I've had a pretty good week so far, emotionally. Emma is doing superb, don't get me wrong. But I've been working on trying to keep my chin up. Truth is this sucks. Bad. I've been emotionless and tough from the beginning, and it is slowly starting to wear on me. Today was hard.
Lately, I've been looking for answers and hope. First of all, you must understand that Ependymoma is a rare type of brain cancer. Only 8-10% of all pediatric brain tumors are Ependymoma. So what that means is there is very limited research on this specific type of tumor, and also limited ways of treating it. Chemo doesn't work and radiation is the only thing there is, really.
On top of that the scope of research for pediatric brain tumors in general is limited. Government research funding and even awareness is limited. Human nature is to look away until it happens to you, right? So sad. Everyone's heard of Susan G. Komen and breast cancer awareness, with the little pink ribbons. Everyone supports that. Ok. Heart disease, colon cancer, even Leukemia. Ok, fine. But childhood cancer. Where is that?
So I'm looking for hope. Hope in internet research. Hope in the stupid online support group forums that are out there. Sure there are ones for pediatric cancer. More specifically pediatric brain cancer, but there are hardly folks on there with kids with Ependymoma tumors. Much less with the great prognosis and recovery that we have with Emma.
So where is it? Where is the hope? I want the stories of hope. I want to hear news of good surgical and treatment outcomes, and good survival rates. But I can't find them. It scares me. I can't seem to find that one good story of a kid that got diagnosed with Ependymoma and beat it and lived to adult old age. One that lived with a normal life, with no feeding tubes, and no blindness, and no slow mental ability that was a side effect from radiation. I'm sure that person is out there, but I'm still looking. At the same time I don't want to ask. I don't want to ask the doctor and have him tell me that life span is less than I expect. I don't want to think of stuff like that for my girl. My Emma.
Thanks for letting me vent.
1 comment:
Emma is going to be the case that you are looking for, Jayne! Unfortunately, someone has to be the pioneer and you are that person, but your words and Emma's example will be the hope for someone else. It is a rare cancer and you have been given a good prognosis - I'm sure there just aren't a lot of similar case histories to draw on. But someone someday will be searching like you are and will find your blog - or perhaps you'll post Emma's story somewhere more public, and it will be the hand they needed to grab in a dark moment. Someone has to be the first, Jayne - tag, you're It!!
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