Deja Vu

Feb 28, 2021


This past Tuesday night, Mike and I had just finished watching a show and were getting ready for bed when Aaron came into our room. "My gums are bleeding," he said. My heart sank. It was 10:20 pm. The other boys were already asleep. We were all tired. This is the kind of thing that would be much easier to face in the morning but unfortunately seems to favor the night.

Mike called the on-call nurse practitioner. She suggested a couple of things--ice and a medication that is usually used for nosebleeds--to see if we could get the bleeding to stop. 

When Aaron had labs drawn on Monday, his platelets were at 7, so the fact that his gums were bleeding was not exactly a surprise. When his counts first dropped a month ago, he was able to hang out in the single digits because he was really healthy. But now his mouth is full of problems: swollen and inflamed gums, sores on his tongue, a loose tooth, and a new back molar that chose this inconvenient time to come in. So now it doesn't take much to push his mouth over the edge. Unfortunately, it's the very things that keep his mouth healthy that also cause trauma--things as innocent as brushing his teeth, which he was doing (as gently as he could) on Tuesday night.

Since his platelets are so low, if he starts to bleed, it is very difficult to get him to stop. And that was the case on Tuesday. All of our tricks were unsuccessful. Aaron continued to slowly ooze blood. (Sorry if you're queazy about blood. This might not be a good story for you to read. I feel a bit nauseous myself in these moments.) The nurse practitioner consulted with the on-call doctor who thought we could wait until the next morning if we felt comfortable with it. By this point, it was after 11:00, and Aaron just wanted to go to bed. So we gave him a towel, which seemed sadly primitive, and prayed that it wouldn't get too bad.

It was a long night. Mike set several alarms to go check on Aaron and make sure the situation wasn't any worse. Sleep was fragmented and fitful. The next morning, Aaron's bed looked like a war zone, his mouth being the main offender and casualty.

I took him to the hospital where he got a unit of platelets. The bleeding finally stopped around 3:00 in the afternoon, approximately seventeen hours after it had started. That's a long time to be tasting and swallowing blood, and Aaron felt irritable and sick to his stomach. Platelets are one of those things you don't even think about until you don't have them, and then you realize all that they do for you every day.

Again and again, I get the feeling that I have lived this before. It doesn't just remind me of the past. It feels like the same thing. It is unnerving. 

For example, some of you might remember an almost identical scenario to this one in September 2019. We were at a family reunion. Aaron got bumped in the mouth, and his gums started to bleed. We spent an equally long and fretful night while we monitored his bleeding (the difference in that case was that we were actually out of cell phone reception--seriously, what were we thinking?!--so Mike and Aaron had to leave at 4:00am to drive out of the canyon and call the hospital). 

Everything reminds me of the first time: the fact that Aaron was first diagnosed just a week after we got home from Lake Tahoe; and he relapsed two days after a trip to Arizona; Aaron turned 11 just before his original diagnosis, and Maxwell will turn 11 tomorrow; I emailed Aaron's teachers then, and I'm emailing them again now; I printed some current family photos and chose another scriptural mantra in anticipation of another hospital stay; we are seeing the same nurses at the hospital, saying no to the same activities, praying the same prayers. Same, same, same. 

And I think a part of me worries, If everything is exactly the same, will the final outcome be exactly the same, too? A successful transplant? A strong graft? A year of good health? Only to come crashing back down to ground zero once again? 

You've heard the quote, "The definition of insanity is doing the same thing over and over and expecting different results." That's kind of what this feels like. We are trapped in the cycle of "Low counts, hospital, transfuse, hang tight, repeat."

And that "hang tight" period seems to be getting shorter and shorter with each cycle. On Friday night, two days after Aaron's platelets transfusion, he was back in our bedroom: the place where his new molar was coming in had started to bleed. This time it was triggered not by brushing his teeth or eating, but just moving his tongue around it. Not wanting a repeat of Tuesday night, we had him put pressure on the spot with cold ice. The bleeding slowed down, but as soon as the pressure was released, it picked back up where it left off. Mike decided to just take him in even though it was almost 11:00. They didn't get home until 2:00 am, but at least he didn't have to bleed for hours and hours. (To anyone who has ever donated platelets, make no mistake: you are a hero.)

