HERE WE ARE: BMT + 365

ONE YEAR POST BONE MARROW TRANSPLANT.

I have thought about this post several times, what I wanted to say and how I wanted to convey what this last year has entailed.

As I typed and re-typed several words, all I’m left with is humble gratitude.

There is nothing we did to deserve the grace God has given us in this journey. God has given us countless blessings throughout this journey and we can’t help but lift our hands to him in complete surrender to His perfect plan.

This has been probably one of the most difficult years of my life in many ways, and yet one of the most inspiring and humbling years too. It’s hard not to feel inspired when you’re told that on paper, you have a 40% chance of not making it. But for me, that statistic motivated me to fight even harder. I was diagnosed with Acute Myeloid Leukemia, sub-type Inversion 16, in September 2022. I went through 5 months of treatment and came out cancer free. Then I relapsed a few months later, which led me to needing a bone marrow transplant – the only other option for a cure – otherwise it was chemo for the rest of my life, until my body no longer accepted it. How could we not be grateful for this option? How could we not fight with all we had?

It takes a good year to recover from a BMT and at first I thought eh, I’ll return back to normal far before then. But I’ll admit, I was wrong. It’s a journey. A LONG journey. The fatigue is real. The chemo/brain fog is so real. When you think about what your body has to do inside – to reproduce millions and millions of cells, to bring itself back to working order. And let me tell you, God has created our bodies to do INCREDIBLE things! God has created our bodies to heal and a bone marrow transplant is a direct representation of that.

When I was given busulfan, the chemo used to kill off my cancer cells and bone marrow, if I didn’t receive the cells from a donor, my body could not recover and I would not make it. It was crucial that I received those donor cells and it just makes us all the more grateful for our donor!

Here’s what our journey has looked like over the past year…

On January 4, 2024, I was admitted to Butterworth’s Adult Bone Marrow Floor. I made it as cozy as I could by taping pictures Mazy made on the wall, setting up my books, setting up a puzzle, and pictures people gave me. I brought my own pillow, blanket, and anything that would make it feel like home for the next 3-4 weeks.

For my birthday that year, I just wanted money so that I could buy all Christian t-shirts to wear during my hospital stay, as a way to witness and share my faith.

Mazy made me some decorations for my IV pole that I was tied to most days while in the hospital. She also made me a bead counter so that I could count my laps each around the BMT floor! 20 laps = 2 miles. That was my goal every day. There were a few days I just couldn’t do it, but I knew the more I moved, the more I could get those cells moving in my body. Movement was motivating and movement meant healing in my head.

One thing you may not know is that I LOVE snow. I can’t say I “love” driving in it, but any snow storm, I am like a little kid! And wouldn’t you know, a massive snow storm came while I was in the hospital – the only real snow storm we had all winter! And wouldn’t you know, it happened when my donor’s cells were being shipped over! I vaguely remember them saying that there was some concern if they would get to me on time, but they did!

This is the beautiful picture my niece made me! I still have it in our bedroom to this day. When someone receives a bone marrow transplant, they call it your “new birthday” because it’s a chance at new life again. Nurses said that people celebrate transplant day like they do a birthday, so Dan brought in cupcakes to celebrate! My parents were able to come and witness the transplant and celebrate with us. Unfortunately Mazy was not allowed to come on the floor at all, during the whole process, so it was hard to not celebrate with her, but she was even more motivation to get out of there as quickly as I could.

Receiving the stem cells – it looked like tomato soup! I have one more year until I can meet my donor! We do write letters back and forth and I am so grateful for that. She calls me her “genetic twin”! Lord-willing I can meet her someday! Oh I can’t wait to someday share that story…

If you looked closely in person, you could literally see millions of individual cells flowing through the line. The process of the cells going into my body through my pic line, only took about 15-20 minutes! Completely painless, but complete and utter joy. It was the most surreal experience.

When I was in the hospital for about 2 weeks, I started to lose my hair. Some shave their head prior to, but I decided to wait. One morning when I brushed my hair, a lot came out and I decided that day was the day. I was so worried about who would do it, but the nurses said the techs are willing and I thought YES! I didn’t want to put that on Dan. No tears were shed, but almost relief that it was just another part of the process done. I look at this picture and yes I have a smile on my face, but boy was I worn out. It was a long haul and that chemo was just plain ole NASTY. Note the redness of my skin…that was just the beginning!

I was able to leave the hospital in 20 days, which honestly was a very quick turnaround in the grand scheme of things. The mouth sores seemed never ending and my morphine pump seemed to only just dull the pain, the fatigue hit hard, the brain fog unmatched, and what chemo does to your innards, is hard to explain in words, but the day FINALLY CAME! I’ll never forget picking up Mazy at school after returning home!

I couldn’t be more grateful for the BMT nurses and doctors! From the my nurse coordinator, PA, doctor, nurses, techs, just EVERYONE! The program in GR is truly remarkable and I’m so grateful for their care and support through this, ensuring every part of the journey would be successful.

I made it to day 50 post transplant! At the time it felt like such a huge milestone, as we looked forward to day 100 – we were halfway! Life was filled with so many doctor’s appointments (3x/week, sometimes more), constant monitoring, resting, naps, meds, and trying to stay healthy. I was basically a hermit and couldn’t do much of anything, but we created a new normal!

Every 6 weeks I had a cancer test and each time it came back at ZERO, especially in those first few months, was monumental. I walked with anxiety over these tests because it was through that specific cancer test that we learned I relapsed the year prior. The memories of relapsing were all to fresh and all too nerve-racking!

