Saturday, April 30, 2005

That sunken feeling

I woke up this morning with a sunken feeling in my stomach. One more night and Tim and Cain leave us to head back to Australia. Knowing that we won't see each other for almost 8 months is freaking me out. I have just gotten used to them being here and now I somehow have to pick myself up and start doing it all on my own again. I look back on the past few months and I just don't know how I managed to keep it all together, particularly during the surgery period. People keep telling me how strong and amazing I am, but I certainly don’t feel like I am. I am concerned how the departure is going to affect Dylan. Tim, Cain and I are not going to be able to control the tears and I know as soon as Dylan sees us all so distressed, he too will fall apart. When Dylan gets upset his eyes get really wide and his bottom lip drops before the tears roll down his face. It’s going to be so hard. Tim and I know that we have to do this, we have to do this for Dylan and I am so thankful everyday that we made it to New York and that Dylan’s surgery was such a success. Tonight we will stay with Greg & Lynn in Long Island and they will drive us all to the airport at 6pm tomorrow night, ready for the 7:30pm flight. Tim and Cain will arrive in Australia on Tuesday at 8:00am. They will be met by the Woller's (Cain's best friend Alex and his father). The Woller's have done so much for our family and for Dylan's campaign, thank you Heather & Geoff.

Dylan competed day 5 chemo yesterday, and then had a blood transfusion. His platelets have dropped to 28, so chances are by Monday he will need a platelet transfusion. Dylan did not eat much at all on Thursday and yesterday he only ate dinner, but then brought it all up after ten minutes. I had to cease the G-tube feeding last Monday as the more liquid that goes in, the worse his diarrhea becomes. Dylan’s seemed o.k yesterday morning but strangely enough after the blood transfusion he has become flat?! I figure it is because he is not eating enough, or maybe he is feeling blue like I am because he knows daddy and Cain are leaving. Dylan’s MIBG scan has been postponed to Wednesday week, as the doctor wants more time for the chemo to kick in. This scan is very important because it will tell us what direction treatment will go in over the next month.

I met a parent of a beautiful girl who had her tumor positioned almost identically as Dylan’s, and all the same bone issues. Her father told me that she had surgery by Dr. LaQuaglia a year ago, and only now is starting to get over the diarrhea issues. This little girl is now 8 years old and all her neuroblastoma is now clear, and she is currently on 3F8 antibodies as her final step in treatment. This was fantastic information because now I know that the diarrhea is most likely still related to the surgery and that it can take a long time for the nerves to repair themselves, and I am sure that all these chemo and radiation treatments slow that process down considerably.