Let God Show His Hand

Aug 4, 2019


When your pediatrician calls you at 7:15 in the morning and the first words out of his mouth are, "Is your husband at home?" you know he is not calling just to tell you that your son's blood tests came back normal.

That phone call came on Wednesday this week, and it's been quite the whirlwind of questions and emotions and fears ever since.

Over these past few days as we've told family and a few friends what has been going on, I realized that I needed to record all of the information in one place. It's just so easy for misinformation to spread or things to be exaggerated (all with good intentions, of course), so here are the facts: how it happened, what we know, what we don't know, what we're hoping for. (Mike told me I should give a little summary paragraph here at the beginning, but I think I'd rather take you on this roller coaster ride with us.)

But first, I'm going to give a little bit of background before the pediatrician's phone call.

On Monday, Aaron celebrated his 11th birthday. We had just returned from a family vacation to Lake Tahoe, so it was fairly low-key as far as birthdays are concerned, but he received presents and ate birthday pie, so it was a good day.


The next day, Tuesday, I took him to his annual checkup with our pediatrician, Dr. V. During the course of the appointment, I pointed out several bruises on Aaron's arms and legs and mentioned that he had been getting a lot of those this summer. That's not necessarily abnormal for an active boy who is spending a lot of time playing outside, but the concerning part to me was that he never could identify a cause. There was no, "Oh yeah, I fell off my ripstick" or "I whacked my arm coming up the stairs." They just kind of seemed to be appearing. Dr. V. looked at the bruises and then pointed out that Aaron also had some tiny red spots under his skin (called petechiae), which neither of us had even noticed.

Then the doctor abruptly left the topic and continued the rest of the exam. I thought that was a little odd but just figured it wasn't something he was concerned about. But then, as he was finishing things up, he said, "I'd like to do a few blood tests just as a precaution. He's probably just an active 11-year-old boy, but I'd like to be sure. And I also think it's best if we don't do any vaccines today."

Maybe I should have picked up on his tone and mannerism a little more, but I honestly didn't give it much thought beyond telling Mike that it had happened.

So now we're back up to the phone call. My phone started ringing; I didn't recognize the number, so I decided not to answer it because I couldn't think of anyone except a telemarketer who would be calling so early in the morning. But I still checked the voice mail, and when I heard the doctor's voice, I have to admit that I started to feel sick. Mike had already left for work, and I wondered if I should have him come home before I called the doctor back. But a part of me just needed to know right then.

So I called him, and that's when he said, "Is your husband home?" And I knew it had to be very bad news. He quickly told me, "Aaron's blood tests came back, and they don't look particularly good. We have an idea of what it might be. It looks like leukemia. I'm so sorry."

As the news hit my heart, it shattered.

I hung up the phone and immediately called Mike (it took five tries before he picked up), and then all I could get out was, "You need to come home. Right now."

Dr. V. mentioned that he had received the lab report the night before around 11:30pm and had spoken with an oncologist then, but he decided it would be best to wait until morning before calling me. I went back to the night before in my head, and I knew exactly what I was doing at 11:30pm. Mike had been working late and had just texted to say he wouldn't be done for at least another hour, so I texted back that I was going to go to bed. I had this strange out-of-body moment where I pictured the doctor talking on the phone with the oncologist at the same time I was texting Mike good night. It was somewhat surreal.

I think one of the hardest moments from the past week happened right then, as I sat in my bedroom waiting for Mike to get home. I suddenly thought of Aaron, peacefully sleeping in the bedroom right below me, not having any inkling of how his life was about to change. The tears streamed down as I pictured his sweet, sleeping face. I dreaded the moment when he would wake up, and we would have to tell him.

As it happened, Mike was blunt and to the point: "Well, Aaron, your life is about to get exciting." To which I quickly added, "But not in a good way." He took it as he takes most things--quietly, with a smile (although an apprehensive one this time), no questions.

I have to tell you that as we entered the hospital, a sense of dread pressed in heavy on me. I had the thought, I am probably going to get to know this place really well, followed closely with, I don't want to know anything about it. And then, a thought that came mere seconds after the doctor's phone call and which has continued to come in the days since: Let God show His hand.

That thought put itself on repeat as we navigated the halls and went into the Cancer and Blood Clinic. Actually, it went something like this: I hate this place. Let God show His hand. I don't want Aaron to have to be here. Let God show His hand. I want to leave. Let God show His hand.

I can't speak for Aaron or Mike, but this was the roller coaster of emotions I was riding that day.

