We hate the numbers...

Today, we tackled our first “school day” at the hospital. We were semi-successful.

He worked on maps and worksheets for social studies and did his reading while the chemo meds dripped into his IV.

His hemoglobin is low today, so along with the chemo, he is getting two more transfusions of red blood in hopes that his body will be ready for the all important bone marrow biopsy next week. Because he has had so many transfusions and his body doesn’t always handle them well, he has to be pre-medicated with Tylenol and Benadryl to fight against adverse reactions. Those always make him tired.

So he’s tired and, today, I’m tired.

As I sit here next to him, I try to understand how it is so exhausting doing absolutely nothing.

While I’m trying to figure that out, I think about last night. Last night I had the opportunity to share a bit of Brady’s journey with our City Council after the mayor read a proclamation recognizing September as “Pediatric Cancer Awareness” month. So many numbers were shared. So many statistics. For all kids, not just Brady.

As I spoke specifically about Brady and his numbers, my voice got shaky. I was so frustrated. I know the numbers. I think about them all the time. Why can’t I speak the numbers without almost crying? I’m not worried about the numbers. I only need one. Just Brady. But somehow the numbers, speaking them out loud, gets me every time.

1 in 5 pediatric cancer patients won’t survive.

Of those that do survive, they face unbelievable barriers and battles ahead.

Because of his mutation, Brady has a 50% chance of survival after five years without relapse.

So, he would be 1 of only 32ish patients worldwide in the past 20 years to make it without relapse when we get to that point.

I hate that number. I feel like it is taunting me. 1 of 30 in the world.

So today I realize, I’m tired because in the back of my mind, that number is always there. And even though I refuse to let that number dictate my life, it still is just there, hovering.

I know it is hovering in Brady’s mind too. The other day a friend asked him what he wanted to do when he grew up.

Brady’s response took my breath away.

“Well, right now,” he said, “right now, my only goal is not to die.”

Whew. Heavy stuff. The numbers are hard enough for me, but the fact that he is old enough to also know those numbers and understand them, that is rough.

I hate those numbers. He does too. We all do.

So we pray. Lord, renew our minds and thoughts. Let our eyes be on you so that the noise of the numbers fade away. You’ve got this. You always have.

“Let us be transformed by the renewing of our minds”

#waytobattlebrady#bravelikebrady#TheBattleIsOn#leukemiawarrior#phillylikemutation#pediatriccancerawareness