At Least Our Freezer Light Works

This has been a very difficult week for our family.

Even though we could see some of this coming, we couldn’t possibly prepare our hearts and minds for what is now our reality.

Last week I had a bone marrow biopsy to see if my leukemia was officially back. Yesterday we learned the test results have shown that I have 4% myeloid blasts. Most have 1-2% in their bodies, so this isn’t a significant number. In fact, if under 5%, one is still considered in remission. But with mine being slightly higher and some of the genes are showing they are inversion 16, which is the sub-type of leukemia I had, I am considered now in a relapse. The diagnosis that we’ve been fervently praying against, but wondering about since June.

We were hoping that since it was a low number, that I wouldn’t have to go through chemo to kill off any cancer cells. Yesterday I received a call that I do have to go through chemo first. This maintenance chemo only prolongs the ability to have a bone marrow transplant; though, we are still waiting to hear about a donor match. So it is what it is. The idea of having even MORE chemo though, knowing what it does to my body, is difficult to swallow. If everything was lined up for the BMT, I would be able to bypass this, which makes it even harder to understand God’s perfect timing here on earth.

Then we received word today, that I am actually starting chemo on Monday (at least that’s the plan as of today) and I can no longer work, due to low blood counts. And most likely won’t be able to go back the rest of the school year. I am devastated. We knew I wouldn’t be able to work during the BMT process, but to have to stop now? I wasn’t prepared for this. I feel left to grieve the losses, the changes, and the disappointments. It is looking like I will be living the “quarantine life” for about the next 5 months, which feels like an eternity at the moment. It’s hard to imagine life on the other side of this, except with a soon to be bald head, trying to recover from some of the most intense chemo a human can be put on. It’s a lot.

I have shed about the same amount of tears the past 2 days, as I did when I was first diagnosed. Yet I am able to do it with my friends and family around me. Before, I was in a hospital room, at the mercy of the nurses and doctors in the middle of the night, when my emotions got the best of me. It all feels so heavy, overwhelming, and is happening in a way that we were not envisioning.

We are still in the process of getting set up for a bone marrow transplant, and while we do that, I will be going into the local cancer center for 5 days of IV chemo. A place I never imagined myself walking into ever again. During that time, I will also be taking a chemo pill for 21 days. At the end of November, I will have yet another bone marrow biopsy, to ensure all cancer cells are exterminated. Then I will go through 5-6 days of conditioning chemo (the nasty stuff). Then I will be infused with the donor’s stem cells, and Lord-willing, they will engraft quickly and I can go home within 3-4 weeks. And at this point, it’s looking like I’ll be in the hospital over Christmas, which is my favorite time of year. Just ask those who know me well :). I play the Christmas music in October and decorate the beginning of November. There is something about the truths of Christmas, that draw me closer to God, and to think about celebrating in a hospital, again, is hard to envision.

We are grateful that I am able to have the BMT about 30 minutes from our home and that I can come home after I am healthy enough to do so, instead of going to a VRBO, which would’ve been needed if I was having it done in Ann Arbor. Then it’s the long road of immunosuppressants, more quarantining, and just praying that this BMT works.

Like I mentioned earlier, the grief is heavy. But as the title of this post says, at least our freezer light works.

Back in August, our fridge/freezer stopped working while we had some friends from Minnesota visiting We had just learned that the cancer was most likely going to come back, but hadn’t quite yet. At that time, we thought that was difficult news. And it was, don’t get me wrong. And our fridge dying, felt like “one more thing”. But the timing couldn’t have been more perfect, as we had our live-in best friends helping us get through it all, and ensuring we had another in place of the old, within hours.

About 2 weeks ago, oddly our freezer light wasn’t working. Feel free to chuckle because in the grand scheme, it’s not a huge deal. We just didn’t get it because it was brand new! Well, we came home this weekend from a camping trip, opened the freezer, and lo and behold, the freezer light WORKED!

As difficult as this all has been, knowing what’s coming, and still processing what our life will look like, we jokingly tell each other, hey, at least our freezer light works! SOMETHING good had finally gone our way. It may be something small, but it has become our motto. At least our freezer light works.

We have been so humbled by the offers to help, support, and love us through this. We aren’t completely sure what this is all going to look like, how I will feel this next month, etc. I will be spending a LOT of time at home, but if it’s like it was the last time, I didn’t always feel great and I lived at the local hospital, getting platelet transfusions, which we anticipate happening again. I mean, don’t we all dream of having time at home? But under these circumstances, it is hard. When often all I would do is sit in my little corner of the couch, sleep, and try to find the energy to do something in that day. But we pray this time it is different! And we trust God can make it different.

If you think of it, please pray for our family, our extended families, and friends who are going through this with us. As you can about imagine, this is hard on all of us. Mazy is struggling mainly with me losing my hair and we both have shed tears over the pain she is experiencing because of this reality. She is looking for some way that I won’t, but with my type of cancer, enough research hasn’t been done to assume anything will for sure work. I can hear how brave she is trying to be, but the tears still fall, and mine right with hers. My job is to protect her, and yet what’s happening to me, is what hurts her heart. And neither of us can stop it. And so all we can do is hold each other and walk through it together. This is so much for an 8 year old to process, and yet we continue to try and find the joy in it. We are grateful that I am home during this month of treatment and that I don’t have to go to Ann Arbor. We are grateful I won’t lose my hair yet, not until the transplant, which gives us time to get cute hats and matching headbands. We are humbled by the love we are given here on earth and the unconditional love of our Father. We truly, never walk alone. Thank you.