Friday, December 14, 2007
Poor Mr Dylan
Well Dylan recovered from the shingles by the weekend and was able to return to RMDH on Monday. Yesterday we went to clinic and he was given the MIBG isotope injection ready for the scan today. He had a full examination and all was well. His platelets had dropped a little and so did his ANC (Neutrophils) but the nurse practioner said it was likely due to the shingles. Dylan’s white blood cells and red blood cells were great. The
result came back and even though it was a lower number it is still a very high positive at 15,000. Dylan needs to be under 1,000 to start 3F8 therapy again. So the plan continues to be the vaccine therapy next month. The HVA and VMA levels remain in the 20’s so not a real change there, which leads me to believe that today’s MIBG scan will be stable, but we will have to wait for the official results next week. This morning Dylan woke at 6am, with a very high temperature, coughing and a semi runny nose. The fever alarmed me so after a dose of Tylenol we headed to the hospital at by which time the Tylenol had started to take effect and the fever was subsiding. The team decided to send him down for his MIBG scan and hope that his coughing would be minimal to allow him to remain still enough. Dylan did amazing, he was so still even when he coughed. The first part of the scan was 19 minutes, then another 27 minutes for the second part, then they moved us to a new machine, which does the MIBG scan as well as a CT scan for another half hour. From what they told me it is not a full CT scan like done with the contrast, but it does give them a better picture of the organs when looking at the MIBG scan. After the scan we headed back up to clinic and put into an isolation room. Once there the nurse accessed Dylan’s medi-port, took some cultures in case of a line infection and also took a nose swab for testing. Dylan was given a long acting I.V antibiotic for an hour also. The fever returned full force, but the nurse told me to take him home and treat it as though he was a regular child with a cold and to give him Tylenol for the fever every 4 hours, returning to Urgent care if he seems worse. So far Dylan is responding to the Tylenol but if I leave it past 4 hours without Tylenol it comes back, so I am setting my alarm for through the night dosing. Dylan got a bit of a smile to his face when his best friend Joseph appeared. Joseph lives in HAMA and is back in NYC for the up coming vaccine therapy also. Joseph peeped around the corner of our room for a quick wave to Dylan from afar so he didn’t risk catching his cold. Dylan was sad that they couldn’t play but at least Joseph will be here for a while and they will get a good chance to play after Dylan’s cold has cleared up. It’s funny how Dylan does so great with cancer treatment, you can throw any treatments and chemotherapy his way and he does great, very bravely and with little tears but when he gets a cold he is so miserable and distressed, he just bursts into tears at any little thing. The weather here is cold. Yesterday started with rain, then hail, then snow, then sleet and then frozen rain by afternoon followed by more rain, it was horrible. When we got home from the hospital we had to shake the ice off our umbrellas! It’s like Dylan has just realized that Christmas is near, he is finally counting down the days and asking me to tell Santa he wants this and did I tell Santa to get that. Cain is doing wonderfully. He said something to me the other day that I thought I would never hear “I can’t wait to go to school tomorrow!” Tears nearly welled up in my eyes, what a relief. Cain has finally broken the social barrier at school, it seems like it just happened overnight! He is going to the movies with groups of friends and he even has his eye on a few girls at school! I am so relieved and happy, finally he is settling in. He now has to concentrate on his confidence academically. He is a smart kid, but the work here is different and the grades here depend a lot on homework which Cain is not use to having so much of. He has mountains compared to the amount of homework he had in Texas , but we will work through it and he is finally starting to get a routine with it.