In mid-April, I FINALLY made it to DAY 100! So what’s the big deal about Day 100? When one reaches day 100, the risk for acute GVHD (graft versus host disease…when my cells fight my donor’s cells) decreases, full engraftment is expected, and risk for infection decreases. Though, I was still on my immunosuppressant, so honestly not much changed in my lifestyle, but reaching that milestone mentally was HUGE. It was definitely a day of celebration. I also had a bone marrow biopsy that proved that all was well and everything looked as it should!

We celebrated Day 100 by taking a bit of a risk…we went out to eat. It was the first time we had gone out, but we went really early to the restaurant and it was by God’s design, the waitress seated us in a corner, which means we were away from everyone else. Of course I still wore a mask moving around, but it felt so freeing to just be outside the walls of our home!

I also made the executive decision for myself to go to church. Our church was so gracious in putting a chair in the way back, along the wall of the sanctuary, away from everyone. I came late and left early for months, fully masked, to ensure I didn’t really “see people”, and it was such a gift to my spiritual heart. I was thankful for streaming when I didn’t feel up for going, especially for the first month or two, but being able to be there in person was so what my heart needed. Even if I didn’t get a chance to talk with anyone.

Getting my line out felt SO GOOD. I had a pic line in my chest for months, and so it felt so good to have it removed! I could FINALLY take a “real” shower!

At the end March/April (I believe), my hair finally started to come back! It was a slow process, but I started to get the fuzz! I lost several layers of skin off my head (and my whole body), so it was probably good that it didn’t start coming back before then.

One of the most personal gifts God gave me during this recovery time was a tremendously warm winter/spring. I remember in February, we hit 70 degrees!! I was dealing with severe neuropathy at the time, so walking was very difficult and painful, to the point where I had to sleep with cold and wet towels around my feet with a pan underneath so I didn’t get our bed wet. No nerve med, pain med, or cream was helping, until I started to use red light therapy. By mid-February, the pain started to subside, and I could FINALLY enjoy a walk outside in the beautiful sun! Even when I couldn’t take a walk though, I was able to just sit outside and let the sun hit my face. I spent day after day sitting outside for 15-20 minutes to soak it in (I couldn’t burn b/c I was at a high risk for skin cancer) but it was such a gift! A winter I’ll never forget and a winter that felt like such a gift from God.

This past summer we were able to enjoy time together as a FAMILY. MANY MANY hours were spent around the pool with family and friends! I still had to be careful about not getting sick, so anything outside was welcomed!

In July, Mazy and I went to Mackinaw City and Island, and had just the BEST time!

Every 6 weeks, I continued to have cancer tests, and each time I would get so nervous. But Mazy found this sword she made for me the first time I had cancer and it reminded me that the fight just continues and that GOD CAN HEAL. I have to believe that He can heal me from this. I have to believe and accept that HE CAN and HE IS. Each test that comes back negative, brings healing to my worrisome heart! It’s sometimes hard to move past the trauma of all that has happened – I still feel like I was recovering from the first round when we were hit with the second, but God has sustained us through it all. His goodness and faithfulness, I just can’t put into words.

After my transplant, we learned that my heart’s function declined again, so December brought on another ablation, but we are just grateful my heart made it through a bone marrow transplant. It’s really quite a miracle! Sometimes I think back to the number of times where medically speaking, I shouldn’t be here, but God continues to sustain my life. I do not deserve it. But God has this crazy plan, one that has us on our toes, but we know he holds the number of our days. And he continues to give us opportunities to share of his greatness and goodness through it all.

AND HERE WE ARE! ONE YEAR POST-TRANSPLANT. Mazy even made me a sign! This year, at times, I thought would never end. I know the journey isn’t over…the cancer still could come back. I am considered “cured” after 2 years. But the risk is significantly less. The risk for my body rejecting my donor’s cells (GVHD) is less. And we know with God, anything is possible. We have no clue what this coming year will bring, but what we do know is that he holds our tomorrows.

God allowed all he has for a reason and we couldn’t be more grateful for his tender, healing hand. I just pray that I can faithfully and diligently share the story he has given me, to encourage others in their faith journey and life journey. What God has allowed isn’t any more difficult than what you may be going through – it’s just different. Hardship is hardship. Pain is pain. Grief is grief. I often say, circumstances may be different, but the emotions are the same.

And right now, our emotions are filled with gratitude, humbleness, and awe of what HE has done.

TO GOD ALONE BE THE GLORY.

And this family RIGHT HERE. When someone goes through cancer, it’s not just the person who has the cancer, but the family too. Resilience is the word that defines my family. Dan and Mazy have gone through so much themselves, watching and helping me fight. It hasn’t been easy, but God has given us our daily bread. God has given Mazy the sight to see that cancer, even though it has been difficult, has been so good for us. She sees how it has challenged her and made her stronger. She has even expressed her thankfulness to God for it. That is Christ in her. Her faith has challenged mine!

And my man, Dan the man, continues to stand next to me. Guy we never saw any of this coming when we said “I do”! But here we are! Yes we are praying and asking God for a bit of a reprieve, but this past year has grown us quickly and diligently, as we seek to serve not ourselves, but each other. I am so grateful for this man! God’s blessings just continue to flow.

One more thing…

Mazy asks me to play this song “Never Get Used To This” by Forrest Frank often and it has since become our “anthem” on the way to and from school. Read the lyrics – it encompasses so much of what we have experienced! My friend, if you are wondering if it’s worth following Christ, IT IS. If you don’t know Christ as your personal Lord and Savior, please tell me. Please message me. I would love NOTHING MORE than to help you in your journey to faith in Him. It will change your LIFE. Not only here on this earth, but eternally! Without my faith, there is NO WAY I could’ve gotten through this all – the hope God offers is unmatched and the goodness he gives, nothing will compare. Choose this day, whom you will serve.