM (HOPE)

2009-04-01T17:06:00.003+02:00

1st April 2009

Bonni dear Try to remember the word "HOPE" in that very sad poem - Uncle Joe

HOPE...I hope you never have to hear the words, "Your child has cancer."I hope you never have to hear, "The prognosis is not good."I hope you never have to prepare to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.Look at you with fear in their eyes and say, "Don't worry Mommy, everything will be okay.'I hope you never have to hold your child as they vomit green bile.I hope you never have to feed them ice chips for lunch.I hope you never have to watch the "cure" you pray for slowly take away their identity, as theylose their hair,become skeletal,swell up from steroids,become barely or unable to walk or move,and look at you with hope in their eyes and say,"It's going to be okay, Mommy."I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, "There is nothing more we can do."I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.I hope you never have to see a child's head bolted to the table as they receive radiation.I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.And they look at you with faith in their eyes and say, "It's going to be okay Mommy."I hope you never have to face the few friends that have stuck beside you and hear them say, "Thank God that is over with,"...because you know it never will be.Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to "normal".While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words..."The cancer has returned" or "The tumor is growing."And your friends become even fewer.I hope you never have to experience any of these things...Because...only then...Will you understand

...Author: Carol Baan

Subject: Jed's update 30 March 2009

2009-03-31T18:13:00.002+02:00

Hi there,

Jed's platelet count is up to 50, but now his white cells are dropping; they are at 2.2 - chemo is still on hold and they have actually asked us to return the chemo medication. I always thought chemo was like antibiotics YOU HAD TO COMPLETE THE COURSE OR ELSE.....? Radiation went ahead today with the booster session. The mask is very tight on his head now and they put little bits of cotton wool inside the mask to ensure that the pressure doesn't hurt him. The ladies are so patient with him.

With the white cell count going down his immune system is weakened, however as I sit watching him play PS2, although slightly pale, he is back to his normal naughty self. I love the sound of his jumping on the bed and just now i heard him sneaking a quick jump.

A special heartfelt thank you for everyone who continues to contribute to Jed's fund. I don't have the words to thank you anymore, so I hand over to Jed.

Dear everyone especially my mommy's friends at DHL,

I want to say thank you for making sure that my mommy can look after me and get the best medicines for me. She makes me drink milkshakes and she says it will give me muscles and make me strong.

I love you guys for taking this one stress away from my mommy!

Please remember to ask Jesus to make me better and kill all the ballies in my head!

Love and hugs
Jed x x

From
Bon, Ray and Jed

PS: Attached is a picture of Jed's Grannys (I talk about them so often I thought you would like to see what they look like.) Bonny's mom is Funny Gwan, I am Soccer Gwan and Bob Gwan is Raymond's mom in case you have difficulty identifying us.

Transfusion

2009-03-28T10:09:00.000+02:00

27th March 2009

Hi there,

I'm sitting here waiting for Jed to wake up so I thought I'd write to my network of strength. I'm not doing well, my heart is very sore today. I'm having those; oh why me moments;, why must I hold my son down while they prick, pick and poke him; why did I give him the chemo that made him so weak and sick; why did I decide to let them fry his tiny brain with radiation; why must I take him to that place of sick children.. bla bla bla... and yes, I know why, coz special moms get special children....aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa screaming on top of my voice!

Thank you I actually needed to get that off my chest!

Yesterday was kuk (can you say kuk on e-mail??). The professor battled to find a vein to do the transfusion so she had to prick him a few times, once she managed to get one, Jed pulled it right out and the process began again! Jed looked at the Professor and screamed at her "why are you hurting me, it is not berry nice, YOU KNOW"... We also counted Ben10 1, Ben10 2 and he counted through heart broken sobs... but the brilliant Prof got a vein and the transfusion went well. The platelets came from a donor. That story the doctor told us that they do it direct from dad turns out to be only in the movies, in real life, they need to be processed and prepared first. What I want to encourage everyone to do is, please donate blood if you can. Some stranger saved Jed on Friday, I hope that we all get to be a stranger that saves someone one day, so go out and donate!!! (by the way, I never have, but will do it as soon as the opportunity comes up; Norms (Norman George) - my good friend would always try drag me and I just couldn't be bothered, I promise I will be "bothered" from now on)

On Monday we go for another blood test at the Gen. Jed's new name for the Gen is "The Picking (pricking) Station". I will update Jo as soon as I know the results. We would need another transfusion if it remains low. At "The Picking Station" I broke down sobbing when they couldn't find a vein and I was so scared for the transfusion, an old'ish Indian man came over to me with his daughter and asked me why I was crying.... I told him I was so scared to let Jed go through the transfusion. He introduced me to his daughter, a 9 year old with beautiful hair and a gorgeous smile. She is a leukemia survivor he explained and she is in remission, she too had a platelet transfusion. I asked him, "please tell me the side effects, what if it rejects them, what if he gets sicker from it, please please just tell me the side effects (sniff sniff)", he smiled and he said, "the side effect is HE WILL GET WELL from it, yes, he'll get stronger and things will get better"....... a devoted father, who promised to pray for us. I love that old'ish Indian dad.

The Picking Station is actually not that bad, CHOC comes and does baking with the kids or games, they have a big TV in the play room with DSTV on cartoons. I met 5 moms with children who have leukemia (hell now this leukemia is a big childhood cancer sickness), allot of the children were in remission and doing well. Everyone praised the Gen and Prof Janet Poole. I feel more comfortable going there now.

In closing before my long bla bla e-mail continues for another 500 pages I want to say, thank you for the donations we received PLEASE PLEASE use your name as a reference so that I can say thank you. Please don't take that away from me, let me say thank you for helping my son, please! The account is on about R10 000 and we are going to use some of it soon for the medical "self payment gap"! My uncle is exploring medical options in the US and Australia; if he finds a better option then we are gonna have to look into it. I have sent him all the MRI reports, medical reports, treatment plans going forward and info, we are waiting now for their input.

I'm having some arguments with our Heavenly Father and it's not cool please pray for my faith...mmmmm! Please pray as always for Jed, Jordi and every mom and child with cancer!

Also THANK God for the donor who gave Jed the transfusion, for Jed's grannies (who stand by us) and the old'ish Indian daddy (maybe God sent him)

With love and gentle hugs (we only do gentle ones when platelets are low)
Bon, Ray and Jed x x x

Platelet Update

2009-03-26T10:38:00.000+02:00

26th March 2009

Hi,

I have received lots of messages asking what is happening with Jed. Radiation is on hold as they review tests. We will have news tomorrow on his platelet count. Jed is home, the risk of infection will be increased if he is sent to hospital, the doctors are aware, I know what to look out for and will take him to Linksfield at the first sign of bleeding. He is pale today and feeling lazy but he is playing his games (PS2) and drinking. Jed seems to be less itchy (i hope this is a good sign - I cut his nails down to nothing) but the spots are still on his little body!

My mom and aunt are coming through as I am feeling very anxious and I am counting the seconds now till they arrive. Please don't call me, I'm still dam emotional and my HAPPY face is on today for Jed, one call from ANY of you and fake happy face will flop!

I attached a baby picture of Jed taken when we went to Egypt to visit my precious friend Anthony and his wife Shirley. Just wanted you to see him when he was perfectly healthy and whole! Please God restore his precious little body!

Love and hugs
Bon

Jed's platelets

2009-03-24T20:46:00.000+02:00

24th March 2009

Hi everyone,

Just a quick request: Jed's Blood Platelets seem lower to me and I'm very stressed out. Please may I request that we take a minute to pray for him. I have an appointment with Professor Janet Poole at 07h30 for blood tests, from there we will have x-rays, and booster radiation. Ray is on stand-by and ready if a transfusion is required however the power of your wonderful prayers is what we need.

I have attached a picture of Jed's back, you don't seem to be able to see clearly but he has red/purple spots all over his back and body. His little bum and arms are very red and look bruised from his shirt and undies. This is a result of the low platelets. His hair has fallen out from the radiation so in this photo you get to see clearly where they radiate.

