TWO YEARS Post Transplant!

Today marks TWO YEARS since my bone marrow transplant!

This is a MASSIVE milestone in the journey, as the risk for relapse decreases even more AND because my donor is international, that means I can FINALLY find out who she is, hopefully next week!

For being a woman of many words, words will never adequately express what this journey has entailed. This is why I’m STILL working on another book, it’s just been a hard one to write, as I still process this journey myself. It has had an innumerable amount of ups and downs, but also an inexpressible amount of God’s grace and faithfulness evident around every twist and turn.

Back in September 2022, I was already put under for my 4th heart ablation that I had been hospitalized for the past 3 days for, but woke up to my surgeon leaning over my bed, gently telling me my blood counts were low. Hours later, after being wheeled back up to the heart floor to recover from a procedure that was never completed, I found out I had acute myeloid leukemia. I was now a heart patient and a cancer patient. The doctors decided to move me to the cancer floor at the U of M hospital so that I could start receiving treatments within the next 48 hours. I had to get a PICC line placed, numerous tests completed, all while still recovering from my heart procedure, to fight this cancer.

Tears continuously fell for the first few days, as I tried to imagine and then accept that this was my new reality. Cancer patient and heart failure patient. The hardest part was that there was no preparing. No packing a bag. No saying goodbyes. No mental preparation. God handed that diagnosis to me out of the blue and I admit it is still catches me off guard sometimes, that this is my story.

Watching my family go through this first diagnosis, the outright tearful goodbyes, the clinging to the moments we did have together, made the next 6 months seem like an eternity. I completed my 3-4 weeks of inpatient treatment (made it out in almost record time though, 2 1/2 weeks), to then start 4 more months of treatment, where I went back to the U of M 1 week for each of those months, to receive my consolidation treatments, to ensure the cancer was gone for good.

Each test proved that the treatments were working and by the end, I was considered to be in remission, with no sign of cancer! Ringing the bell was an emotional moment. All that had happened in the past 6 months, was finally behind me! I WAS CANCER FREE.

Then June 2023 happened.

After a routine blood test, one of my tests came back showing a trace of cancer, but at the slimmest of margins, to the point it was questioned whether it was a false-positive. A bone marrow biopsy would confirm that indeed, the cancer was coming back. The devastation we felt was overwhelming, knowing that because of my heart failure, treatment options were limited. Doctors decided I could receive IV chemo again, while taking a pill, until it no longer worked, which they said would give me 2 years. And hopefully by that time, there would be a clinical trial. For the first time, the reality that I might lose my life to cancer and not heart failure, became even more of a reality. The bonus though, was that I could receive these treatments locally and not have to travel back and forth to U of M.

Because chemo for life was a difficult decision, and really my only option, my cancer doctor at U of M wanted to have my heart tested to see the severity of my heart failure, after receiving several rounds of chemo treatments already. She had the idea that if my ejection fraction (how well my heart squeezed and pumped my blood) was reasonable, I could POSSIBLY qualify for a bone marrow transplant, since the IV chemo and pill would never bring me to a cure, just prolong my life.

This is when a miracle happened. I know what miracles look like in the Bible, but this miracle, I would’ve never believed, if I didn’t see it for myself. This miracle, no one would believe, including my doctors, if they didn’t see it for themselves. So much so, that the test was eventually repeated due to the shock God gave us all.

At the end of September 2023, I had an ECHO to just see what my EF was. My last ECHO, at best, was 28%, which was far better than the 10-15% it was a few years prior that. In order for just my heart to qualify for a bone marrow transplant, I needed an EF of 40-45% at least. My ECHO came back at 47%.

FORTY-SEVEN.

Not only did I meet the criteria, God made it even HIGHER than the 45% needed! The best I had seen it since my open heart surgery in 2017. God’s miraculous hand, healed my heart just enough, so that my life could be saved.

The next few months brought an insane number of tests, as I worked my way towards a BMT. Several matching donors were found and 11 out of the 12 contacted, were willing to donate their bone marrow so that I could live. A statistic that still brings me to tears. The doctors settled on one girl (who I know little about, but have been penpals with for the past 2 years), who was a PERFECT match. They mark a match by 8 markers and then 16, and she was a PERFECT 16 match. I literally have an international genetic twin!

