Leukemia Journey Update

Even a year later, it still seems surreal to say “Leukemia Journey Update.” For years, it was always a “Heart Journey Update.” Well, almost exactly a year ago, a new chapter of our lives was added. A journey we could’ve never imagined happening, but a journey that once again, God has proven to us that He is faithful.

On my Facebook memories, I see pictures of me at U of M, with Mazy all masked up, snuggled by my side in a hospital bed. Those days seem so long ago, unimaginable at times, and yet they seem like they were yesterday. The tears. The emotions. What that journey did to our family. Being hospitalized for 3 weeks (which actually was super fast), not knowing when I would come home, and wondering if I would ever come out on the other side of it. With heart failure.

My heart had so far to go, especially since I was there for an ablation, but the mission was aborted quickly when my blood levels showed that something was up, which ended up being leukemia. But I am here to tell you, that even though nothing was done to my heart that day, I am feeling good heart-wise.

And I feel good cancer-wise too.

We are in the in-between right now. I had an appointment this past Monday in Ann Arbor, to discuss treatment plans and to have numerous blood tests done. They sucked out 14 vials of blood, which I’ll admit, made me feel pretty crummy. I am not an anxious person, but that day, was about all I could take. We met with one of my oncologists and learned that so far, leukemia hasn’t taken over my blood counts quite yet. Some levels are a little lower, but not completely unexpected. My levels (white blood cells, hemoglobin, and platelets) have had a hard time regulating in general, so it didn’t necessarily come as a surprise. The true test will come when the molecular test comes back. In July, it showed a significant jump, which pointed to the leukemia coming back. Which led us to start discussing treatment options.

At this point, I have 2 options. Either have a bone marrow transplant, or be on a chemo pill/IV treatment the rest of my life. I don’t like either of those options. And both, make me feel unsettled. I just never imagined it coming to this, especially since I came out of the first round in best-case-scenario as they said. My oncologists are just as surprised as we are.

On Monday, after meeting with my oncologist, Dan and I met with the bone marrow transplant team. That meeting made me sick to my stomach. It was far more information than we anticipated getting, but we also don’t know if I even qualify. It was an incredible amount of information to digest because of my heart failure, which is making this idea complicated. We walked away feeling defeated and wondering, God, what is your plan? I don’t want to go into too much detail yet about a BMT because we don’t know if I qualify, and we also haven’t told Mazy about the possibility, due to the nature of what it could entail. We don’t want to her to worry for no reason, as this sweet girl has been through SO MUCH.

What it comes down to, is just praying for that miracle. That the leukemia doesn’t come back and that God would keep those abnormal cells at bay, and even wipe them out of my body. My oncologists are still planning for it to come back, and are taking the necessary steps needed, so that when it does come back, we are ready. I was completely overwhelmed after those meetings. I feel like God has so much more in store for this all, and I can’t explain what it is. Maybe it’s to go through treatment again, or even for the rest of my life, but I also have faith that HE CAN heal. I feel my heart telling me to keep planning life. To keep going. Don’t give up. As much planning as we are doing, I’m just not certain in my heart that it’s going to come back. And maybe that’s just the peace God gives me for each day, until we know.

So here we go! We are hoping to hear back this week about that blood test, but I’m also a bit anxious, knowing it could be the beginning of treatment again. But I can say today, as much as I do think about it, I am at peace. We have the opportunity to go to Great Wolf Lodge with Shields of Hope, a cancer-supporting non-profit, this weekend. Mazy is beyond excited, and we hope it’s a weekend of celebration. But if God has a different idea, we know He will carry us through this as well.

Thank you for continuing to pray, and we just pray that our God, who is able, also knows best and has our best interest. Oh the cancer journey! Just like heart failure, it has so many twists and turns, all pointing us to our need for our Savior and Guide!