Saturday, September 3, 2005
Dylan is up and down, one minute he is miserable and the next he is happily playing on the computer. This morning we had a visit from our friends Chris and Justine, and Dylan was not very talkative, but by the evening our friend Joel came to see us and Dylan was much more sociable. All day his temperature has fluctuated and he has had to take Tylenol for the fever. Dylan had nausea when his fever went up and started vomiting. He has also developed a very itchy rash which we think is from the ciprofloxacin, so that antibiotic has been stopped. Unfortunately Dylan has not eaten at all today but his weight has remained as it was last week at 16.4kg. The doctor told me today that his blood cultures are again positive and that it is showing in both his lines. He explained that Dylan will need to remain hospitalized until he has no fever for at least 24 hours and once his cultures come back clear. After the cultures come back clear he will need to remain on intravenous antibiotics for 10 days. Luckily the bug that has grown in his lines is not one that requires the line to be pulled out. We may be allowed to have the antibiotics at the Ronald McDonald House but it will depend on Dylan’s blood counts by Tuesday ie: neutropenia. I have to say a huge Happy Father’s day to poor Tim. In New York Father’s day is in March (I think) and I totally forgot that today in Australia is Father’s day, so poor Tim didn’t get a card (but it is in the mail!). Dylan had a good chat with him on the phone though, so at least he got to speak with his daddy on Father’s day. Tim and Cain are very jet lagged and are trying to adjust before they return to work and school tomorrow. I am doing o.k, there are a few parents in the hospital at the moment from the Ronald McDonald House, so we get chatting. The little boy Kevin from Hong Kong needs your prayers again. He was the little boy I wrote about in my past journals who also has Neuroblastoma. Well, he recovered from his problems but because he has been unable to have treatment for the past 8-10 weeks while recovering, the Neuroblastoma has now returned to his marrow and to top it off, the infection in his intestines has also returned. He is too sick to continue any treatments at this stage, so in the mean time the Neuroblastoma is spreading. I have to hold back the tears when I see his family. Your prayers worked in the past for Kevin, please add him to your prayers once again. All the sadness of watching not only my own son go through this, but all the other children here, has in a strange way stopped me from feeling sorry for myself because Tim and Cain have gone home. I have seen so much over the past 13 months, but I never get used too it. I watched as a young teenage girl had her chemo today, preparing for a bone marrow transplant, and seeing her so sick...lets just say I had to leave the room before I burst into tears.