Always Good

Mar 14, 2021

Last week, it was low platelets that kept landing Aaron in the hospital.

This week, it was fevers.

When you have low platelets, they give you a transfusion and send you on your way; when it's a fever, they run a bunch of cultures, load you up with antibiotics, and won't let you go home.

Which means we've spent a lot of time in the hospital this week. 

Here's a brief recap:

Sunday night: Aaron complained of being freezing, even though he was already under his covers in bed. Mike took his temperature. It was 100.8. They said we could wait an hour and then take it again. It was still 100.8, so they admitted him.

Monday: He got platelets. His fever seemed to be gone. All of his tests came back negative.

Tuesday afternoon: They discharged him, and he came back home.

Wednesday late afternoon: His gums started bleeding. Mike ran him over to the hospital before the clinic closed so he could get platelets. The team was able to see him, which cancelled our need for a Thursday appointment.

Thursday: He was home all day and all night!

Friday: He woke up with a headache. I took his temperature before giving him Tylenol. It was 100.9. I didn't give him Tylenol, waited an hour, took it again, it was under 100. By this time, his headache was gone too. Several hours later, he wasn't feeling well again, so Mike took his temperature, and it was 101.6. The doctors don't mess around with anything above 101, so he was admitted again. It was back down in the afternoon, but spiked to 103.6 in the late evening.

Saturday: Hospital all day but no fevers or bleeding.

Today: Still in the hospital, but no fevers so far, and all tests came back negative.

Tomorrow: Going into surgery to have his central line placed.

It is really common for kids with low or no neutrophils to get what are called "neutropenic fevers." These are simply a result of a lack of neutrophils with no other underlying causes. However, kids with low neutrophils are also at a much higher risk for infections, which is why the doctors take fevers so seriously and rule out everything else before discharging the patient. 

Aaron has had an ANC (neutrophil count) of zero for the past several weeks. On Tuesday, they gave him a dose of neupogen, which is a drug that helps stimulate white blood cells. Unfortunately, it didn't do anything for Aaron, which was another confirmation of his complete bone marrow failure.  

Although we don't have a scheduled date for the transplant yet, they are going to place his central line tomorrow. He has been getting blood and platelets and antibiotics so frequently that his arms and hands are covered with IV holes. The last couple of IVs have taken the IV team a long time of searching with their little light to even find a semi-acceptable spot for a new one. He is simply out of places.

Despite it being obvious that he needs a central line, it is still kind of a mental blow. There is something about getting that central line placed that makes this feel even more real than the blood counts and transfusions. This feels irreversible, like we are setting things in motion and heading down a one-way track, increasing speed until . . . transplant. 

I kind of feel silly even admitting this since everything we've already been doing has been with the end result of transplant in mind. Maybe you have to be me to see where I'm coming from. This is just a big step, and while I know it will be so nice to have right now and will be absolutely essential in a couple of weeks, I am still feeling it hard. (Remember this post when his central line was removed? I really thought that was a final goodbye.)

Today is March 14th, Pi(e) Day. This is one of those random holidays that Mike has always gone all out on--probably because it combines his love of math and food. Several years ago, we started a tradition of inviting the entire neighborhood over to our house for pie. Mike would take a couple of days off of work and churn out dozens of pies to be heartily consumed in the spring sunshine. 

In spite of a pandemic and a serious illness cancelling our festivities for two years in a row, Mike still showed up at the hospital at 8:30 this morning with cherry pie and ice cream (because what's better than pie? Pie for breakfast, of course). When I got home after we traded places at the hospital, I found a chicken pot pie in the fridge waiting to be baked for dinner, and a chocolate mousse pie ready for dessert. We are managing to hold onto our traditions even when life is not exactly feeling normal. This might seem like a good year to let them go, but I think they're helping our kids feel grounded (and baking has always been a kind of therapy for Mike, so it's a win-win). 

This morning as I was driving home from the hospital, I passed the student health center on the corner of Foothill and Mario Cappecchi. When I was pregnant with Aaron, I was a receptionist there for a short time. Although I have passed that building literally hundreds of times in the last year and a half, for some reason today I had a vivid flashback to little 23-year-old me. I saw her pulling charts, answering phones, scheduling appointments--all with a tiny wriggling Aaron inside of her. I remembered her unbridled excitement over this long-awaited pregnancy. 

And now, thirteen years later, here I am driving the same road, but instead of turning in at the health center, I am continuing farther north to Primary Children's. Aaron is no longer a helpless baby but a full-fledged adolescent who it taller than me. 

As I sat at the stoplight, it was as if the past and present converged. 23-year-old me at the receptionist's desk looked across the road at 36-year-old me in a minivan, and somehow, it was all okay. I can't explain it. I didn't feel regret, or even longing, for my unabashed naïveté. We're going to be okay. We are okay. 

I love Christmas songs, and I have long wished that Easter had the same kind of music tradition as Christmas. Wouldn't it be great if we could tune the radio to Easter classics during the month leading up to the actual day? Last year, I decided I would take matters into my own hands and create my own Easter playlist filled with songs of devotion about the Savior and His glorious sacrifice and resurrection. I did the same thing this year, so now I have two really great collections to rotate through. In a few years, maybe I will have as many beloved Easter songs as Christmas. Maybe.

My music search landed me a gem that I have become obsessed with. It is called "Always Good" by Andrew Peterson. I've been listening to it over and over, and each time I do, I think, Yes, this is what I believe. This is what I feel. This has been my experience with this hard thing. 

My three favorite lines are not close to each other in the song, but they fit together remarkably well:

"Somehow this sorrow is shaping my heart like it should.

This heartache is moving me closer than joy ever could.

Will You help us to trust Your intentions for us are still good?"

I don't know why heartache is sometimes more reliable than joy at bringing me closer to Jesus, and I really wish that wasn't the case because I don't like hurting. But here's the truth: There are distinct blessings that come from hard things. Others can't see those blessings as readily from their vantage point on the outside; they can only see the tragedy. But the blessings are there just the same. In spite of this hard thing, I really do believe that Jesus is always good and that every good thing comes from Him. 

But please, can we have a break from the hospital this week?

3 comments:

  1. 11 year old you, 23 year old you, and 36 year old you were/are all kindness, innocence and hope. Wishing you many, many years of blessings, peace and joy. Aaron and all of you are in our prayers.

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  2. We love you. Our family prays for Aaron every night. May God grant you guys tender mercies this week.

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  3. Hoping for you and your family:
    the ability to catch a deep breath today
    a small kindness (though a big kindness would be even better ;)
    and the fresh eyes to see what others take for granted when you come out of the surreal experience of leaving a hospital you've called home for even a few days (why does is always seem so surreal?!)

    So many of your words have been parts of our story too (ANC, house bound, fierce love and resilience, struggling with a sense of who you once were). Warmth and sunshine to you today.

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