In order to have a BMT, I first had go through more chemo in prep for it and then be hospitalized for about a month to receive the transplant. I was blasted with more chemo and chemo that they blood-tested me for to see how much my body could tolerate, without ending my life. It was intense and it was beyond difficult at times, but I made it!

This shirt I often wore while at the hospital – a gentle reminder I needed to trust God, despite the unknowns that lied ahead.

After about a week in the hospital, after all the chemo, I received my NEW bone marrow, thanks to my donor! She literally saved my life because if she did not donate, I would never have an option for a cure. Plus, because the chemo killed all of my bone marrow, if it didn’t get replaced, I would not live. So, now the DNA in my blood and my immune system are HERS! I literally am carrying around 2 people’s DNA. Isn’t that just mind-boggling? The DNA in my fingerprints are me, but my blood and immune system are hers. Only God could give medical professionals the mental capacity to do something like this!

This picture below is almost hard to look at as I see the discoloration in my skin (almost red and rashy), the tired eyes, having just had my head shaved by the most wonderful tech, but it is a representation of what the body experiences. No one tells you that it actually hurts to lose the stubble that is still to be lost after having your head shaved. That was a shocking part of it – I thought once it was off I was done, but not at all. It took me about 2 weeks to fully lose all of the stubble, which made it hurt to sleep and wash my scalp. All the little nuances of cancer!

My first cancer test after my BMT, I was CANCER FREE! (Yes, I know it’s backwards :)). As hard as the journey was at that moment, going to the doctor 3-4 times a week, giving myself IV infusions, being a hermit, and trying to get my body back into working condition, God was doing a miracle inside my body, rebuilding it from the inside out.

And by the end of April, I made it to DAY 100! At that point, my body fully engrafted my donors cells and the risk of complications of infection decreased a bit because my body could now start fighting it on its own. I was so excited when this day came because I thought my life would go back to normal, somewhat, but that wasn’t the case. Nothing really changed, as I was still on my immunosuppresents, still had to be careful in public and wear a mask, still went to the doctor frequently, etc. Even though my external wasn’t changing, my internal was and I had to trust the process!

The rest of 2024 was all about fighting. Fighting for life. I know that sounds drastic and dramatic, but that is truly what it entailed. In fact, they call it cancer survivorship because it affects not just the internal, but every part of a person and their family. By January 2025, WE HAD MADE IT! ONE YEAR!!!! That meant I could come off my immunosuppressants, start working again to small degree, not be as nervous in public, and start weaning off some other meds as well!

And here we are…

TWO YEARS POST TRANSPLANT! Mazy made me another sign and truly this is HUGE milestone. Now granted I still have a cancer test coming up in a few weeks, which will determine if I’m still on the road to a cure or have relapsed, but the chances of relapse are getting lower and lower. I survived the highest-risk timeframe (the first 2 years) and now I have an even higher chance of a full cure. Yes, my immune system is still recovering, I’m still at a high risk for secondary cancer, and I could still get graft-versus-host disease, but these things lessen as time goes on.

Medical conditions are always about statistics and the “odds” from a doctor’s perspective, but we serve a God who is MUCH bigger than any statistic or “odd”. God has my days numbered and though my life has been put into question several times, His gracious hand has sustained my heart, immune system, and life, in countless ways. And I can’t help but sing of His goodness and grace in my life!

As you can see, my hair is coming BACK, I’m slowly gaining strength, the appetite is coming back, energy is increasing (SLOWLY), and I am gaining HEALTH. This is only possible because of GOD. Only HE could work the wonders He has.

I know I still have a ways to go to get this body regulated, but I couldn’t be more thankful for the journey. God has taught me countless lessons through it all, from living a healthier life to what it truly means to follow Christ, to meeting people I never would have met if it wasn’t for this road. People who have now become friends. THANK YOU, to all of YOU, who have helped me get to where I am today. For walking with our family and supporting us. I know this journey is far from over, as cancer survivorship is a life-long process, along with having heart failure, but it truly takes a village to survive. And without our village, both near and far, our family would not be where we are today.

THANK YOU.

We give all the praise and glory to God alone, for HE is the One worthy of ALL OUR PRAISE!