Donna & Rose visit from Australia

Hi everyone, sorry for the delay in updating. Donna and Rose arrived this afternoon, so we are still up very late and we have an early start tomorrow at 7am to go and watch the thanks giving parade, so I will have to keep this short, well I will try to anyway! We spent all day in clinic on Monday, Dylan needed a blood transfusion and the antibody treatment plus we had to wait for home fluids. We got back to the Ronald at about 4:30pm and at about 6pm Dylan started t behave rather strange. He couldn’t get comfortable and kept moving from the bed to the chair in-between bathroom visits. The diarrhea seemed to have increased and Dylan had no appetite. By 7:30pm Dylan had drunk 4 cans of soda which was very odd for him, as being on IV fluids he only usually drinks about half a can. I don’t like him drinking soda but considering he only usually drinks half a can a day, I let him get away with it. By 8pm he complained of a severe headache and I was very worried as Dylan never gets headaches. After giving him some Codine, I rang the doctor and she advised I get him to urgent care. It was pouring with rain and luckily the Ronald McDonald House van offered to drive us in. Dylan started to cry out in pain with the headache once we arrived at the hospital, so I ran through the corridors to urgent care. By 9pm the pain subsided and Dylan started to drink like a fish again! I refused to allow him soda, so I gave him water and alternated the bottles with apple juice. I knew that there was something wrong with him because Dylan never drinks water, he hates it. I added up 5 bottles over 5 hours in urgent care in total and the bottles were 600ml size each! We also noticed he was not urinating. His electrolytes came back with low sodium but that was it, the rest looked fine. Dylan’s fingernails looked purple and after drinking so much he vomited everywhere. At 2:30am they took him for a CT scan on his head, which came back fine. It was puzzling because he seemed very dehydrated yet he was on fluids already. They gave him a bolus of fluids and by 3am he was much better. We finally left urgent care at 4am, and walked back in the rain, although I was relived not to have been admitted. On Tuesday, Dylan woke up fine, and we went to clinic early for another electrolyte check before his MIBG injection. We ended up in clinic most of the day again, waiting for home fluids. Dylan has developed a little split down the side of his fingernail and on one of his toe nails, which was one of the anticipated side effects of the trial he is on. This morning we went into clinic at 7:30am for a finger stick before the 8am MIBG scan. The scan went well, Dylan slept through most of it. As it was being done, I looked at the images as I always do. From what I could tell, it looked unchanged from the last scan. I am still pleased though because the last scan showed improvement and at least we are still in that direction. The final and official report we should get back by Friday. The clinical nurse told me to not be disappointed because a lot of the adult patients on this study did not get a response straight away and that there is still a good chance it will do something, but it may take a little time and it’s worth continuing for longer, at least until the hot 3F8 antibodies (radioactive tagged) become available. After the scan Dylan went up to the day clinic for a platelet transfusion and home fluids. The diarrhea seems a little better and his appetite has picked up again. At 5pm Donna and Rose arrived in New York, very excited. Dylan was thrilled to see Donna again, but I think he was shocked to see her with hair! Donna looks great, but still has her arm in a sling, suffering from a lot of pain and is mainly in her wheelchair. A huge thank you to Jim at Qantas for all his help and of course to Paul at Team Continuum for getting Donna here. Paul has arranged for a couple of doctors to consult with Donna at some stage during her stay. Anyway, must go and get some sleep. Tomorrow should be great with watching the parade and then having thanks giving lunch with Chris and Justine (our Aussie mates). Friday is clinic again, hopefully we can get out by early afternoon so we can show Donna and Rose around New York, I think we will leave them to recover from jet lag while we go to clinic.