It’s been a couple weeks since I gave an update on Ian. It’s been fairly uneventful in our household, which is welcomed after the last few months we had.
Something major that did happen recently is Ian started his new treatment. It’s not the chemotherapy I think most of us expect when hear those words. He doesn’t need to go to the hospital for weekly infusions. He doesn’t get nauseous or have a low immune system. It’s something called a MEK inhibitor, and it’s a pill that Ian takes at home twice a day. Ian has a mutation in the FGFR1 gene. This gene gives instructions for making a protein known as fibroblast growth factor receptors, and it is responsible for cell division, as well as regulation of cell growth. Because there is a mutation in this gene, it is overactive and telling cells to keep dividing, which is what causes tumors in Ian’s brain. The MEK inhibitor tells these cells to stop dividing, so in theory, should regulate the cell division. This has been proven to work for other children with Ian’s type of tumor (pilocytic astrocytoma), but the issue is that most kids have a BRAF mutation with this (also known as the breast cancer gene). So while we don’t know if this will work with Ian’s mutation, we are extremely hopeful that this will keep him stable. That’s always the goal. Keep him stable. Shrinkage is a bonus. I just want to keep my baby here with us, while also giving him the highest quality of life.
At this point, it’s been about a week since Ian started this treatment, and so far, he hasn’t had any side effects (knock on wood). I’m not sure if symptoms can appear the longer you are on it, but my understanding was that side effects would occur in the early stages of treatment and should then taper out as Ian’s body gets used to it.
He’s also had other doctor appointments. One for a Botox injection in his right leg. Because Ian still has right sided weakness, his muscles on that side can tense up. The injection will help relax those muscles relax so that we can work on getting Ian stronger.
Another appointment we had was with neuropsychology. We had our first of 3 appointments so far. The first one was kind of like an intake one where we explained our concerns with Ian and gave some background on him. The next appointment, which will be this Tuesday, the 7th, we’ll take him down to Children’s to be evaluated. The third appointment, which is later this month, we will go over the results with the doctor and figure out where Ian needs most help with and how we can best help him.
We’ll also follow up with our oncologist at the end of the month just to discuss how Ian is doing on his treatment. As of now, March is free of doctor appointments, aside from his usual outpatient physical, occupational, and speech therapy. April, we’ll follow up with neurology for Ian’s seizures, and then Ian’s next scan and oncologist appointment will be April 21st. This will be the first scan since starting his treatment, and we are hopeful for good results.
As I advocate more for childhood cancer and brain tumors, as I do more research and families to reach out to, you all know that these little things affect your algorithm online. So, I see more and more stories about childhood cancer and people, mostly young people, fighting brain tumors. It is absolutely devasting. Malignant brain tumors are extremely difficult to treat. The brain is very delicate. One wrong snip can alter a person’s quality of life. Or even be fatal. And even when the surgeons believe they got everything out, cells are so microscopic that just one mutated cell can bring the cancer back. Also, chemotherapy can be difficult to treat brain tumors because your body will do everything it can to protect the brain. Ian’s first treatment, we were told only a percentage of what he is receiving actually gets to the brain. It was such a gut punch to hear that we are pumping literal poison into our baby’s body, and it might not be enough because it all doesn’t get to where it needs to. And you can’t give more because your body can only take so much before it has fatal consequences on the rest of your organs. In addition to this, there’s radiation to target the brain tumors, but this too can have serious consequences later on. Radiation of any kind is harmful to the body. While it can shrink the current tumor, it can be the very reason another more aggressive kind comes later down the road. After Ian’s tumor hemorrhaged, we were told the doctors suspected malignancy. And I remember feeling like my world stopped in that moment. Because I knew. I knew what that entailed. And yet, I didn’t. I couldn’t even begin to scratch the surface on it. It makes me so grateful we were that very small percentage, that 2-3% chance, that it wasn’t malignant.
If you feel compelled to help, please consider donating to the Pediatric Brain Tumor Foundation at the link below. If you can’t, please just spread the word and read about the foundation’s mission. There needs to be more awareness, more research, more funding, more options for those battling these horrible diseases.
About Us – Pediatric Brain Tumor Foundation (curethekids.org)
