New Year's Day morning found me with a horribly swollen face. What I had thought the day before was a sinus infection, turned out to be a root canal I had 30 years ago "gone bad". I went to my dentist yesterday morning and he sent me to a specialist in Syracuse in the afternoon for emergency surgery. Jeff left work early, we drove to Syracuse and sat in the waiting room 45 minutes to learn that there was too much swelling for them to perform the procedure. I am on high doses of Penicillin that will hopefully help the swelling go down so they can do the surgery on January 14th. I am not sure that plan is working since this morning the swelling had spread enough that my left eye wouldn't open for a while. We'll see what tomorrow brings and if the swelling isn't better, I think I will call the group in Syracuse to see what they suggest.
Today was our trip to Rochester to talk to Michael's oncologist, Dr. Korones. The weather was not that great going down and it took us an hour longer than usual. We had a long talk with Dr. Korones and Jeff and I both feel a little better after the visit (all things considered). Dr. Korones said that although radiation can be more effective than chemotherapy on tumors, it is very dangerous in children under the age of 10. So, he has recommended we start chemotherapy and Jeff & I have agreed.
He gave us the choice of 2 different regimens:
Regimen #1 is a tried and true course of treatment that consists of the drugs Carboplatin and Vincrisine given weekly by IV over the course of a year.
Regimen #2 is a relatively new regimen that consists of 4 drugs given both by IV and orally over the course of a year. The oral part is taken at home and the IV portion is every 3 weeks.
Although the second choice has shown SLIGHTLY better results in a recent clinical study, we have chosen the first regimen for several reasons. The most important being that Dr. Korones said the newer treatment plan is "rougher" with side effects that are both more severe and more frequent (including the chance of developing secondary cancers). And as I said above, there isn't enough of a difference in the results that Jeff & I think it is worth exposing Michael to the increased side effects.
There are a few side effects with the Carbo/Vinc regimen. First, there is the one that we all associate with chemo, hair loss. Although it is possible, Dr. Korones doesn't believe Michael will lose his hair which was a big relief! Michael doesn't take changes like that very well. We recently tried to explain to him what the tooth fairy was and he became VERY distraught at the thought that he may lose his teeth. It didn't help that we explained it is normal and every body's baby teeth come out to make way for adult teeth. He didn't want to hear it. Secondly, nausea, vomiting and fatigue are possible. Dr. Korones doesn't think Michael should experience those side effects either since his overall health and energy level are so great.
He said low blood counts are possible and they will monitor that weekly and if necessary Michael would receive a blood transfusion. He also said Vincristine can irritate the nerve endings throughout Michael's body and show up as constipation, abdominal pain, back pain, leg pain or jaw pain. We will just have to worry about that IF it happens. The good news is that none of these side effects are permanent.
As discussed in a previous post, we will be able to go to Syracuse to receive the weekly chemo treatments. We will be going to Rochester on January 17th and Michael will be admitted to Golisano's Children's Hospital. On that day, he will have an MRI under sedation for his doctors to use as a baseline to gauge the effectiveness of the chemo treatments. Then on Friday, he will have a "port" surgically implanted through which he will receive his meds and the doctors can draw blood samples. The port actually sounds like the scariest part to me. There are things that can go wrong with the port and Dr. Korones said that a county health nurse will have to come a couple of times a week to do "maintenance" on the site.
We talked to Dr. Korones about whether he still believes Michael's tumor is low-grade (benign) as opposed to high-grade (malignant) since it has started growing so soon after surgery. He said that was a very good question but he still believes it is benign. He said that it is possible that if there was not enough of the tumor removed and tested there could have been an error in the pathology reports (in other words if part of the tumor is benign and part is malignant and only the benign part was tested.) He said that quite a large part of the tumor was removed and tested and therefore the margin of error is unlikely. He just thinks that Michael has an aggressive low-grade tumor. But the important part is that it is curable and treatable.
We picked up the last of the records we need for our second opinion from Children's Hospital of Boston so we hope to hear from them next Friday. Jeff & I don't expect their recommendations to differ significantly from Rochester. If they do, then we will have to decide which group to follow and that would be a really tough decision. Jeff & I have already discussed it and if Boston recommends another surgery, we don't think we will do it at this time. The risks are just too high.
I will post again when we hear from Boston. In the meantime, please keep Michael in your thoughts and prayers. JoAnne