“I don’t read your blog, it’s too sad.”
This is a statement I have heard countless times from friends and acquaintances. I have also had some people tell me that when they share Ty’s story, they sometimes get a similar response. Or they are questioned why they would care so much about these kids with cancer, "Isn't it too depressing?" Yes, kids with cancer is very, very sad and very, very unfair. But it exists, it is a horrific problem, and nobody wants to talk about it because it's too depressing? I don't get it. Every child is at risk. We can't keep turning a blind eye.
I understand that it is very sad, and I certainly don't expect people to hang on my every word, but it used to bother me if someone proceeded to ask me how Ty was doing following a statement like that. I began writing about Ty’s life with cancer because it was too painful for me to talk about it. To explain medical details over and over and over again. I wanted to say… “if you want to know how he’s doing READ THE BLOG!” I didn’t, that’s not my style, but how I wanted to sometimes. Instead I would share the latest news and politely update whoever was asking. In hindsight, it was hurtful to make me answer that question when everyone knows I created this forum to avoid having to do just that. Sorry my life is too sad for you to read about, fine, but then don’t ask me to talk about it. (I hope this doesn’t cause anyone to refrain from asking how I’m doing now – that is totally different and I truly appreciate that you care).
I don’t want to be polite anymore. Instead I want to cram this message down people’s throats. If they don’t want to read about it, then I want them to hear about it! I want to get on a soapbox and talk about it all day long. I don’t know why the media isn’t covering childhood cancer. I don’t know why no one wants to talk about the sad truth that kids are dying every day and with more research we can give these kids a better chance. I want to remind parents everywhere that NO CHILD is immune. Cancer happens to children at random, and there is no known cause. It is completely different than adult cancer, and it should be treated differently. That instead, only one new drug specifically developed to treat pediatric cancer has been developed in 20 years, yet the incidence of the deadliest childhood cancers have increased by 29% in those same 20 years. We need to stop using the same treatments that were designed for adults and start from scratch, break the mold and approach childhood cancer differently. I want to hold up a photo of Ty, healthy, followed by photos of what cancer did to him – not just the disease, but the horrific treatments. It was the medication that caused full body muscle myopathy. It was the side effect of treatment that left him paralyzed from head-to-toe.
Cancer is typically approached like weeding a garden. Pull the weed (surgery), put something down the entire area to try and get at all the roots underground (chemo), and then sprinkle weed killer in hopes that no new weeds can grow (radiation). Of course, weeding a garden so aggressively also puts the healthy plants at risk. This is why we need a new approach if we are going to save our kids.
I recently shared an interesting article with Ty’s neurosurgeon, Dr. Jeff Greenfield, about a new tumor dye that is being used in the operating room. The dye reacts with cancer cells, causing them to change color. This allows the surgeon to remove more of the tumor tissue while avoiding damage to the healthy tissue around it. Obviously a very important factor when dealing with an organ as critical as the brain where only so much healthy tissue can be destroyed before irreversible damage is done. Our wonderful doctor responded along these lines.. "Yes, we have started to use the dye. My philosophical issue, however, is that we should instead be striving for a day when getting a 95% vs a 99% resection will be unnecessary. A moot point. Our research efforts are directed toward targeted therapies instead, meaning we would require only a limited tumor biopsy or blood samples, then we can sequence the tumor, match the target drug, vaccine, molecule, what-have-you and treat the patient that way. It will put me out of the brain tumor operating business but I would be very happy with that." That response right there is exactly why we need to fund research. There are children that are suffering with a terminal prognosis, waiting for such a targeted therapy to become available to them.
I often say that having Ty made me a better person. When I reflect on our life before his diagnosis, though, I wonder about that. Instead I think it was his diagnosis that made me a better person and a better mother. Before he got sick, I was different. I was more selfish and less empathetic to the problems of the world around me. I loved my boys so much, never could I have imagined something would happen to them. Not my Ty! He was too wonderful, the light of my life. He was going to be a quarterback, a surfer, a senator. He was going to grow up to hold the door for girls and stick up for his classmates that get teased. He was just a cool kid who was impossible not to love.
Oh how I wish I could go back to living that happy life with blinders on. I wonder if I might have been the person that says, “Why do you read about all of these children with cancer, it’s too depressing.” Or, “I can’t read that blog because it’s too sad.” I hope not. But the truth is, I knew nothing about childhood cancer and never even heard of Caring Bridge or read a blog other than Perez Hilton. I wish Ty never had to get sick in order for my eyes to be opened. I want my self-absorbed little life back more than you can ever imagine. But that is impossible. Now I have a new purpose. I need to continue sharing Ty’s story until more and more people listen and get behind the cause, regardless of how sad it is. You know what isn’t sad? A kid with cancer who gets better and goes on to become a quarterback, or a surfer, or a senator. Together we can give more kids like Ty that opportunity.