Hi everyone, sorry I haven’t updated for a while, but now that we are a family again for a short time, every moment is precious. Tim and Cain landed in New York at 6:45pm on Sunday 3rd April, we all cried as we hugged each other. Dylan and Cain walked arm in arm all the way through the airport, it was so great to see then together again. We then did a short interview for channel seven and then went back to Ronald McDonald House. We had so much to say to each other that I lost my voice, seriously! I am well, but I can only whisper, it’s very frustrating! Cain broke down Monday night and cried for about 3 hours in my arms until 2am. He was so worried about when he has to leave and how he would cope. I tried to explain about all the reasons why it was not possible for him to stay, but to a ten year old boy, I guess it is not easy to understand. In the end we made a pact not to discuss leaving until the fourth week, so that we could enjoy at least the first three weeks together. To my surprise though, Cain happily comes with us to hospital (MSKCC) everyday, and actually enjoys it. In Australia, Cain totally refused to visit the hospital with Dylan or when Dylan was hospitalized, as it upset him too much. Dylan was so excited to show Cain and daddy how he does his karate lessons at hospital on Mondays, and did a 1 hour lesson before his scheduled chemo. The last few days after chemo, we have been to Time Square, Herald Square and walked down 5th Avenue to Central Park. Tim and Cain saw squirrels for the first time and the famous Plaza Hotel and Donald Trump Towers. Tim is still in disbelief that he is actually in New York City.
Dylan started his 7th round of chemo Monday, Irinotecan – CPT 11 (IV 1 hour) and Temozolomide (oral capsules) which will continue as an out patient for 5 days. So far Dylan has done exceptionally well, I think having Cain and daddy here has been the best medicine for the side effects. The diarrhea is still controlled by Lomotil twice a day and he is tolerating his G-tube feeds again. Tim was extremely impressed when he saw MSKCC for the first time and he met with Dr Kushner, who showed Tim the MIBG scan results. At this point Dylan has Neuroblastoma still evident in his bones and the areas are the spine, skull, left shoulder/upper arm, left pelvis/upper leg and right knee. On a more positive note, since the surgery on February 9th by Dr LaQuaglia, Dylan’s bone marrow is clear, the Neuroblastoma in his ribs has gone and the CT scan shows that there is no Neuroblastoma in his abdomen or chest/lungs. The liver biopsy that was taken during surgery has also come back as clear. At this stage the plan is to clear the bone disease as much as possible in preparation for 3F8 antibodies. After this round of chemo Dylan will have some tests to see if this chemo is working, if it is then he will have more rounds, if not then Dylan will have high dose MIBG treatment, which the Dr has said will have a 40hance of reducing his disease.
Again I must thank Qantas, Australia Post and Operation Oz Kids for making this possible. The Australian Consulate in New York is just incredible, they are doing so much to support us and we are so very grateful. Thank you again to everyone who sends Dylan “Cheer” mail, it really does brighten up our day so much. A big thank you to Orla who drove Tim and Cain safely to the airport and to Michelle for your amazing gifts – It was so nice of you to see Tim and Cain off at the airport in Melbourne in the wee hours of the morning. And of course thank you to Ronald McDonald House and the staff/volunteers for making our stay so comfortable. Without all of these special people in the world, Dylan and our family would not be where we are today, nor would we have the strength to continue out fight for life. Thank you.
