Thursday, April 10, 2008

We're home from Rochester...

We got home about 8:30 this evening from our latest trip to Rochester. It was a very long day but at least we didn't have to drive through snow! We had to be at the hospital at 11:30 am and Michael wasn't allowed to eat anything after midnight last night. He was supposed to be sedated and taken to MRI at 12:30 pm. They didn't come to get him until 20 minutes to 2 pm. Considering Michael hadn't eaten since dinner last night, he was wonderful. He tried to negotiate with us a couple of times about getting something to eat but he never cried or carried on. After awhile, he just laid with his head on my shoulder and waited. He is such a good boy (I know I say that a lot but he never ceases to amaze me).

We found out today that they don't usually do pediatric MRI's on Thursday so Michael was "white sheeted" (or fit in to the schedule). That means that if anything else comes up, the anesthesiologist does that first. We told them this afternoon, to schedule Michael on the regular pediatric MRI days when we go back in July so that he won't have to suffer through hunger waiting for them to get around to him. That means it will be a 2 day trip since Thursday is Dr. Korones's only office visit day.

We had gone to Rochester last night and stayed at the hotel we usually stay at. When I made the reservations, we thought Michael's MRI would be early in the morning but it didn't work out that way. We kept Michael up late last night so he slept in a little this morning. Then we played in the pool to distract him from his hunger until it was time to go to the hospital. That strategy worked out well. He certainly loves to swim.

After Michael's MRI, we saw Dr. Korones and a neurological resident working with him. Dr. Korones said, with the chemo protocol that Michael is receiving, that about 50% of the time the tumor shrinks, about 40% of the time it stays the same size and about 10% of the time it continues to grow. Preliminary results of Michael's MRI show that the tumor has remained stable. We were hoping it would shrink but I guess we can accept that at least it didn't grow. Dr. Korones also said that there is a chance that the tumor could shrink as we continue with the maintenance phase of chemo. One comment he made that made us happy was that, statistically, children whose tumors remain stable fair as well over the long run as children whose tumors shrink. He said that he knows instinctively that seems unlikely but that in fact that is the case. So, we'll continue to take each day one at a time.

I talked to the neurological resident about one of my concerns on the pathology report from Boston. In addition to the tumor diagnosis, there was an additional diagnosis that wasn't in Rochester's report that said "possible neuronal heterotopia in adjacent brain". When I researched this, I found that this was brain cells that didn't form correctly in vitro and it looked like they were a completely different issue from the tumor. It also appears that they can be the focal point of seizures, even in patients that don't have brain tumors. I was correct on both points.

The resident stated that the neuronal heterotopia didn't cause the tumor but that it is possible that this "abnormality" in the brain could be why the tumor settled where it did. But she explained that they are 2 separate issues. She stressed that the pathology reports says that this abnormality is at the cellular level and we may never have known about it if the tumor hadn't reared it's ugly head. In other words - yes, it is "possible" that they exist but that they are not something to be concerned about. The tumor and resulting scar tissue would be much more likely to cause seizures as Michael matures. (And only time will tell if that is the case or not.)

We finally left the hospital around 5:30 pm. Of course that meant we hit Rochester's rush hour traffic perfectly. And to make the trip home even less pleasant, Michael was sick to his stomach before we even made it out of the parking garage and was sick every time he woke up all the way home. He was able to keep down some Rice Krispies and a couple of popsicles after we got home and is now peacefully sleeping.

Dr. Korones said that he should have the "official" MRI results tomorrow and will call with them. I will post again tomorrow night and let you know what he says. I will also update everyone on what Michael has been up to the last couple of weeks (since I have started getting those "you haven't posted in a while" phone calls and emails again - sorry). For now, I am totally wiped out and am going to head to bed. I hope Michael feels well enough to sleep all night. I think we can all use a good nights sleep. Keep Michael in your thoughts and prayers, JoAnne

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