If only things could be simple.

A few weeks back we received a call from Xavier’s doctor with results from his Day +56 blood tests. John answered and it was immediately apparent that it was not going to be a quick conversation letting us know that everything is on track and looking good. Nope. It was a conversation that consisted of the Doctor letting us know that we needed to make a new plan, and fast.

In our first round of testing at Day +28, Xavier’s blood (not bone marrow) had come back undetectable for CML. No leukemia. The new tests said otherwise. At what percentage, I don’t even remember to be honest. I couldn’t get past the fact that it was now positive.

In addition, the chimerism test showed that W’s cells only made up 82%. We were hoping to see 100% chemistry. This is an important test done after a donor bone marrow transplant that involves identifying the genetic profiles of the recipient and donor, then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue.

In that moment all I can think besides being sick to my stomach is LEAVE XAVIER ALONE! What the heck! And by the way that is the PG version of what was going through my mind… This exact feeling still runs through me multiple times a day. But can you really blame me…

We got this unsettling news on a Thursday evening and it also happened to be our doctors very last day attending at the SCCA clinic. Go figure, right? Anyway, she gave us an idea of what she thought we should do moving forward, but said to wait for the new attending doctor to give us a call the next morning…. Yes, it was a long night. We’ve had a lot of pretty good punches to the gut over the last couple years but there was something about this one that really made it hard for us to catch our breath.

The new attending, whom by the way does have some knowledge of CML (our other doctor did not), called us the next morning. He asked us some questions as he was completely new to our case aside from a brief conversation he had with our previous doctor the night before and Xavier’s file on his desk.

The first thing that I must say is that he let us know there is hope that we can get rid of this nasty leukemia, and a good chance at that. We do have a few options, however this is not the way any of us wanted to go about it.

What we really need to see is Westin’s cells blasting out the remainder of Xavier’s cells. That is where the residual leukemia is. Again, we’re at 82%, we need to be at 100%.

Option #1: Quickly wean Xavier off of Tacrolimus (Tacro), the immunosuppressant that Xavier is on to prevent and treat Graph vs. Host Disease (GVHD).

Option #2: Start back on a TKI (the targeted therapy/chemo we were taking the year prior to transplant) AND a Donor lymphocyte infusion (DIL). This is taking blood from the Xavier’s big brother (his original donor) and infusing it into Xavier.

The goal of either option would be to hopefully create minor GVHD so the donor t-cells will overtake Xavier’s cells to eliminate the residual leukemia and bring the chemistry to 100%. Both have their risks, but we decided that option #1 made the most sense for our situation. Option #2 is still there if we need it.

What normally takes months to wean off of, we got Xavier off of his Tacro in 2 weeks. Done. He is completely off. He is doing great. He has had no signs of GVHD but we are hopeful that just the very act of getting off this immunosuppressant will allow the donor t-cells to take over. Xavier has his Day +80 bone marrow biopsy and blood tests in the beginning of September. All we do now is wait.

In our last appointment, the doctor asked us if we were frustrated. I was taken aback by the question. Frustrated? No. We know we really have no choice and that this is the next step for us. We need to be patient and wait to see what the next round of testing indicates. What we do feel is anxiety. We are anxious. We are coping and living our day-today life the best we can, I think pretty fantastic considering. We are taking it in stride. It hurts but we have no control in this moment and we won’t let that get the best of us.

I think that it is incredibly important to note that Xavier, while we had some concerning news a few weeks ago, he is doing beautifully! SO good. He is happy, smiling, laughing, playing with his big brother, golfing with Daddy!

Soccer Dance! He is just an absolute pleasure to be around. John and I hear him laughing and telling jokes and it brings us this insane amount of joy and it’s just like… that is it. That is what we needed today. Our day is complete. There is definitely something about this kid… And his big brother.

You know, we are not cruising through this like we had hoped for, but that does not mean we won’t get to our destination. We are taking the alternate route, set on cruise control, and we’ll get there when the time is right.

A few weeks back we got a phone call from our doctors at SCCA. Xavier had multiple tests at day +28 and the results had come back. We were anxiously waiting for this call. This is basically the first time after transplant you get tested and they can tell you how well the donor cells from the transplant took and how many Leukemia cells are left. The bone marrow test is the deeper and most sensitive of two test taken for determining if Leukemia is present.

The phone call came in and immediately we got the old, “hey, it’s not the news we were hoping for, but…  That “but…” that really doesn’t help you in that moment when you are waiting to hear something great, and then you hear that things aren’t quite what we had hoped for. Not yet at least…

As it turns out, Xavier’s CML did come back detectable in the bone marrow at >.01%. Even though we did know this was a possibility, we still felt somewhat blindsided with this result. Even at such a minimal amount, detectable is detectable. We also learned that W’s white cells only make up 79%. Of course what you hope to see is the chemistry being at 100% donor.

