Saturday, January 19, 2008

One treatment down, way too many to go...

Well, we made it home safely around midnight last night. As predicted, it was a very long day. Michael was incredible though. He is such a wonderful little boy.

We arrived at the hospital at 7:30 am. I think Michael did remember that we went to the same part of the hospital as the day of his surgery. He was a little apprehensive once we stepped off the elevator near the surgical unit but did a great job of staying calm. The nurses did all their pre-op routines and they took Michael into surgery at 8:30 am. The surgeon, Dr. Drugas, came out at 9:40 am to tell us that Michael was out of surgery and on his way to have his MRI while still sedated. He told us everything went well and he was able to implant the port-a-cath successfully. Although, he made no attempt to hide his disapproval for our choice of port. In fact, he was actually very rude.

When I talked to Dr. Korones about it later in the day, he smirked and said that Dr. Drugas had conveyed his displeasure to him the day before. He said Dr. Drugas is a very smart man and an excellent surgeon but is very opinionated and not afraid to express it. He also said Dr. Drugas implants the ports but doesn't work with them day after day so isn't the best person to determine the appropriateness for Michael. He assured us we made the right choice. And we agree.

At 11:30 am they came out to get us to go into recovery room and see Michael. He was a little cranky when he first woke up but a couple of Popsicles and a new pair of Thomas the Train dump trucks changed all that. (We had held back a couple of his small Christmas presents as we knew he may need a little pick me up in the next couple of months. I read on a support site for parents that parents of children in Michael's predicament often want to know if "bribe toys" are deductible as medical expenses and it made me smile.) We stayed in recovery until around 2 pm because they didn't have his room ready.

Michael's room was in the same unit he was in during his last hospital stay. He told the nurses wheeling his bed that he was happy now because he remembered the play rooms. So, he ate a little lunch and watched a movie while he waited for them to remove his IV so he could go play. When the nurse removed his IV, she didn't put enough pressure on the hole in his hand and a few minutes later he started bleeding profusely. There was blood everywhere!! I think this was the most upsetting part of the whole day for Michael. In fact, when I was talking to his Aunt Patti this morning, he wanted to make sure that is the one thing I told her about.

We met with Dr. Korones in the afternoon and signed the consent papers for the chemo and he went over in greater detail what to expect. Michael will have chemo once a week (probably Friday) for 10 weeks and then will have 3 weeks when he doesn't receive a treatment. At that time they will do his next MRI. Then, after that first round, he will do 4 weeks on and 3 weeks off for the rest of a year. The most troublesome of the side effects is an allergic reaction to one of the drugs that happens in about 25% of kids. Dr. Korones said that they have another drug they can try if that happens but let's hope it doesn't come to that.

It wasn't until 6:30 pm that they began Michael's chemo treatment. First, they withdrew blood through his new port and then gave him the first of the 2 drugs with a syringe into his port. Then they administered the second medicine through his port with an IV drip. Next they "flushed" the IV lines with another drip to make sure he had received every drop of the medicine. And finally, they removed the needle from his port and we were done. We had to wait around for another hour while they gave us the necessary paperwork and medicines and were finally able to leave around 9:30 pm. Michael was sound asleep in his seat before we had gone 3 blocks and slept all the way home. We were anxious to get home last night since they are calling for a pretty good storm today.

Michael has 2 small incisions, one by his left collar bone and one slightly above his left nipple. The incisions were a little sore in the recovery room but Tylenol took care of that. He hasn't complained of any discomfort since yesterday but does touch his bandages once in a while and is favoring his left arm a little bit. You can feel the port under the skin and you can see just a small bump. We have some cream that we have to apply above the port and cover with a bandage about a half hour before we arrive at the hospital for his treatments. This will numb the skin so Michael doesn't feel it when they access the site.

Michael had a roommate for his brief stay yesterday. It was a boy that broke his leg while sledding. His extended family came to see him last night for a pizza party. The boy's uncle got talking to Jeff and his Dad and told them that his son went through the same thing when he was 4 (he's now around 8). He had a brain tumor, endured a bunch of surgeries and chemo and is now in perfect health. In fact, he had Dr. Korones also and the family couldn't say enough nice things about him. It is comforting to see a child that was in Michael's situation a few years ago so happy and healthy.

All in all, the day went well and was uneventful. Unfortunately, Michael woke up around 3 am and started vomiting. He was sick for about an hour and then went back to sleep. They have given us some medicine for the nausea. Let's hope it works. So far that beautiful smile we love so much hasn't dimmed a bit. As a matter of fact, he is using it on his father right now, trying to get him to take him outside (and I think it is working!).

We have to go to Rochester next week for Michael's next treatment and then we start in Syracuse the week after that. We are playing phone tag with the doctor from Boston so there is no new news on that front. Hopefully Monday we can touch base with her and will also have the results of yesterday's MRI from Rochester. I will post again when there is anything new. Keep thinking of and praying for Michael, JoAnne

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