Kelsey’s Kaleidoscope a new view for PAN – Hoping to find a cure.
“Mommy, WHY CAN’T YOU MAKE THIS STOP?”
From the age of 22, I have shared a professional life that required me to wear many hats: teacher, nurse, friend, psychologist, behaviorist, doctor, etc. I thought I was ready to become a mom and take on any challenge that came my way along all of the unknowns that parenthood would naturally bring.
Then, when my second child was nine months old, something changed. I was helpless, struck with a challenge that was out of my control. Since I was neither a nurse, doctor, or psychologist, I was in denial. I wanted to wake up one morning and put the past behind me. I wanted my daughter to walk, crawl, and pretend that nothing was happening inside of her tiny little body. I wanted to run, scream, cry, and holler. Instead, I insisted that her ongoing 102 fevers were not simply “teething” and that we needed to do something more.
We spent 16 days of December in 2011 testing, probing, and prodding at DuPont hospital and had no idea why. I felt that I had lost a Christmas holiday and felt immense guilt for my then three year old son, who I abandoned to stay with my still nursing daughter for over two weeks. I was also left with the memory of a Christmas Eve blood transfusion that was necessary due to all of the blood collected. Kelsey would not sit still and the IV took over an hour to place. It was like a bad dream that just kept going, and I relive that pain every Christmas Eve. I sat up with her to hold the arm in place so that the IV would finally work and the transfusion could occur. I wondered if Santa would find me as I sat awake until the wee hours of the morning helping the transfusion along.
While not Santa, our Christmas miracle seemed to arrive on December 31. We were discharged and that was progress. Yet, we walked out feeling the weight of a new journey we were on with absolutely no answers, a great deal of questions, and a great deal of pain.
Until June 10, 2014, we stayed on that path. I was a warrior, and I demanded answers. Kelsey was accepted into a clinic through the National Institute of Health and a new panel of world renowned doctors began to review Kelsey’s data, biopsies, and everything else in between. We continued to poke, prod, and test as those amazing doctors tried their best to make sense of what was happening inside my daughter’s tiny little body. She was beautiful, smart, and sad. I kept on searching even though I wanted it to all go away because I knew in my heart that something was wrong. Why? I would like awake (and still often do) asking myself why.
Then came June 10. After a six hour sedation and more testing, evidence of past stroke was found, the recurrent fever pattern was charted, and combined with her other muscle, tissue, and lymph node biopsies, Kelsey was given a rare diagnosis that sent me into almost an hour of tears. The doctors finally figured it out: polyarteritis nodosa (PAN) would be a lifelong battle for my daughter, my three year old daughter. Wow.
At first, they were going to treat her with a form of chemotherapy and maintenance drugs. After a few days of debate, the NIH decided that Enbrel injections would keep Kelsey healthy and happy. It was a small victory, left with the fact that home injections are administered by me every Wednesday night. If you’re ever near my house on those evenings, you’ll hear horrific screams and wails. You’ll hear my daughter yelling at the top of her lungs, “MOMMY, WHY?” and “WHY CAN’T YOU MAKE THIS STOP?” and even the occasional “I HATE THIS” or “OW OW OWWWWWWWIE OW”
I try to stay strong and assure that everything will be ok. But it’s really difficult to do through those screams of pain. Her medication is saving her life and protecting her body from attacking itself. Every week, I shudder, cry, and often times want to pretend that it won’t happen. But then, I take the medication out of the fridge, get my materials ready, and prepare myself for her anticipation and my own. The needle she thinks about every morning and worries about every night is saving her life. I both love it and loathe it for that reason.
Kelsey is closely monitored and her blood is checked frequently. However, I worry every single day that when she wakes up, she will not be able to walk, or she will cry with so much pain and I will not know what to do. This happened on Easter morning, 2015, and every day since, I feel like I can not breathe until she is awake, ready for the day, and smiling her beautiful smile. I monitor every mark, scratch, and scrape carefully and hope that we can stay ahead of the flares and anticipate her body before it can strike silently through the night.
The trouble for Kelsey is that she is wise beyond her years, looks like a vision of health and wellness with her blonde ringlets, and displays a joy for life and everyday things unlike any child I have ever seen. It is remarked on by her classmate’s parents and when we are out in public. In my mind I think, “If you only knew…” So I want them to know and have decided to begin a foundation in honor of Kelsey, Hopefully, we find a cure for her and help other families and children who are living in pain and unable to explain why. We know that we are lucky to have caught this silent pain as soon as we did without unrecoverable and fatal results and want to assure that other children are as fortunate.
Here is our website: http://newviewforpan.org