Positive News

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

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!