Friday, December 28, 2007

We had a very nice Christmas...

Christmas 2007 turned out to be a very nice, but quiet, holiday. Jenny and Ralph were home for a couple of days. Jenny made our big dinner (which we had on Christmas Eve since Jeff had to work Christmas Day). Everything was delicious. My Dad and Jeff's Mom came for dinner and Jeff's Dad drove through some pretty heavy snow from Rochester to spend the day with us. Brian had to work Christmas Eve but had breakfast with Dad, Jenny, Ralph Michael & I Christmas morning.

Michael had a wonderful Christmas. He just loved opening presents! When asked what his favorite present is, he says "all of them". He got some Lego's that make construction trucks and they seem to be his favorite so far. His Thomas the Train stuff seems to be a close second.

Big brother Brian has finally flown from the nest. Today he moved into a 4 bedroom house with 3 of his friends. He seems really happy and ironically, I think I have talked to him more since he moved out then when he lived at home!!

The question of looking into St. Jude's Hospital for Michael keeps coming up from family and friends so I thought I would comment on it here. I actually did research it right after Michael was diagnosed and he isn't eligible to go there at this time (which is a good thing). In order to be accepted to St. Jude's: 1.) you have to have had already received treatment that didn't work and 2.) they have to be doing a study at the time of the type of tumor that you have. While my research shows that they were doing trials on tumors with Michael's traits, he hasn't had any failed treatment regimens. So, hopefully he will never be eligible to go to St. Jude's!! It is a little comforting to know though that a place like that exists (just in case). They definitely work miracles.

If you had signed up for email updates when we first started this site and have stopped receiving updates, you need to sign up again. Apparently the feed we were using before was bought out by another company and is no longer working. I will post again after we go to Rochester next week. As always, in the meantime, please keep Michael in your thoughts and prayers. JoAnne

Wednesday, December 19, 2007

We've received some bad news....

Michael, Jeff & I went to Rochester on November 28th for Michael's 3 month MRI. We went down the night before and stayed overnight at a hotel. We had a nice dinner in Oswego on the way down and the hotel had an indoor pool. We did our best to make it a mini-vacation and a positive experience for Michael and it apparently it worked. He wants to know when we can go back!

He wasn't apprehensive at all when we went to the hospital for his tests. (Even though he made sure everyone he came in contact with knew he was only there for a couple of hours and he was going home that night.) Dr. Korones came to see us while we were in recovery and was cautiously optimistic that the tumor was unchanged. Unfortunately, he was mistaken.

Dr. Korones called tonight and after conferring with Dr. Pilcher and the radiologist, they have decided that Michael's tumor has in fact grown. Based on that information, they are recommending we start chemotherapy after the holidays. Though we don't have the fine details (I have found there is only so much your mind can process at one time) we do know some things.

Michael will receive treatments once a week on an outpatient basis. Dr. Korones has some colleagues in Syracuse that could administer the chemo for us so we don't have to drive to Rochester every week. We don't know how many weeks of treatment he will need yet. Michael will have to have a semi-permanent port put in his chest to both receive his treatments and for a site to draw blood. This is a surgical procedure done under anesthesia.

We don't know about any side effects or how Michael will feel yet. We also don't know the specific types of drugs they will use. Jeff wasn't home when Dr. Korones called and I thought we should hear those details together (plus as I said, there is only so much you can handle at one time). We will be going to Rochester to see Dr. Korones on January 3rd and will get all the details then.

One thing Dr. Korones is adamant about is that he still believes Michael is curable and treatable. He also still thinks Michael is in the majority of kids that beat these things. He said he has seen and heard of kids with worse prognosises than Michael that are living full, happy lives. He understands that we are having a hard time believing that, but hopes we will be convinced when Michael graduates from high school. I've never wanted anyone to be right about something so much in my entire life.

This whole thing has seems to be more complicated then we originally were told so we have decided to get a second (and possibly third) opinion. I have spoken to Children's Hospital of Boston and they have agreed to do a consult with us. They are going to look over all of Michael's records (MRI's, pathology reports, surgical notes, oncology notes, etc) and then their pediatric brain tumor "team" will give us a call. At that time, they will tell us if we are on the right track in Rochester or whether they would like us to travel to Boston to discuss other treatment options. Children's Hospital of Boston is tied to Harvard Medical School and has one of the best and largest Pediatric Brain Tumor programs on the east coast. We hope to hear back from them in the next week or two.

After Boston is done with Michael's records, we may send them to John Hopkin's University in Baltimore. They have the premier pathologist in the country when it comes diagnosing types of brain tumors in children. I haven't talked to them yet, but it is my understanding they also due initial consults over the phone.

In the meantime Michael is doing very well. Today we had a reminder that even though Michael has healed physically from his surgery, he still remembers what has happened. He had a dentist appointment and although he has never fussed about having his teeth cleaned, today he did. He refused to sit in the chair and told the dental hygienist it was because he doesn't want anybody to hurt him anymore.

He is really warming up to school. (And Dr. Korones said he will be able to stay in school during chemotherapy.) He has even made a couple of new friends. We got his first report card a couple of weeks ago and he did excellent on everything but coloring (he never did like to color). I went over his report card with him and told him what Mrs. Adams had said. He must have really listened because since then he has really tried and his coloring has improved 100%! One thing Michael does LOVE to do is sing. Every night on the bus he serenades the bus driver, Debbie, and the kids all the way home. And I think Jeff & I have Jingle Bells burned into our brain. We started teaching him other songs just to keep our sanity!

For now we are just going to enjoy the holidays with our family. Jenny & Ralph will be home Sunday morning and will leave Christmas afternoon. Jeff's Dad will be coming for a couple of days also. Jeff has to work Christmas Day but has Christmas Eve off, so we are doing our dinner then (Jenny & Ralph are cooking for everybody). Then, Jeff's sister Debbie will be home from Kentucky on the 27th and will be staying through New Year's.

Michael is so excited about Christmas (as I am sure you can imagine). He is still adding to his Christmas list even though I am done with my shopping. But, I'm sure he won't be disappointed on Christmas morning. He has bought presents for everybody and even has them all wrapped. He had his school Christmas party today and was very excited when he got home. This Friday night we plan on going on our annual trip to the Christmas lights display at Upper Canada Village. (The picture to the right is the church in the village lit up for the annual festival.)

Michael has started going to a new babysitter, Robin, one or two mornings a week and she is having a party for the kids tomorrow after school. He is excited because he will get to walk to her house after school with the "big" kids. It was quite an adjustment (and a little rough) for Michael to start at a new daycare but there was just no way we could work him going to a babysitter outside of his school district without me leaving work a couple of times a day to transport him to and from school. The bus picks Michael up at Robins house on the days he goes there and then Jeff & I make sure one of us is home to get him off the bus at 3:45.

He still talks about his old babysitter, Patti, and we hope to make plans so Michael can see her over Christmas vacation. He has a Get Well poster on his bedroom wall that Patti and the kids made for him while he was in the hospital. It has all their names and handprints in paint and pictures of Patti's dog, Jasmine and her 2 cats, Indie and Charlie.

I know this is a long post but it has been a while since I updated. I guess I was waiting for news to post and didn't think it would take this long. As always, I am asking everybody to keep Michael in their prayers and I will keep posting as we get more information. We hope everyone has a Merry Christmas, JoAnne