Our peanut allergy research journey. July 16th.
HALF EMPTY OR HALF FULL?
Here’s what I can tell you about my glass… it has been overflowing with struggle in the half empty/half full mentality.
For the first food challenge, our Warrior HAD TO react to less than the equivalent of one peanut (300mg). That wasn’t a tall order by any measurement. He had an anaphylactic reaction somewhere between 4 and 14mg. #halffull
Over the next month he was introduced to the study medicine. That’s when we were put in “the randomizer”. Ironically, at the age of six, his brother announced that he wanted to cure cancer. By eight years old, he had created a randomizer on Minecraft. I found it comical at the time. Joke’s on me… Because when the Warrior had his first injection, we became part of the control group or the experimental group. And for the next year and a half, we will not know which. Sorry, gotta call that one #halfempty.
The next half glass serving came in the form of a very delicate escalation. If you want to describe my anxiety about that one, try a 2 liter bottle of fizzy soda dropped on the pavement after sitting in a hot car. He had to tolerate 12mg. HAD TO! If he couldn’t tolerate that amount, we would not be enrolled into the trial. Just walk away. Where on the spectrum between 4 and 14 did he previously go into anaphylaxis? #halfempty #justpouritout
At 6mg his lip started swelling. My heart sank. I wanted to keep it a secret. I couldn’t find the strength to alert the nurse. I actually texted my husband who was sitting on the other side of the hospital bed. And I watched him lean forward, look at my son’s lip, look at me, and I watched his heart sink too. #halfempty. Very #halfempty
The protocol allowed for a small dose of antihistamine and we waited….
After about an hour of our eyes locked on his lips, there was no further reaction and we were able to proceed. With a final dose of peanut, the timer was set for two hours. Two hours exactly. At 2:22 pm there was no reaction, no anaphylaxis, time’s up, you’re in. We left the clinic with our daily dose of medicine… I felt like I was holding gold dust. And it was time to start. To REALLY start. No more tests, no more screenings, no more parameters to fall between… at 2:22 pm we officially began immunotherapy. #halffull
Except we didn’t. By bedtime he had a fever of 104.7 and an immediate “halt” from our research doctor. #halfempty
Fever isn’t a symptom of allergic reaction. It won’t affect the treatment. #halffull
The next night we rushed to the ER with a temp of 105.3. They ran every imaginable test… xray, ekg, bloodwork – I was alone with him in the trauma room for Heaven’s sake! I was scared, defeated, and all I could think was, “It’s over. I don’t know what’s going on, but I quit. We aren’t doing this.” #halfempty
But they ran every test… absolutely everything was ruled out. It was just a virus. No mysteries, no hidden health issues… nothing to flag him, nothing to prevent us from proceeding. #halffull
For the remainder of the week, I took temperatures and wrote notes. The worst part of each day was when the alarm sounded on the electronic research diary and I had to enter “did not take dose today”. My spirit tanked. I wanted to know WHY? What lesson in patience could possibly be left for me? What was I missing? What did I do wrong? Do I not know when to stop? Why would we come this far just to stop? #halfempty
My friend pointed out that the fever came AFTER the appointment… like immediately after… but AFTER. They checked his temperature that morning. If he had a fever, they would’ve stopped then. We made it through the absolute worst day of screenings BEFORE the fever! #halffull
The first dose had to be postponed for a week to give the virus time to pass. He couldn’t take antihistamines leading up to the last screening. My husband pointed out that he would have antihistamines in his system again. That was an added safety net for our first dose. #halffull
Two weeks have passed. I took a healthy warrior to the clinic today for his dose to be observed. I woke up this morning with the question, “I wonder what today’s obstacle will be?” I was actually quite numb when they brought the medicine in and gave it to him. My glass had hit the half empty mark too many times and I wasn’t falling for failure again. #halfempty
And he laid there, playing on his phone. No swelling. No sneeze. No itching. My “How are you feeling?” and “Are you doing ok?” questions pestered him. Because he was fine. He was perfectly fine. He ate peanut, the same exact gold dust peanut he will eat tomorrow and the next day and the next… and he was fine. So they packed up the gold dust and sent it home with us and hit the “START” button. I grabbed that electronic diary and entered “full dose taken today”. #halffull
At the end of the day, I realize the glass which is half full and half empty is constant. It’s always the same. The volume of the content is half of what the container can hold. When will I learn to trust the line… the constant?
“Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change.”
My God is my constant. He isn’t half present or half absent. It’s how I see Him, my perspective, that puts me in these tailspins and updrafts. He has known all along exactly what needed to happen and when. He knew how I’d react, how I’d feel, how I’d trust and doubt. He knew I’d question Him and praise Him. But my reactions, and feelings, and trust, and doubt, and praise… none of those things change Him. He is God. He is good. He is constant. And I will trust in Him.
…. My journey, my growth, my God
When we were approached seven months ago with the opportunity to participate in this clinical trial, I said, “Coleman will have a story to tell”. But I’m learning that this isn’t just Coleman’s story. Through Coleman’s testimony, I am growing. Is my journey half complete or half incomplete?
…. My journey, my growth, my God
… they’re constant.