Things I have to be thankful for today, he ate, he played with his gran (Ray's mom - who wore a mask and sterilized her whole body- very sexy new accessory for gran) and he is not appearing sick in any way, his energy is low but nothing concerning! ONLY THE DAM SPOTS AND BRUISING!

With love and a slightly upsidedown smile,
Bon x x

FUND RAISING

2009-03-24T12:06:00.001+02:00

27th March 2009

We have set up a fund account for Jed and if anyone would like to do some FUND RAISINGet) for Jed this would be most welcome, brain cancer does tend to get expensive! Please know that this is not an expectation but only if you can. Any money contributed to the account will be used for medical expenses, supplements for Jed (this is about a R1000 month) and any special needs. Anyone in my family who is paying for Aunty Bee's care giver, your money will NOT be welcome in this account!!!!!!

First National Bank
Account No:62218655184
Branch: Greenstone
Branch code: 201510
Reference: Your name
Swift Code: FirNZAJJA 188
Account is in Jed's name: Jed Suckling and is linked to my cheque account - Ray and I have access to the account. Account name: Jed Suckling

2009-03-24T10:29:00.000+02:00

Photo of Jed after his first brain surgery.

Blood test results (ho hum) and some good shopping was done!

2009-03-23T17:11:00.001+02:00

21st March 2009

Hi there,

I've had a couple of difficult days emotionally so I apologise for not updating you but I'm back now!

Jed had blood tests on Friday and the doctors couldn't find a vein. His veins are clotting (and invisible);i t took 3 hours and about 4 attempts. Dr Klass looked finished, I'd been crying since 9am and dad (Ray) was the hero who managed to stay calm and remain the strength! I made Ray meet me at Linksfield and he did it without complaining!

I recieved the results today (Saturday morning).

Jed's white blood cell count has dropped to 3000. Chemotherapy kills fast dividing cancer cells. It also ends up killing normal cells in the body, like cells in the bone marrow that maintain the supply of white cells in the blood. It is normal for them to fall temporarily with most chemotherapy drugs. Jed's white cell count is at it's lowest now. The job description for a white blood cell (as I understand it) is to protect the body from infections. When the count drops the risk of infection is increased. It becomes dangerous as the body can't fight as the white cell count is low. I have to now monitor his temperture, check for coughs, loose stools (not an issue as we don't have many of these), boils or abscesses, mouth sores or problems with swollowing.

To avoid the chances of infections we stay home 24/7 and drive each other crazy!!!! We avoid extremes of temperature (no fans, heaters,) and make sure food is well cooked (he doesn't eat so that is never an issue).

If the drop continues the doctors may delay further chemo for a while.

Jed's platelet count is 51 000 this is also very very very low. The normal range for platelet counts is between 150 000 and 450 000 per cubic millimeter. What this means is my little man is very bruised and it seems sore if you even touch him too hard. He has lots of bruises on his butt and hips from bashing himself during playtime. He has no other signs of low platelet counts but we are keeping him indoors and well protected.

If the platelet count does not get better they will do platelet transfusions. Transfused platelets last a few days and must often be repeatedly given. Ray will be the donor of the platelets and Jed's doctor have already done the tests to ensure Jed is ready. The transfusion is direct from dad to son. However, if we stop chemo for a while this may all improve.

Lastly, a special huge thank you to everyone who has donated money towards Jed. May I please ask you to mail me if you donate or use your name as a reference, I would like to say thank you to you personally! We have already received money and we used some of it today. Dad looked after Jed while I went out. (This was good for me!) We got him the special car chair with the protective head pillows, the one we had did not support his neck nicely so his head flops around when he is asleep. This was a huge worry for me as his neck muscles are weakened from surgery. Now I can rest assured he is well protected during the long drives to and from the hospital. This chair was R1499. I then bought his milk/food supplement, pedisure (R1222) for the month (or more), purity fruits, juice and a few bottles.

I have included a picture of how the money was spent, you will also notice a Reggies bag, because people donated money towards the essentials I allowed myself to OVERSPEND a little on the non essentials, I got him 4 play station games, educational games, beads, picture making set, a train made of wood that you build and some puzzles. I felt I wanted to do it to keep him busy so staying home to be fun! Thank you all for allowing me to spoil my son coz you are taking care of the essentials, I promise not to go crazy again! This was just a once off crazy mommy moment that I needed. The rest of the money will be held for medical bills.

Love and hugs
Bon, Ray and Jed x x x

Jed is doing so well! Thank you!

2009-03-23T17:10:00.003+02:00

17th March 2009

Hello everyone,

I have had the best day!!! Jed went off to radiation with no hassles. The play therapy report came back from last week showing that Jed is a very well adjusted and happy normal little boy. He is aware that he is sick but has no fear relating to his illness and well being. Considering this boy has moved house, had 2 very major operations and undergone some significant changes; I am very proud that he is doing so well.

Thank you Lulu (my sister Shelly aka Aunty Jelly) for the lovely presents. Jed was running around shooting all the radiologists and having a wonderful day. The new teddy's name is dog! Dog Jed (his full name). We really do have lots of bribes for this week.... x x x

We also saw Reach for a Dream today and Jed received a Sony Playstation (the early addition) and a BEN10 duvet cover! Awesome. Now for those of you who are starting to think that little man Jed is getting VERY spoilt I have a great answer...Firstly, I gave away all his toys when I packed up house in PMB (it was just too expensive to move them and they went to my staff who really appreciated it), he is home ALL day so he REALLY plays with his toys and lastly I can't think of a little man who deserves to be spoilt more. His appreciation for the tiniest present is amazing and he is LOVING the additional attention. He is also the only 4 year old I know that could lay still through radiation (most go under GA), he also swallows 5 large capsules a day (and they are huge) and the supplements, nausea medication, tummy medication bla bla bla. I still discipline him when he is naughty and before the grans go off the rails about this, I have too; otherwise he won't listen through the treatment. Imagine he started moving through radiation and didn't listen. So spoilt he is, but spoilt brat I promise you NOT!!! :-)

Janet and I then took Jed to the zoo (ja ja) and we had a wonderful day. We hired a cart so Jed and Janet (24 weeks pregnant) didn't have to walk, it was so much fun. Jed had a wonderful day.

So from this grateful mommy, a special thank you to everyone for the prayers. Jed is doing very well on his treatment, my brother is making huge progress, my cousin Cindy pulled through a major operation today and my aunts tumour has shrunk.... we just keep praying now for a miracle for Jed (and i know it will happen with your love and prayers!!)

Attached is a picture of Jed at the zoo! Our own monkey!

Lots and lots of love
Bonni

Thanks Durban friends!

2009-03-23T17:10:00.001+02:00

16th March 2009

Hello everyone,

Jed had a good weekend and radiation went very well today. Our main concern at the moment is his eating, he is eating VERY little to nothing. His energy levels are still very high and he is bouncing around. The nausea medication has increased and although he does still vomit, it seems to be al lot less.

We have set up a fund account for Jed and if anyone would like to do some FUND RAISING (eg not from your own budget) for Jed this would be most welcome, brain cancer does tend to get expensive! Please know that this is not an expectation but only if you can. Any money contributed to the account will be used for medical expenses, supplements for Jed (this is about a R1000 month) and any special needs. Anyone in my family who is paying for Aunty Bee's care giver, your money will NOT be welcome in this account!!!!!!

First National Bank
Account No:62218655184
Branch: Greenstone
Branch code: 201510

Reference: Jed (medical)

The account is in Jed's name and is linked to my cheque account - Ray and I have access to the account.