Aaron's initial exam was done by a resident who showed us his lab reports. I wish I had written down all of the numbers, but the only one I remember was his platelet count. They like to see it around 150,000. Aaron's was at 4,000. The resident, almost soothingly, said, "It's a little low." Aaron later pointed out that that number had also had an exclamation point after it.


When the attending physician came in, she said that after looking at the blood tests, they thought it was one of three things: acute lymphoblastic leukemia, acute myelogenous leukemia, or aplastic anemia. She wanted to run a few more blood tests, which she hoped would give a more conclusive diagnosis.

So they put in an IV (quite traumatic as it turned out; Aaron wanted to watch, but he started to hyperventilate, and I thought he was going to faint before they got all the blood they needed). Then they sent us away for a couple of hours while they waited for results. We went to grab some lunch. We were all quiet and somber, and my appetite was completely gone.

When we got back to the hospital, the doctor told us the blood tests pointed to leukemia but they would need to do a bone marrow biopsy to determine which type. They gave Aaron a platelet transfusion and did a chest x-ray, and then we went home for the night (one of the many times I felt so grateful for our close proximity to the hospital).

That first night, just before I attempted to go to sleep, I read this scripture in the book of Psalms: "The Lord is nigh unto them of a broken heart" (Psalms 34:18). My heart truly did feel broken, and I held those words close as I wept in the dark.

The next morning, we arrived at the hospital early. They did another blood draw, decided that Aaron needed more platelets, and then prepared for the bone marrow biopsy. It was a short procedure, but they put Aaron under general anesthesia to do it.


Once it was done, Aaron was admitted to Primary Children's hospital, and we waited for results. He got an echocardiogram in the meantime. They wanted him to have one to use as a baseline for the future.

The oncologist and the resident returned mid-afternoon to say that they had done a flow cytometry test on the bone marrow, but they weren't seeing the cell types they were expecting. So they still couldn't determine which type of leukemia Aaron probably had. Instead, they were going to have to look directly at the bone, and they wouldn't have that pathology report for another few hours.

Even with inconclusive results, they still laid out a plan for the next day: Aaron would begin fasting at midnight and then the next morning, he would have a central line put in (either a port or a broviac, depending on which type of leukemia it was). During the surgery, they would also do a lumbar tap to check for cancer in the spinal fluid. And then, after all of that, Aaron would get his first dose of chemo.

But the next day did not go according to plan at all.

Mike stayed with Aaron overnight, and when I got there the next morning (after having to pry Ian away from me because he was determined not to be left for the third day in a row), the resident was just leaving. She didn't have much information, but they still didn't have the clear diagnosis they wanted, so they were putting off the surgery for the day. It looked like it was going to be a long day of waiting, so Mike decided to go to work for a few hours (he works five minutes from the hospital--another blessing).

A few hours later, the oncologist and resident were back, and this time, they sat down and said, "We have some good news and some bad news. The good news is, Aaron does not have leukemia. The bad news is, he has aplastic anemia."

The news sent us reeling. At first, there was sweet relief. On the surface, something with "anemia" in the name sounded a lot less scary than cancer, and I couldn't help but latch onto the words, "We have to do some more tests, so we won't be able to start treatment right away, so Aaron can go home tonight." That sounded great to us.

But after the doctor dumped all of this new information on us and left, I did the thing you're never supposed to do: I looked up aplastic anemia on the internet. And then I got scared again.

Aplastic anemia is a condition where your body stops making blood cells. As Mike has explained it to people, "It's kind of like the opposite of leukemia. Instead of your body going crazy and making too many white blood cells, it just shuts down and stops making blood completely." And blood, as you know, is kind of important.

The doctor returned a few hours later and basically went over everything again a second time (Mike had actually been gone when they came in earlier), and I was a little better prepared to take in information that time.

Here's what she told us: they don't know what caused Aaron to develop this condition. There is a slight chance it could be hereditary (but she doesn't think so because Aaron does not have any of the  physical abnormalities that are usually a sign of this). More likely, it was brought on by a recent infection or may have even resulted from some sort of chemical exposure (although I have no idea what this would be).

They decided to run some more tests to look for a cause (they must be checking for a lot of things because they took a lot of blood). It will take 3-4 weeks for all of these to come back. There are really only two types of treatment for AA. Either Aaron needs a bone marrow transplant (which is their first choice for treatment) or he will have to do immunotherapy. They will only do the transplant if he has a perfectly matched sibling to be a donor. If none of our kids end up being a match, then they will put him on immunosuppressant drugs. Either way, it is going to be a lot of time at the hospital.

