Dylan is really happy and well today. He spent the evening in the hospital playroom with the volunteers playing games. He had a visit from Amy, and she played the game “Sorry” with him. Later an Australian volunteer from Ronald McDonald House came up to the hospital just to see Dylan. She is really lovely and volunteers one day a week at Ronald McDonald House, what a coincidence. The doctors today said we should try Dylan on his feed tonight as the diarrhea seems to be improving and that hopefully we could go home tomorrow. Dylan had 2 doses of Octreotide for the diarrhea again today and again he seemed to have a short and strange reaction to it. After a few minutes of it being put into his leg, he feels weird and has to sit up, and he has a slight feeling of not being able to breathe properly. Then after a few minutes it’s gone. Last night he sacred the nurses with it and they rushed in with the doctor and breathing ventilators etc. The doctor seems to think it affects the vessels in his sinuses and that it should be o.k to continue with. I am o.k with that as it is only for a couple of minutes and I think that Dylan stresses with the sensation and makes it worse than it actually is. We started Dylan’s feed at 8pm, the same one he has tolerated in Australia since August last year and after 4 hours and 200ml of feed going in, he lost it all in very watery diarrhea again, the whole 200ml! Well, there goes the hope of getting out of hospital. If Dylan cannot tolerate his feed then he must remain on TPN (IV feeding). Even though Dylan is eating he still does not consume enough not to have feeding intervention, particularly as his weight is so low. I just don’t understand what’s going on? He is so well, no nausea, no temperature and his appetite is good. All the tests for viral and bacterial are clear, his blood counts are good. The Octreotide and Imodium don’t work---I am unsure what else can be done. This is really bringing me down, I miss home so much and things re not running as smooth as I hoped for. I guess hospital, no matter how great the facility is, just makes you depressed. I shouldn’t complain really, I saw a mother leave today after spending 6 months in isolation with her daughter. But to top off my night there is still no news on Tim’s visa application and I got the run around from customs about the process of sending Dylan’s feed from Australia to America. It was such a complicated email, that I just couldn’t cope with trying to work it out. I just needed to know if we are allowed to send it over and what forms need to be filled out! It’s crazy but the feed is actually made in the USA anyway, but it’s cheaper for me to get it sent from Australia as it is covered under the Medicare system. I am just trying to cut as much corner’s as possible so we don’t run out f money for the treatment. Cain’s teacher told Tim this afternoon, that he is really suffering at school and he won’t speak with Tim or his councilor about anything. He doesn’t want to go to school anymore and he gets in fights everyday, fights that he starts! That is so not my son, he is such a quiet and gentle soul. It feels like this whole cancer thing is destroying both my children. I just wish we could all wake up from this nightmare. I am so worried about Cain, and I can’t be there to help him cope, I just don’t know what to do? It’s really not a good time emotionally to be putting in a journal entry, but this is the awful side to being in this situation, you have good and bad days and sometimes you just fall in a heap. I try and only cry at night when Dylan is asleep because when he sees me cry it really upsets him and it’s not good for his battle to stay strong to beat this monster. Ok enough of that sad emotional stuff, I will snap us all out of it with a funny chat Dylan had with one of the volunteers today…
Dylan was showing the volunteer his karate moves and the volunteer smiled and said “You want see my moves?” And the volunteer proceeded to do some strange exaggerated karate move, noises an all. Dylan replied “Oh yeah, you wait til you see MY dad!” The volunteer asked Dylan what he looked like and asked “Is he this tall?” as he held up his hand. Dylan said “No taller”. Then the volunteer said “So does your dad have good karate moves does he?” and Dylan replied “Nah, he just cooks mainly!”
You see because I was a night shift worker, Tim did all the night cooking during the week, so I guess Dylan pictures his dad making his favorite pasta when he thinks about him. Rather cute eh.