On Friday we had radiation and blood count tests (still waiting for results) and on the way I realised I didn't have any bribes and I got a call from Janet (my friend) to say there was a parcel for me at her house. I went past her home, ran in grabbed it and flew out. As I arrived at the hospital Jed started screaming (he knows that this is the picking place and UGLY Dr Klass steals his blood). I opened the box and inside were all these cool goodies for Jed (blush blush me too!)... I told him to close his eyes and he could choice two presents, we did this before and after each test, radiation and chemo. The box was so full I still have 8 bribes and we used it all weekend with the chemo. Donovan, Ramolla and the Durban team, I cried when I received the box and I can't believe your timing. I hate Fridays blood tests and you made it just a little easier for me! I just didn't get to the shops and Jed needed those little goodies, it just makes it easier. I love you guys.

Attached is a picture of Jed with his new PJ's from Ramolla... he thinks he is an alien monster in his new PJ's!

Thanks for all your love and prayers for Jed.

Please pray for Jordi who has a chest infection (he is doing radiation at the moment and goes under GA - they have had to put his treatment on hold)

With lots of love and hugs
Bon and Jed x x x

A full medical update (another YEAR of chemo).... a special thank you to Steve and team (i miss you guys so much) and thanks to Jordi's family!

2009-03-23T17:09:00.001+02:00

12th March 2009

Hi all,

Yesterday was such a busy day, radiation went very well.

Ray and I then went to see Professor Janet Poole at the JHB General Hospital. The mission to get to the children's oncology is awful. We waited 25 minutes for the lift up to the fifth floor, then had to fight our way to the next lift through the crowds of people, and then follow the yellow/orange line, up to the 9th floor. In total it took about 35 mins from time of parking to arrival at oncology. The drive was about an hour and fifteen minutes.... the walls are yellow like an old chain smokers bedroom - the kind where you picture a painting being moved and THAT spot is white - it is old and dirty (not oncology the rest of the place). Then you walk into HELL, about 14 little beds in a row with tiny little people laying sick on drips, with no hair, the walk up is a pleasure compared to what you see at arrival. Let's just say I hate going to the JHB General Hospital and guess what, I GET TO GO FOR A WHOLE YEAR!!!!! We discussed the following with Dr Poole:

What is the next step after this round of 6 weeks of chemo and radiation:

It is a year of chemo at the JHB GENERAL HOSPITAL. That decision is ours, mmmm, to think that we have a choice. The type of chemo is VINCRISTINE AND CARBOPLATINUM. The reason why it has to be at the Gen is because Dr Poole works daily out of the Gen and that is the only place she will see Jed daily. We could go to Donald Gordan but then we will see her only every 7 weeks as 7 doctors take turns there. As Jed has such a rare cancer and the treatment is not used very often we need to be near her. Jed will be treated as an outpatient and I will travel in and out daily. It will be about 10 days on and then a couple of days break and then 10 on again.... she will confirm later how it will work. Jed will have an operation to insert a port into his chest, this will be for the chemo drip (i'm told by Jordi's mom and Soccer Gwan that this is not a big deal and only takes about 30 mins). This thought sickens me but like Jordi's mom said to me, Dr Poole is fighting with you. She really is an amazing professor; she actually spoke to the doctors in America (the ones I stalked) and took their advise on the treatment plan. I still have to work out the drive in and out, and how I will manage if Jed is vomiting. I will look into choc houses or hire someone to help me etc.

We then asked about the Quantronics machine:

She told me it was a load of rubbish. We may still think about it but at this stage Ray and I will listen to Dr Poole. As she said Jed's tumor is in 3 nods and we need to fight it aggressively.

We asked about the Brain Swelling:

She explained that the symptoms of brain swelling is the same as when the tumor is at full size, leg and arm paralyzed with terrible headaches in the morning and vomiting constantly. Jed does not have this (thank you Lord) Basically Jed does not have internal swelling; his is just his head that is swollen on the outside from the radiation (like bad sun burn).

We asked about the constipation and the vomiting:

She prescribed Lactose twice a day and increased the nausea medication.

We asked about diet:

Basically a balanced diet is best, Jed has lost 400 grams in the two weeks and she advised us to use pedisure three times a day and try get him to eat little bits. He loves the pedisure so that is great. As for food well he eats VERY little now. She advised us to stay away from salt and chips. Mostly cancer related to diet is not relevant for children under 5 years old.

I asked once again, what caused this (nag nag nag) ?

She said there is no answer, 2% of these tumours are hereditary and the rest are just out of our control. Not diet related, no fall could have caused it, environment, stress is not relevant!!! So we will never know the answer.

I'd like to end this mail with some positive updates. We received a lovely gift from my boss, Steve and the CPT team. I was so touched by this. Jed loves the Ben10 jacket! On the way home from the hospital Jed had the jacket on and just before we got home he started screaming for me to take it off, I couldn't understand and thought that maybe he didn't like it.... so I took it off and just in time, he vomited all over the car, mess every where, and then he said, "okay mom put my jacket back on now!"... so cute! He slept in the jacket. The Ben10 bag is also so cool.. and thank you for thinking of me... I now have at least ONE reason to bath (don't even dare comment on that!)

Then to Auntie Gen, Uncle Mike, Shane, Jordi's mom and dad, I don't know how to thank you all for the love and support you continuously provide to Jed and I. Your own plates are so full with Jordi's cancer yet you still find energy to visit and surprise my little man with the awesome motorbike. He was overjoyed and he can't stop talking about it. He is a huge Auntie Gen fan and can't stop asking me if he can play with "that girl who bought me my bike".... I ran behind the bike most of today and it was wonderful to see him outdoors and having so much fun. It is so cool as it is battery operated so even when he is exhausted from treatment he can still ride it. I thank you from the bottom of my heart!

With lots of love and a request as always for prayers for Jed, Jordi, the Gwans (Soccer Gwans liver tumours have shrunk - praise God), and for all the precious little ones at the JHB General Hospital.

How life will change for me over the next year, it scares me and breaks my heart so please pray for strength, faith and persistence for this broken mom. It is so strange as no matter how often I hear the facts of Jed's cancer I still believed that this was almost over and life would maybe return to semi normal. I pictured myself in a little half day job, in my own little place with friends around me and going to kiddies parties... well bla bla bla bla.... this fight continues....!

Attached is Ben10 the biker dude (new Jacket and bike!)

Love always
Bon and Jed x x x

Jed's Story

2009-03-23T17:08:00.000+02:00

17th March 2009

Jed’s story:

