Friday was definitely a hard day for us. Peyton's MRI was scheduled for 6:30 am. We were prepared for a long day because he would have chemo after that. So far the MRIs have all turned out the same. Little change has been seen in the size of the tumors, but we have been happy there has been no growth either. With only a few treatments left until our projected end date, we thought this MRI would be the same as the previous ones. When Peyton's oncologist came into our room before chemo started she told us she had good news and bad news. Never a good thing for a doctor to say. She told us the good news was the tumor on Peyton's optic nerve hadn't changed since the last MRI in April. The bad news was one of the other tumors around his brain area had doubled in size since then. I was so shocked to hear this news. I think we knew immediately this was going to entail more treatments. Sure enough doctors will start Peyton on a new chemotherapy drug and treatments will be extended for another year. We now are scheduled out until September of next year. I will admit this news hit me really hard. I have been looking forward to finishing up in September for quite a few months! Peyton was excited to have his mediport taken out, and we were all looking forward to fewer trips to Denver. We know Peyton will always have NF and he will always need regular doctor appointments, but we were looking forward to not traveling every week!
Unfortunately there are no guarantees this new chemotherapy will work. The doctor told us there's of course the chance it won't work, and then we'd have to think about surgery. That really scares us, so of course we will do whatever we can and explore all options before something like that.
Peyton was really concerned about why I was crying when the doctor gave us this news. He kept asking me what was wrong and telling me it's ok......I try really hard to keep my emotions in check around him but that day was very hard for me. When I explained later that he will have to continue doing treatment and keep his mediport in, he said "It'll be ok mom. I'll be alright." Powerful words from a 5 year old that complains very little about his situation. Again I will say, he gives me strength!
We have made every trip to Denver as a family. Peyton has had us there with him, each and every treatment day so far, and I know we will be right there with him (together, all us) for the next year. He is my sweet baby boy.....
On July 15th he will have an eye exam and chemo afterwards. Another long day, but hey....we are getting to be pros at this.
