Ependymoma, say that 5 times fast (Day 130. Year 3)

Today is another amazing day of awareness--Ependymoma Awareness Day!

I mean it is not really amazing; ependymoma is total crap. If you take nothing else away from today's Yoke, just take that away: ependymoma is crap. It kills children. It takes away their normal lives. It knocks over, dishevels, rearranges and destroys the good health that felt promised the moment your child was born. 

But, friends, good health isn't promised. 

It feels good to write all of that in a non-professional way. I spend a lot of time spinning my words about childhood cancer to be professional; when in the end calling ependymoma crap just sort of sums it all up nicely. But, I am a science writer, so I'll explain ependymoma in a more professional way, too. 

Ependymoma is a tumor that arises from the ependymal cells in the brain. These are cells that form the lining of the fluid-filled places in the brain and spine. In 2007, when Lily was diagnosed, there were a handful of different types of ependymoma (regular, which was Lily's lucky diagnosis; anaplastic and others). Now, the classification of ependymoma has changed based on better tumor models that describe the genetics of these tumors. 

When we were first told that Lily had a mass in her brain, no one could tell us a name for the mass. It was just "the mass in your baby's brain." (This phrase repeats in my head at least 5 times a day and is also followed by hysterical, maniacal laughter.) Then there was a pre-op MRI and some predictions from her neurosurgeon about what the mass would be called--medulloblastoma? or maybe the non-defunct tumor type PNET? or maybe something "really bad and we will cross that bridge if comes to it."

He never mentioned ependymoma. I did not look up these tumor names and instead stuck with "the mass," because to be aware and know was to know. And I already had my fill of knowing about this crap.

After surgery, the neurosurgeon found us and seemed jolly, which is an odd emotion given it all, and proclaimed: "It was bloody! I think it was ependymoma."

I would not remember that tumor name, until the next day during PICU rounds. The attending and residents round from room to room and do a debrief. It feels like you are in an episode of House (or other TV drama). They talk fast. They push the residents and students to ask better questions. And, as a parent, I got to ask and interrupt and demand answers. In the beginning, I had just one question (Will my daughter survive?) and I wasn't going to ask that out loud. 

Anyway, the first day of rounds, the doctor crew also seemed jolly, which was just odd as before, and said "I heard it was ependymoma! That's great."

There were many well wishes--almost like our baby with the mass in her head had gotten into the really good preschool with the historically long waiting list. 

I guess they all assumed her tumor was of the "cross that bridge when we get to it" varieties. 

Anyway, despite their joy, I can tell you that everything is relative. Yes, I am forever relieved the mass in my baby's head was ependymoma, which has a 5-year survival rate of 77% (don't get excited. Lots of kids die in year 6) versus DIPG, which had a 5-year survival rate of 0%. But, no, I will never feel joy over ependymoma.

At time, standard of care was surgery, proton radiation and chemotherapy if surgery didn't get it all or if there were other spots of tumor in the central nervous system. Lily didn't need chemo; which was lucky; because doesn't work that great on ependymoma;  but they still treat with it because poisonous chemo is better than nothing. 

Sometimes at this point in the story, I feel like I should say, but it is all okay! Lily survived! But, it isn't okay, friends. My daughter is incredible and fierce and fights for everything. She's alive and healthy. 

But there are the other kids--Campbell and Paulie and Jaxson and Micah and Jake and Maddie and Ryan and so many kids--who are dead. There are kids who are fighting now and kids who will be fighting tomorrow and next year and this is why research is so important. No mother should ever hear "there is a mass in your baby's brain." No child should ever have to endure procedure after procedure. None of this should be happening. 

And friends, I often don't know what to do exactly, but I know I can share and write. And I know if you reading this there is a gift you bring to this world that can help cures kids facing cancer. 

It takes all of us to beat this crap, to make research possible and to find cures.