Thursday, March 20, 2008

I can't sleep, so here I am...

Sleep is eluding me worse tonight than most nights so I thought I would use this time to update you on how Michael's week has been going. Chance (pictured left in a photo taken by Michael) couldn't sleep either so I think she is glad for the company. She is now laying very contently on my feet.

It's funny- this blog started as an efficient means to keep distant family and friends updated on Michael's progress. Then, when we found out Michael had to start chemo, I decided to continue it as it could serve as a sort of diary for Michael when he is grown and this ordeal is long behind us. But, now it has evolved into a therapeutic outlet for me. I have found that I look forward to writing about the little boy that is so special to me and I hope there are at least a couple of people that enjoy reading about him.

Michael's week, so far, has been a little different. For the first few days, he had a terrible time sleeping. Usually, he falls asleep during chemo, sleeps all the way home, has a lite dinner and then is out until the next morning. Not this week. Last Friday, he only slept for the last half hour or so of chemo, was awake the whole ride home and couldn't fall asleep until almost 11 pm. I don't think Michael has ever been awake later than 9 pm his entire life - and even that is rare. He just couldn't fall asleep and kept wandering out of his room. He wanted to sleep but just couldn't. He finally took a pillow and a blanket and laid on the living room floor around 10:30 pm and drifted off to sleep. Then Jeff carried him into bed - where he didn't stay very long.

Around midnight, he came into our room and climbed into bed. There, he tossed and turned, cried and complained all night long. Jeff finally went out and laid on the couch to see if giving him more room would help. It didn't. I thought for sure Michael would be exhausted and would take a long nap Saturday but no such luck. And, the next four days and nights were basically the same routine. Last night he actually fell asleep early while I was reading him his bedtime story. The good news is he has had absolutely no nausea this week. Jeff and I were discussing why there was such a difference this week. There were two things that we came up with that were different about chemo last Friday and we don't know if they could be the reasons.

First, they gave Michael the new maintenance antibiotic in his IV. The whole time he was getting this new drug, they were taking his blood pressure and pulse (which they don't usually do). It didn't occur to us to ask why they had to do that or if there were any side effects until after we were home. The good news is that there is always another Friday right around the corner where we can ask the questions we think of after we leave the hospital. We wonder if maybe the drug has hyped him up somehow. That could also help explain the combative behavior that was so out of character at chemo last week.

The other thing that was different was that they "pushed" one of the anti-nausea drugs that they usually "drip". I am not sure why they did that other than I think each nurse may have a little different routine and Michael had a new nurse last week. We were wondering if since the "bad" drugs are harder on the body when they are given quickly, if maybe the "good" drugs are "stronger" when given quickly also. (Disclaimer-keep in mind that these are the thoughts of 2 overwhelmed, laymen parents trying to make sense of something that doesn't make sense to us.) Oh well - I will ask this week.

Other than what I stated above, it has been a pretty good week. We went to soccer Tuesday night and Michael did great. He and the little girl from his class, Charlize, have become buddies. The kids are learning to control the ball a little more and to follow the commands of the coaches. Michael has done well with both skills. He really enjoys soccer and there is a "league" that starts up after these classes are done. I am debating whether to let him play or not. The class he is in now is just drills. They don't actually play a game. If he played in the league, they actually play soccer and there would be a lot more chances of colliding with another player and I worry that he could damage his port. Dr. Korones said there were no restrictions on Michael and in fact, one of his patients plays hockey. I have been trying real hard not to let this disease rob Michael of a normal childhood so this is a real dilemma for me.

Then last night was swimming lessons. Michael really has taken to the water and is doing well. Brian joined us but I am not sure if it was to watch Michael or to see Michael's teacher. When I first met Michael's swim instructor, I thought of Brian immediately. So the next time I talked to him, I jokingly told him he should come to swimming lessons with us and meet her. I thought he might like her. Turns out he already knew her and I was right about her being his type (a mother is always right). Whatever his reason for coming, we enjoyed his company. Brian turned 23 Tuesday night. So, we had dinner after swimming lessons and then I gave him some "home cooked" leftovers that were in the fridge and his gift. He played with Michael for a while and went back to his place. The picture to the right is Brian and Michael playing a memory game on the Thomas the Train website last week. Both Brian and Michael have gotten haircuts since that picture. Brian was trying to grow his hair long but changed his mind. I told him that was a good thing since his sister would have made him get it cut for the wedding anyway.

One good thing about soccer and swimming lessons is that Michael always seems to eat better after we get home. I don't know if it is because of the increased activity or if he just feels better by Tuesday night. Either way, it is a comfort to see him eat at least one good meal after a few days of eating almost nothing.

Tammy and Cheryl from Make-A-Wish are coming back to the house tonight to talk to Michael some more about his wish. He has been telling everyone that will listen for the last week that he is going to Disney World to meet Darby so I think that is what we will be doing. In fact, last night he asked me if he had to go to school and if I had to go to work the day after tomorrow (Friday). I told him "no", that we could spend the day together. Then he asked if we could go to Disney World that day! I tried to explain to him that this is a big trip and will take a lot of planning. He tried to explain to me (very patiently, I might add) that he was ready to go and we didn't need to do any planning. He doesn't understand why we can't just get on the plane and go. Oh boy - it's going to be a long wait.

Well, it is almost time to get ready for work. I think it is going to be a long day that is going to involve lots of caffeine. I will post again Friday night. Please keep Michael in your thoughts and prayers, JoAnne

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