Everything is Fine . . . Until It Isn't

Jan 28, 2021

"One problem is when there's no floor. 

Like you're walking around and you don't even care about where you're going to step because you've never had to worry about it before. 

And then out of the blue, on a Monday, or a Tuesday, or maybe a Wednesday, the most boring days of the week, when the sky is gray and everything is happening how it always happens, on one of those days, suddenly you take a step and the ground is gone . . ."

--from You May Already Be a Winner by Ann Dee Ellis

Aaron and Ian, two weeks ago

*I should preface this post by reassuring you that we are okay. Aaron is okay. But we have been thrown a bit of a curveball, which I'll explain below. 

Last month, Aaron had an appointment at Primary Children's Hospital. It was his final appointment with the bone marrow transplant team before they transferred him back over to the hematology department. They said they'd check up on him annually, but all of his labs looked good, and as far as they were concerned, he was free to go out and live his life.

When we sent out our Christmas cards, our little caption on the back said that one of the blessings of 2020 was "restored health" for Aaron. 

Just two weeks ago, we were on vacation visiting some dear friends. They asked about Aaron's health. We said, "He's never been better! He's back to his old self." "So there aren't any other worries or concerns?" they asked. "Not really. I mean, he'll still have appointments once or twice a year to make sure he hasn't developed any negative effects from the chemo or the transplant, but they don't anticipate anything. This whole process has been nothing short of miraculous."

But then on Wednesday evening last week, Aaron came into my bedroom and pointed out a patch of petechiae on his arm, and that old familiar pit in my stomach returned instantly. 

Petechiae are the tiny pin-prick bruises that form under the skin. They were one of the first symptoms we noticed eighteen months ago right before Aaron was diagnosed. I have done a lot of reading about petechiae, and there doesn't really seem to be a "normal" reason to have them show up. Because of that, they are synonymous with "insidious" and "foreboding" in my mind. As soon as I saw that patch on his arm, my thoughts went to a dark place, conjuring up the absolute worst scenario. 

Mike called the hospital. They didn't downplay our concern but rather said they'd like to see Aaron the next day. Mike also called our neighbor who happens to be a bone marrow doctor. He was reassuring to Mike on the phone, but then he came over and noticed some more petechiae on Aaron's ankles besides what was on his arm. He got very quiet, and Mike and I exchanged a desperate, panicked glance. He and Mike gave Aaron a blessing, but I couldn't let go of my extreme anxiety; it seemed to be holding every cell in my body in a tight vice.

The next morning, Mike took Aaron to the hospital where a CBC quickly confirmed that something was wrong. His platelets were at 21. You might remember from all of the platelets facts I've shared here before that a normal platelet range is anywhere from 150-450. Aaron's platelets were the first cells to come back up after his transplant, and they have stayed in the 215-275 range ever since. 

It was a shock to see his platelets so low again, although we couldn't exactly be surprised since the petechiae had been a pretty big clue. Thankfully, his other blood cells looked good--exactly as we had left them six weeks before. This was a huge relief to me because it ruled out some of the worst possibilities.

But the doctors were pretty puzzled about the drop in the platelets. They bounced around many ideas: a virus? an inner battle between Aaron and Maxwell's cells? an autoimmune disease? a weird reaction to a wart removal from two weeks before? They ordered a battery of tests and told us to hang tight and keep Aaron away from sharp objects and dangerous activities.

The weekend felt pretty normal. We told a few people about Aaron's health, but we mostly kept it on the back burner and focused on other things. But sometimes I would catch a glimpse of Aaron's legs, and each time they were covered in more petechiae, and that brought reality back hard and quick.

His respiratory and covid tests all came back negative, which was somewhat of a relief, but also not because it meant the problem was something else. Finally on Tuesday, two days ago, the nurse practitioner called and told us they suspected Aaron had developed antibodies against his platelets. It looked like he was killing off platelets as fast as he could make them. She scheduled another appointment for him on the following afternoon. 

