Home Fluids

Dylan needed a potassium infusion again today and we were sent home with fluids to run through the night. His Lomotil has been increased to every 2 hours (I have set my phone alarm for each dose) and tomorrow we also have been told to increase his Megace (appetite stimulant) to twice a day. Dylan was weighed and he is now 14.5kg…not good. The diarrhea has continued all evening but his appetite is better. The doctor gave us some good news, that his tumor was tested to see if it was positive for a particular receptor and it came back positive, this is great because that is the receptor that the antibody is particularly directed at. The doctor also warned that if Dylan continues to have diarrhea and loose too much weight, he may be taken off the trial, so we really have to stabilize the current situation. On a good note, his counts are fantastic, hemoglobin 111, Platelets 185, White blood cells 5.1 and Neutrophils 4.1 His blood counts have not been this high for at least 6 months. Tomorrow Dylan will have his electrolytes tested again in the morning. Dylan’s personality is very strange today, maybe it’s the 2 hourly Lomotil. One minute he is happy and talkative, the next he is grumpy, crying and anti social. Radio Disney came to do an interview and he was all excited about it, but when they arrived he wouldn’t speak with her. This evening he wanted to go to karaoke, so we went along with friends from the house and also with Skye, but when he got there he was grumpy, then became happy after 20 minutes, sang a song and then went all grumpy again. I will have to ask the doctor tomorrow if the Lomotil could be causing mood swings. A big thank you to Disney radio and Chastity for the gifts, CD’s, DVD’s, T-Shirts, hat and a portable karaoke machine! We are getting very excited about our special visitor on Saturday. Our dear Australian friend Michelle took a vacation to Disneyland in LA and she will be flying into New York just to visit Dylan for the day! Michelle is amazing, she started following Dylan’s story before we left for Australia and since we have been here we receive daily emails and at least 2 packages and cards from her, she never misses a week to put a smile on Dylan’s face. We have only met Michelle once, when she came to the airport in Australia to see us off to New York, but we have a special friendship that has grown so much while we have been away from home. We are also looking forward to Sunday’s New York Marathon. Dylan was mentioned as a New York Marathon Winner and had his photo in the New York Post newspaper in an article for Team Continuum today, on page 73. Of course the biggest exciting event will happen in 7 days...Dylan's 7th Birthday! Thank you to everyone that has already sent gifts and cards, I will give them all to him on his birthday morning before clinic.