Well, we were finally able to schedule an appointment and see Dr. Korones (Michael's oncologist) in person. We made the trek to Rochester on November 1st. Michael was excellent on the way down but we hadn't told him he was going with us to see Dr. Korones until we got to the hospital (he thought he was going to stay with Grandpa). He got very upset when he saw the hospital and begged us not to take him in there. But, by the time we found a spot in the parking garage, we had him laughing through his tears. We were actually early, so we went to the cafeteria to grab a snack and relax before making our way to the Pediatric Oncology Unit.
Our meeting with Dr. Korones was a bag of mixed emotions. He immediately noticed Michael's new glasses and asked us about the eye exam we had done. We explained to him that the opthomologist had stated that she didn't beleive Michael's vision problems were related to the tumor. We told him that we found that hard to beleive and asked him what he thought. He did some simple tests on Michael to check his peripheral vision. Afterwards, he said that he agreed with that assessment since there would have been deficits in Michael's peripheral vision if there was damage to the optic nerve from the tumor.
We then talked to Dr. Korones about some concerns we had like tremors Michael was experiencing in his sleep and the large amount of hair growing on Michael's legs. He thought the tremors could be because Michael's Tegretol (anti-seizure medicine) levels weren't where they were suppposed to be. He also told us because of the location of Michael's tumor (near the pituitary gland which controls hormones) it was possible that he was experiencing precoscious puberty (or the early onset of puberty) which would cause him to become hairy. Both of those conditions could be checked with simple blood tests which we had done before we left the hospital. We are happy to say, we spoke to Dr. Korones today and all of Michael's blood tests came back within normal ranges. Yeah!!
Now for the disconcerting part of the visit. Dr. Korones showed us the MRI done the day after Michael's surgery side by side with the original MRI. There is a lot more tumor left then we were originally led to beleive. (In fact the original tumor is much larger than we originally thought.) The portion remaining is about the size of a quarter. Dr. Korones then told us we had 2 options:
Option 1.) We could start chemotherapy now. He stated he has collegues in Syracuse (much closer to home) that he would be comfortable with administering the treatments. That would involve going to the hospital once a week to receive the treatments. The doctors would put in a "permanent" port under Michael's skin to give him the medications and draw blood to test.
Option 2.) We could watch the tumor to see what it does. He stated that the majority of these tumors never grow and no further treatment may be necessary. His only concern is that if it does start to grow, Michael's optic nerve is in danger of being damaged. But based on the pathology report, it should grow slow enough that they could treat it before it causes damage.
Jeff & I chose Option 2 - Watch and wait (as nervewracking as that is). Dr. Pilcher had said that he didn't need to see Michael until the end of December (4 months after surgery) but Dr. Korones said that Michael should have his next MRI 3 months after surgery or the end of November. They are trying to schedule everything for November 29th. Dr. Korones did stress again that he still believes Michael's tumor is "treatable and curable". Jeff & I have already decided that next time we see Dr. Korones, we are going to ask him to explain exactly why he feels that way.
So until then, we are taking life one day at a time. Physically Michael is doing great. His hair has grown enough that he almost needs a haircut!! When you see him, you would never know that he is fighting a brain tumor and that he had surgery a couple of months ago. He is full of energy and constantly on the move. He is inquisitive and is learning new things everyday. He is still our little chatterbox.
Emotionally, we have some concerns though. He is still going to school but we are worried he is not interacting with the other kids. He doesn't know any of the names of the kids in his class and never has any stories about playing with them. We went to pick him up early one afternoon and the class was on the playground. Michael was sitting on the edge of the playground just swinging his feet back and forth, looking pretty lonely. We knew he couldnt' play on the equipment but we were hoping maybe he would play with the kids, just not on the equipment. It was pretty heartbreaking to see.
Michael has also become a terrible homebody. He puts up a fuss whenever we talk about going anywhere. He tells us he is going to miss Chance (our dog) and Midnight (our rabbit) and he just wants to stay home. This weekend we finally made our annual trip to Pixley Falls (something Jeff & I have done every fall since we started dating). Michael complained on and off all day that his stomach hurt and asked when we were going home. I think since his hospital stays, the only place he feels safe is home and we are at a loss how to make him feel safe again. With the crazy shifts Jeff & I were working to keep Michael out of daycare, this was the first weekend Jeff had off in a long time so we haven't had the chance to do many things as a family since the surgery. Hopefully that will change now and with time Michael will enjoy life again.
Next Sunday, we are driving to Binghamton to see the Playhouse Disney Live show. It will have all of Michael's favorite characters in it. He will see Pooh, Tigger and Darby from "My Friends Tigger and Pooh". Manny and the tools from "Handy Manny" and Leo, Annie, Quincy and June from "Little Einstiens".
In the meantime, our little buddy is just counting the days until Christmas! The other night he saw a star in the sky and Daddy told him to make a wish. Michael wished the next day would be Christmas. In fact he has not one but TWO wish lists on the fridge that we make changes to almost daily. He has the entire family excited for Christmas as we know Michael is going to be a lot of fun this year. But before Christmas, we are praying for good news on the 29th. We will keep everybody posted. Please keep Michael in your thoughts and prayers. JoAnne