Tuesday, July 31, 2007

Where things stand right now...

Michael's symptoms began last spring. He woke up each morning and be sick to his stomach while complaining his nose felt "funny". He went to the doctor and had a bunch of blood tests done and they found nothing. When the symptoms continued, they did an upper GI series and found nothing. They thought he was lactose intolerant, then they thought it might be allergies, by July they were stumped. We began suspect he was having absence seizures during these little "spells" so back to the doctor we went. They decided to do some neurological testing but couldn't schedule him for 2 weeks.

In the meantime, we decided to go on our annual trip to Stowe, Vermont. While there, we noticed that when his nose felt funny, his right eye would twitch and his right hand would shake. The spells were also happening more frequently and for longer amounts of time (they were up to about a minute). On Friday, after a particularly bad episode, we called the pediatricians office from VT. The nurse said she would leave a note for the doctor. We waited a couple of hours to see how Michael was and then headed home.

As we were walking in the house, the phone rang. It was another doctor in Michael's pediatricians office that he hadn't seen, Dr. Swan. She said she read the note the nurse left and was very concerned (it was 4:55 pm on a Friday afternoon). She wanted to see Michael right away if we didn't mind. We were ecstatic!! She admitted Michael to SMC that night. After she witnessed one of his episodes, she diagnosed them as partial seizures and began him on anti-seizure medicine. She tried to get an MRI and EEG done but SMC doesn't have staff to do that on the weekend. After a lot of begging by Dr. Swan, she was able to get an CT-scan. She told us that the scan showed a mass on Michael's brain that they thought was an arachnoid cyst.

On Saturday, despite the medicine, the seizures continued and he actually had 3 in one hour that evening. Dr. Swan made the decision to transfer Michael by ambulance to Strong Memorial Hospital in Rochester. Sunday morning they began a 24 hour EEG. This involved them super gluing 24 wires to Michael's head that attached to a box in a backpack on his back and then plugged into the wall. At first Michael had a hard time sitting still but got used to it after a while (we watched "Flushed Away" over and over and over). On Monday afternoon they finally did the MRI under sedation. Tuesday afternoon they gave us the results. Michael has a ganglioglioma brain tumor.

The doctors were very positive about Michael's long term prognosis. They said the tumor is operable and they think it is benign (but won't know for sure until they biopsy it). If they can get it all, it shouldn't come back. If they can't get it all, he will need chemo or radiation to kill the tumor. Then it should "fall down" into an area they could get to and remove it.

All the edges of the tumor are well-defined, which they say is a good thing. He will have to go back to Rochester for surgery in the next few weeks (the date is tentatively set for Aug. 21). He'll have to stay in the hospital for about a week. He'll also have to stay on the anti-seizure medication for two or three years, since there will be some scarring on his brain. Overall, the doctors sounded very optimistic. The surgery will be preformed by the head of neurosurgery, Dr. Pilcher, who's one of the best surgeons in the hospital.

Everyone there is wonderful, and they all got a kick out of Michael (he was very charming, of course!). The pediatric unit has all sorts of toys and play areas, and they have craft activities every day. They whole pediatric floor is beautiful and interactive, and the staff is amazing (to the kids and the parents).

Right now, Michael's is doing well. He isn't in any pain or anything. He was kinda bored at the hospital, but was in a great mood most of the time. He even said on the way home he wouldn't mind going back to visit the doctors and nurses. He knows he'll be going back, but doesn't really know what for (or seem to care at this point). (This was posted by Jenny and edited by Mom)

Michael's Care Page

I set up this page for Mom and Jeff so we can easily update everyone on Michael's progress. Feel free to share it with anyone who has slipped our minds.
Under his picture on the right, you can sign up to get an email each time we update the blog. I'm still learning how to use this, but let us know in the comments if you run into any problems.
Thank you all for you love and support.

PS-Thank you to Emily, Adam & Bryson for the idea!

Michael and Daddy at Pixley Falls