It was a good summer, plain and simple… though plain and simple our summer was not. We were following the progress of the adolescent trials, and from what we could glean, the effects of the drug were exciting and positive. It’s easy to become desperate in the quest to find something… anything, that would mitigate the effects of Rett on our baby girl.
I was not prepared, however, for the range of emotions that came with the decision to enter a drug trial. Our litmus test for anything we try on Blake is “do no harm”, and from what we could tell, the drug did not have significant side effects, so we felt comfortable enrolling her. The scariest part for me was having to watch her endure all the pokes and prods with each check-in visit at UAB. She wasn’t deciding if she was going to enter the study; I was deciding for her. That made my stomach turn.
“She can endure the pokes, prods and hours of hospital trips if she benefits from the drug,” I thought. “It will be worth the pain and hard work and loss of a leisurely summer… if she feels better. If we see her calm. If she has relief. Even if it’s just a glimpse of good things to come. Shoot, what if we hear her talk?”
The more cautious parts of my inner-committee chimed in, “What if she doesn’t get it? What if she gets the placebo? What if seven trips from Nashville to Birmingham are all for nothing? What if she has no symptom relief whatsoever? How will she feel? How will I feel knowing that other 5-year-olds are enjoying a day at the pool, while mine is sitting on parchment paper in a cold hospital room for 3 hours, yet again. And all for nothing.” But it wasn’t for nothing. Maybe for us, but not for the larger community of girls and families dealing with Rett now, and those yet to receive the diagnosis… born and unborn.
We deliberated, we prayed, we discussed and we decided to move forward. At the end of the day, we knew the purpose was not just for “us”. It was a greater good, and we needed to do our part, whether we saw benefit or not. If this drug was truly what it was touted to be, there had to be participants to be approved. We decided that even if we did not benefit in the short term, then hopefully we would in the long run…along with many other precious souls looking for relief from Rett’s devastating effects. But man-oh-man, we hoped to see a glimpse of what Blake could be on this promising drug. Even if just a glimmer, to help hold onto the promise of things to come, for our girl and for others. This was bigger than just us. Our minds were prepared for disappointment, but our hearts were set on hope.
The first trip… I packed everyone up in Nashville, and stopped half-way in Huntsville, AL where my parents live. My dad, AKA “Papa Coach”, made each and every trip to UAB with us. I would leave my 3-year-old, Andi Mac with mom, and Papa Coach, Blake and I would travel to Birmingham for each visit. We would stop at Jim N’ Nicks on the way down for dinner, before arriving at the hotel for an early bedtime. Blake loves barbecue, and she loves her Papa Coach, so she really enjoyed this part. We stayed at the Embassy Suites (mainly for the amazing breakfast, which Blake thoroughly enjoyed); fuel for early morning hospital visits. Dad and I decided that if we had to travel and spend so much time at a hospital, we were going to add fun things too.
For Blake, this revolved around good food, and Starbucks. Many Starbucks treats were earned for “bravery” demonstrated at each visit. Blake would fall asleep every time on the way home, worn out from the trip and from the tears – crocodile tears (every stinkin’ time they pulled those sticky monitors off her chest, back, arms and legs). She would eventually calm, and we would leave with our next cooler of mystery dose, strawberry flavored, “drug” bottles. We’d stop in Huntsville and trade Papa Coach for Andi Mac before making our way back to Nashville, where we’d continue to administer 30 mg of liquid each morning, taking copious notes of anything and everything we and others noted about Blake while taking “the drug”.
I remember leaving the hospital after the initial visit, pushing Blake in her stroller and looking down at the rainbow-striped cooler bag. The promise of hope for our summer, or disappointment if we saw nothing. Did we have it, or the placebo? Placebo defined by Webster, “NOUN: a harmless pill, medicine, or procedure prescribed more for the psychological benefit to the patient than for any physiological effect.” “Harmless”? Debatable. I knew if it was placebo, I would be crushed; crushed for me and crushed for her. That didn’t seem harmless. Ultimately though, it was a promise for something better, one day soon or one day later.
After the first dose, I knew we had something. She was calm. She was clear. She was “ON”. There was a sparkle in her eyes. It’s hard to explain, but her eyes always tell all. They were different, in a good way. She felt better. Over the coming weeks, there were fewer meltdowns, more smiles, less tension, more sleep. The renewing kind. “She just seems to feel good.” is what I wrote in our binder. She moves better, she eats better, she smiles better (nothing earth shattering, just better).
A few weeks in, we were in the car listening to “Hello.” Andi Mac and I were belting out the lyrics, but from Blake’s car seat, I heard, “AH, AH”, so I turned the music down and hit the camera on my phone. “That’s right” I said to Blake, “its AH- AH- AH-dele. Are you trying to say Adele?” Blake went on, “AH AH…AH-DEL”… tears. She said something. Never did I think the first post-Rett word I would hear would be “Adele”’, but WHO CARES! My baby just said “Adele”! It’s a moment I will never forget. A few other broken words and phrases came out along the way. Not full-fledged talking, but still, we were excited, and so was she. As the summer and study came to a close, I was sad. I was sad that she would come off, and sad that the glimmer was about to fade.
We completed our last round and cleared the study just two weeks before Blake started kindergarten. Nine days after her last dose, she woke up from her nap with tears rolling down her face. Ben swooped her up and took her outside (sunshine and fresh air have a way of helping her calm). After a few minutes, he came to tell me what Blake ‘said’. Later, I posted to our Join Team Blake FB page the same story:
“While outside, he began by asking her yes and no questions to try and figure out her tears. Blake has a really strong non-verbal yes and no if you give her some time to respond. Her “yes” is a strong look in your eyes, her “no” is a look down or away. Their conversation went like this…
Ben- “Blake are you mad at me?”
B- looked away
Ben- “are you mad at mama?”
B- looked away
Ben- “are you sad?”
B- big look at him for ‘yes’
All of the sudden it hit him as to why she might be upset…
Ben- “are you sad you’re off your medicine?”
B- BIG deliberate look at him
Ben- “did it make you feel better?”
B (her nose to his)- BIG HUGE LOOK
He came back in to tell me about it, asking her the same questions again, so I could see. Same questions, same answers through tear-filled eyes. But this time, she wasn’t the only one crying. Once she conveyed her feelings though, the tears stopped, and she calmed. We all feel better when we can vent, even if the problem doesn’t go away. You just want someone to understand, and we did, as much as we possibly could.
The hope is there, but for now, so is the heart-break. Waiting is hard, but so many of His promises surround “wait”. This is where we put our trust.
So goes life…mourning and dancing. We grieved the end of a great summer, but you better believe we also celebrated! Blake was a champ through every trip and test, so as soon as her appointment was over, we went straight to Starbucks for a no coffee, chocolate, chocolate chip Frappuccino! She smiled through every sip! Oh, how we love those #blakelysmiles!!“
Hope. That’s where we took off. That’s where we landed, with a whole lot of emotion in-between. So now, we wait some more. Blake is now a rising 3rd grader, and phase 3 of the next trial is still pending. It’s hard to wait, and for so long, especially knowing that this time, we may not be the lucky ones who receive the actual drug. But there’s still the promise of a better tomorrow. She only had it for a few weeks. What would she look like after a few months? These are just a few of the many questions we still have. But, “hello” HOPE, Blakely said, “Adele”!