Looking after your tomorrow becomes impossible when you hear the words, CANCER followed by we don’t have a cure, your son has two years to live, and it is BRAIN CANCER. Brain tumours can be benign or malignant. Surprisingly they are the most common tumours in childhood. Yet I have never heard of or come into contact with a child who has one. Cancer was what old people who smoked too much got!
I’m a single mom who lives for her precious, adorable baby boy. Jed Brady Thomas/Suckling was born on the 3rd of November 2004 after 18 hours of labour I saw the most beautiful child I have ever seen in my life. He was so healthy and scored 10 out of 10 for his birth test. I was proud. I counted 10 toes and 10 fingers and smiled at how lucky and blessed I was to have such a healthy little boy!
In August 2008, Jed started showing signs of being slightly ill. He had headaches, he vomited a few times over a period of about a month and he was a little moody. He is normally a gentle, loving little guy and I couldn’t understand his sudden outbursts and temper tantrums. I was told it was normal. Jed’s appetite also got worse, he hardly ate anything and I would worry all day. Other mom’s would tell me to make a game of eating. I was obsessed with getting him to eat. I took him to several paediatricians and doctors and they all seemed to come to the same conclusion; Jed had allergies and they even did an x-ray and confirmed his sinus’ were inflamed and the best treatment was Neurofin for pain and some allergy medication. However, the symptoms didn’t go away and night after night I rushed him to hospital to be told NOTHING was wrong. My gut told me it wasn’t true.
His dad insisted that we do a CT scan and that was when we realised Jed had a brain tumour. It was large but they could operate. I was shocked and could physically feel my heart pounding in my chest. I wanted to scream, run, hide but knew I had to be strong for Jed. The doctors and neurosurgeon put Jed onto corizone to reduce the swelling and prep him for the operation to remove the growth from his Cerebellar Hemisphere. The day before the operation Jed’s hands and leg were shaking but other than that he was fine. He was building puzzles and running up and down the ward like any other healthy child. At night he would roll around in our little hospital bed but I’d sing to him or tell him a story and he would drift off to sleep again in my arms.
The 9 hour wait for the surgery to end was the longest 9 hours of my life. I stood outside the theatre for the whole night hours. I refused to eat, drink or move until I could see my baby was okay. When he came out of theatre I believed the worst fears I’d ever had were over and life could return to normal. The surgeon told us that the tumour was benign and he had removed all of it. The surgeon become my hero, I could almost see a halo around his head...We had spent 4 long weeks in hospital and when Jed had fully recovered we went home to Pietemaritzburg. Jed stayed home with a nanny and an aupair; I decided to home school him for 6 months to ensure that he had fully recovered. I returned to work.
On the 9 th of January 2009 (Friday morning) Jed woke up early so we decided to build a puzzle quick before I went off to work. He built it while I showered and got dressed. I came to have a look and prize him. I said, “wow that is gorgeous my baby, clap hands for Jeddy!”.... my heart sank Jed’s hands could not meet, he looked like a spastic child. I asked him to run to the kitchen and get some water, and he hopped. He looked at me and said “mama I’m wiggling in my leg and arm”. I rushed from Pietermaritzburg back to Johanessburg with tears flowing down my cheeks the whole journey back. I knew the monster tumour was back. I called the nanny and then the aupair, both of them assured me that the whole day on Thursday he had been fine. The aupair even mentioned they had enjoyed a game of soccer and Jed was fine, bouncing around and having fun.
An emergency MRI was done on the Saturday and on Tuesday the 13th of January 2009 the tumour was removed. The pathology report showed a Myxoid tumour that was behaving like cancer. How the hell do you behave like cancer? Let me tell you, you grow faster than any normal cell. You take over, you invade and you cause pain that rips into your soul of your loved ones! You are an intruder, unwelcome and hated! Pain that is physical ripped into my entire body. I had a nervous breakdown that day and was prescribed anti depressants to relieve the anxiety. No pill could take this pain away but I knew this was not about me, it was about Jed and Jed needed me to fight at his side day and night.
On the 12th of February 2009 a follow up MRI was done and I was told that the tumour was back in 3 nods and even more aggressive than the doctors could comprehend. I was petrified. I heard the words rare, Jed has about two years, I’m sorry, and I wish I could do something to ease your pain. I cried loudly and uncontrolled in the surgeons rooms. I wanted to hit him as my body filled with anger. Where was that halo now!!! I wanted to know WHY he had not got all the tumour out. I trusted him to do that, get it out and save my boy! He explained that it was like slicing bread if you leave one crumb the tumour comes back.
No one can understand the hurt and pain a mother feels when she faces her worst fear. I can’t live without Jed, he is my sunrise and my sunset. He is reason I wake up, I work and he is all I need to get me through any day or night. I have slept with Jed in my arms since the day he was born. Now I lay awake praying with all I have inside of me and begging God not to take my son.
Chemo and radiotherapy have started and continue for the next 5 weeks. Jed has two big bold patches on his head from the radiation and each time I look at those patches of missing curls, I feel the hurt that only a mother would understand. My love for Jed is so intense, I have prayed many nights for the Lord to give me the cancer. My life means so little in the bigger picture, at 34 I have had my chance to live and make a few mistakes. At four years old Jed is perfect, he lives to kick his soccer ball and play Ben10 or Ninja Turtles.
Through painful headaches, nose bleeds, surgery, chemo and radiation my baby does not complain, he is brave and the only superhero I have ever met. He is stronger than any man I have met and is beyond amazing.
I’m sharing my story to ask for medical support, guidance or just a loving e-mail to get me through the dark days. I wish there was a support group of mommy’s who understood my pain. I can’t attend a meeting or meet for coffee. Jed and I live in isolation as he goes through his treatment. I have resigned from my job and now look after him 24 hours a day. We live at the home of his dad (my ex of about three years) who pays for all our day to day expenses. His love for his son and made it easy for him to open his home to me and Jed.
With love
Bonni
(aka Jed’s mommy)

Hair loss sucks, Jordi and Jed, Quantronics and Happy Birthday Christopher!

2009-03-23T17:07:00.003+02:00

10th March 2009

Hi all,

Today's fasting and prayer went well, Jed had a good day and dinner tasted LOVELY!

Jed's radiation session went very quick, he was a super star. Michelle (Jordan's mommy) arranged today's bribe. It was full of BEN10 goodies and a very awesome BEN10 speaker thing and the ULTIMATE WATCH. Jed now owns every single BEN10 toy out there! Michelle and Jordan have been on my heart today as I prayed for my own son I thought and prayed for Jordi and Michelle. Jed and I visited with them on Monday and it was a wonderful day. Jordan has the most beautiful loving family and Michelle's strength just amazes me all the time! The boys had a swim together and I promise you I noticed Jordan using his little legs at more in the pool. It seemed allot better than the last time I saw him. My heart was full of pride and hope! Please pray for fear in Jordan, I see a very frightened precious little boy! Ask God to give him reassurance that he is okay and that soon this ordeal with be over and he will be kicking a ball with his friend Jed!

Today is Christopher's (Janet and Andre's son) "actual" Birthday! Jed can't attend his party on Saturday; so today we had a very special day with Jed and Christopher having BEN10 cupcakes, presents (for Christopher) and a special party just for Jed to celebrate with his friend. Very special! Christopher ran and washed his hands before hugging Jed hello. He said "Hi Jed, I had to wash my germs off so they don't jump on you!"

On the way home from Christopher's house today, I removed Jed's buf (his little red scraf that he wears to protect his head from the sun) and I noticed with shock that his hair had fullen out on the cerebellar (back of the head). I was so taken back, it happened some time during the day. Jed's hair is very short but we cut it like that as you can't wash it during the radiation. The two spots are bold bold bold. It makes it so much more real.....

Some better news, is my dad phoned me today, he hasn't spoken to me since he heard that Jed has cancer.

Conversation,

Dad: "hey my little bird (me)"
Me: "Hey dad"
Dad: "your mom and anne made me phone, so hello, I love you"
Me: "I know dad"
Dad: "Bird, I love Jed too"
Me: "I know dad, I know"
Dad: "So the doctors say it isn't good, so now I pray Bird, bye"
Me: "Thank you, I love you daddy, bye"

Honestly I've left nothing out!

Now, for anyone who knows my dad, the fact that he called is amazing, but the fact that he said he would pray is even more odd. You see, my dad doesn't believe, he has like zero faith, and I think he may just pray! I found the call to be very special. I adore my dad, and I have no doubt that the only reason he can't speak to me is because he loves me, and hates to see me hurting.

I have attached the DNA report for everyone to see, and please comment on it (if you have heard of this machine). Thanks to DHL for the overnight super fast delivery. The Quantronics machine is what the other child with a similar tumor to Jed used and his parents believe it put him into remission. It is like the Rife machine, only you don't need to hold it. I welcome any input. I did phone the man Juan and I discussed the treatment plan and he also advised that we could hire the machine afterwards (after chemo) for R1500 a month (including service fees) - now we pray that this is an answer to prayers!

Today, I attached a picture of Jed and I just hanging out!

Love, hugs and thanks for your prayers
Bon and Jed x x x x

Fasting for Jed, Jordi and others!

2009-03-23T17:07:00.001+02:00

Hi all,

Jed was sick as we arrived at radiation today, he vomited 5 or 6 times before the treatment even started. In the vomit was the yogurt that took me an hour to get him to eat, major annoyed to see it in the yukkie stuff!!! Radiation went very well today and he was a little angel.

