Friday, October 23, 2009
Drama after drama but all is fine
We are still experiencing internet access issues hence the delay in journal updates. Dylan’s sore foot turned out to be a stress fracture which has completely healed now. The lump on his shoulder was accessed by the surgical team who felt that despite the scan results “unidentifiable soft tissue mass” that it feels like an Osteochadoma and that surgery or biopsy was not advisable. Back to the Neuroblastoma team who decided to rescan the area in 3 months. Between all of this and earlier this week developing a cough, Dylan has missed heaps of school again this year. Dylan had his regular flu shot but cannot have the current H1N1 (swine flu) shot until they release the “killed” version which should hopefully be next month. Last night we had another scare, Dylan had complained that his upper right arm hurt the night before, and last night he noticed it was shaking. After 15 minutes it was still shaking/trembling so I called Urgent Care who wanted him seen ASAP in case he was having some kind of seizure. After approx 50 mins the shaking stopped. A CT scan was done, showing a normal result. The Neuro Oncology team assessed him thoroughly and contemplated admitting him, but later discharged us after midnight. Today we returned to hospital for an MRI which again came back normal. After another consultation and assessment by Neuro Oncology, it was determined that the most likely scenario was the Wii. Yes Dylan has been playing his Nintendo Wii more frequently over the past 2 days and we figured that he must have strained the muscle in his arm causing it to shake, like when people do weights, sometimes your arms feel shaky etc. I am thinking that due to treatments and Dylan’s unwillingness to be physically active, that his muscles and bones are so weak, that even the smallest amount of strain can cause severe issues, like the stress fracture in his foot, that happened after starting school and carrying a book bag up 5 flights of stairs. So we continue on the Perifosine study, last week’s scans showed a stable result apart from a stone in his gall bladder that showed up on the CT scan. Dr Modak said he will discuss with Dr Kushner, the possibility of Dylan being eligible for the new Neuroblastoma Vaccine study that recently opened. Stem Cell harvesting is now also back on the agenda after determining that the lump on Dylan’s shoulder was not disease progression. Dylan had us all in tears of laughter the other night, although those who have never had a CT scan or are not cancer parents won’t get the joke. Dylan was sitting on the toilet and he left the door open. We then hear him say “I am having a CT poop!” We responded with “What do you mean?” Dylan then paused…and we hear…”Breath in…Hold your breath” in that mechanical voice you hear when you have a CT scan…anyway we found it hilarious, maybe you had to be there to get the humor! A few people have asked for Dylan's wishlist as his 11th birthday is on the 10th November...the Amazon Wish List link is to the side of this journal entry. Dylan has updated it again himself, Naruto seems to be the "favorite" again this year.