Thursday, March 3, 2005

Getting there

Well Dylan’s White blood cells are 0.1, which means Neutrophils should be here tomorrow. He needs 0.5 neutrophils to be discharged, so hopefully within the next 48 hours he will reach our goal. Dylan woke up not wanting to get out of bed, but I had made my mind up, that today there would be no excuses. I put Dylan in his wheel chair and walked him around the ward for half an hour, then brought him back to a nice freshly made bed. Then after a few hours, the physio girls came in and Dylan protested totally to the idea of walking. I had to be cruel to be kind, and forced him to walk on his frame. Dylan had not walked for 3 days now, and had gotten himself into a depressed state. He grumbled all the way to the playroom, but once we got there, he was a different child. He played “Candy land” with the physio girls and at 3pm Bingo started. After Bongo, he played puzzles with another little girl. So all up Dylan was out of bed for 2 and a half hours! Yes Dylan won bingo again, this time he won a black four wheel drive. It was so cute, he said “I chose this one because it looks like Derek’s car, and I can give it to him” (Tim, please let Derek know) Derek is angel Drake’s daddy. We met Derek through our journey and Dylan had an instant bond with him. Dylan often speaks of Derek now that we are in New York, I think because Derek is American and Dylan recognizes the accent. We have had our favorite nurses on the past 3 days/nights. Nadia looks after us during the day and Aileen looks after at night. They are just the BEST! All the nurses are great here, it’s just that Nadia and Aileen have looked after us the most and we have bonded with them. Dylan is still on 3 antibiotics, GCSF injections and TPN feeds. Each night Dylan starts to feel nauseous and has awful night sweats, I have a feeling it has something to do with the TPN. But the doctors want it to continue until his G-Tube feeding is tolerated at a higher rate. Dylan still has not eaten or drunk anything since the surgery and his feeds are up to 20ml p/h (should be 50ml p/h). If we go any higher he starts to vomit, but this is the common scenario after a round of chemo and neutropenia. A CT scan has been scheduled for Monday 8am, as a routine check after the major surgery. I guess they want to make sure they put all his bits back in the right spot!!!

Caringbridge families are trying to get Oprah’s producers to do a show about childhood cancer. Maybe if we can get more people emailing them, we could get on the Oprah show! It would be great to get more Neuroblastoma awareness. So here’s the email address: