Monday, June 4, 2007

Mostly great news!!!

I know, I know, I have lots to update and have not been online. Ok where to begin. Firstly the big news…we sold our house that went on auction on Saturday, Yay! We got enough to cover all our debts and to pay for Tim and Cain’s airfare and as an extra bonus, the buyers agreed to a 30 day settlement, so once that’s done, Tim and Cain can come and join us here in New York! I have booked the boys in a cancer summer day camp for 2 weeks in August so Dylan is really looking forward to being able to do that with Cain. They will go each day for lots of fun and socialization, and return in the afternoon. Dylan will likely miss a couple of days due to hospital check ups but hopefully will remain well enough to attend most days. I am also preparing school for Cain with the help of the hospital social worker and the Child coordinator here at RMDH. School in America finishes at the end of this month and resumes the school year in September, so Cain will be able to start at the beginning of a school year which will be great! He’s a little nervous, understandably, but he is also excited and looking forward to the experience and most of all being able to be a family again. I know he will settle in well, he is just so mature now and has so much more confidence in himself, he will be the popular kid with the cool accent I am sure! It’s been a long 2 ½ years without his brother and his mother living with him, I just feel so much relief that we can all be together again and that I can be there for Cain as a mum should be. Next news is Cooper, our family dog. Your prayers worked! He was able to go home, the vet said he is not out of the woods though, he will be on cortisone therapy for the next 6 months and there are no guarantees that his condition will not return. He will obviously need regular vet checks and be closely monitored for some time. But for now he is home and happy and Cain is over the moon. Now Mr Dylan! I was hoping to have scan results to share today but they were not back yet. Dylan had an MIBG scan on Saturday, I won’t say anything until I get the official radiologist report, but I feel confident in what I could see during the scan though. The only bad news that I have is Dylan has a HAMA again so he will not start the scheduled 2nd round of 3F8 therapy next week. Dr Modak said we will chat next week on a plan. We can do more rounds of Accutane and wait for the HAMA to go and plan for a stem cell harvest that we both agreed would be a good idea for the future. Hopefully in a few more months his marrow will be at a point where we can harvest more which will allow him to have that back up on hand. Dr Modak also said there is another clinical trail coming down the pipeline, but he did not elaborate too much on that. He said that because Dylan’s disease is stable, he wants to maintain a good quality of life and not disrupt his current enjoyment of life, so he would like to continue with less invasive therapies for right now. Of course I fully agree and just love the fact that MSKCC have that priority when it comes to treating their patients. I guess depending on these scan results, that will have an impact on a decision being made whether we hold off and wait for the HAMA to go or step onto another study. In general Dylan is very well, we returned back to RMDH on Friday and his shingles is completely healed. His blood counts are borderline, his immune system is good but his platelets and red blood cells are low, although not needing transfusions just yet. Dylan is happily getting excited about his father and brother’s arrival and continuing his schooling with his teachers, in-between playing Pokemon cards with his friends at RMDH.