As for right now, we are on hold for a little bit while we wait for all of the results to come back. Before they discharged Aaron, they gave him a blood transfusion because his hemoglobin was low (normal levels are around 12; his was 7). Now he will begin weekly blood draws to check his levels, and if they are too low, he will get transfusions. We will also have all of our other kids tested to see if any of them are a bone marrow match for Aaron (we are praying so much that one of them is!).



So that's the news for right now. The doctor did give us a very thin slice of hope that Aaron might heal on his own. This occasionally happens (although in the research I've done, this usually only happens with moderate, not severe, cases). Luckily since he can't begin treatment for a month, we have time to see if his body starts making blood again.

Although this is rather devastating news, aplastic anemia has a very good overall prognosis. It definitely feels less jolting than leukemia. We can kind of ease into the diagnosis a bit since we can't start anything yet. Aaron gets to be home (although he has been banned from the tramp, his bike, his ripstick, and any other potentially hazardous activity until he has a normal platelet count again), and he will probably even get to start school.

People have asked how Aaron is doing, and the answer is, it's difficult to tell. He has always been a fairly quiet kid who doesn't show a ton of emotion and rarely complains. Over the last week, he had a ton of people constantly asking him, "Do you have any questions? How do you feel? Is there anything I can do for you?" and he rarely had any information to give them. Besides the IV incident, the only other time I saw him react was when a nurse was flushing his IV (that darn IV!). He suddenly put out his other hand and said, "That actually really hurts." Just like that, calm as could be, but I could tell it must have been really painful to have him ask for her to stop. Even the nurse was like, "I have never seen a kid react so calmly when they're in pain." But from then on, anytime they needed to flush his IV, he was quick to ask, "And can you please do it slowly?"

During his three days at the hospital, he felt the love and support of so many (and we were so impressed with all of the doctors, nurses, and staff--that hospital was definitely designed with kids in mind). He had quite the parade of visitors, and they all helped boost his spirits so much. He loved passing away an hour playing a game or talking. All of his brothers even came by for a visit, and I think they all felt slightly jealous with all of the attention he was receiving. It's easy to see the gifts and treats and fun instead of the boredom and pain and fear.


I think the most difficult part for me right now is I kind of feel like we're in this state of uncertainty: we really don't know what the next few weeks will hold as we gather more information, and I don't know how much to plan or if I just need to stay completely flexible. And I also feel a certain amount of distrust. I know a misdiagnosis is quite common (and after reading more about AA, it sounds like many people were originally diagnosed with leukemia), but it makes me a little bit wary of this diagnosis as well. Are they going to come back and tell me Aaron actually has something else?

But through it all, I just keep thinking, Let God show His hand. For me, that simply means giving God the opportunity to perform miracles and provide tender mercies. It means saying, "Okay, Heavenly Father, this is what we've got going on. What can You do with it?" Aaron doesn't have to bear this alone. We don't have to navigate this new situation alone. We have many hands to hold us up, but especially the hands of the One who created all things and knows the end from the beginning.


We would be so grateful if you would keep Aaron and our family in your prayers.

24 comments:

  1. Thank you for sharing this trial. We will keep you in our prayers.

    ReplyDelete
  2. You are just amazing and I love you so much. Well done, Mama, for being aware and noticing the bruises and well done, Doc, for following through. What a blessing. Aaron is a stalwart. We'll be praying for him and for all of you and for a bone marrow match! Thank you for explaining everything.

    ReplyDelete
  3. My heart goes out to you Amy and Mike. It’s so hard to watch your children go through pain and illnesses that you can’t take away. I keep thinking how amazing it is that you had that check up and the Dr didn’t dismiss your concerns so you could get the diagnosis a little quicker. Your family is in our prayers.

    ReplyDelete
  4. Thanks for giving us all the details here, Amy. We're hoping and praying for more good news and less bad news.

    ReplyDelete
  5. Amy, praying mightily for you all!! xxx

    ReplyDelete
  6. Thank you for sharing! What a scary time for your family. Thank you for sharing your prompting to let god show his hand. We will be praying for your family!

    ReplyDelete
  7. Thank you for sharing your faith with us. I'm so sorry your family is experiencing such a difficult trial right now, especially one with so many unknowns. So grateful that you have the support of so many, and that you know of the support of the One who is over all. I'll definitely send some extra prayers your way.

    ReplyDelete
  8. Aaron you are at the top of my prayer list, with your family close below. I love to look at the picture of you on my lap when you were just a little guy. Keep up smiling and we will all keep you in our prayers. Love you so much.

