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!