Skip to main content

Butterfly Blog

The unfairness of childhood cancer

It's been a very long while since I last wrote--much longer than I had anticipated. Part of the reason is good--time has gotten away from me because we've been visiting with family, we've been busy, and life has been, as I've said before, "normal". Part of the reason is bad--I am sick, sick, sick of cancer, and I don't want to deal with it in any more of a capacity than I already do in everyday life--the daily dispensing of chemo, the daily note taking on pallor, attitude, poops, eating, energy, food intake, etc, the colds, the colds that turn into pneumonia, and the slightly panicked emails to oncologists. For some reason, the thought of writing about cancer and its toll on life just felt overwhelming. But in the cancer world, and in my world as a cancer mom, there's been a lot happening.

I think I have mentioned before that I am part of an online support group for moms whose children have cancer. I have mentioned before that the moms on that group are, in so many ways, closer than people I know "in real life". I say something about cancer, and they GET it. I don't have to explain, qualify, quantify, start with a disclaimer--it's all out there and we all GET it. We get attached to each other's kids, and we "know" them. And when a child relapses, it brings about a pain that is almost unbearable. There have been A LOT of relapses on those support pages lately, it seems. Despite not having met, in person, many of these children, we all "know" them and love them, and we are devastated for them and their families. Their moms' strength brings me to my knees. I don't know that I would have their strength, grace, compassion, kindness, or sanity in their situation. And as these relapses have happened and happened, I have thought and thought about the brutal, bullshit, unfairness that is childhood cancer.

We just recently lost a family friend to cancer--one of my parents' best friends. It is devastating to his family, to his children, and my parents and his friends. It is not fair. Cancer is not fair. Yet, when someone speaks of a person dying of cancer at 65, and when they say, "It's too young. Too young", I find myself thinking about age and cancer. Other cancer moms, moms whose children are diagnosed when they are older, have said to me, "I don't know how you do it. I don't know how the parents of the babies do it. To have them so young and not understand what is happening is devastating". It is. As the parent of a child who was diagnosed at 27 months old, I can definitely say that it is unfair and horrific and hard and devastating. To watch your two year old wince in pain, touch his new, swollen port, and say, "The boo-boo. The boo-boo", is nauseating. But you know what? In many ways, it's easier. He doesn't know any better. In his world, all kids go to clinic. All kids are bald (or it's at least not strange that they're bald), and they all get hooked up to IVs. All kids are on a first name basis with their team of doctors, Child Life specialists, and nurses. I have always thought that, if this had to happen, it is easier that it happened when he was young. He doesn't know how different he is. He doesn't know how special he is. I can pretend that this is all normal, and treat him "normally". For the older children, though, it is so much harder. They KNOW this is not how life should be. They KNOW that this is not normal. They KNOW their peers are not going through this. They are old enough to have the knowledge of the unfairness of their situation, but far, far, far too young to have to experience such a horrifically "adult" disease.

And this leads me to the spate of relapses that seem to be flooding our support pages. To think of relapse at all is terrifying. The logistics of a relapse--the re-starting of chemo, the constant doctor appointments again, the isolation again, the lock-down again, the constant puking again, the constant infection fear again-it is all overwhelming to consider. I don't think there is a cancer parent out there who hasn't considered what it would be like, how she would handle it, or how it would differ from the first time around. But what has been tearing my heart apart, what has been breaking my heart for both children and parents, is that, before these relapses, life for these families would have, I would think, resumed a semblance of normalcy. I started this post by stating that our life has been very normal--even during Maintenance, life can feel normal. Once you have been a cancer parent, and once normal has been snatched away in the space of time it takes to tell you your child has cancer, you never, ever, ever take normal for granted. You revel in normal. You drink it in. You know how precious and special "normal" is. These moms and dads--they have had normal again, and it has been taken from them by the slouching beast. As a cancer parent, it makes me sick and angry and frightened and so, so, so sad. And then I think of the child.

My son, as I said, was diagnosed at 27 months. He was too young to have many experiences that he remembered. He didn't know or remember much before his diagnosis, so transitioning into practically living at the hospital and having his port accessed constantly and having painful days and long days and nights at the hospital was, in some ways, "easy". He didn't know any better. Now, though, he does. In the one year and three months since starting Maintenance, he has lived a pretty normal life, and we've been lucky. If we had to go back to the constant hospital visits and the pain, nausea, isolation, and boredom that comes with Frontline treatment, it would be far, far more difficult than the first time around. My son would know what he is missing. His anger at what he would be being deprived of would match my own anger.

These children, these babies, these elementary school aged kids, these pre-teens--these innocents whose cancer has returned--they know. They know what the warmth of sun on their face feels like. They know what their favorite song on the radio is. They know what Tball practice feels like. They know what giggling with friends and playing tag at recess feels like. They know what it feels like to go in public places and bounce houses and church and a store. They know what if feels like to go to school and make friends and see favorite teachers and be read to by someone other than mom. They know what it feels like to have the rush of anticipation for a fun event, for seeing a favorite grandparent, for going on a plane to go on vacation--they know what all those emotions feel like. These children KNOW what normal feels like, and they are being forced to surrender being a normal kid so that they can stay alive. That is NOT normal. It is not right. It is, in so many ways, the most heartbreaking aspect or prospect of childhood cancer.

Please, whatever your belief system is, be it a belief in God, a belief in spirits, a belief in the power of positive thoughts and vibes and good juju--whatever your belief is, send it to these relapsed children and their families.

Powered by Firespring