The Moment We’ve Been Waiting For, Almost

Yesterday there was a message on my phone from an unknown number. I listened to it and my eyes filled with tears. Derek was home (so grateful for that) and he walked into our bedroom. “You’ve got to listen to this,” I said.

The message was from our neurologist’s office. His nurse Maria (who has become such a dear friend) had left a message regarding Canyon’s lab results. These tests have come in two phases that have taken over 3 long heart-wrenching months to obtain. When Canyon was in the hospital in November 2018 after a life-threatening seizure, the doctor collected blood for a lysosomal enzyme panel. The test is sent out of state to Thomas Jefferson University. It tests for approximately 30 of some of the most horrible, terminal childhood illnesses one can imagine. I never knew such demons of health even existed. There wasn’t a single disease on that panel I’d ever even heard of and it was suspected our son Canyon had one of them. I was to have the results in 1-2 weeks. Fear, doubt, worry, anxiety became friends of mine and Derek’s. We waited through Thanksgiving and finally, I called the hospital. “Why hasn’t anyone called us about the lab results?” I asked. No one knew. No one knew who to direct me too. Maria from the neurologist’s office was the only one who seemed to care enough to do the leg work to figure out where the results were. You can imagine my shock when over a month of waiting, Maria informed us that test was lost on the same day it was taken. It was never sent out.

In December 2018 we had an appointment with our neurologist. My mom came with me and I’m so thankful she did because my tears ran warm and plentiful down my cheeks. At many points throughout the visit, I couldn’t gain my composure. My new baby Ruby slept in my arms the entire time. It was at this appointment we were told Canyon had many symptoms for an illness called adrenoleukodystropy. Again, I’d never even heard of such a disease, but it was brutal – truly a parent’s worse nightmare. 

Because of our son’s bizarre seizures, his MRI, blood work and other physical symptoms, it was suspected he was in the early stages. This cruelest disease, most common in boys, affects the child around the age of 4. Canyon is 3½ . The child will develop perfectly, when suddenly the parents notice a lazy eye (Canyon already had that), a slight limp, (one neurologist in the hospital suspected this) a slur in speech, (yes) perhaps a seizure (4 seizures) and they will take him to a doctor. The parents have no idea of course that their child will quickly decline because the myelin sheath around his brain’s white matter (basically the fatty acids) is dissolving, or dying. Their beautiful, vivacious, talented, expressive child, the same child that just moments ago had their whole life ahead of them, that child’s brain is dying. The entire process can take 2-5 years.  The parents will get to watch their child lose vision, lose hearing, stop walking, stop eating and worse, but he will still be the child they love and adore. He will still be a child they would be willing to die for, and most likely, they will be beg God, “Please take me, but not my child.”

The test for leukodystropy was done by taking a saliva sample. I was horrified that Canyon didn’t just have to beat the odds for one type of leukodystropy, but 300. Yes, he would be tested for 300 types of leukodystropy. There were days Derek and I felt like we were being crushed. Everything Canyon did was scrutinized. In August 2018 he’d had surgery for strabismus to correct his wandering eyes, but we began to notice his eyes were straying again. His speech? Was it worse? Why couldn’t I understand him sometimes? Running at the park, he falls. Why? What’s happening to him? I would watch him play for hours and just cry a river. Was he dying right before my eyes? How long did we have? He’s so precious. Why would God take him? It was the cruelest trick. I would stare at Canyon sleeping and feel the weight of the world on my shoulders. I would never stop staring at him. They could never take him out of my arms. I would die holding him. Derek and I held each other up, practically taking turns, “Ok, today is your day to fall apart and I’ll be the one to keep it together, but tomorrow I’ll be the one to lose it.”

