Friday, July 7, 2006

Back to RMDH

Dylan and I arrived back at the Ronald McDonald House yesterday and greeted with open arms. Our dear friend from Greece, who lives in the room next to ours, organized a wonderful welcome back party for Dylan as well as two other Neuroblastoma boys who had also been isolated due to the chicken pox exposure. They had so much fun, the dining room was filled with laughter and joy. They even ended up with dollops of cake on their faces! Thank you so much to Greg and Lynn in Long Island for taking Dylan and I into their home during our isolation period from the RMDH and hospital, they are true angels in disguise. Today we went to clinic early to meet with Dr La Quaglia who will be doing Dylan’s surgery on Monday. Dylan will have a lymph node removed from his neck on the left side due to it having Neuroblastoma cells. Dylan will also have a bone marrow aspiration while his is under the anesthetic and will likely be admitted for the night. We also saw Dr Modak today who explained a little more of what treatment plan we have ahead. After surgery, Dylan will undergo a series of tests for the rest of the week in preparation for the Phase II MIBG/Arsenic Trioxide protocol. He will have another MIBG scan, CT scan, ECO test, EKG test and a 12 hour urine test. By the following week he will start the oral iodine preparation for 7 days to prepare his thyroid to be protected when he commences the MIBG therapy the week after. He will be admitted for MIBG therapy for a few days, then have 2 weeks of arsenic infusions Monday to Friday. Then the week after that, he will have another MIBG scan to see the result and end the protocol. The MIBG therapy will not make Dylan loose his hair and should have minimal side effects. The arsenic part of the therapy will however drop his potassium and magnesium levels, but we are use to that and he will be supplemented as done in the past. The hopes for the MIBG therapy is to clear as much disease as possible, but it will not be a home run, so after that he will then have a round of high dose chemotherapy followed by a stem cell rescue. The chemotherapy will of course be very unpleasant and will have many side effects including loosing his hair again and becoming neutropenic. The high dose chemo is purely to prepare him for the much awaited “hot 3F8” therapy. It is necessary to knock out the immune system with chemotherapy before starting the “hot 3F8” to prevent his body from reaching HAMA, which basically means his body will reject it. Ideally we want to get 4 rounds of the “hot 3F8” in and not reach HAMA. In a perfect world the “hot 3F8” will clear up any disease that the MIBG therapy failed to destroy, and leave him NED (No evidence of disease). If this happens after completing the “hot 3F8” trial, then Dylan can start the regular (cold) 3F8 treatment to prevent relapse. This therapy will continue until he reaches HAMA, ideally after getting in several rounds at least. That is the big picture plan, we will head into this next phase of treatment holding our breath and crossing our fingers while praying for a miracle. Dylan is incredible, he continues to have no fear and the “let’s go for it” attitude. Ironically he is looking forward to it! I think he feels the same as I do, a little anxious but glad the wheels are moving forward. Even Dr Modak couldn’t help but smile at the thought of finally starting Dylan on MIBG therapy and getting closer to “hot 3F8”. For more information on the MIBG therapy click HERE and for more information on 3F8 monoclonal antibody treatment click HERE Just a reminder to all Australian Dylan supporter’s, to watch channel SEVEN this Sunday 9th July at 8pm for Dylan’s half hour documentary, which also includes Dr Modak speaking about Dylan’s treatments and future. A huge thank you to Phil and Anna for making the whole experience of filming the documentary such a wonderful time and for creating awareness about Dylan’s story and the Neuroblastoma world. Please visit our dear friend Chassity who is a Neuroblastoma teenager and is an inspiration to many of us. She is need of much needed prayers. Also visit fellow Australian Sammy Joe who has reached another hurdle in his very long brave battle and had his treatment schedule delayed. Be sure to visit Dylan's Photo Gallery I have added new artwork to the album that Dylan has done this week.