Jed's eating is a concern, he is eating very little but seems to be drinking okay. I have been giving him a milk supplement but during chemo we are told to monitor the amount of vitamins he gets. He has gone off some of his favorite things, yogi sip and peanut butter!

We had a good weekend at the gwans (Soccer and Funny) and Jed was delighted to see a parcel arrive all the way from Australia. Thank you so much Rodger and Carol (my precious Uncle and his lovely girlfriend!). Thanks to the gwans for spoiling him with love, attention and toys!

Dad (Ray) did the shave thing for his son!! Attached is a picture! How cute they look!

Tomorrow my family and church members will be fasting for Jed and Jordi. It will be a 6am to 6pm fast (you can drink), please feel free to join us or give up something for the day, anything that will remind you to stop and pray for these two precious boys and anyone else who may need the Lord's healing (my brother Larry (brain injury/depression), Soccer Gran (cancer), Funny Gran (tiny winy strokes), Cindy (cancer) and Uncle Bob (cancer).)

With lots of love and hugs
Bon x

Jed had a wonderful day, thanks to his old PMB toys arriving!!! x x x

2009-03-23T17:06:00.002+02:00

Hi all,

Jed's radiation went a little better today. They slit the mask to allow for his brain swelling so it wasn't as tight. Jed is starting to feel a little more sleepy now. He slept really late this morning and only woke up at 09h15. He is his precious, lovely and gentle self today and we have had a wonderful day, playing TV games, building puzzles and playing with all his old "PMB" toys that were delivered to the house. He was delighted to see his ninja naddies! (Ninja Turtles!)

The oncologist reassured me today that he is doing all he can for Jed, he did say that the chemo is not used on children and we can only hope that the outcome is positive. They work out the dosage based on weight and this is how they determined how much to give Jed. He also said that I can give Jed pain med's if he is sore but the pain seems more from the tightness of the mask than a headache as such. I will just monitor him. He has an appointment to see Dr Klass for Blood tests tomorrow. His dad, Ray, will take him, I just don't have the strength to watch him fight it, his veins are very bad and it can take 3 or 4 attempts to get the required amount of blood. Considering my current state of mind, I know I just couldn't face it. We have radiation in the afternoon (please pray that he is good, Mandy has a day's leave!!!). I have also made the appointment to see the counsellor for myself and for Jed. We will start with play therapy on Monday. This is to determine how Jed is coping emotionally with the treatment and all the changes that are going on around him. I will then see her alone, she did mention that she believes I am in denial on how serious Jed's condition is and that I need to realise it is not skin cancer, IT IS BRAIN CANCER. I need to explain to her that if by some chance I wake up one morning and do realise it, I'm going to be finished. She just needs to leave me in "la la" land for now!

Jed loved his rugby ball, but I think he would have been happier with Mandy's signature. But thanks anyhow Percy!

I have received some mail from people I don't know that have heard about Jed and they have mentioned that they are praying for him as they received a mail sent on from a friend or family member. I thank you for this, as before God we stand in numbers and pray for complete healing of this precious child.

Attached picture shows how cute his funky new head gear is! He is totally cool!

Please also remember Jordi in your prayers and his mommy Michelle!

With love
Bon

Update on Jed

2009-03-23T17:06:00.001+02:00

Hello my friends and family,

Jed had another hard session of radiation, he has swelling on the brain and this is caused from the radiation. The process is not painful but the mask is now VERY VERY tight and this hurts his precious little face. I have made an urgent appointment to see his oncologist to discuss the option of cortisone to control the swelling. I have also made a pediatrician appointment (Dr Klass) for blood tests and to discuss pain relief. I will also see Janet Poole at the JHB General hospital to discuss the status and her views on the swelling. I may also put my pride in my pocket and see Kotzen. I knew that this was a possibility and I am sure the doctors will ensure that it is controlled.

DHL came to collect the DNA samples, photos, MRI reports to send to the team in Klerksdorp for evaluation. Thank you Norms! Erich is still in remission and this is the child that had the same tumor as Jed. I re-read Jed's MRI report and got all emotional I just believe that the UGLY thing has 3 nods now. One of the nods is 2.7 cm at time of MRI - let us pray that the BEN10 lights have sorted his UGLY nod head out!

Kirst, Penny, Fay and Christine THANK YOU so so so so much for the bribes, it has become very difficult for me to go to the shops so I can't tell you how much I appreciate it. The BEN 10 walky talky, alien fizz ball and watch attachments are very cool! Tommorrow's bribe is actually very special it is a 2007 Rugby ball signed by the springbok team - Percy Montgomery wrote a very special note to Jed "To a very special champ Jed, from YOUR NUMBER ONE FAN, Percy!" The marketing team of Ster Kinekor sent it! Very special.

I have attached a picture of Jordi and Jed. Jed had a wonderful day playing with Jordi, and they actually had a little swim (do not tell the boring medical team!!!) We made sure that Jed did not wet his head (that was added to prevent my mom from having another stroke!). Although Jordi can't walk he is moving those little legs in the pool and this means that there is hope!

Please pray for Jordi's beautiful mom Michelle as Jordi's radiation started today and he had to be put under GA for the process. Also pray for healing for precious Jordan!

Please pray the swelling is controlled and for Jed to be pain free! Please continue to pray for strength for me, I have had a very difficult few days, and although I try very hard to control my emotions and ensure I remain positive for Jed, at times I am breaking down in front of him and as you know this is not good for him, I am his strength and he needs a super strong mama!

With love and hugs
Bon and Jed x x

mmmmm walking through fire 24/7

2009-03-23T17:05:00.002+02:00

Hi all,

Jed's radiation didn't go well today and we both landed up crying. I really felt like running away today... It took over an hour to calm him and the waiting room was full of people waiting to go in for their treatment. Jed did not want to co-operate and was complaining that his head was sore. I'm not actually sure if it did hurt or he was just delaying the process.

His temper is also getting really out of control. He seems to shout and scream all day long, it is very frustrating as I have been spoilt for the last 4 years with a sweet, gentle and very calm little guy. He has always been full of energy and a little mmm naughty but now he seems aggressive and I am not coping very well with the constant outbursts. I am going to see the counsellor early next week as I need to start play therapy with him. He made a comment on the way to radiation which I believe might have set us both off.

Jed: "mama I'm sick"
Mom: "no you are not, we go for scanning (radiation) to kill the ballies (tumor) in your head"
Jed: "and then they will pick (operate) me again"
Mom: "no baby, dad and mom said no more picking so that is why we do scanning now"
Jed: "thank you mama, will the Ben 10 lights kill the ballies mom"
Mom: "yes baby, yes they will"

Then I thought about how dam unfair this all was, 2 9 hour operations, chemo, radiation, headaches, frustration, it just seems just too much for a little beautiful boy to deal with. I sometimes can't understand why this has happened and I look for reasons all the time. Jed is my whole world, he is my sunrise and my sunset, he sleeps on my pillow every night and if I can't feel his little feet kick my ribs throughout the night I can't sleep! Why would this happen to my baby! This is how I am feeling today and although I s try sound positive, today isn't a good day for me and I'm sharing this with you coz I believe that I too need some prayers! I can deal with the fact that I don't have my little home, my veggie garden, my job, my friends (living in isolation), my precious boyfriend whom I miss all the time but what I can't deal with and will never be able to handle is the thought that these ballies are not being killed by the Ben10 lights! God Please!

With love
Bon
PS: Jordan will start radiation tomorrow, please include Michelle and Jordi in your prayers!

Prayers for Jordan and Jed! x x x

2009-03-23T17:05:00.001+02:00

1st March 2009

Hi all,

Firstly, my mom is back home, it was a mild stroke from stress and uncontrolled diabetes (brat!).

