"Hope Ya Know, We Had a Hard Time"

Mar 28, 2021

Aaron, 2011 (I've always loved those dreamboat brown eyes)

Things started to go downhill almost immediately after I hit "publish" on last week's update. In fact, I kind of wondered if I had jinxed ourselves by sharing how good the week had been--Murphy's Law, and all that.

I had mentioned that Aaron's gums had begun to bleed last Sunday afternoon. We tried for several hours to get them to stop, but we were unsuccessful. Mike took him to the hospital in the late evening, and they got home just before midnight. 

In spite of the late night, I was feeling hopeful. This is great, I thought. Now he won't have to go into the crowded clinic tomorrow for his appointment, and we'll just be able to stay home for a few days.

I was so wrong.

Later the next morning, Aaron just couldn't seem to get going. He was curled up in a blanket on the couch, and it seemed like more than just teenage laziness. I took his temperature; he had a fever; back to the hospital he went. He came home for less than 24 hours on Thursday, but other than that, he has been at the hospital all of this week (including right now).

Among other things, this is what Aaron has been dealing with this week:

  • Intermittent fevers that come and go without warning
  • Another episode of blacking out in the bathroom (followed by two more instances the same day)
  • Plummeting blood pressure every time he stands up (hence, the fainting spells)
  • Elevated heart rate
  • Low hemoglobin, even after blood transfusions (this happened for three days in a row where he got blood and the next day, he was right back down in the 6's)
  • CT scan, chest x-ray, and EKG to try to determine a cause for the fevers and low blood pressure (they all came back normal)
  • A battery of labs to search for any antibodies, viruses, bacteria, or fungus that could be causing all of these problems (everything has come back negative so far)
  • A violent reaction to a blood transfusion (fever, chills, uncontrollable shaking, etc.)
These things have all been really frightening for us. It is hard to always feel like you're teetering right on the brink and one small push could tip you over into the abyss. 

As the week progressed and everything piled up, Mike and I began to feel desperate. Sometimes I feel like our doctors don't understand the gravity of the situation. I know this isn't true since they continue to hospitalize him and run every test they can think of. But the difference is they are dealing with a whole array of sick kids every day. To them, Aaron is just one more sick kid. They analyze his numbers and look at his test results and determine the next step. But to me, he's my son--the very essence of my being. 

They say, "It's okay. This is not a malignant disease. We have time." And I say, "This isn't malignant, but it is life threatening. Every day that passes means he could get an infection or start to bleed internally, both of which could be fatal." 

It might sound like I'm being melodramatic, but I think our doctors would agree with me that these are real possibilities. 

Which means that this week I became absolutely frantic to get this transplant started. It feels like the only way out at this point. Aaron doesn't have platelets so he's going to continue to bleed. He doesn't have red blood cells so he's going to continue to get lightheaded and dizzy. He doesn't have white blood cells so he's going to continue to have fevers. The only long-lasting way to fix these problems is through a transplant. 

And yet, we continue to hold off the transplant because of one (one!) genetic test. They want to make sure Maxwell does not have a genetic condition known as dyskeratosis congenita (which is basically inherited bone marrow failure). When Aaron was originally diagnosed with aplastic anemia, they ran all of the genetic tests on him, including for dyskeratosis congenita, but they never did them on Max. Since Max and Aaron were perfect matches, as well as siblings, it was highly unlikely that Max would have a genetic condition that Aaron did not. But because the first transplant failed, they had to consider this as a possibility for Max and rule it out before proceeding with him as a donor again. 

We have been waiting for this test result for weeks. At first, we were fine waiting because Aaron was fairly stable. But now things feel so volatile that we asked the doctors, "Can we just move forward with the transplant, even without knowing the results?" To which they responded, "Are you crazy? If Max has this genetic condition, we need to know about it!" To which I responded (in my head), "If I have two children who are genetically similar enough that they are perfect matches, and one of them has idiopathic bone marrow failure and the other has hereditary bone marrow failure, then I will probably have a mental breakdown." The chances seem unlikely, and yet, we've beaten the odds before, so I think they're right to wait. 

