“Announcing the Stand Up To Cancer – St. Baldrick’s Pediatric Cancer Dream Team”

“Announcing the Stand Up To Cancer – St. Baldrick’s Pediatric Cancer Dream Team”

Reading of the Dream Team gives me a sense of relief and hope. Hope that in the future more kids will survive cancer, and that those who do won’t be disabled and scarred for life.

It’s too late for Robot Boy. Even if his cancer never returns, he will have permanent damage. And we still have two years to learn how much the radiation has polluted and corrupted his young brain.

But this research, this will help future children who will fall victim to the number one killer of kids over the age of one. There could be future kids who won’t lose their hearing from their  chemo and radiation treatments. They might not have to reach a sterile adulthood or require hormone replacement therapy. Or require dialysis. Or any number of the many, many horrific side-effects of cancer treatment.

Their survival rate will increase, but also their quality of life will increase. They won’t survive a terrible disease and it’s equally torturous treatments only to live the rest of their lives with disabilities. They can survive, but they can also live.

We won’t know how much or little damage RB will be left with. But it’s definite he will be left with some-or a lot. My heart pounds with excitement reading this announcement from St. Baldrick’s and Stand Up to Cancer.

This is why it’s important to donate. Even a little. It adds up to a lot. St. Baldrick’s does amazing things for kids with cancer, and these sick children deserve a better future. St. Baldrick’s is helping to create one for them.

Findings

I’ve written in many of my past posts that my son who is two years old has been sick for quite a while, suffering from seeming bronchitis related illnesses and even pneumonia. In January he became unable to walk properly and it led to the assumption by his pediatrician that he was experiencing inflammation in the inner ear due to an ear infection. Although she was concerned the cause was much more serious, she treated the ear and we all hoped for the best.

His condition declined over January and February, which found us not even a week ago in Children’s Hospital explaining to a myriad of doctors how he’d been ill since late last year and so forth. I’ve repeated the spiel so many times I’ve got it memorized. I don’t even have to think about it.

The pediatricians caring for my child at the hospital, like his regular pediatrician, were concerned about his dizziness and instability. They were concerned enough to conduct a series of simple neurological tests that raised their concerns further leading them to order a CT scan of his brain.

I knew the news was bad when two doctors came into the room, pulled up chairs, and said they were there to talk about the results of the CT scan. They advised us it had revealed a large mass in my son’s brain. I was frozen in this moment, trying to conceptualize the reality of this information. As I held my two year old son on my lap with tears teeming, he turned around, knelt on my thighs, put his hands on my face, and said, “Don’t sad, Mommy.” Trying not to upset him, I assured him Mommy wasn’t sad. Then he reached out to tickle my face in an attempt to make me smile. And though I was still crying, it worked.

An MRI was ordered for the next day, and it showed the doctors the actual size and location of the mass. From the MRI they also learned it had travelled down into his brain stem and his spine.

Oncologists informed us in their matter of fact way that the tumor is malignant. They also told us due to its delicate location, the surgeon will not be able to remove the entire tumor and my son will require follow up treatments of chemo and radiation.

I suppose it’s needless to say that since then we’ve been bombarded with information. I’ve spoken to twenty plus doctors working in nearly every field, it seems, from neurosurgery, orthopedics, oncology, endocrinology, speech therapy, and dietary needs.

They come in pairs, sometimes more. I spoke to three ENTs, two orthopedic doctors, and four neurosurgeons. And that’s not all.

Surgery is scheduled for next week. Suffice to say I am petrified. The procedure will be extensive, it will be dangerous, and it is critical that the tumor be removed as soon as possible. The neurosurgeons are only waiting until next week because my son’s lungs are still swimming in secretions from the pneumonia.

I’m proud of myself for remaining so positive up to this point. Optimism is a trait with which I’ve rarely been associated. But I am optimistic because I won’t be any other way. Because my child is still looking at me for reassurance. He doesn’t know everything, but he knows he is sick and he knows he’s in the hospital. And although his speech is now impaired, along with his ability to swallow, eat, drink, and breath, he is still looking at me and wanting me not to be sad.