The trip to PMB was over so quickly. I arrived at 19h00 on Friday night and I was back in Jhb by 15h00 on Saturday. Thank you to my precious friends Penny, Fay, Debbi and Nelly for being there is help me pack, wipe my tears and say a beautiful prayer before I left. I was so scared going down and your support got me through, never mind Fay who never allowed me to dwell on my misery - it was all work, work, work so that I could get back to my darling boy. I love you guys and thank you so much for the gorgeous presents for Jed! Thanks Christine for the great Ben10 walky talky!

Jed has been great all weekend, his dad did a fantastic job with the chemo on Friday, he did so well that dad is now "in charge" of all chemo!!! Well done dad!

I went into the chemist the other day to get myself some vitamins and Ensure... and the ladies in the chemist commented on how awful I looked, "oooo so skinny, and such big dark circles under your eyes, what on earth is going on...bla bla bla bla" anyhow I explained the story about Jed and what was going on and after some tears and hugs I left.

On the way down to PMB I got a call from a mom called Michelle who got my name from the ladies in the chemist. She started the conversation by explaining that she has a little boy aged 4, Jordan who has cancer on his spine. He has had 3 rounds of chemo and a major operation which has left him unable to walk. He too has a VERY rare tumor and it is also in nods, which means he needs radiation. Michelle was told that Jordan will need to go under general anesthetic each time he has his radiation (same was told to me!!!). I have encouraged Michelle NOT to allow the doctors to do the GA until she has tried the method I use with Jed. Michelle is hopefully going to come to the radiation session with us on Monday to see if Jordan will be able to cope without the GA. What a God send Michelle has been, I sobbed on the phone with her and it was so "nice" to be able to share my fears and speak so openly with someone I know without a doubt understands what I am going through. Please add Jordan to your prayers. I am looking forward to meeting him. Until November 2008 Jordan was a normal healthy 4 year old boy, now he is on chemo and can't walk. Life is sometimes a little too harsh for us to understand. I thank God that Jed has regained the use of his leg and arm post surgery, sometimes I forget how good God has already been..... Thank you Jesus that our Jed is still able to kick his ball and run around driving me crazy.

Please remember Jordan and Jed in your prayers, may God also give Michelle the strength to walk this difficult road.

With love
Bon and Jed

With love from Bon and Jed

2009-03-23T17:04:00.002+02:00

Hi everyone,

Today was hard... but let me start with the good. Jed woke up and came thru to the bathroom - there I was trying to make an effort to look human... lipstick in hand and brushing my hair. I then walked to the room to get dressed. When I got back to the bathroom, Jed was covered in my make-up so I ask him what he is doing... and he says "mama I want to be bootifull for that scanner lady" (Mandy!)

The blood test was so difficult, Dr Klass could not find a good vein so after 2 attempts and allot of kicking, screaming and biting he managed to get the required amount for the tests. It took 4 of us to hold Jed down... now that is what I call a fighter. After the tests were done, I wiped my tears and went up to pay Dr Klass. As I walked in to hand over the money (R525) he looked at me and said "Bonni this one is on me, just please I'll see you next week".... Dr Klass looked exhausted. What a kind man, I just can't believe how special he is. I love the fact that I can see when he is holding Jed to take his blood; it looks like it is actually hurting him more than Jed. You don't get many doctors like him anymore. We are blessed to have him! The blood test results came back all fine, the white blood cell count is still very good.... let's hope it stays that way! Chemo fights the blood cells....

After that we were off for radiation treatment and to see MANDY!!!! Jed was delighted to see her. While Jed and Mandy chatted; I met with the Reach for a Dream lady. The first thing I asked her is why she decided to come meet with Jed, and her answer made me sick to my tummy, I almost vomited .... she said "I see all terminal kids in this area and the very very sick ones to make their dreams come true"... after that all I heard was bla bla bla bla bla bla.... I actually didn't hear anything else she said... I kind of blurred the meeting out.... I guess she realised that, coz she later asked the radiation team if they could think of what Jed would like... Mandy suggested any Ben10 toys or anything a 4 year would like, spiderman etc..... She left a teddy that said Reach for a Dream... for whatever reason I hate that stupid teddy!

Chemo went okay, one of the pills started to melt before Jed could swollow it and I had a total panick attack but I literally poured the juice into his throat. His sores on his mouth are almost clear which is wonderful. The only issue I guess now is Jed's aggression which is so dam difficult to handle... he is so moody and he shouts, screams, fights and throws himself around. This is so different from his normal loving and sweet nature. I asked the doctor about it and all he said was, "radiation chemo brain cancer Bon... I'm sorry!"

My mom is still in hospital (but feeling so much better), my brother seems to have made a break through in one of his sessions today so a special thank you for keeping them in your prayers.

I'm off to PMB (my favorite place) to collect some of my personal goodies and Jed's toys. I will leave after chemo on Friday and be back on Saturday before chemo (no radiation on the weekend). I'm nervous to be away from Jed and I'm also nervous to see my gorgeous little home and know that I will not go back there. My home is really stunning, a little cottage in the forest with the cutest monkeys that play on the roof. My veggie garden will properly reflect my mood after being left all alone for so long. My ex PMB team are meeting me at my home to help with the packing. Thanks my special friends!

Have a blessed weekend and please keep my baby boy in your thoughts and prayers as always. Your love has now become my strength so no pressure!

Love
Bon and Jed.

Jed and Mandy.... is it love!

2009-03-23T17:04:00.001+02:00

Hi my precious friends and family,

Well I've just heard the news that my mom has been rushed to hospital. I knew that with my brother very ill in hospital (clinic) and the news of Jed's brain cancer that it would take it's toll on her. I'm not sure how she is (I have a feeling it is being down played to me!) and I ask only for your prayers. Boy when the wheels fall off they really do! My mom's name is Jean and my brother is Larry.

Jed had a good radiation session today and was a brave "still" soldier. and.....He has also found LOVE.... he has developed the biggest crush on one of the radiation ladies. Mandy! His whole face lights up when he sees her and this morning he said "mama I must be extra smart to see my Mandy lady by scanning today"... I actually only clicked when we arrived that this was in fact true love, he ran up to her and gave her the biggest hug and kiss - smack on her lips. She actually is very pretty and I will try take a picture of her for you.

At the pharmacy today, I was explaining to Jed that he couldn't eat his chips with his dirty little fingers coz he is having very strong scanning (aka chemo and radiation) and that the germs might sneak into his body. I didn't realise that the women behind me was listening but I heard her sniff. I looked up and immediately apologised for upsetting her (if I was the cause). She just smiled and said, "no i'm sorry, you see I also had a daughter once and she was just as gorgeous as your son!" I was shocked and just said "oh I'm so sorry, what happened" and she replied that her daughter also had cancer (Jed looks like a chemo kid now - the hair is a give away and the monster red mark on his cerebellar), she was diagnosed at 5 months with kidney tumors and died just before her 2nd birthday. This ladies daughter would have been 27 this year. I then asked the most stupid question - it just blurted out - I said "WHY DID YOU KEEP LIVING?" and she replied between tears "my darling, I don't know and I ask myself that all the time".... what an honest answer... she then said "but your son will be fine, I have faith". She said it with such conviction, if the doctors spoke like her I think I may stop my nagging researching all the time!.... I wish I'd gotten her name, this beautiful 50 something person but what I did get... is a hug and allot of positive energy!

Jed is still having nausea in the mornings and evenings but the nausea is almost instantly relieved with the new medication. Amen! Tomorrow is a big day for a few reasons, Jed gets to see MANDY at radiation (I'll be sure to make him look extra sexy); we have blood tests, which will determine how his count is looking; and we get to meet the team from REACH FOR A DREAM, they heard about Jed and have set up a meeting with us. They said I need to think of his dream... well his dream is to be big like his dad!

