Friday, May 5, 2006

Consulation with Dr Modak

I have been a bit strung out since Dylan’s scan on Wednesday because I saw a new spot on his left arm as the scan was being done. I nervously met with Dr Modak at 10am this morning. When I walked into the consultation room, Dylan was still asleep in his stroller, so I said to Dr Modak, I saw a spot on his left arm, that’s bad isn’t it? Dr Modak said he saw he thought he saw a spot there too, when he looked at the scans but the preliminary scan results are saying that Dylan’s disease is still stable and that there are no new lesions. Phew, I can breathe again! His urine markers (VMA and HVA) are also stable, with a slight decrease which is good. Dr Modak did say that the lit up area at the top of his chest/neck area may be a lymph node that is carrying Neuroblastoma cells and if that is the case, then he should have surgery to removed it. He has ordered a CT scan for 6th June to confirm his suspicions of it being a lymph node. The other possibility is that it may be a boney lesion or even a nerve, in which case surgery will not be necessary. Regardless it has been there for over 10 months and is neither an urgent procedure nor a sign of disease progression. If the CT scan does show that surgery is required, Dylan will be scheduled for surgery in 6 weeks time, after he completes this final round of Cetuximab. The surgery will be fairly simple and may even be just a day procedure, or at worse he may have to stay in hospital for over night. I spoke with Dr Modak about preparation chemo Vs continuing the Cetuximab trial. He told me that even though the “hot 3F8” is still on schedule for June, he would like to wait until he actually has a release date confirmed before commencing chemo. So the plan is another 6 weeks of Cetuximab, CT scan during the 4th week to check if surgery is required. If surgery is required, he will have that done in the 6th week, along with another MIBG scan and more urine markers. Then he will start high dose chemo in the 7th week, preparing him for the “hot 3F8”. Dylan is feeling great and doing just fine. His teacher returned this week, so at the moment he is enjoying a lesson with her and preparing for his poetry reading he will be doing tomorrow for the Starworks Foundation and then again at the RMDH annual Gala held at the Waldorf Astoria Grand ballroom. There will be over 1000 attending the RMDH Gala and Dylan is bravely going to stand up on stage with the house president and read his poem to all the guests. He will also present one of his art pictures to Katie Couric from NBC as a thank you from all at the RMDH. Children from the RMDH have been writing poetry for a fund raising book that will raise money for RMDH. Dylan has 2 poems that will be published and after the launch I will post them here on the site for all the read. We are also getting prepared to move rooms this weekend. The RMDH has been renovating since January and our time has come to move to a renovated room. There is also a very special surprise happening at the end of next week, but I will save that news until then, but I am bursting at the seams to tell you. Great news for our friend Nick who has been officially classed as NED, although he reached a HAMA after only one round of cold 3F8, it is wonderful news considering the statistics for teenagers diagnosed with Neuroblastoma. We are so happy for them. More good news, Connor Gerber from South Africa and his family will be arriving in New York to commence surgery and his treatment at MSKCC by the end of the month. We are really looking forward to meeting them in person and helping them to settle into life at RMDH. We are so thrilled that they have raised the funds for treatment and that now Connor has a chance at beating this along side many others here. New York Star watch alert…We saw Sarah Jessica Parker from the show “Sex and the city” today walking out of Payless Shoes on 3rd Avenue this afternoon. I also forgot to mention that Phil Collins was in the audience at the Tarzan performance we saw last week, although I didn’t spot him, others from the house did.