Friday, June 9, 2006

RMDH taking us to Hershey Park

Time with Nana has gone so fast, we are at our last 5 days together. The weather is beautiful today, finally no more rain! Tomorrow will be lots of fun because the Ronald McDonald House is taking the families to Hershey Park! It will be great for Dylan to be able to share that memory with his nana. Dylan had his CT scan done on Tuesday. He was worried about it the night before because he doesn’t like the “hot” feeling that the intravenous contrast gives him. To my surprise though, he woke up happy Tuesday morning and made no concerns about drinking the oral contrast or having the intravenous contrast half way through the scan, in fact he had the whole CT team in fits of laughter with his beaming personality. The scan was over after 20 minutes and it was so wonderful that it was not the awful experience that we anticipated. Today I saw Dr Modak and he told me that the CT scan shows a very small (about 1cm) lymph node in his neck that Dr LaQuaglia was going to evaluate it later today and get back to me as to whether he wants to do surgery to remove it in a few weeks. Dylan will finish the Cetuximab trial on Monday and is scheduled for his MIBG scan on Friday. Doctor Modak said that the next phase of treatment will be to start high dose chemotherapy in preparation for the “hot 3F8” antibodies that will be released soon. I felt a surge of relief to finally hear that the wheels are now in motion and a sense of moving forward has begun. I explained to Dylan that high dose chemo will be scheduled very soon and that he will have his final day on the Cetuximab trial on Monday. Dylan frowned and said “that means no more Ruthy!” Ruthy is his clinical study nurse and he has grown very fond of her. I said to Dylan that I expected him to frown about the chemo, loosing his hair, vomiting, feeling poorly and being admitted in hospital when neutropenia sets in. Dylan replied “I don’t care about all that, I just want Ruthy to access my mediport each time, I don’t want any other nurse to do it!” I will speak to Ruthy Monday to see if there is any possible way for her to fit him into her schedule to access him, I am sure she will feel very flattered that he only wants her. I have a mixture of feelings at the moment, so happy to be taking the next step in treatment and hopefully moving closer to getting rid of this cancer, but anxious about going through high dose chemo once again, seeing Dylan loose all the weight he has gained over the past few months, seeing him feeling miserable and being exposed to infection with no immune system. It’s a necessary evil, but you must fight fire with fire in this case and this will really be the worst part of the whole process, what just have to take each day a it comes and we will get through it. There are many children that I know of waiting for these “hot 3F8” antibodies, some in the same position as Dylan with stable disease, and some with rapid disease progression. Dylan has been very fortunate to be stable for so long and able to be here for this treatment.