(nagging research time....) There is a child which we have located from "moments, 2009 cancer calendar" with a MYXOID TUMOR (the same cancer as Jed) and this child is in remission and is in Pretoria. The medical team work out of klerksdorp and the treatment they used is very new and sounds like a machine that you plug in at night and it sends out some kind of rador signal and the dad believes this has stopped his son's cancer. His son also had chemo but they did not do radiation, they did 3 surgeries as opposed to us, who decided on radiation verses surgery. The machine can't be used whilst you are on chemo and the technology is very very new. But the man in klerksdorp has asked me to send Jed's latest MRI, some hair (mmmmm) and nail samples, the pathology reports, and a photo of his eye. This is going to used to determine some kind of DNA analysis and to determine if the machine will work. Yes yes yes yes, it sounds odd.... I have not gone crazy but the reality is HIS SON IS IN REMISSION - he has quarterly MRI scans done and his child is doing very very well. I'm busy getting the goodies together and I'm hoping to post it off to the medical team tomorrow. I can just see my doctors face when I inform him of this technology - but I will NOT GIVE UP! Again, I thank my darling sister Lulu (Shelly) for locating this child and for stalking his parents until they replied. Lulu, your love for Jed and I has been so amazing - I love you so much for your determination!

Today's prayer request is for Jed, my mom, brother, hell include my dad who hasn't stopped drinking since the news of Jed, and that Mandy is prepared to wait for Jed until he is 21.....! (Mandy is about 20 now)...

With lots of love and appreciation to each of you.

Today's picture was taken with his new cool hat to protect his head from the sun (radiation = no sun shine!)

God Bless!
Bon and Jed

Pilchards can make you feel like a winner!

2009-03-23T17:03:00.002+02:00

Hi all,

I'll start my e-mail with a little light hearted story. Jed and I went into OK (the shop) to get a few things before radiation today, anyhow we spent over R150 so we got to pop a balloon (some or other promotion). I put Jed on the counter and he popped the balloon and inside was a little note that said we had won a prize. He was delighted and started shouting and running around saying "yippee yippee i'm da winner". Anyhow, his prize was Lucky star Pilchards (hot chilli) a small tin. Anyhow when we arrived at radiation I had to go back to the car and show everyone at radiation the tin of Lucky star Pilchards. Jed is so proud of the prize he won - I think he believes it is some kind of trophy. All the girls at radiaiton clapped for him and said that he was so clever for winning such a great prize. My clever boy! We have the tin on display in our lounge now!

Radiation went well - he lay very still, I have included a picture which shows him laying down and what the mask looks like. It is VERY tight and it actually holds his head in place while he is having the treatment done. It is so tight that afterwards you see the red marks on his face from how tight it is. He cried allot today and he really needed mom's hair and the HEAD!!!! But he did calm down. Today's bribe was a Jedi sword with lights - he loved it!

Jed hasn't had a good afternoon since the treatment and has been vomiting allot. I think the combination of radiation and chemo is starting to show the true signs. He was very "lazy" this evening and didn't wanna play much. He also has terrible mood swings and gets very cross for very silly reasons. My patience is really being tested, but lucky the love I feel for him is enough to endure the odd "eina" I get from his frustration. Some more good news, is that the sore in his mouth has popped and seems allot better today (it was starting to really worry me!).

Thank you again, for the beautiful messages I receive by mail and sms, please promise me that you are not forgetting Jed in your prayers.

And to my darling sister, thank you so much for the very smart juice machine you left at Sandton Oncology. This is going to save me hours of time and I can't wait to try it out. Sipho (aka Jed) and I will be making juice in the morning and I'm hoping this will be faster than my old machine which sometimes took an hour to make 200 mls.....(excluding clean up time) I love you Lulu, you are so special - Jed loves his Aunty Jelly!

Lots of love and hugs
Jed and Bon x x x

Making the most of time!

2009-03-23T17:03:00.001+02:00

Hi guys,

Thank you to each of you for the special messages I received.

I'm having a bad day and I guess that is normal. Radiation went well today, Jed was so so so brave, he lay so still - i counted to him, 1 BEN TEN, 2 BEN TEN, 3 BEN TEN and he lay so still like a little angel. The radiation goes in 2 sessions - each session lasts just over a minute. It is a huge thing to lay still for a minute (and about 7 secs) when you are 4. But my brave 4 year old can do it. Today he got WOLF GUY from Ben 10 - he has 3 aliens in total now and the excitement on his face when he opens each alien is truly a blessing and worth every cent.

The chemo is yuk, I believe that is what is contributing to his mood swings (either that or my genes!) however, the nausea has improved and I say thank you to everyone who prayed for him after Friday night. Saturday and Sunday were both good nights.

I'm scared today and full of negative questions but I'm trying really hard to be strong for Jed. I was crying allot earlier and Jed asked me why and I said it was coz I miss watching BEN 10 (our DVD machine broke earlier) he totally understood my tears... and marched off! The reality is that we went to play at the jungle gym, and I watched all the other mommys "playing" with their kids, I was wondering if they were thinking of what is on the stove or about the next soapy... coz none of them looked all that interested in playing with their kids. I LOVE playing with Jed, it has always been the best part of my day, coming home and spending those quality hours kicking a ball or running around.... so how come if I enjoy it so much God is allowing my Jed to go through this.. yet these other mom's don't seem to like it as much. Such a selfish thought hey....???but one with a message, enjoy playing with your kids.... trust me, I was one of the people who said, "shame that is so sad, and then thought, that "stuff" is awful but "knew" it happened to "other" people" Now i'm "other" people....

I'm also petrified about chemo on top of radiation - I look back to Friday night and I'm so nervous to re-live another night of vomiting, sweating and his little body shaking. Saturday and Sunday the chemo went well but then again, there was no radiation..... already on the way home today, he wasn't feeling great.

I missing my little home in PMB, with my veggie garden, i'm missing seeing people, i'm missing Jed playing with his friends and even missing my job.

Living in isolation is no fun..... and I believe it could be contributing to my ikki state of mind today, I keep busy - that way there is NO time to think, if I had to stop and think I would go crazy (crazier).... The cancer association phoned today and asked if they could send a lady to see me, and I was like ...mmm, okay, why, and the guy replied saying because she had breast cancer and she can relate to you.... I said nope, that if I had cancer, i'd be sad, but to watch your CHILD suffer is far far far far harder... i would trade places with Jed in a heart beat (even tried to barter with God on that one!) So the cancer association dude was very disappointed that he couldn't help. I guess no one could, unless they were going through the same thing... so I say, bring on the prayers coz really that is the ONLY support I need!

Love to all, and I promise to be more chirpy tomorrow! Please please continue to pray for Jed! Uncle Joe - your mail was beautiful!!!

From
Bon and Jed

2 days down and this was a brilliant one!

2009-03-23T17:01:00.000+02:00

Hi guys,

Here is your update....

The radiation session was at 08h15 this morning - Jed was still zonky from the chill med's he was given the day before - he slept from 17h00 - straight through and was still all sleepy when I dressed him this morning....mmmmm this does not please me at all. So this morning I told the radiation team that I was NOT keen on the chill meds (Vallergan Forte) and I wanted to try the treatment without it. I spoke to Jed and explained that if he was good he could get "4 ARMS" the Ben 10 Alien (thanks once again Grans) and he was as good as gold. I spoke to him over the radio and watched him on the monitor - he did not move. I was so proud of him, in fact we went and bought a lazer gun aswell to celebrate his "goodness level". He slept in the car on the way home but is up watching Ben 10 now and full of beans.

The chemo medication has arrived and we start that later on today. Let us pray that it kills off the tumor bugs or tails or growth spuds whatever the horrid thing rather to itself as and that together with the radiation we MURDER the tumor! Amen to that!

Other than that, Jed is looking very sexy with his little shaved head, a picture attached!