It is not only pain and worry that feels strikingly familiar but also the love and generosity of our friends and family--you who are reading this post. Every text, phone call, smile, present, meal, treat, gift card, bouquet of flowers, visit, babysitting, and offer to help has come to us before. You bore us up the first time, and you are doing it again. 

This afternoon, Maxwell's teacher stopped by. She was loaded down with gifts: games and LEGO sets and hot wheels cars and a gift card signed by all six of the elementary school teachers who have taught our boys. I felt overwhelmed . . . by love and support, yes, but also, guilt. They already had to carry us once; it doesn't seem fair that they have to do it again. 

There's this illogical part of me that feels like we tricked everyone, like this is some elaborate scam invented to squeeze out every last drop of faith and kindness. Each time someone shows up on our doorstep with something, I get slapped with another dose of guilt. Somehow you all have also been lured into this version of Groundhog's Day, and I'm so sorry about it. 

I was having a really hard time a few nights ago (ironically, it was not one of the nights this week when Aaron was bleeding). I wrote a journal entry that started with, "I hate this so much" and was then followed by sentence after sentence of everything I hated. Yes, I know "hate" is a strong word, and yes, I used it about twenty times on a single page. It was not one of my more noble moments in all of this. Aaron came into my room and laid down on the bed next to me. I said, "I'm sorry I'm crying. I just feel so sad right now." He looked at me and said, "Me, too. This feels harder than last time."

I've pondered why that is, and I think a large part of it is due to the fact that we have done it all before. Although we know life is full of trials and challenges, it kind of feels like there should be some rule that you only have to do the same trial one time. 

But somehow we continue to face each day, and most of those days are not filled with hateful journal entries. I was chatting with someone at church today, and he asked how I was doing, and I said, "Good." And in that moment, I really did feel good. I was dressed up (including makeup!), I was playing some of my favorite hymns on the organ, and I was sitting on the pew with Max and Bradley. The good was overriding the bad.

The poet, Rupi Kaur, wrote: "What is stronger / Than the human heart / Which shatters over and over / And still lives."

I don't think I could count the number of times my heart has shattered in the last nineteen months, but each time it gets put back together, it seems to expand just a little more. And a repaired, living, vibrant heart is one kind of dĂŠjĂ  vu I can get behind. 

7 comments:

  1. Your strenght and resilience is amazing. Thinking of your family and praying for you.

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  2. You, Mike, and Aaron are so inspiring in the way you meet your trials. Thanks for sharing your humanity ... your faith ... and your courage 🙏❤️

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  3. You are doing so well—frustration and all. One thing you can lose is the guilt from people doing nice things. It is a joy and a small thing anyone can do to help. I love the pic with Mrs. Davis—she’s a gem as are all those lovely teachers. I am so impressed with you all and I know you’ll make it through.

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  4. You are amazing, Amy. So inspiring in your strength. I can't even imagine how difficult this is to go through once, never mind twice, and it is a testament to how good you and Mike are together, how well you have raised your family, that you can support and uplift each other and help each other through this. I know God has His own plans, but I feel that if anyone deserves to get through this with a happy outcome it is you. I keep you in my prayers and hope for good things for you and all your family. ❤️

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  5. There’s something so exceptionally difficult about having to go through the same hard thing repeatedly. It can so easily diminish our hope in the ability to truly overcome. But I know for sure that it doesn’t diminish God’s ability to love and support us through all of it, and thankfully often the outside supporters continue to show up as well. I feel so much love for you all and know you can do this. 😘

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  6. Thinking of you and your family at this challenging time.

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  7. Sending ❤️ and 🙏🏻 I’m so sorry this is so hard!
    Love, Holly Nelson

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