We knew his platelets would probably still be low, but even we were surprised when they came back at 2. That number is as low as it sounds. In all of our time with low platelets before, they never got down to 2. It is at that level that they begin to worry about spontaneously bleeding internally. It is a scary place to be.

When his doctors saw that number, they pretty much admitted him to the hospital on the spot. He's back in  the same wing as before in a room across the hall from his old one. It's a little deja vu.


Normally if your platelets are at 2, they'll give you a platelet transfusion (or two) to get you back up to a safe level. But this is where it gets complicated. If Aaron's problem really is that his body is making antibodies against his platelets, then giving him more platelets will only add fuel to the fire. 

But they don't know for sure that this is what it happening. Basically, they've narrowed his problem down to one of two things.

It's either a) an autoimmune attack on his platelets, known as thrombocytopenia or ITP or b) graft failure, where his cells have decided not to play nicely with Maxwell's cells anymore. 

Because they don't have all of the information they need yet to diagnose graft failure, they are assuming it's ITP and treating him with IVIG (immunoglobulin): antibodies which help to block his immune system from attacking himself; and steroids: to suppress his cell production. They are going to keep him at the hospital until at least Saturday, at which point we should hopefully see his platelets shoot back up into normal range.

We have so many unanswered questions, such as:

  • What is actually going on in Aaron's body?
  • What will be the long-term treatment for this?
  • What will he have to do to make a full recovery?
  • What caused this to happen?
  • Is this related to aplastic anemia and his bone marrow transplant, or is he just lucky and got a second autoimmune disease?
As of right now, I don't have the answers to any of these questions, but I can tell you that we are praying very hard that this is ITP and not graft failure (which might require a second bone marrow transplant). We have a chimerism that we are still waiting for, and this will hopefully provide some more answers and help the team hone in on the right treatment plan. 

If I don't sound like I know what I'm talking about, that's about right. Mike has been going to Aaron's appointments with him, and he also spent the first twenty-four hours here in the hospital with him. He's been doing a great job of keeping me informed and up to date, but it's still second-hand information, and now you're getting it third-hand.

Things have been pretty chill though so far. Aaron settled right back into hospital life and is as easy-going as ever (we're all, including him, holding our breath a little because we've heard the steroids can make you quite irritable and mean, but we haven't seen any of that yet). There was apparently a little bit of excitement in the middle of the night when Aaron woke up because his side was all wet, and he realized it was blood. His IV had come out of his hand, and he has so few platelets that it took forever for it to clot. I think it was a bit heart-stopping for Mike and the nurse (and Aaron, too). 

So that's our current saga. The ground has fallen out from under us, so to speak. and it's going to take some time to regain our footing, but I have faith that we'll get there. Please keep Aaron in your prayers. Each one lifts us up and strengthens us so much. 

27 comments:

  1. Our hearts are with you and Aaron. Prayers for the Lord's greatest blessings of health and healing.

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  2. Amy, I am so sorry your cute Aaron and your family has gone thru so much! I am praying for all of you!

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  3. Oh, wow. Many thoughts and prayers for you and Aaron. Although I haven’t lived this exact scenario, I understand what it is to see a child suffer with health issues, juggle appointments, and deal with the uncertainty. It’s draining, and it’s especially hard to see our kids suffer. I especially hope you get an exact answer soon. We will pray for Aaron and wait to hear more.

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  4. Oh, wow. Many thoughts and prayers for you and Aaron. Although I haven’t lived this exact scenario, I understand what it is to see a child suffer with health issues, juggle appointments, and deal with the uncertainty. It’s draining, and it’s especially hard to see our kids suffer. I especially hope you get an exact answer soon. We will pray for Aaron and wait to hear more.

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  5. I feel so heavy for you, we are praying for Aaron and you all. Wish we could carry some of this or at least place some temporary flooring under you until you find it again! We love you guys!

