Dylan was discharged from hospital on Tuesday, surprisingly his counts jumped up to 0.6. His platelets are also building up despite the GCSF injections, which we were able to stop on Thursday. Surgery came in during our admission and after a long period of attempts, was finally able to access his medi-port with a super long adult needle. The surgery team said that it was still swollen from the incident and felt that once it was healed it should be accessible again. Dylan did not attend school for the rest of the week as we wanted his counts above 1 and he also had clinic visits to attend. Today he has clinic again but will resume school tomorrow.
Saturday the RMDH had their first block party and it was fantastic! They closed off 73rd Street and had street stalls, rides, activities, a band and many other fun things going on for the whole day. I was on therapy dog duty, I walked Teigh, Bell, Angel and Lillie for the day and helped out at the therapy dog stall. Cain and Dylan spent most of their time on the rides and watching the band play. It was a very successful event and I assume they will repeat it again next year.
Great news for our friend Jack Brown from the UK, his scans and tests came back clear, he is NED (No evidence of disease). I remember last year, Jack’s family was told his disease was rapidly progressing everywhere and they made the decision to return home, I kissed and hugged Jack thinking it was the last time I would ever see him again, and everyone else was thinking the same thing. But miracles happen, he is well, still here in New York for a work up at MSKCC and cancer free!!! Our other friend Kieran is also continues to be NED, it’s so great to know there IS hope, and it makes us even more determined to continue. Actually Jack has been treated in Vermont recently, the doctor there, Dr Sholler, has promising treatments and 2 other trail being released soon also. This then puts us in a position to research and make very hard decisions on whether this would be good for Dylan. Of course our faith and hearts are with MSKCC, but while we are waiting on trials to be released here, we could do trials in Vermont. But again we must research and converse with the doctor there to look at side effects Vs potential effectiveness on Dylan’s bone metastasis. I have discussed this option with Dr Modak in the past and he is very open to it and would remain Dylan’s primary doctor. The good thing about Vermont is that Dylan would only need to be there for the initial work up and commencement of the study and could do the remainder here in New York on oral medication.
I want to make a point of thanking my wonderful husband for being my rock and taking on so much of Dylan’s care in the past few months. Tim takes Dylan to all his hospital appointments now and organized getting him into school, giving me the opportunity to rest and get stronger emotionally to deal with the everyday challenges of the cancer world.
It’s that time of year again, the boys birthdays are in November (Dylan on the 10th, Cain on the 15th) I normally send out a private email to friends and family with the boys wishlists, but this year for the first time I have decided to post them on the journal. I hate asking for help and hate being so bold, but honestly we are struggling financially even more than in the past and I am very concerned that we cannot fulfill the boys requests, let alone Christmas presents. The wishlists the boys created themselves, I did however condense Dylan’s list a little but it is still very much over the top!!! (LOL). Cain doesn’t want for much, basically he loves AC/DC and Metallica and his music games. I don’t intend for the boys to get everything for their birthdays, this list is also for Christmas and of course Dylan does not need EVERYTHING on his list, but it gives our friends a good lot to choose from. Click HERE for Dylan’s and HERE for Cain’s.
Please visit our good friend Jake who has been bravely fighting Neuroblastoma since 2001 (yes 7 years!) Jake is very good friends with Cain and they hang out together when Jake comes to NYC for check ups and treatment. Well Jake had some bad news on his last visit and is heading back soon for high dose chemo once again, as everyone knows, high dose chemo is scary and unpleasant no matter how many times you have been down that road. Please send Jake your love and support keep him in your prayers, he is an amazing young man and so is his family. Click HERE to visit Jake.