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Wednesday, March 20, 2019

My Missionary Is Home

Several weeks into Chandler’s mission, I noticed his emails had many common denominators. He constantly wrote about how much he loved the people, how difficult it was to see the poverty, how different the culture/climate was and how much he loved sharing the good news of Jesus Christ. 

But there was one other thing he kept mentioning – how much his stomach hurt. Sure, he was eating strange food like pigs feet, fish head and mystery meats. 

Balut is a somewhat developed duck that is boiled while in it's egg and then eaten. 

He was also eating rice for every meal. I think we both assumed he was in transition, home sick and getting accustomed to the food and climate. 

From the start, Chandler had an amazing attitude. Despite some of the physical problems he was having, he was all in – serving, loving and experiencing all his mission had to offer.

I sent him two packages at Christmas full of all his favorite foods like protein bars, protein pancake mix, electrolyte vitamin C packets, cashew butter, whole-grain crackers, enzymes and more. Chandler was excited to start incorporating some other foods into his diet so his body could recover. 

June 2018 before he left on his mission.

When he received his package, he enthusiastically had his companion send me a photo of just how happy he was to have a little something from home. His smile beamed from ear to ear!

But, oh my goodness, who was that kid? That was Chandler? He looked entirely different. 

This is the night before he left. Those are the same pants he's wearing in the above picture!!

At least 20 pounds lighter, I could see how his once well-fitted pants were sagging on him, his shirt loose, even his leather bracelet around his wrist was hanging.

I showed Derek. I showed family members. I showed his girlfriend Sadie. They were all concerned when it hit me – he’s sick. He’s really sick. He keeps mentioning how much his stomach hurts. Could it be a parasite? That next week when we emailed, I suggested he tell his mission president. “You need to go see a doctor,” I insisted.

Within a week, Chandler was seen by a doctor and had all the symptoms of somebody with parasites or worse. He was put on antibiotics and within two weeks, would be seen by the doctor again.   Unfortunately, the medication did not alleviate the pain he was in, so he was sent to a hospital two hours away where they put a camera down his throat into his stomach. Chandler later shared how frightening this was. Although his Tagalog was getting better with each day, he couldn’t understand the doctors explaining what was wrong and the different medical procedures they wanted to do. His friend Jonathon traveled with Chandler and his companion to the hospital that day sent this photo to me of them traveling home on the bus. “Elder Lofgreen is in a lot of pain,” he said. 

I stared at that picture for a long time and had a hard time sleeping that night.

The lab results confirmed Chandler had a bacteria called H.pylori. It was attacking the lining of his gut and had already caused significant damage.

The next day, I contacted his mission president to see what we needed to do next. Chandler had been prescribed now two different antibiotics that would take weeks to complete.

Chandler started being more honest about his physical symptoms, how there were times he had to lay down because of the pain. No matter what he ate, the pain was still there. Even if he fasted, the pain persisted. I had to practically force this information out of him. He was walking many times 12 miles a day and was in constant pain from bloating and stomach cramps. Still, he was in great spirits. His normal positive attitude remained.

Chandler's weight loss was a concern.

Just months earlier before his mission.

While Chandler had been in the Philippines, Derek and I felt it important to keep Canyon’s medical testing and possible diagnosis of adrenoleukodystrophy under wraps until we had something confirmed (you can read about that here). 

Canyon was in the pediatric ICU July 2018,  just 2 weeks before Chandler left on his mission. 
Canyon had another seizure November 2018. Chandler had been in the Philippines for 4 months. This is when the neurologist started suspecting something more serious.

Why put Chandler through all that worry and fear if nothing had yet been official? I felt horrible keeping this from him, but I started to realize that Chandler had been keeping his own secrets about his health because he didn’t want us to worry about him.

Two weeks later, and Chandler’s symptoms had only worsened. Nausea, fatigue, weight-loss and all the time unbearable stomach pain, he told me “I don’t want to wake up because it hurts so bad.” I started to realize our boy might need to come home.

The Philippines is about 16 hours ahead of us. When Chandler emailed Sunday night Phoenix time at 8:00pm it was Monday afternoon at 1:00pm. So, many nights when I laid down to go to sleep, I envisioned him in some little town teaching some little family about the big giant love our Savior has for them. 

Chandler told me it was customary and respectful to remove your shoes before entering someone’s home. I thought of him barefoot on someone’s dirt or cement floor. I prayed with all my heart he would heal. I knew God could heal him.

Chandler told me one night his neighbor's house caught on fire, so he and his companion helped with buckets of water to put the fire out. I could just imagine my boy running through the streets of the Philippines! It was amazing to think of him on the other side of the world.

I talked with our stake president and let him know what was going on. He communicated with the mission president and per Chandler’s medical condition, it was decided he needed to come home. We were so thankful to have good counsel because this was a decision none of us wanted to make. When Chandler found out, there were plenty of tears. He didn’t want to come home. I didn’t want him to come home either. I’d finally let him go, I’d surrendered and told God, “Yes, you can have him for two years.” 
The night of Chandler's graduation. I was 5 months pregnant. I was so proud of him.

It was hard enough letting him go, but now that he was coming home when he didn’t want to, it just wasn’t fair. None of us wanted it on these terms.

Chandler arrived home March 9. 

He met his little sister Ruby for the first time.

He was hurting, not just from the H.pylori, but because he had to leave the land he loved so much. He wanted to be there serving his brothers and sisters. He loved the language and finally had the hang of it. He was all in, determined to finish the race with the other missionaries and as he said “Walk those dirt roads with the sun beating down on our backs,” but he was sick. 

Even with the pain he was in, I had to remind him he was sick. What can you do when you’re sick? You have to get the medical attention you need. Yes, he can still go back out once he recovers, but the recovery is lengthy and he won’t be returning to the Philippines, but most likely a mission stateside.

I find it absolutely no coincidence that Chandler arrived home the same week we found out our little Canyon did not have a degenerative white matter disease.  
Canyon with Ruby right after she was born.

 I feel with all my heart that Chandler’s selfless service brought mighty miracles to our family and others. 
Eden was beyond words to see her brother she adores.
Chandler said "My brothers are my best friends."
Kissing Ruby

That night Chandler returned home, our family had that talk about the path we’d been on with Canyon. We told him everything, all the tears, all the fears, all the uncertainties and all the miracles. We told him Canyon still does not have a diagnoses, but according to the neurologist, there is a greater chance what he has is not degenerative. 

Oh, did we cry. There were lots of questions. It was amazing to hear my other kid’s perspectives. They shared what they’d experienced and learned, how they’d prayed and fasted for him and Canyon and how much they loved our family.

I now have two sons I’m scheduling doctor’s appointments for.  Chandler should have a full recovery. Canyon is doing amazing and we press forward knowing we are incredibly blessed to have a loving father in heaving watching over us.

In the midst of all this, we had a plumber cause some pretty significant damage to our pipes (suspected tree root, but the plumber abandoned the job after cutting here a little and there a little). We’ve been without kitchen and laundry plumbing (two bathrooms still work), but all is well because we have an amazing contractor putting all the pieces back together again. So, when you see Chandler and his brothers run to hug for the first time in almost 8 months, that’s the plumbing trenches they are jumping over!!

Tuesday, March 5, 2019

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.