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Wednesday, July 3, 2019

Miracles with Chandler and Canyon

Last week, I received some news from some of Canyon’s blood work that gave me relief. He passed the last round of tests. His doctor is slowly checking off a list – testing for worst case scenario diseases and conditions first. I called Derek and we cried. How does Canyon keep defying the odds? We are every so thankful. However, the doctor called on Monday and told us the possibilities of what Canyon has are still “a mile long.” The “diagnostic journey” is ongoing. I’m playing it on both ends of the spectrum right now – fully aware I could wake up any morning and find Canyon in a seizure (or worse) and also living in denial that he’s perfectly fine. I naively asked the doctor, if there was any chance that Canyon’s symptoms could just be a rare case of epilepsy? “No,” he said. “Not with his symptoms.” Oh, did that hurt. I only wish it was epilepsy.

We’d have been waiting for weeks for the results from Canyon’s blood work.  The last week in May, they took 9 vials of his blood. As I scheduled the appointment, I didn’t know how I was going to do it? It’s so difficult watching my son go through this. He’s so innocent. He has no idea. I wondered how could I keep him calm? How much more poking and prying are they going to do until we finally know what’s happening?

In November 2018, we were told what Canyon has could be progressing, that his condition could be life-threatening, that he could have 1-2 years before his supposed white matter illness dissolves in his brain and we watch him slowly lose all his functions. We researched the condition and learned about the absolute horror of adrenoleukodystrophy. He would go blind, lose his hearing, lose his ability to talk, to walk, to eat, to swallow and then, he would die. This unspeakable torture was a mind game of grief for our family and everything seemed to point to this reality. 

Canyon had every symptom – the abnormal MRI with white matter lesions/abnormalities already in place, fatty acids in his blood (a sign that his dissolved white matter was already present in his blood), wandering eyes, his mouth had a droop, his speech a lisp, through a reflex test one doctor noticed a limp, he had seizures and then there was this. Adrenoleukodystrophy was most common in boys, starting around the age of 4. Canyon was 3 ½, just on the cusps. We just couldn’t catch a break and we lived in this terrifying reality for four months. There were mind games – every time he fell, every innocent mistake, every time he cried was a sign he was dying before my eyes. The mind is amazing – tell it something is true and it will look for evidence to support it.  

Canyon is the center of our world. My kids were 
singing his favorite song "The Wheels on the Bus."

The blood work testing for adrenoleukodytrophy was lost. This was discovered about a month later. This is such a rare test, conducted at a research university back east. It’s expensive. The blood has to be drawn at a certain time, stored a certain way, sent with a certain medical carrier for accuracy. We finally were able to redo the blood work. It would take 3 weeks, then six, then finally 8 weeks to get the results. During this time, we had to learn to let go of the fear so we could live in the joy of our Canyon.

This is where the story of two of my sons collides and the miracle starts.

My oldest son Chandler had been living in the Philippines for 5 months, committed to a two-year church service mission and started having stomach pain. He had no idea the facts regarding Canyon’s health, no idea we are praying, fasting and grieving. As a family, we’d intentionally withheld this information until we know the absolutes. Why worry Chandler when there was nothing he could do about it? In photos, I noticed Chandler’s weight-loss, gaunt face, bloated stomach and asked enough questions to finally understand what he was going through. A month later, Chandler was in Filipino hospital having an endoscopy and it was confirmed he had a bacteria called h.pylori. He started on antibiotics, but Chandler’s symptoms worsened. He could barely eat, had unbearable stomach pain, bloating, hernia, leaky gut, later we learned Celiac disease and amebas. The doctor and mission president confirmed Chandler would need to come home and no one was more devastated then Chandler. Oh, he loved serving in this far-away land, love the language, but deep down he knew he was very sick and needed proper medical care.

 Before Chandler left on his mission, Canyon had a seizure, but they had 
no idea what was going on. Canyon was in the ICU for 5 days and 
once he recovered, they sent us home.

In January, I received an email of Chandler’s upcoming medical release, but things were delayed. Another doctor’s appointment in the Philippines was scheduled and a 2-month round of antibiotics were recommended? His gall bladder was bad and might need to come out? Things were only getting worse and I was very worried. 

Chandler needed a departure visa, but the paperwork was delayed, lost, it was uncertain. How would this experience affect Chandler? Would he recover emotionally and physically? Why was everything taking so long?  Then, reality hit. When Chandler returned home we would have to sit him down, tell him about Canyon, that we might lose our little boy, that his seizures almost took his life, that he has all these horrible symptoms and on and on. This homecoming would be more of a nightmare. Would Chandler felt like we misguided him? That we were untrustworthy? He also had a new little sister and I knew he was beyond excited to meet her for the first time. The emotions were everywhere. I met with our Stake President and we talked. When I left, he said something that left a huge impression on me. 

“You may never know the blessing your family has received because of Chandler’s missionary service?” 

I pondered that on the way home. It seemed Chandler’s absence had left a gaping whole in our family. We’d been hit with so much opposition. My emergency c-section, Canyon’s illness and to make matters worse, the pipes in our home had been “accidentally cut” by a dishonest plumber, leaving the plumbing in our home, shall we say, inaccessible. Our lives were in chaos. I didn’t even have a place for Chandler to sleep.

Then, this happened. Was it a coincidence?

On March 4, 2018, after waiting 4 months for Canyon’s test results, we received a voice message from the doctor’s office. Despite the odds, it was confirmed that Canyon did not have adrenoleukodystrophy. Our family dropped to our knees in prayer and thanked God for this miracle. I spent the day floating. I held Canyon in my arms and never wanted to let him go. We know we’re not yet out of the woods, but this experience has changed the way I look at my children and our time on earth. Every day is a gift to be cherished.

Chandler with Canyon before he left on his mission.

The next day, March 5, I received an email from the Philippines mission home with Chandler’s departure flight information. He would fly from Manila, to Tokyo, to Seattle, to Phoenix! This schedule made me realize how far away he truly was. Finally! My emotions were all over the place, when I thought “What a strange coincidence.” I felt a flutter in my heart and a stillness seemed to say: “This is not a coincidence.” The timing of it all was miraculous. Chandler would need to know the blessings of his mission service, that we needed the miracle for Canyon first. Chandler returned home that Friday and despite traveling for nearly 24 hours, he stayed up with us talking into the night hours.

Ironically, we weren’t the only ones who’d kept secrets, but Chandler had kept a lot from us too. We hadn’t wanted to worry him and he hadn’t wanted to worry us. I find this very tender, that all alone in a far away land, he’d managed the pain and emotions of his own very scary illness.

In the Philippines, Chandler's friend John took this picture on 
their bus ride home from the hospital. He said Chandler was
in a lot of pain.

Last month, Canyon has had two mild seizures, both of which he was able to come out of on his own with an additional seizure medication we keep here at home for this type of situation. Although frightening to witness, we are so thankful that he responded. All his vitals were checked and since everything looked fine, we were able to monitor him at home. Whatever is going on, both his daily medication and the emergency medication is working. Although the possibilities of what Canyon has are still a mile long, his doctor feels what we find might be treatable. We have an upcoming MRI and spinal tap.

Although still in pain, Chandler’s health has great improved with medical help and nutrition. His celiac disease is gone, as is the h.pylori. We’re still waiting on those darn amebas, but he does not need hernia or gall bladder surgery. He has reunited with his love Sadie and they are engaged to be married August 2.

We know God is with us on this journey and His miracles are abundant.

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