Childhood Cancer Awareness Month

I started this entry yesterday without having a clear purpose other than the compulsion to write something. I started by saying: "For now, I haven't been crying as much." But then today, I happened upon a Facebook post that broke me. 

For the most part, since we've completed radiation, we've been able to re-enter our "everything is fine" bubble. Sure, her diagnosis is always there under the surface, but it's easier to ignore when we aren't going to the doctor's office every day and she is generally ok. So yeah, for the most past, I have been crying less. Once a day is normal, right?

Last week, we had a 5 hour long appointment with neuro-psych, and we will get the results on Monday. We have the post radiation MRI next Tuesday and a clinic follow up immediately after. For now, we've been trying to enjoy some down time. We've had friends over, we've re-started Girl Scouts, and we've gone to Carowinds and the zoo. We went and got passports so we can plan her Make-A-Wish trip, and we are going to a concert next week. I try to keep in mind how lucky we are to get this time and to have a child who is hopefully still tumor free. 

Then, September 1st happened. September is Childhood Cancer Awareness month. I've been following a lot of different pages on Facebook. Some are support groups, some are non-profits. The posts are pretty frequent and regular. Since September, many of them have been posting tributes to children who are currently fighting cancer or who have died. For DIPG/DMG pages, it is a lot of death. In the posts, they will talk about what the parents have been doing, and many take on the labor of raising awareness and money for research. Childhood cancer receives only 4% of federal cancer research funding and brain cancers receive even less than that despite being the most lethal. DIPG/DMG even smaller. I can usually get through the posts without sobbing. In a morbid way, I find them comforting. If the worst happens, at least there are others who have gone through this too and are surviving on the other side. 

But, today, I clicked on a profile and the first post said, "I'm so sorry Kaia" with a picture of their daughter who died three years ago at 7.  The apology gutted me. My daughter trusts me to protect her, to care for her, to act in her best interest. She trusts that her doctors will do the same. She trusts we are going to make her better, and that might not be possible. I'm so sorry. 

I scrolled on, and there was another post, gutting too, but well written and I'm going to put it here to remember it. The train hasn't hit yet, but damn if it doesn't feel like it is coming all the time. 

Imagine waking to randomly find yourself in a horror film. Your beautiful six year old daughter has been shackled to train tracks, bound with unbreakable chains. Way off in the distance you can see a train coming, slowly chugging along at just a few miles an hour, but unrelenting. A gripping panic sets in as you desperately seek help, and yet all of the police, firefighters, and engineers just throw up their hands and say there is nothing they can do to remove the chains or stop the train. They tell you to focus on making memories with your daughter in her final days while she lies shackled to the tracks. You feel utterly abandoned and alone in your family’s struggle.

You rapidly go through the first four stages of grief—denial, anger, bargaining, and depression—but not the fifth stage acceptance. There can be no acceptance, because your daughter is still here with you, scared and in need of your help. So instead of reaching acceptance, the first four stages of grief just endlessly loop, over and over again, as you live in a state of latent panic, trying every day to find a way to save her from the oncoming train. You stay up every night researching, becoming an expert in trains, shackles, tracks—anything that might yield hope. You spend all of your time and savings scouring the Earth for a breakthrough. You bribe, you threaten, you cheat. You wish that throwing yourself before the train to take her place would somehow stop it. You find yourself morbidly envying parents who lose their children to car crashes, because at least that is quick and there is less suffering. And through all this mental anguish, you also need to put on a strong face, comfort your daughter, and urge her not to worry about the chains or oncoming train, because Mommy and Daddy have got this.

But in the end, you fail her. After ten long months of desperation, the steadily chugging train arrives, and you watch it slowly crush her before your eyes, while you hold her hand and tell her how much you love her and how sorry you are that you failed her. And after she draws her final breath in your arms, you feel the expected sorrow, but also an unexpected twinge of … relief … and you fucking hate yourself for it.

Then comes the after. The sleepless nights. The endless “what ifs.” What if we had gotten an MRI sooner, leading to an earlier diagnosis? What if I had been smarter, bolder, more fearless with treatments? What if I had stayed on treatment X, which was working, instead of switching to treatment Y? What if I had not treated at all, put her through less pain, and spent more time with her? What if we had better luck? What if God cared? What if, what if, what if ….