Michael's oncologist, Dr. Korones, called earlier this evening. There had been some miscommunication between him and Dr. Pilcher's office. Dr. Korones had been told that they were able to remove all of Michael's tumor during the surgery and based on that information, he had decided to hold off on chemo and radiation. Based on a conversation he and I had several weeks ago (during which I told him that was a contradiction to what we were told by Dr. Pilcher), he spoke again with Dr. Pilcher and Dr. Pilcher verified that he was unable to get all of Michael's tumor. (BTW - this is now one of those "panic days" I spoke about earlier this week.)
Dr. Korones is now waiting for Dr. Pilcher to review Michael's records to let him know if Michael is in any danger if the tumor starts growing again. If there is any chance of danger, they will start more aggressive treatments now (probably chemo since radiation can devastate a 4 year old's brain). If not, he is comfortable waiting until December to see what the remaining tumor actually does. (Michael's next MRI is tentatively scheduled for December 20th.) He said this evening that sometimes this type of tumor not only stops growing but actually shrinks. (Let's hope that is the case with Michael.) He reiterated that he still believes that Michael has an excellent chance of surviving this ordeal.
Dr. Korones & I agreed that it might be worth a trip to Rochester before December to talk face to face and to go over Michael's MRI's and pathology reports in person. Someone from his office will call next week with an appointment for the following week.
Also, the other day I signed up to participate in a program called CompassionNet. It is somehow associated with our health insurance but isn't really a part of our insurance. Our case manager, Laurie, came to the house the other day and we talked for quite a while. They provide emotional support, financial assistance with travel expenses, education and can act as liaisons on our behalf. Basically, they will help with ANYTHING we need. When she left, she spoke to a nurse practitioner in her office named Susan. It was Susan that actually called Dr. Korones to remind him we were waiting for some answers which is why he called tonight.
Laurie & I also discussed our option of getting a second opinion. If Jeff & I decide to go that route, CompassionNet will help us set it up and help cover the costs of traveling. She & I discussed the best choices in Michael's case and agree that Boston General would be an excellent choice. Jeff & I just have to make a decision.
For those that don't live close by, the tank top Michael had on earlier this week has given way to long sleeves and jackets. When Michael got off the bus this afternoon, he complained that the cold wind was hurting his head. It looks like his incision is going to be very sensitive to the cold (at least for a while). As much as Michael hates hats, I think he is going to have to get used to wearing one. We will keep everybody posted on any new developments. In the meantime, keep Michael in your thoughts and prayers. JoAnne
Monday, October 8, 2007
We just got back from picking up Michael's new glasses and he wanted to share them with everyone. Dosen't he look handsome (and grown-up)? Michael is very suprised at how much different everything looks and Mom is very surprised at how strong his glasses actually are.
School is going well. He has today off for Columbus Day and tommorrow off for superintendent's day but is looking forward to going back. Wednesday they are having a disaster drill and have to walk to the firehall. Michael should enjoy that. By the way, did everybody notice that it is the middle of October here in the north country and Michael is wearing a tank top? Amazing! Keep Michael in your thoughts and prayers, JoAnne
at 7:52 PM
Wednesday, October 3, 2007
Well it has been 6 weeks since Michael's surgery and he is doing very well. He was released by his surgeon to start Pre-K on Monday. He is going right to our local elementary school. The bus comes to the house at 12:20 pm and brings him back home around 3:55 pm.
According to Michael they learn "lots of things at school because that is what you do at school." They learned their numbers yesterday. When I pointed out that he already knew his numbers, he said he knew that but he had never learned them at school before. They also go outside for a while each day and they have snack. He's not allowed to play on the playground equipment but so far he doesn't seem to mind. He wasn't too sure about school at first but seems to be settling in. He has a new friend named Jessica, she is in his class and rides the bus with him. Today he gave her a hug before he got off the bus.
We have been working with Michael everyday in some pre-school and kindergarten workbooks that he received as gifts after his surgery. We haven't seen any memory deficits or learning disabilities (thank God). He did have to have a school physical a couple of weeks ago and did very poorly on his eye exam. We took him to an opthomologist last week and he has to have glasses. He was VERY upset at first but when we went tonight to order them, he was pretty cooperative. He even asked when we could go back and get them. (Okay - I'll confess. He still wasn't happy about wearing glasses so I bribed him with a tractor. Hey whatever works. He's had to endure so many changes the last couple of months, I hate to see him upset.)
His hair is growing back nicely. There are just a couple of spots along the incision that are still bald but they get smaller every day. Michael is not self conscious at all when people ask him about his head (surprisingly it's usually adults and not children). He tells them his nose felt funny, he went to the hospital and he had an operation. The doctors removed the bad thing from from his head and now he feels better. Thankfully, he is still seizure free.
Since he stopped the steroids and the swelling in his head went down, his appetite is back to normal. He has gained 9 pounds since his surgery. I didn't realize how thin he got over the summer. He is a SOLID little boy now. If you didn't see the scar on his head, it would be easy to convince yourself that is was all a bad dream.
But, unfortunately it is not. A mother in a support group I belong to said something that summed up life for us these days. She said some days she wakes up feeling normal and knowing with certainty that her son is going to be just fine. And then other days she wakes up in a state of sheer panic, worrying that she isn't doing enough or she will miss something or make the wrong decision. (Fortunately, so far Jeff & I don't have those kind of days at the same time.)
We are just waiting for December to have the next MRI and to see the specialists again. Until then we are still trying to learn all we can about Michael's tumor and the best possible treatments. We will keep everybody up to date of any changes. In the meantime, remember to keep Michael in your thoughts and prayers. JoAnne
at 7:01 PM