For those of you who have asked some questions let me answer in one mail,

YES financially we are fine! Jed and I have moved in with Ray here in Jo'burg (Germiston).
Jed is on Ray's medical aid
Yes, I have resigned from work, DHL has been wonderful and so very supportive, I was blessed to have an awesome boss!
No, I will not be going back to PMB - only to collect some odds and ends but I will sell off my goodies there.
and lastly, please I will ask for counselling if I need it, I have a shrink giving me some light anti depressants - mild dose, I have the worlds most wonderful pastor, I communicate with other moms on the web and have joined a site called TUMOR's SUCK and I chat to other people there. That is fine for me. I also see a social worker at the radiation clinic and trust me, they are watching me. All i need is the love and support I have received thus far, when I feel I can't cope - you, my friends and family will be the first to know, you have my word! I'm very strong at the moment and I believe this is due to your prayers and OUR positive belief that NOTHING including some ugly tumor will take away my baby boy!

So on that note, have a wonderful day and chat soon.

Again, I thank you for your prayers and continued support!

Lots of love
Bonni and Jed x x x

Jed's radiation (1 down - 29 to go....)

2009-03-23T17:00:00.000+02:00

19 February 2009

Hi all,

This is gonna be a quick mail as I'm emotionally drained. Once again, I would like to thank you all so much for your beautiful messages of encouragement and hope. Please keep them coming, I have always been such a "closed" person and the love I have been shown during this very difficult time has shown me that people are really beautiful and that you care! It is so special and overwhelming.

Jed was very brave today for his first radiation treatment, in fact he did so much better than his mommy. Before we went in, I grabbed a pair of sissors and I cut my hair as it has always been his comfort and handed it to him on the radiation bed before it started and he looked at me from under the bright yellow mask and said "mama I need your head with the hair" - so my great plan failed! His little tears filled up the mask and he fought the process. The Ben 10 watch was the only way to keep him still, I promised that he could open it as soon as the "scanner treatment" was finished!!! He finally calmed down and the radiation took place. The whole thing must have taken 5 mins but the prep took well over an hour. I spoke to him on the radio through the treatment and I could see his tiny little body laying on the table with the monitor. Kind of felt like I was watching a bad home movie; I actually got a fright when I realised the bad movie was my life and the star was my baby boy!

I remain positive and have had some communication from the states regarding chemo that is working on some of the patients over there. I have forwared the info to my medical team, whom I think I irritate with my nagging .... however, my nagging will continue !!!

Jed is sleeping peacefully now and is still a little drugged - I gave me something to calm him, it actually only worked when we arrived home!

Mom (Funny Gwan), Thelma (Flower aka Soccer Granny) thank you both for the wonderful Ben10 presents, they should keep us going for a few more treatments but mostly thank you for your strength and love. - one down 29 to go! Mom i'm so proud of you, whilst both your children are going through a hectic time, you remain our rock (a bit wobbly but a rock none the less!)

The rest of my family and dear friends, I ask only that you keep praying for Jed and ask God to give us the strength we need to support Jed!

Lots of love
Bonni

So chemo really sucks!

2009-03-23T16:46:00.000+02:00

Last night was hectic. The chemo pills popped down little Jed far easier than I thought. I was really worried about my tiny man swallowing 5 large pills but he did it with ease. We finally got him to sleep at about 21h00.

At midnight I woke up with such a fright and then about 2 seconds later Jed started to vomit. There in the vomit was the mac and cheese and the fresh juice I had bribed him to eat and drink. He vomited none stop for about 2 hours - his little body was shaking and hot. He was sweating. Ray and I sat with him talking and trying to keep him calm. If I gave him a sip of water - blast - the water came out... nothing seemed to stay down. Thanks VALOID!!!! Then for another 2 hours his body lay heaving and he was grinding his teeth.... I asked him if he was okay and he said "mom you know i'm sick" so I say "yes my love I can see that and mom's here with you" and he says "well mom, I'm only sick coz I need my lazer gun that is in dad's car, if you get the gun I will be better".... so at least I finally know the cause of the brain cancer - the dam lazer gun!!!!

We had no choice but to rush Jed to hospital this morning and I knew the whole ride there that the chances of yet another overnight stay was inevitable.... but I prayed and begged the nurses not to admit us... I got him to hold 100mls of apple juice and a slice of bread before the doctor arrived. He said if I managed to keep him hydrated I could keep him at home. 600mls every 6 hours. He also changed the medication for nausea to Zofran Zydis 4mg every 8 hours (more dam pills) so i'm hoping this will stop the vomiting. I need that homemade juice in my little dude's tummy!

Jed is doing okay today, he is allot calmer than his normal busy self but he is doing well considering. Last night I lay thinking (or going mad), each time he vomits the "weed killer" (my new name for chemo) is killing the cancer cells and that inside each little vomit is tiny little bits of tumor growths, so tiny you can't see them with the naked eye! The chemo is slowly killing them - behind the "weed killer" is the power of our prayers and the strength of Lord - watch out cancer - you are in for the fight of your life and we are looking forward to seeing you die! Yebo!

I'm off to watch Ben10 again and enjoy some time with Jed. Allot of people have asked if they can send Jed a toy or a present... you are more than welcome to get him a present or even better take the money and put it in the collection box at church or buy something from some cancer organisation.... but if you really want to get Jed a toy please feel free to do so. You can drop it at Morningside oncology - we go there for radiation every single day (next to Mcdonald's in Rivonia road) - Just say it is a present for Jed - they all know him there or give the present to Andre B in I.T at DHL - I'm very good friends with his wife Janet and she will ensure the present gets to Jed. But, honestly, all Jed needs is your prayers.... We don't invite people around or go out coz if you thought I was paranoid before - YOU HAVE NO IDEA HOW BAD I AM NOW!!!! But the reality is that Jed doesn't have the immune system (at the moment) to fight off daily germs so we stay home, build puzzles, watch Ben 10 and play indoor soccer.

I ask again that we don't stop praying for Jed's recovery.
Lots of love
Bonni

Chemo on hold - PRAYERS NEEDED

2009-03-23T10:55:00.000+02:00

23rd March 2009

Hi everyone,

I have received a few sms messages to ask about Jed's treatment going forward. I have already updated my precious friend Jo Goodman so I'm not sure you may already know this but here is a mail for my family and everyone else.

The doctors have put Jed's chemo on hold. His blood platelets are too low for the treatment to be continued. This is not uncommon I am told. He is doing okay considering, he is very sleepy and has little red/purple spots on his legs (I think he is scratching himself) and he says he is itchy. I see Professor Janet Poole at the JHB Gen on Wednesday for blood tests. Jed has no veins in his hands and arms left (at the moment) that can be used so they will do a finger prick test on Wednesday and if the blood count is up we will immediately continue with the chemo, if not, the transfusion might happen or we will wait a few more days. The radiation continues... It is the chemo making him ill and not the radiation (I'm told!)

Tomorrow we start a booster radiation session for the last 7 sessions. We have the 2 sessions (as normal) and then the booster. The booster is at 104% (of whatever) and it aims at the tumour nods so we need to pray extra hard that the BEN10 lights hit the tumours and kick them right out of his brain. And stick a NO ENTRY SIGN on his cerebellar and entire body!

Considering Jed's current blood results, he did manage to eat half a slice of bread today with marmite, a small jar of baby purity and drink 2 bottles of Pedisure (this is a brilliant eating day!!) and his tummy worked (yes yes yes)! Trust me I love the sight of his pooh lately! His tummy get very bloated and sore if it doesn't work (also the chemo)

I have been contacted about some more treatment methods, Riekie (not sure of the spelling and I've never even heard of it), a special mat (R2800 a month) that relieves pain and repairs cells after chemo (i need to read up on this one but Jordi's mom seems positive about it) and then I have decided to see a homeopath. Jordi's mom has got some nausea medication that is really working for Jordi and it is homeopathic. And yes, I will check it out with the doctors first but at this stage I'm willing to try anything!

Attached is a picture of our precious Jed sleeping in his new car chair (just look at that head support!)

Thank you for your love and support. Today I received some mails that really touched my heart, you all have restored my faith in the human race! I love each and every one of you.

Love from
Bon, Ray and Jed x x x