Monday, September 21, 2009

2 new issues

We have had very limited internet access for a long period now, but hopefully this will be resolved soon now that a new system seems to be in place at the RMDH. I apologize for the lack of updates and edits to Dylan’s web pages including the house heroes’ page.

Dylan started school but only made the first 3 ½ days. This is very frustrating and disappointing to say the least, we were hoping that he would be in school steadily for a while to establish friends so that he liked the whole school thing better as last year he was lucky if he made it once a week and with such poor attendance the other children were not very receptive to him. Dylan has been off school for a week now because he has a mysterious pain on the ball of his right foot, that shoots up his leg. It is a fairly constant pain, he cannot put pressure on it, so to walk he has to turn his foot to the side, and even with no pressure the pain comes and goes at least every half hour. With many flights of stairs to get to his classroom, school is out of the question. So far we have had 2 exams, an x-ray and an MRI of the foot with no diagnosis. Tuesday he is scheduled for a bone scan. Dylan also developed about 3 weeks ago, a hard bone like growth (size of a small peanut) on his left scapula (shoulder blade). It feels hard like bone to the touch, and Dylan feels nothing when it is touched. The first theory was that it is likely an Osteochadoma, a benign bone tumor that is fairly common and only 1% turn cancerous. Most can be left alone unless they cause issues. We had an MRI done but the diagnosis came back as an “unidentifiable soft tissue mass” the team have decided that if they don’t know what it is, it should be removed surgically. We are now waiting for a surgery date from the surgical team. Just yesterday Dylan says the growth on his back now hurts intermittently. There is a lot going through our minds, are these 2 issues related? Is it Neuroblastoma progression? Is it nerve damage? Is it from the clinical trial drug? Is it late effects of previous treatments? Is it non cancer related? Who knows, and until we know exactly what these 2 issues are, a reason will be hard to pin point. This is very scary, we have been, for the most part, on cruise control, no big issues and very blessed that Dylan has remained stable for so many years. His last scans came back stable, with no new disease or problems, and they were done 1 week before we noticed this growth on his back. The inflamed colon issue seems ok, but the diarrhea is still insane, however it has been going on for so many years now that it has become the “norm”.

Cain started his first year as a freshman at high school, so far he says it’s ok, he seems to have made friends quickly, his only complaint is the travel time/distance. He continues playing his bass guitar and their next “gig” will be at the RMDH block party on October 3rd.