Tuesday, July 5, 2005

Only just made it

We only just made it to the fire works last night for 4th July. Dylan woke up feeling sick again and in between vomiting, he had blood noses. After the 4th blood nose, it didn’t stop bleeding and because the blood was running down the back of his throat, he started vomiting up large amounts of blood. So at 4pm we headed to the Urgent Care Centre at MSKCC and had a platelet transfusion. I also found out that his ANC (neutrophils) were down to 0.3, meaning he was neutropenic. I begged the nurses to get us out by 6pm and thankfully we arrived back at the Ronald McDonald House by 6:10pm, ready to get on the NYPD bus at 6:30pm to take us a few blocks to the East river to the fireworks for 4th July that started at 9:20pm. Skye joined us and the NYPD officers cooked us all a BBQ and we had a whole secluded area for the RMDH and the NYPD families just next to the 59th bridge on the East river. We had a great view of the fireworks. It was really pretty before they begun because the view of the city all lit up was excellent and then there were heaps of lit up boats on the river waiting for the display. The fireworks were not any different to the ones in Australia but they did have some great shapes, like blue stars, smiley faces, boxes and circles. Of course the main theme color was red, white and blue but they also had pink, green and yellow ones. The fireworks went for a whole half an hour which was good and well worth the wait. Dylan loved it and he also enjoyed the interaction with the other kids playing ball as we waited for the show to begin. He felt a lot better after the transfusion and was not sick at all. This morning he seemed fine and we went to clinic at 9am for a check up and blood tests. By 10:30am we were leaving the clinic and his nose started bleeding again, but his platelets were 57 and a transfusion was not necessary. Once back at the house, his nose bleed again and he vomited a few times, but by 4pm, he was fine and fell asleep by 7pm. We have tomorrow off and will return to clinic on Thursday. Dr Kushner said he will schedule an MIBG scan, CT scan and bone marrow biopsies for next week to see where we are at.