All this happened over Christmas. With all the celebrations, the parties, the festivities, Derek and I were hollow, but I found comfort in Christmas music. I’ve never listened so closely to these hymns and carols. They seemed to speak to me. Redemption, Peace, The Savior of the World, Hope, Eternal Life, Joy - these words penetrated my heart, filtering out through more tears. My eyes were puffy. I cried at any moment. I would hold my new baby while I held Canyon and my arms were so full. I asked God to help me be strong. After my c-section, I had to be careful about lifting Canyon, but when he fell asleep in my arms and the house was quiet, and the soft lights of the Christmas tree glowed on his face, what could I do? I had to lift him. Each step was cautiously taken and to bend placing him into bed I had to be strategic, but I was blessed with the strength.  Please, don’t for a moment think I had to do this alone. Derek and I have been carried by hundreds, thousands of prayers, hugs, notes, meals and more.

It was at one moment in the cold nights of December when I realized I couldn’t live like this anymore. Despair is a horrible way to live. It was one night I awoke to Derek crying. The room was pitch black. The baby was sleeping in her crib, most likely to cry at any moment. I wasn’t quite awake yet, but I knew my reality. I knew Canyon was sick. Before I even opened my eyes, I joined Derek in that cry, and by the time I was fully awake, I realized we were both sobbing. Broken hearts, tired bodies, worn-out minds, trembling souls, we held each other in the dark. It was at this moment something inside of me said “You have a choice. Do you want to live like this?” I realized Derek and I were useless to Canyon, our other kids and each other if we let despair run our lives. We had to find peace.

That next morning, somehow, I was able to rise a bit above the fear. It took some mental concentration, lots of prayer, uplifting music, the love and support of friends and family, but if I focused on my blessings and expressed gratitude, I could hold myself together.  With intentional thought and practice, Derek and I started lifting each other out of it. Canyon was thriving. His coordination and speech were not just normal for his age, but we always felt Canyon was gifted. He expressed complex ideas, memorized songs and played like a normal three year-old. Was he going to be alright? Some days were better then others, but we held it together a bit more. This gift of gratitude eventually became a part of daily life and after 9 long weeks, we got the results about Canyon. Out of 300 tests, one gene tested positive for a type of leukodystropy, but he needed two genes (one from each parent) to have the full disease. They couldn’t get a full read on the other gene. They would need to run another test, as a matter of fact, they’d had it drawn in November, but that was the lysosomal enzyme panel lost in the hospital. It had come back to haunt us.

Canyon had another neurology appointment. The doctor concluded he most likely did not have a type of leukodystropy (we would have to wait for the other panel to know for certain), but there were too many things pointing to something degenerative. The doctor explained in great detail why he thought this was what was happening. Perhaps Canyon had something that would allow him to live a bit longer, but it still didn’t look good. The evidence suggested Canyon’s condition would continue to decline, but not as fast as leukodystropy. How long? What disease? The doctor didn’t know. The lysosomal enzyme panel tested for 30 more diseases. It was like winning (or losing) the lottery. Either way, something devastating is harming Canyon. I came home and told Derek what the doctor said. That evening during family scripture study, we heard this moaning sound and realized one of our other children was just bawling. It hit us all in different ways. We all rallied to his support. We let each one of our children ask questions and express their feelings. Canyon prayed that night and when he did it felt like he was literally communicating with God.

Three weeks ago, I took Canyon back into the hospital for the lysosomal enzyme panel. We were billed $3850.00. It felt like a kick in the gut. This would be a big financial hit for our family, but our doctor was working with the hospital. They lost the original test results. What had they done to redeem the situation? It didn’t seem fair. Canyon and I prayed before they took his blood and he did amazing. We were told it would take two weeks for the results. 

This takes me back to yesterday, Derek and I listening to the message from our dear nurse Maria. “The lysosomal enzyme panel came back normal. The doctor feels Canyon has a greater chance of not having something progressive. Things are looking much better for your son.”

We celebrated by doing something we are very good at, we cried. More tears, more hugs, more unconditional love, more prayers, more time with Canyon to let everything process. Could it be our little boy is going to be alright? He’s been on seizure medication since November and has been seizure-free since. But what about the other symptoms? Are they manageable with medication? We will have to wait and see, but for now, we will take this most important victory.

I have been very careful about sharing specifics on social media because our son Chandler is serving a mission in the Phillipines and if there was a chance he could find out about it, our family did not want him to carry any of this burden.