Accidentally posted on the goat board first.
For those new to the board, Cole is my grandson, now six years old, diagnosed with cancer when he was 2 1/2 years old. He was successfully treated for Stage IV Neuroblastoma at St. Jude Childrens Research Hospital over the past few years.
Here's my son's update:
Cole had his latest round of off-therapy scans this week. The schedule was a little different, with just his bone marrow biopsy on Tuesday and then "the tunnel" on Wednesday. These scans have become so routine for Cole, that he knows the procedures better than I do (but he still does not like some of them). It's funny how when you do something as often as these scans, the things that stick out in your mind each time.
Before Cole's bone marrow biopsy (where they stick a giant needle into his back and extract 4 inches of marrow from his femur) , they "mark the spot" with a sharpie. The Nurse Practitioner who does this is named Sandy Kovach, and she has been Cole's NP since we got here. Cole was sitting in my lap when she lifted his shirt to "mark the spot", and the part of his back where they do the biopsy looks like a smallpox vaccination. Cole was a champ though, and the next day just said that his back was "just a little sore", but he never slowed down.
Cole's super #1 favorite movie right now is Avatar. Since he had his port accessed, he could not play outside on Tuesday afternoon so we watched Avatar instead. If you have seen the movie, the "link" machines that the "Avatar Drivers" use to hook up with their remote bodies look A LOT like MRI/CT machines. When we went in on Wednesday, Cole was super excited to go to the tunnel, because he was going to "link with his blue body" and "fly a dragon on Pandora". There were times where getting him into the scan room was like fighting a badger, now he can't wait to go in there.
Cole's sleep sleep cycle was all screwed up by Wednesday afternoon. Between regular sleep, early wake ups to drink contrast, naps, sedation, and the narcotics that they give him so he doesn't wake up grumpy, things were pretty messed up by the Wednesday night. Cole's last dose of Versed (the narcotic) seemed to last forever, and Cole had a SERIOUS case of goofy butt Wednesday night.
Thursday was back to the normal summer schedule. He came to work with me and I dropped him of at Summer Camp on base. Waiting on results for scans has always been a nervous time, and this was no different except for the fact that our appointment for results was not until next Monday. The doctors at St. Jude came through yesterday afternoon though. They don't send results out by e-mail, but they did send me Cole's schedule for his next appointment....January 20th, 2011.
We have cleared:
Diagnosis
Initial Biopsy
Transfer to St. Jude
2 rounds of experimental chemo
9 rounds of high dose induction chemo
1 major staph infection
1 major surgery for tumor removal
1 bone marrow transplant
23 days of radiation
16 rounds of maintenance chemo
now 16 months off therapy...
now 30 months into remission...
now 36 months with no evidence of disease.....
We have gone from having scans every 4 months, to every 6 months. I am sure that our doctor will tell us once again "we are not out of the woods yet", but I think that I can start to make out the tree line.
As always, we appreciate the continued prayers of all of you who pray...and the thoughts and well wishes of those that don't.
I hope that in the next few months and years that many of you will be able to meet Cole at a game or some other function. He is a GREAT kid, and a joy to be around. With what we were facing 3 1/2 years ago, there was a slim chance that we would be where we are today, and I know that our prayers were heard and Cole's health is a testament to God's healing power. Cole is our little miracle.
Nathan