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  6. Thanks for the update! We think about and pray for Aaron every chance we get. Claire’s been on a steroid this week and it’s kind of insane how much it changes her personality. She’s usually the sweetest, most easy-going little thing, but on Prednisone, she’s yelling at everyone and agitated until it gets out of her system. It will be interesting to see what happens with Aaron! He’ll probably have more self-control than Claire!

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  7. Thinking of all of you and praying for you. Praying that you'll find answers.

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  8. We feel so concerned and heavy with this news, and we will be praying for Aaron and all of you. We’re confident you’ll see the Lord’s hand in loving and miraculous ways. With love, Matt and Jennie Thatcher

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  9. Oh my word. We'll all be praying for him full power down here! He was just here as happy and healthy as can be!!

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  10. Even though you moved from our ward so long ago, I always admired you and have followed Aaron’s story. I felt my knees go weak when I read the latest. Please know that we will be praying!

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  11. Keeping Aaron and you in my thoughts and prayers ❤️

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  12. Oh, Amy, I'm so sad to hear this. I'll be praying for Aaron, and for you and the rest of your family.

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  13. Still giving platelets every time I can. Had problems last Saturday, The needle went in wrong, and wouldn't take the return after platelets were taken out. So I wait a couple of weeks until the bruising goes down.

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  14. Your family is in our thoughts and prayers.

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  15. I am so sorry to learn of this unexpected turn of events. Very grateful that you shared your story and that we have the opportunity to join with many other in prayers of faith for Aaron, your family, and his medical team. Our love and our thoughts and prayers are with you all.

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  16. So sorry to hear about this! What a tough road of anxiety, especially during an already tough time all around.

    I had to take corticosteroids for quite awhile to get my own autoimmune disease under control. They were lifesavers at first, but I will admit the side effects got so bad the longer I had to take them that I was eager to be taken off them. I now control my autoimmune disease exclusively through my diet, which has proven to be just as effective. I'm always hesitant to share my story with people just starting out because I know when people shared with me that diet had helped them with their AI diseases, I was super skeptical. I'm definitely not saying to ignore Aaron's doctor's advice, either! But something that immensely helped to speed my AI stuff into remission was to do an elimination diet, where I cut out gluten, dairy, corn, and soy (sugar, too) for 3 weeks. I slowly added one thing back in at a time and noted that gluten made my AI symptoms flare up, so now, I just eat gluten-free whenever I'm in a flare-up and it helps to manage the symptoms quickly before they get too bad. I've had friends with other autoimmune diseases try it out and have similar results.

    Anyway, I'll send some extra prayers your way for sure, but I just wanted to share my own experience in case it helps you at all <3

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  17. I will pray for Aaron and your family. Hope he will be fine soon. ๐Ÿ’›๐Ÿงก๐Ÿ’›

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  18. Sending many prayers your way for Aaron and all of the family. ๐Ÿ’›

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  19. So sorry to see this unwanted update. Thinking of you and everyone. Sending love. ❤️

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  20. I am so concerned for all of you. I will pray for Aaron, your family, and especially the doctors.

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  21. Praying for you all. Please keep us updated. <3

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  22. We will definitely be praying for Aaron and your family. We love and miss your family in our ward. Jana

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  23. Sending good thoughts and some prayers your way.

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  24. This is Vicki Mortensen. We have missed your family so much and now to have Aaron sick again is a double whammy. You are all in our thoughts and we only wish we could help you in anyway. Right now prayers seem the only way and we will again be praying at all times.

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  25. I’m so sorry Amy. What a traumatic ordeal for you all. And what a brave boy you have. No doubt you are all leaning on each other and finding where to step with each new day. Sending me love and support.

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  26. I love that boy and your family. Yes we will be praying.

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  27. Amy, I've been thinking about and praying for you and Aaron and your family since I read this. All my love, dear friend!

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