But I just needed to know when that test was going to get here. I didn't know how we could wait another few weeks. We asked our doctors if they could call the genetics lab and ask them to bump Max's test up the line (they were rather non-committal about this). Finally on Friday, Mike decided to call the lab himself. He found out what I'd suspected all along--that the actual processing of the blood was done by a machine and there was no way to speed it up. They told him that once it was being processed, it would take 10 to 21 days. We knew from tracking Max's labs that they had started processing it on March 19th. So we figured that the soonest it would be done was sometime next week. 

But then right after Mike got done talking to the lab, he looked up the timeline again and saw that Max's test had been moved from "lab processing" to "analysis and interpretation," and then yesterday, it moved one step further to "clinician review," which is the final step before "report available." So I am extremely hopeful that we will get the results very soon, maybe even tomorrow.

And if we do get the results and they're good results (please let them be good!!), then it's going to be full steam ahead. 

But in the meantime, things are looking up for Aaron. He is still in the hospital, but they gave him a dose of immunoglobulin yesterday, and today his hemoglobin is at 9, his heart rate and blood pressure are normal, and he hasn't had any fevers. He has felt good today--probably the best he's felt all week. He celebrated by putting together a LEGO replica of the White House.


I'm missing that boy though. Mike and I decided not to do any trading back and forth at the hospital this time because Clark's cold from last week spread to all of the other boys (a huge disappointment since I worked so hard to quarantine everyone and make them wear masks), and we didn't want to risk transmitting anything to the hospital. 


One of my friends reminded me of a talk that Elder Quentin L. Cook gave more than twelve years ago. He began the talk by recounting an experience he'd had when he got caught in a spring blizzard with two of his young children. After a night of being stranded, they eventually got towed to a gas station where Elder Cook was able to call his wife and let her know they were okay. He passed the phone to his little three-year-old, who said, "Hope ya know, we had a hard time."

I think if anyone were to ask me about this week, I'd respond with those same words: "Hope ya know, we had a hard time." We just feel beaten down. Even though I don't anticipate this challenge lasting forever, and I still have hope of a full and complete recovery for Aaron, we are in the trenches right now, and I honestly can't see the light (yet). 

It is more than just a physical exhaustion, at least for me. I am spiritually wiped out. Every day, practically every moment, has required me to exert more faith than I have. I am trying to replenish it as quickly as I am using it, but I am running on empty right now. There have been periods of violent weeping where I've lifted my voice to the heavens and yelled, "Hope ya know, I'm having a hard time!" 

Sometimes it feels like my faith literally cannot bear the weight of this trial. I am worried it will crumble and disintegrate with all of my questions that continually pummel it. 

But every time I think about going through this hard thing without my faith, it feels even more unbearable. So each day, I wake up, and I intentionally think the words, Today, I choose to have faith. It is a conscious decision. I choose to see anything good as evidence of the hand of God. I choose to believe that I am receiving heavenly help. I choose to look at this situation through an eternal lens. 

This is not some pleasant, childish game I'm playing where I'm looking at the world through rose-colored glasses. This is real work. It hurts. It leaves me feeling battered and drained. But every time I choose to arm myself with faith once again, I somehow rise triumphant. I wish it would last, but in the words of one of my friends, "The wrestle for my faith starts anew every morning." 

At this very moment, I'm feeling good. Mike just called and said, "I've never seen Aaron this perky in the hospital! He literally just asked me if I wanted to go for a walk around the pod! That's never happened!" That did my heart good. 

So we'll keep at it. And I hope next week I have some good news and some real plans to share with you.

Aaron (and Mike), 2009

5 comments:

  1. Today I choose to have faith! Thank you Amy, that in one sentence, is one of the most powerful lessons I’ve ever heard about faith. I wish I could carry some of the load for you, I pray you will continue to feel strengthened under this crushing burden. What beautiful pictures of your sweet boy, praying those genetic test results get to you soon!’

    ReplyDelete
  2. You are still in my prayers every night. I choose to have faith also. I think I need to write that where I see it everyday. Love you all.

    ReplyDelete
  3. Wow, my heart almost stopped when I saw this post, but it was really inspirational. I hope the test comes through, everything looks great, and Maxwell has a better time this round.

    ReplyDelete
  4. Sending my faith to you to help you shore up yours. Keeping you and Aaron and your family in my thoughts and prayers.

    ReplyDelete
  5. I am so inspired by your faith! My heart is breaking for you and your dear sons! We also continue to pray for Aaron every night! God Bless!

    ReplyDelete

Proudly designed by Mlekoshi playground