The Tribulations of a Trial

“Today is my special day, right?” Liam asked with stinky morning breath, as I snuggled next to him.

“Yes, baby, but we gotta brush those teeth first,” I said while waving my hand dramatically pretending to waft the smell away. Liam started to tackle me to share more of his stinky breath until we both broke out in giggles.

I wake up every morning and crawl into his twin bed for cuddles. He plays with my hair like he has since he was a baby. He would grab handfuls of knotty brown locks while feeding and then fall asleep in my arms, his tiny hands still clutching strands of my hair. As he grew, he would twirl my hair around his chubby little fingers while looking up into my eyes like I was the most beautiful thing he’d ever seen.

Now in the mornings, he sleepily asks about the plans for the day with those inquisitive liquid brown eyes that warm my soul. He squeezes my neck for “snugs” and kisses me on both cheeks and my forehead. (he’s done that for years to Collin and me) It’s one of the most important parts of my day, and it’s only like seven minutes.

My older kids aren’t up for much cuddling these days, but I wake them with annoying sing song voice and send the dogs in for morning face licks.  

And, it was a special day.

Today was trial assessment day, and I was feeling sick to my stomach with nerves. What if Liam couldn’t get up off the ground in under 10 seconds? What if he couldn’t swallow a pill after our week of practice? What next if this trial didn’t work for us? What if he got in and ended up on a placebo for a year? Would that harm him to delay treatment? If you’ve done any reading about clinical trials, the criteria is very strict and they are very competitive to get those few available slots. Parents are willing to risk putting their kids through all of the testing, all of the medication required not knowing if they are on a placebo drug. That’s how desperate we are for miracle drug. For me, it’s the hope we will roll over to the medicine after the trial year if all goes as planned. But that’s a risk, a possible year with no intervention.

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We did make that lunch with Grandpa.

My brain was firing on all cylinders, but all Liam could think about was getting through the tests so he could go to Five Below to spend money and so he could have lunch with grandpa. I was just talking in circles to my ever-patient parent partner and husband, Collin, and he nodded along saying a repetitive cycle of positive words, as he had for seven straight days. He wasn’t annoyed, though he had every right to be.

Dad and Collin flanked me, providing me the balance I needed if I fell to either side, as we walked in through the doors. And, Liam, of course was as joyful as ever, planning how he’d spend the $100 he would get for trying his very best and being a good listener. I’m sure a few parents just threw their hands in the air thinking I bribed my son. This is new parenting territory for us and things we are asking of him you don’t ask of 6-year-old kids. I’m just throwing all those damn parenting books out the window and doing my best to navigate these new, rough waters.

Registering didn’t help my nerves.

I expected smiles and rainbows from everyone at the children’s hospital, at least when we were greeted. BUT, the self-kiosk wouldn’t work for us because we were there for a trial. So we went to the registration desk. The person at the desk didn’t know anything about our trial after looking up our information. So, let’s follow that – we can’t self-check in at the kiosk because of the trial yet the person at the registration desk mere steps away from that very kiosk doesn’t know anything about our being in a trial. She said we can’t go up until we pay $300 for today’s visit. We reminded her, we are in a clinical trial, that’s why we had to come to the desk, and they pay for everything. Person would not budge and made us pay, even though we knew they would have to reimburse us, she refused to let us go up without paying. And, we paid. Just imagine if we didn’t have good insurance or the ability to pay at that point in time. I get it, they are new to trials here, but that means you take a minute, make a few calls and figure it out with us. Not just shame us for not paying until we do. This person and these processes serve a critical role in access to life-saving healthcare for kids, and I have to say the process is broken.

Liam while Collin was dealing with the drama. See how much he cared about that! Such a happy boy, my Liam.

We finally made it to the neurology clinic.

I thought eventually walking into that colorful, warm, inviting space I might feel better about it. But, to be honest, I hate it there. I hate we must be in this space and sometimes the happy pictures of kids running and playing make me want to break something. I hate that some committee sat and planned this space, thinking of what might soothe me and Liam in this the worst time in our lives. I hate the smell. I hate the sad eyes of people in that space, the air is filled with uncertainty and fear. Those emotions hit me hard, like I’m feeling everyone’s pain. I hate that they know me here, in a place I’d rather not be known. Maybe that doesn’t make sense, but there are days I just want to be normal again, have that old life back. But that’s gone now and we have to move on with our new life and that means in this space, where Rainbow Brite threw up.

But, Liam is barely impacted. He’s ready to show everyone that he can swallow a pill and get off the ground in under 10 seconds. Plus, there are fun games for kids to play on this big electronic monitor. He’s getting pretty good at them too. He reminds me this isn’t about me, but about him, and when he’s joyful I have to try to find it too.

He was ready.

We went through a mountain of paper work, like you would for a home loan, but this was about my baby taking an experimental drug. Our research coordinator is absolutely amazing. She immediately expressed horror about our being charged at the desk and she got us a refund within like 24 hours. The reason we are sticking it out at this hospital is for the study and because of her organization, dedication, kindness and hope for the future.

And, Liam swallowed a pill like a champ. He had to swallow a decently big pill (like a gel-sized Ibuprofen) so he now only will take 10 pills a day. If he couldn’t do the bigger pill, he would take 26 pills throughout the day, roughly the size of a tic tac. Can you imagine being six taking nearly 10 pills three times a day?

I realize this blog is getting long.

But, we are almost there. The PT person who wasn’t my favorite caregiver the last time, seemed to have a bit of bounce in her step and her cold gray eyes were lighter. She had fun blonde curls in her hair and something in me felt like she was going to fight for my baby. But, he didn’t need that fight – he had the fight inside with or without her. I had to sit in the hall with Dad and Collin, but he kicked ass. Forty-five minutes later, he was out of the room, and he succeeded. I cried. I held him.

“Do I get 100 dollars now momma?” he said, his toothless grin melting my heart.

My hair could use a good wash but I was pretty restless the night before, up with worry.

“Baby, you get 100 dollars,” I said, wrapping my arms around him and holding him. I didn’t know what to feel. Happy, sad, encouraged, fearful we were making a mistake. So, I just felt his energy flow into my body, the peace, the love, the joy, the love of life he brings every day just warmed me.

They made him a robot, with those crazy fun EKG stickers, and he gave blood again without shedding a tear. “Why is everyone crying momma?” he asked, holding a sucker and a handful of stickers. He had a brightly colored band aid on his arm where he had given blood. (I’m not great with needles so Dad went back with him since Collin had to get to work)

He went home with a little heart sticker thing that would monitor him for 48 hours. He was Iron Man.

And, a few days later, we got confirmation we were in the trial.

For those of you interested, we are in the Phase III Edasalonexent trial that’s through Catabasis. I won’t go into all the details of the drug. Check here if you want more info

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