Too much excitement just might kill me!
It’s human nature that most of us don’t get truly passionate about a cause until it affects us personally. I think this is a protection mechanism – there are so many awful things that happen in our world, if we tried to care about all of them our heads would explode.
I found a blog written by the mother of the little boy who we just found out is NED. And I can’t stop reading it. His treatment spanned 17 months, and included not only surgery, chemotherapy, radiation treatments and immunotherapy, but various side effects including an anaphylactic reaction to one of his chemo drugs, a morphine overdose, liver disease, a bowel obstruction caused by the scar tissue from his tumor resection, and a circumcision necessitated by repeated catheterization. His odds of relapse are 50-60%, and there is no treatment if he does. In fact the ward told them they have never successfully treated stage 4 neuroblastoma – they have no long term (10+ years) survivors (thank CHOCOLATE Monkey is not in this category!). And that’s only what I’ve read so far.
Hubs asked why I read these blogs, when they’re so depressing. And I realized it’s because I feel like I owe it to them to know. It is important to me that other people know what happened to Monkey, so when someone else puts their story out there I believe it is because they want it shared. Just knowing that somewhere some anonymous person is being touched by our stories helps to give it meaning.
Naturally since Monkey’s diagnosis, I have become very passionate about childhood cancer, and particularly about neuroblastoma. I want to help. I want to support families who are suffering through this. I want to give the children comfort. I want to find a cure.
But I don’t know how I can contribute.
I feel somewhat under qualified, like I haven’t really earned the title of Cancer Mum. Yes, my baby had cancer. But his chances of making a full recovery are/always were very high, and his treatment was mild, over and done in the blink of an eye. Any support I could offer to other families seems insincere – I have not gone through what they have to deal with. What right to I have to pretend that we share that experience?
I’m very smart, but I’m trained as a software engineer not a medical researcher. And reskilling takes serious time, especially when you have young children.
At the end of the day, I’m a SAHM with a toddler, and plans for a baby sometime (hopefully) soon. It isn’t like I have spare time in any case.
But I need to do something. I need to join the fight.
I just can’t seem to find my place.