    ReplyDelete
  9. Oh, Amy! I wish I lived closer to give physical hugs and bring you food and do whatever I could for you (though I'm sure you have plenty of people helping out already). Through most of this post I was thinking about how I needed to put you in contact with my cousin out there who had a son go through leukemia and two failed bone marrow transplants before they finally got him in remission (I think he's about 14 now, but it was really touch and go there for a while). Knowing her story, I was just heartbroken for everything you were about to go through. I know nothing about AA (never even heard of it before), so no idea if your journey is going to be any easier, but we will absolutely keep you in our prayers. Thank you so much for sharing, please keep updates coming!

    ReplyDelete
    Replies
    1. I could definitely do with a hug, but I'll take a virtual one for now! I'm discovering that most people have never heard of AA (I certainly never had), and that's one of the reasons this has been hard. Everyone has stories about leukemia. No one has stories about AA. I'm sure I can find a Facebook group or something, and eventually I probably will, but for right now, it feels a little lonely.

      Delete
  10. Amy- thank you for taking the time to post all of those details. We're hiking around an island in Canada right now but my mind keeps drifting back to you in Utah. I needed to know so much more and your post answered every question I was dying to know. I cried a lot as I read to James all of your experiences and feelings. I am so thankful for your well check that caught the first signs of it and for your perspective and faith filled strength. We are cheering you on and want to help life be as normal and fun as possible while dealing with such heavy things. We love you and are praying for you all!

    ReplyDelete
  11. Thanks for taking the time to write this down. Aaron is one tough kid and he has two tough parents. He will be in our prayers constantly and we are close by and will help anytime you need it in any way we can. I think someday you will look back on this and see God's hand very clearly. It has taken time for me and Steven's cancer--and even the things I thought I saw have become neon flashing now. But even if you can't see it right away, I hope you will feel an abundance of love from God and all of us.

    ReplyDelete
  12. Thanks for sharing this -- you guys are definitely in my thoughts and prayers. I know we don't really know each other but I wish I could do something to help. Does Aaron have a Amazon wish list or something? I'd love to send him some books, especially with so much physical stuff off the table for a while.

    ReplyDelete
  13. Amy....what to say. Hes so darn blessed to have you. What a roller coaster! I cant imagine. Your faith is so inspiring. I'm sure it'll falter now and then but that's totally normal! I'll pray that your heart continues to find peace. And that those hands around you continue to buoy you up. Hugs from Georgia!

    ReplyDelete
  14. You are in my heart. I will pray for Aaron and all of you. I'm so sorry that you're going through this right now.

    ReplyDelete
  15. I can’t stop thinking about you and your family. I’m so sorry to hear this news. I’d love to be on a list to help watch your other kids or bring meals with all the doctors appointments coming up. I feel strengthened hearing your faith and will definitely keep Aaron and your family in my prayers. Love you Amy.
    -Jane

    ReplyDelete
  16. Oh wow, how scary. Life can just change drastically in an instant, can't it. For a while I thought that it sounded cheap to say "sending prayers;" that's what people say when they don't or won't take real action. But recently I've been thinking about the true power of faith and prayers, and so I'll be sending my real, faith-filled prayers for Aaron and your family.

    ReplyDelete
  17. Dear Amy,

    We love you and are praying for each of you, especially your little boy.

    With our love,

    Ben and Bethy

    ReplyDelete
  18. Oh, Amy, I'm so sorry that your family is going through this challenging time. I'll be sending love and good thoughts to you, and appreciate you taking time to share this update. Hugs!!

    ReplyDelete
  19. Amy, our whole family will definitely have your family, and especially Aaron in our thoughts and prayers. We pray for peace for all of you, for excellent medical care, for a transplant match, and for you to always feel the love and support of the Savior. Love, Claire Gilliland

    ReplyDelete
  20. Amy, thank you for taking the time to share this experience and the feelings in your heart. I am praying for God to indeed show His hand and for everything good to come Aaron's way. It's beyond difficult when our babies go through such trials. You guys are such faithful parents and this will truly be an "exciting" and transformative time for Aaron. Praying for him, for you all, and know that my heart is with you.

    ReplyDelete
  21. Let God show His hand. ❤️ This will be a learning experience, undoubtedly! We will pray for you.

    ReplyDelete
  22. Amy, I'm so sorry to hear of this news but thank you for sharing your experience. Many hugs to all of you, good thoughts, and hope for a match from one of his brothers.

    ReplyDelete
  23. A lot of prayers are being sent your way. Thanks for letting us know so we can add our faith. Your words are so inspiring as you face this.

    ReplyDelete

Proudly designed by Mlekoshi playground