Sunday, June 28, 2009

Ben 10 day out

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

Monday, June 22, 2009

Gummy Berry Juice

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

Monday, June 15, 2009

Chemo No 5 - 76 left

15th June 2009


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

Monday, June 8, 2009

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

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"

Wednesday, June 3, 2009

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

2nd May 2009


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