During December of 2018 and into early January, prior to diagnosis, before we knew what the hell this was, Beaudin had to give a lot of blood samples. Daily cultures, daily labs, tests to send to Clevland, to Mayo. Was it Epstien-Barr, AIDS, “just the flu”? He had over 30 blood draws and/or IV placements. 30 pokes over the course of 40 days. And for each of those 30 pokes, there was screaming, thrashing, weeping, and protests.
“YOU ARE HURTING ME!!!! WHY DO YOU WANT TO KILL ME!!!” He would wail as 4 medical staff, plus Josh and I, would do what was necessary to get his blood drawn.
“MOM! DAD! SAVE MEEEEE!!!!!” Before eventually the jumbled, sobby words would turn to shrieks of terror.
It was weeks of unknown, of long hospital stays, of vital checks that woke us every 4 hours, of fevers that may or may not break from Tylenol, of “precaution” that had anyone who entered out hospital room gown-up, head to toe, because we weren’t sure if what he had was contagious. Weeks of skin tone that seemed a hint yellow, and blood results that couldn’t be explained. Weeks of “It appears to be a viral recovery,” that never felt right at all.
“I HAVE TO TELL YOU SOMETHING! I HAVE TO TELL YOU SOMETHING!” He screamed as the team held him down to get the IV back in place.
“What do you need to tell us Beau?” Everyone stopped, wanting him to be heard.
“THAT YOUR HOLDING MY ARM TOO TIGHT!” He’d cry, as everyone realized he was just delaying.
“Beau, we have to hold it so tight because you are flailing you body about.”
As soon as the words registered, as soon as he realized that his need would not be met, and actually full on disregarded, he would try to escape the bed.
“DON’T HOLD ME SO TIGHT! LET ME GO! LET ME GO! YOUR HURTING ME! DAD!!!! YOUR HURTING ME!” Everyone would make a grab for him, trying to keep him in still, trying to get the IV in place.
This is bad. This is so bad. Why are we hurting him. Let him go. Please let my baby go. This is hell. I think I am in hell. Why is this so bad. Let go of him.
“Bubba, it’s almost over, just stay still.” I would whisper as tears streamed down my face. I couldn’t look at anything but his eyes, and they were horrified. Beaudin would scream until he was blue in the face, 4 nurses and his dad, all holding him down tight. The heart rate monitor starting to beep because his body was in panic. Nurses coming from the nurse station to check. Doors opening, Beaus panic moves to the door. More nurses, more hands, more restraint. “DAD!!!! YOU ARE HURTING ME! STOP! YOUR HURTING ME! DAD!!!! YOU ARE HURTING ME!”
The IV placed, the grips released, Beau would took his first full breath in minutes, and turn over to burry his head in my lap and sob. He and I both. “Mom…. Dad hurt me…… and you didn’t stop him.”
Within moments the skies would return to calm, and Beau would return to center. He would look closely at where the IV entered his skin, and ask his nurse about how exactly it was that there was no needle left behind. Josh went to the en-suite bathroom, he threw on the faucet and then the shower to dampen the echo, and he sobbed. After a while he reentered the room.
“Im sorry that was scary Beau.” Josh would humbly start, his face red with tears.
“Oh, it’s ok dad.” Beau would say nonchalantly, “Hey dad, dad, want to play that one game with the circles?”
By the end of our hospital stay in December, we had learned the noises of the hospital. I knew if a conversation between nurses was ‘in passing’, or if the team was gathering outside our door to start their rounds. We could finally sleep despite the constant beeping through the night, and we’d learned that only certain alarms were really alarming. Beaudin was keenly aware. He would listen for footsteps down the hallway. And if those footsteps led to our room, he would tense and when the door opened, he would start crying. We had all the support systems in place, Child Life specialists, Special Procedure teams, you name it. And nothing helped. Beaudin was horrified of needles, of doctors, of this.
In the end, these tests were showing us nothing. No one knew what was wrong with Beaudin, and yet, we continued to poke.
A diagnosis, a relief.
On January 17th when Beaudin was diagnosed with Acute Lymphoblastic Leukemia, the doctors explained that he would have a port placed in an interior artery, just below his collarbone. I will describe that in detail in another time, but basically: no more IV’s. I remember hearing about the port and thinking that this was our silver lining. No more IV’s! Thank God! Cancer? Fine, at least we have an answer!! but no more IV’s- Thank you JESUS!
Our nurse caught on to my incorrectly placed excitement and said, “Oh right, no IV’s, but he will have to get his labs drawn every week to check his levels. It will have to be peripheral, can’t use the port for those.”
Um, excuse me?
Did you just say that we are going to have to get his blood drawn every week? Needles, sobbing, “SAVE ME!”…..every…..week? For three years….
Lord Jesus, take me now.
I can’t do it. I just can’t. I can do cancer. Frankly, having an answer to why he is this sick is a relief. Leukemia, that’s well researched… That’s the “best cancer to get….” I can do the cancer thing…. But please no, please GOD, no, no, no more blood draws. I can’t. I just can’t. I can’t hold him down like that. I can’t listen to him panic. I don’t have the adrenals for this. I am so tired. Just access his port! More risk? Fine! Central Line infection? Whatever! Just don’t make me hold him down-with so much force that I think I may have bruised him- while he asks me why I am letting people try to kill him.
UC Health Longs Peak Hospital is fancy. Brand new, should I take my shoes off at the door, has anyone even sat in this chair before me, fancy. The front lobby floods with light from the 4-story glass windows. The lobby tiles have hints of glitter and when combined with the sunshine, make you feel like you are checking-in to the Hyatt, not the hospital. There is a self-playing piano releasing beautiful music that echos through the space. And best of all, they call you by name.
…where everybody knows your name.
The first time Beaudin went to UC Health for local labs I had Josh take him. I needed a break. And by break, I mean I waiting with bated breath and texted Josh for a play by play.
“How’d it go?”
Good? What does that even mean? Like good in that it was par for the course, that he screamed, and you held, and now you’re both tired? Good like you don’t want to tell me the details, so you’ll leave it at “good”.
“Good….like, good how?”
“We met Deb. She’s going to change everything.”
More on Deb in the next post.. aren’t you excited to meet her??