I had no idea about childhood cancer before I was thrown into this world, so I understand when other people also don't know. Many people are under the impression that once Liam's treatment is done that we can put it all behind us. I suppose people have heard the statistic about pediatric cancer having 80% 5 year survival rate, which does sound good. Cancer is not like a cold. You don't just get over it and it is over.
I've previously listed the long list of side effects, long term effects/late effects that Liam will face from surgery, chemo and radiation. Medical conditions for kids surviving cancer are certain and very real, we can only hope they are less. Liam has troubles with motor skills, he may never ride a bike due to balance issues, he may always be smaller in size (currently 3rd percentile), these are all minor. It's the heart, kidney, hearing, secondary cancers and other issues that are the most scary.
Unfortunately, Liam is already facing his first issue, hydrocephalus. Scar tissue is causing blockage of the normal CSF flow in Liam's brain, possibly from the surgeries. Do we intervene with surgery now, to prevent further hydrocephalus? Do we wait until Liam presents symptoms? Is the hydrocephalus causing Liam brain damage right now? Possibly, there is no way to know. Shortly after Liam's 5th birthday, he may have to go in for more surgery (brain surgery #3) to his brain to fix the hydrocephalus.
You might ask how long Liam's life will be compared to an average person. Consider this - there are no statistics because so few people with Medulloblastoma have lived into their 30s yet. Out of the children who were diagnosed with Medulloblastoma 30 years or more ago, many/most of them are no longer with us. Medulloblastoma is a very aggressive form of cancer, which they had troubles diagnosing early enough 30 years ago. Thankfully, MRIs can tell us much more about the disease now.
Chemotherapy and radiation have killed the cancer in Liam's body... but:
- One of Liam's chemotherapy drugs has a possible side effect of Leukemia.
- Radiation causes cancer and Liam had 30 days of radiation, not to mention I can't count how many CT scans and x-rays.
Any child (or any person for that matter) who is impacted by cancer is never "just over it" when the scans are clear. Every 3 months, when Liam gets his MRI and lumbar puncture, then there are 2 ways the results can lead, overjoy or devastation. 3 months is a short time to go through the emotions of waiting for the MRI and recovering from the stress of going through it. I am most thankful that Liam does not have the same stress about it as us. We don't know how much stress the anesthetic and tests cause him, but we can hope that we are carrying most of the stress.
The other factor that is always weighing on us, what are the chances of relapse? We don't know, perhaps 30% chance. The most relapses happen in the time frame of the next couple of MRIs. If we can make it 2 years out, we can breathe a little easier. With cancer in general, 5 years is much better. Unfortunately, Liam doesn't fall in the best case statistic of 80% survival, because he wasn't average risk. What happens if he relapses? Let's just say the doctors won't give us a survival rate on it, because it's not good.
I can't even say how grateful I am that Liam is doing so wonderful, despite what he's gone through. He has definitely beat a lot of odds already. I just find the more people I speak to, that many people don't understand the impact of cancer when treatment is over. I really appreciate when people ask questions, please don't hesitate to ask.
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