Our doctor continued to tell us that because Xavier is such a unique case, she had emailed an adult CML specialist that just happened to be attending at SCCA. By the way, I love that our doctor was able to acknowledge that our case is not something she has a lot of experience with and put ego aside to get the advice of another doctor. The adult CML specialist let our doctor know that this is very common for a CML patient. For adults, they don’t even take this test until day +56 or +80. He said absolutely do not put Xavier back on a TKI. He felt we were still on track and looking good.

After the conversation with the doctor and being able to process the information, it still left us feeling a bit confused and uneasy. John actually called and gave our nurse a couple of questions so she could relay them to our doctor prior to our appointment the next day.

At our appointment, instead of our doctor answering our questions we had given to the nurse, she did one better. She tracked down the adult CML specialist and he made time in between his patients to answer the questions himself. We got a lot of clarity and felt much better after talking with him. Simply put, it is now the job of W’s immune system to wipe the remaining leukemia cells in Xavier’s marrow away.

Again, major kudos to our doctor because had she not reached out to the adult CML specialist I really think her instinct after still seeing signs of leukemia in the marrow would have been to put Xavier back on a TKI.

A few days later we got the other test back that tests the amount of leukemia in the peripheral blood. It came back undetectable! That was great news! We will be doing the peripheral blood test again this next week and also the chemistry test. We hope to see undetectable once again with donor cells higher than the original 79%. Then, day +80 we will do the bone marrow test again. It’s so hard to be patient during this process!

When you look at Xavier, you don’t see a young boy who has just undergone a bone marrow transplant. You see a vibrant, mature little boy full of amazing energy and excitement. You see a boy that is so very strong and so very ready to take on the world. Xavier can’t go out and be like all of the other kids.

He still has a very weak immune system and is susceptible to dangerous infections that his body is not yet ready to fight. He’s taking medications that severely suppresses his immune system.

tiny golfer video

The other day Xavier and I were sitting on our front porch. A few of the neighborhood kids we outside playing a game and noticeably having a great time. As Xavier contently sat there watching the kids, he started smiling and giggling as though he were present there in that moment with his friends. He was whispering to me the play-by-play of the game as he watched from a distance… While Xavier is only three years old, he has been absolutely remarkable at understanding his restrictions. From the moment he entered the hospital to start his bone marrow transplant to today, he doesn’t question when we tell him something is not a good idea. He doesn’t get upset when we say something he is about to do will make him sick. He stops and doesn’t think about doing whatever that act is again. There are so many things that must be completely confusing to him, but he has fully grasped the fact that in order to get better, he needs to listen to what his parents and doctors say. And dare I point out that this is a concept that many, many adults have yet to grasp or accept. Just saying…

While it is absolutely fantastic to be home, we are incredibly busy with post-transplant home care. Even when we are physically not busy doing something. We are busy! Our minds that is. It is absolutely imperative to be on your caregiver game!

Most of Xavier’s meds we take twice daily with a tiny bit of flexibly in when we give each dose. Those meds include antiviral, antifungal, drugs to prevent pneumonia, drugs to prevent liver toxicity, nausea… You get the picture. Every single one Xavier takes in pill form, orally. There are two other pills that are a bit trickier. One which seems incredibly simple but very important which is magnesium. They keep increasing his dose so he currently takes 4 huge magnesium pill a day. If your magnesium levels are too low you are at high risk for seizure. Then there is the infamous Tacrolimus that is imperative for all donor bone marrow transplant patients to take. The job of the Tacro is to prevent and treat GVHD. He takes one capsule every 8 hours. On the dot. That means one pill at 1AM every day. The doctors draw Tacro levels two times a week to make certain you are at a therapeutic level and they change accordingly. And I guess I can’t forget the all-important multivitamin gummy bears…

Xavier has been doing incredibly well all things considered. The only thing that we are having a hard time with is hydration. Xavier needs to consume 42oz. of liquid a day. While we work hard on this and he slowly consumes more and more each day, we are still quite far from the required 42oz.

To get the additional liquids in that we cannot get orally we hook Xavier up to nightly fluids. This goes through his central line. We started at 1000ml over 12 hours and today we are at 500ml over 5 hours. We are making progress! We hook him up at 8PM and unhook him at 1AM. We can’t wait to get Xavier’s central line removed but until he can drink the full amount orally, he needs to keep it in.

In all of this chaos that is our life in this moment, sometimes it’s hard to truly appreciate how far we’ve come. I do believe that part of why it’s hard for us to see our amazing strides forward to this moment is because we didn’t exactly get the results we are looking for. I can admit that. But, when you look beyond the initial test result… Wow, we are on the other side of transplant and he is recovering remarkably. Remarkably.

No matter what challenges get thrown our way, including those of emotional pain and heartache, I will never forget that we are incredibly blessed.