Leukemia Journey Update

It’s been a little bit since I’ve given an update on where I’m at on my journey towards a bone marrow transplant! There are so many moving pieces and many things that need to happen yet. Proverbs 16:9 says, “In their hearts humans plan their course, but the LORD establishes their steps.” That pretty much sums up the course of action we have to take. We can plan all we want, but God is one who will continue to move this process forward, if it be His will.

First of all, the tentative time frame is for me to be admitted on January 3, to start the conditioning chemo. After that is complete (which is about a week), then I will have the bone marrow transplant, thus starting the “100 days” that is often talked about with a bone marrow transplant. Within those 100 days, I will be at the highest risk for side effects, such as graft versus host disease, and it’s also the amount of time it takes for the donor’s stem cells to have fully engrafted and make new blood cells. The first few weeks I will still be in the hospital, as we wait for my counts to go back up and for signs that the new stem cells are engrafting. It is guesstimated that I’ll be in the hospital for about a month, give or take.

To get to that point though, I still need to have more appointments and checkpoints to clear. I will have another bone marrow biopsy this Tuesday, to see if the current chemo I am on, has rid my body of the residual leukemia that was in my blood. Then on November 27, I will repeat the process of this past month, so 1 week of IV chemo treatments, and 3 weeks of a chemo pill again. Then we wait until the bone marrow transplant. In the meantime, I will have more labs drawn, more testing done, and try to stay as healthy as possible as we prepare for the BMT.

Meanwhile, they have found a donor! From what I understand, it is a good match, to the point they could even be picky about who they chose because they had a few good options. That is only God! God knew since the beginning of time, who it would be. The goal is to get as close of a match as possible, and from the sounds of it, it sounds like it’s a pretty good one; though, I am not able to be given any information yet, except that there is a match. I am not sure what country they are from or gender, except that they found one and they feel good about it. But in reality, that is all I need to know as we move forward in this process. Of course I want to know everything and just thank this person with everything in me, for the gift they are giving me. They are giving me another chance at a cure and really, life. Without this, I would be on chemo for life. It brings me to tears when I think about the gift this person is selflessly giving.

Overall I have been feeling good! I have my moments in a day where I’ll get nauseous or feel really tired, but overall, I am content with how I’m feeling. I even started ripping up the floor upstairs – I have a hard time sitting still. The IV chemo was a little tricky and I didn’t always feel great, but made it through one round! I developed a pretty significant rash last weekend, that I ended up in the ER for last Sunday. It was getting pretty nasty and knew something wasn’t right. They believe it was the gout preventer I was on, and we are praying it wasn’t the chemo pill, which I hope to go back on this week. It was itchy, ugly, and I looked a mess. The doctor said it would take about a week to recover from, and they were pretty spot on! I still carry a few marks from it, but all in all, I would say it’s gone. We appreciate your prayers for healing and God definitely healed!

My what I like to call “cancer numbers” are still very low, like my platelets and white blood cells, which makes living a “normal” life tricky. I bleed easily and am very susceptible to getting sick. Anytime I have a fever over 100.4, I have to go straight to the ER. So you can about imagine, I want to try my best to prevent sickness, so that I can bypass the hospital. I have spent WAY too much time in hospitals over the years! Of course some of this is completely out of my control, but we will do our best, but also take care of our mental health too. So far so good, it’s just taking longer for those numbers to go up than I expected. Thanksgiving is going to be tricky, but we know God already knows what my blood is going to do and so we are just leaving it in His hands.

This entire process is taking an immense amount of trust. There is much to plan for, think about, and prepare for, as we think about what the next few months will look like. There are many fun events I’ll miss. Moments that I wish I could be there for. But this is the road God has paved for me at the moment and I have no other choice, but to just trust the journey and obey the path He’s laid before me. I can sit here and worry about tomorrow, but worrying about today and tomorrow, is a lot. Worrying about 2 days, is way worse than worrying about one. Hence why God tells us not to! So that’s why we hang tight to the promises of God and the truth that He will take care of our tomorrows, as long as we trust Him with it. We just have to walk through our todays, serving Him, in whatever capacity He has us in. I grieve what I have to miss, but I know He will fill those gaps with his grace and love. He already has.

It’s a season of life and we know this season shall soon pass too. One day, this will all be a memory, just like my heart surgeries are. We made it. We did it. And we can do this too, by the grace and help of our Savior God.