Last month Matt had a follow-up MRI to make sure the surgeon had removed the entire tumor. We met with Matt's surgeon right after surgery (in June) and he was confident he had gotten all of it, so we went into the MRI very optimistically. I want to point out that Matt has had several MRI's since May and has been able to get through each one without any sedative at all. MRI's take 45 minutes to an hour. That's a long time for a 9 year old boy to stay still!
Jason and I walked around outside Primary Children's during the MRI. When it was finished we met with the surgeon to look over the results. First the surgeon refreshed our memories by showing the first MRI, the one with the 4 cm brain tumor. Matt stood up to get as close as he could to the screen as the newest MRI images came up. The MRI without contrast showed nothing, which was fabulous. However, the images with contrast showed two tiny, white dots. Matt immediately looked at me, eyes huge with worry. The good news is that it's very tiny, less than 1% of the original tumor. The doctor explained to us that it could be scar tissue or residual tumor. He said the imaging would be sent to Matt's oncologist so she could take a look at it. Then the tumor board (including Matt's surgeon and oncologist) would meet in a week to discuss the best plans for moving forward. He explained two options, another MRI in a few months for comparison or a chemo regimen, which would start immediately. Jason and I were not prepared for this. I don't know if it's possible to be prepared for the news that your child might need chemo. It's terrifying and heartbreaking. We drove home with heavy hearts, but were sincerely trying to stay hopeful and optimistic.
I struggled with the little things when we got home. Dishes, laundry, homework...all of it felt like more than I could handle. I did my best to push the "what ifs" out of my mind and to move forward with my life. By the end of the week I felt ready for whatever the doctors decided. A lot of my worry was replaced with gratitude for amazing doctors and modern medicine. We finally got a call from the doctor who said the entire tumor board felt that it would be okay to wait a few months for another MRI. So we'll be heading back to the hospital in December. We are hopeful, but a little more prepared for all possibilities.
During the appointment Matt's doctor said it was time to wean him off his anti-seizure medicine. Matt had a seizure a couple hours after surgery and it is one of my worst memories from the hospital, mostly because I was alone with him when it happened. I knew something wasn't right and asked Matt's nurse (who was just outside his room) for help. He didn't believe me, dismissing my worry completely, and turned away to use his computer. I still felt like something was wrong, so I kept talking to Matt about anything that might interest him. I showed him some movie options when his seizure worsened and he became unresponsive. I ran back to his nurse who finally listened to me and decided to actually check on Matt. He tried talking to Matt, then ran out of the room quickly and made a phone call. Next thing I knew Matt's room was full of people, rushing around. They put a crash cart on the end of his bed and sent him to get a CT scan. Jason and I were able to go along. We held hands as we anxiously watched our little boy go into the CT machine, completely scared out of our minds. Everything ended up being okay and Matt was immediately put on anti-seizure meds. When we were told to start weaning him, I was terrified. I didn't want to relive what had happened in the hospital. It took me a week to actually start weaning him. Thankfully Matt hasn't had any problems at all and is now completely off all meds! And it only took a few more years off my life to do it ;)
I realized this week that I can no longer remember what it was like to not worry about my kid's health. I have no idea what that is like anymore. I am not yet at the point where I can say I'm grateful for this trial. I think I'm in a grieving process as I deal with my new reality. I have learned so much from this trail though, life changing lessons that I am deeply grateful for. I have heard people who have gone through much worse say that they wouldn't have it any other way. I hope I get there. I think I will in time.
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