Tuesday, July 20, 2010

Things are Great - Not much to report

We are doing well. I know it's been a long time between updates, but to be honest, not much is happening. Work, hospital, work, hospital seems to be the main schedules in our lives. Now that we have left the Ronald McDonald House, we do not have many adventures/activities or meet celebrities, life is pretty normal now, and that's just fantastic! Cain and Dylan still participate in the weekly band lessons at the RMDH but that's about it. It's summer vacation so the boys do not have school now until September (which will be the new school year) Dylan is continuing his IMC-A12 clinical trial/study every Thursday with a 1 hour infusion, however we are usually in the hospital 4 or more hours. So far we are about to start cycle 4 and have had almost no side effects! The only side effect we have noticed is a low platelet count and neutrophil count, but not to a point where he needs supportive care such as transfusions or GCSF to boost his counts, so we are very grateful that this seems to be the only side effect. The pain in Dylan's legs has improved, he has Physical and Occupational therapy every Tuesday to help with his walking and he is having ankle braces made, that should assist with training his feet to not turn inwards and alleviate the discomfort he has when he walks. The weather here in New York has been consistently hot for many weeks now, so we head over to the public pool at least twice a week which is also helping Dylan with his leg/muscle pain. What's causing this pain...not sure, but it may be late effects continuing from the Perifosine & Temsirolimus study or because he walks with his ankles turning inward. Cain is off to music summer camp this weekend for 2 weeks, he is so excited to be returning there again this summer. Dylan really wanted to go to summer camp also but unfortunately he is unable to miss his Thursday treatments and he did not want to go to a day camp. On a happy note though, Dylan is over the moon about having the TV and playstation all to himself while Cain is at camp! Our dog Bear is doing great, a few more months and we can have him assessed as a therapy dog and take him to the Ronald McDonald House for the children to enjoy. Tim and I are working and juggling hospital/kid schedules, but we get there in the end and are keeping our heads just above water with the rent and bills. We certainly are much happier having some financial independence, as hard as budgeting is. We feel like we are the closest to a "normal" family as possible right now, and we know just how blessed we are that Dylan remains stable. After a long 5 years at RMDH, living in one room and having to rely on fund raising, we certainly appreciate living the "normal" life again. This week is scan week, so I will post the results next week. So far Dylan's cancer remains in his hips/pelvis/spine/bone marrow and femur but it just sits there, not getting any worse or better. His PET scan does show that this is live disease, so that cloud still sits above us, with the threat of one day progressing. For now we enjoy life, not take things for granted and live in hope of a cure. Oh I almost forgot...Cain cut his long hair! Now I can see his handsome face again...mum is pleased!

I thought I would end this journal entry with this quote I found and really liked...

Be kinder than necessary, because everyone you meet is fighting some kind of battle!