Tuesday, March 25, 2008

I finally talked to the doctor from Boston...

Shortly after Michael and I got home tonight, the phone rang. It was a doctor from Dana Farber in Boston. Last week, I tried calling the women I had been dealing with and found out that they no longer worked there (I guess that is why they weren't returning my calls). So, I made contact with a new person and decided I was going to make a pest of myself until I finally got some answers and it worked.

Dr. Betsy Harrington called tonight and said that they did review Michael's case when we sent it to them. She stated the team of doctors in Boston concur with the notes from Michael's team in Rochester. She said that their pathologist diagnosed the tumor as a "ganglioglioma with entrapped neurons which makes it an astrocytoma". That is not what I understood the definition of an astrocytoma to be. I thought there was a difference in the cell structure and shapes of both types of tumors. But, the "entrapped neurons" part of the diagnosis is the same terminology used by the pathologist in Rochester. I am going to request a written copy of the pathology report from Boston tomorrow and do a little more research.

Dr. Harrington also said that if we had gone to Boston, they would have recommended the chemotherapy regimen we have chosen to do, Carboplatin and Vincristine. She added that their neurosurgeon thinks that there might be an option of surgery after chemo to attempt to remove the remaining tumor. Michael's neurosurgeon, Dr. Pilcher, had said the same thing after Michael's craniotomy. So all in all, it was reassuring that Boston agrees with the treatment path we have chosen.

Michael is scheduled to have his next MRI April 10th in Rochester. Dr. Harrington offered to have Boston's team review this next MRI if we would like. Jeff and I decided we will send it to them and see what they say.

Michael is still having a terrible week. Yesterday was Jeff's day off and he and Michael spent the day together. Michael was sick most of the day. He was sick again this morning so I continued giving him his Zofran (usually he only needs it all day Saturday but has been taking it since Friday this week). About an hour later he felt well enough to eat some breakfast and then go to daycare so that I could go to work. Today is the first day he has eaten anything and according to our scales this morning, he has lost two and a half pounds. He is still having trouble sleeping, too. I have to say, this has been the worst week Michael has had since starting chemo.

Given how he has felt all week, I gave Michael the choice tonight of going to soccer practice or not and he chose to go. So we went but it wasn't a very good night. Michael had very little energy. He either went up and down the field very slowly or just kind of stood off to the side. After about a half hour (practice is 45 minutes) I asked Michael if he wanted to leave and he said yes, that he didn't feel good. So we left. Hopefully next week will be a better week. I decided tonight that I am not going to sign Michael up for the soccer league I had thought about. There will be other sessions and I don't want Michael to get too run down. Besides, swimming lessons are his favorite and I would like to keep advancing up the levels in those.

An interesting side note about Michael's anti-nausea medicine - a 90 day prescription costs $1,540. If we had to buy that at the local pharmacy, it would cost us 25% or $385. Lucky for us, our medical insurance got a new mail order drug company this year and it will only cost us $35. Before all this, I never appreciated how important good health insurance really is!

I would like to close this post by sharing a picture of Michael giving our bunny, Midnight, a physical. I am happy to report that "Dr. Michael" has declared Midnight fit as a fiddle. Please keep Michael in your thoughts and prayers, JoAnne.

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