Mar 21, 2021

Picture and sign by Clark

This week was blessedly normal, or at least it felt that way after several weeks of unplanned hospital stays and after-hour phone calls (one of our nurse practitioners said we'd earned our "frequent caller" card). I'm not going to question this reprieve; I'm just going to call it what it is: a miracle. 

The week began with Aaron getting his central line. They gave him platelets right before the surgery, but one bag only brought him up to 38 (he needed to be at 50 or more before they'd do it). So they gave him another bag, which only bumped him up to 52. I have seen one bag get him up to the 80's or 90's, so to only get up to 52 after two bags was disappointing.

However, even though those platelets were few in number, I guess they were mighty and strong because they have lasted all week. When Aaron had his appointment on Thursday, they were down to 22, but they decided not to transfuse him since he wasn't in the single digits and/or bleeding (the two things that necessitate a transfusion). I was pretty sure we'd be back in the next day, but those platelets lasted all weekend. (As I'm writing this, his gums juuuuuust started bleeding, so it looks like he might not make it all the way to Monday, but still, six days on the same platelets is better than we've seen in weeks.)

Anyway, back to the central line. The surgery went well, but man, it left him in a grumpy, unpleasant mood. I'm sure it was a combination of the anesthesia wearing off, the reality of having a line again, and the discomfort and pain from the procedure. They kept him at the hospital until Tuesday morning (he received two units of blood on Monday night) and then sent him home.

From my perspective, having a central line has been very nice. It is quick to draw labs, easy to get transfusions, and the multitude of bruises on his arms and hands are slowly disappearing. I thought I was going to have some PTSD when I had to flush his line again, but honestly, it came right back, just like riding a bike, and it was almost like I never stopped.

The slight wrench in this week came on Thursday morning, and it actually didn't involve Aaron. Clark woke up with a sore throat and a cough. No, I thought, no, no, no, no! We didn't want to deal with Covid on top of everything else. A Covid diagnosis would complicate appointments and treatments and probably delay transplant, not to mention the possible health risks if Aaron got sick. Mike took Clark to get tested, and we all breathed a sigh of relief when it came back negative.

However, Covid or not, we still don't want Aaron (or the rest of us) to get sick. So Clark has been quarantined in his bedroom for the weekend, and the rest of us have been wearing masks around the house. Hopefully that will be enough, but we'll see.

Clark has done remarkably well with the isolation. If you know him in real life, you know that he is a very social person and really needs physical and social interaction with people. He is not the type of person who likes alone time but wants to be with people all day, all of the time. But somehow, he has settled into this quiet space and found things to do (thank goodness for a grandma who brought over a 3-in-1 Lego set and for brothers who let him take apart and rebuild old Lego sets). 

Mike and I were marveling at this newfound ability to be alone. We were seeing a different side of Clark than we'd ever seen before. On Friday night, I said to him, "Clark, I'm sorry you've been so lonely." He replied, "Mom, you're never really alone." "Why's that?" I asked. "Because Jesus is always with you," he said.

I thought it was a cute thing to say at the time, but the more I've thought about it, the more real it has become. Of course Jesus is the reason why Clark has been able to do something that is far beyond his natural ability! I felt the importance of this knowledge, and I went back to him the next day, and I said, "You were right, Clark. Jesus has been with you while you've been in your room. You are never alone because of Jesus." 

Even with Clark's illness, this weekend has still felt like a gift. I will never take normal days for granted. 


  1. I'm so glad you guys had a better week, and Clark is an inspiration! We pray for you and talk about you all often ❤

  2. Love that sweet little Clark! I’m so happy you’ve had a fairly uneventful week.

  3. Another sweet and inspiring post Amy. Thank you!

  4. What a gift, you deserve every one!

  5. Here's hoping Clark and Aaron feel better! Your boys seem to be growing into wonderful men.

    I'm giving blood next week, so I'll think of Aaron. I'm O-, so he probably won't be getting my blood, but I'll help keep the supplies flowing!

  6. I love your updates! We are always thinking of you guys!


Proudly designed by Mlekoshi playground