Today, I am back in Tennessee getting the last of my lymphocyte infusions from my donor. This is my fourth dose and the last of the cells that my donor so graciously gave (after giving cells for my transplant).
The idea behind these infusions is super complex. Essentially, we are hoping that any of these extra donor cells will cause my body to recognize they are foreign, my body will attack the cells, and the cells will attack my body. This is called graft vs. host disease. It can be nasty, but in the midst of the war within my body, the hope is that any leukemia cells will become fallen casualties.
I am often asked why I am still doing chemo and getting these lymphocyte infusions. After Transplant 2.0, my marrow still showed a small trace of leukemia (MRD positive). We knew that my man-made leukemia is extremely aggressive, so we went all in. We started a new chemo regimen, started the lymphocyte infusions, and stopped immunosuppressant medications early. After trying all of these steps, my marrow showed no sign of leukemia and has been clear for a year. The problem? We are unsure what got rid of and has kept the leukemia away. Did my transplant cells just need a little extra time? Is it the chemo or lymphocyte infusions? This makes it difficult to stop treatment, because we do not know if the treatment is keeping it away, or if it is gone for good.
Reaching the last dose of lymphocytes has led us to begin discussing stopping chemo soon, but I still have a few rounds left to go.
When we first started discussing infusing lymphocytes nearly a year ago, I had many conversations with my doctors, nurses, and family. The idea seemed so scary and I did not know anyone who had done something like this.
I asked dozens of questions, just trying to prepare myself for the unknown.
When I asked my team how many infusions they anticipated, they warned me that we would do as many as my body would tolerate. They were unsure if I would even be able to tolerate more than one infusion. But, I always knew that I would tolerate it well enough to get each dose, because tolerance was in the hand of my perception. The infusions would have to kill me to stop the infusions before receiving the final dose.
There have been times where I have been motivated to brush off the challenges, just to try and keep tolerating the treatment. In my mind, if we were stopping at my word, then we weren’t stopping at all.
It has gotten easier with each dose, but it was rough in the beginning. Tolerance is all in the mind though, and I believe I have tolerated it well. We run the hopeful risk of my body being a battle ground in a war between my donor’s cells and myself.
At this point, I have been in treatment for five years (exactly tomorrow). Learning to roll with the unknown and the risks was one of the first lessons, and has likely resulted in the thrill of treatment. The treatment risks are nothing, because I am aware of the real risks.
The lymphocyte infusions require little work on my part. Each dose gets a little larger, and all I have to do is hang tight while getting them infused. The cells cause long term side effects in the form of graft vs. host disease. These can be presented in many ways, but usually gut and skin symptoms have been the most common in my experience. The problem with the infusion itself lies in the preservatives that keeps the cells good. We pre-med with a large dose of IV Benadryl, to try and combat a reaction. Yet, I always struggle to breathe and am flooded with nausea and a wave of heat. The struggle is only during the infusion and is short lived, but is strong enough that it is permanently marked in my mind. Thankfully, the hours of IV fluids that I get both before and after the infusion helps keep the preservative reactions short lived.
I rarely share the nitty gritty about treatment, but today is different. With every type of treatment I have done, I have been able to talk to someone who has done it before. When I started this treatment of DLIs, that changed. I still do not personally know anyone who has done this. To have been able to have talked to someone when I was first starting would have immensely helped my mental health. My hope is that by documenting this while it is all still so fresh, is that someone, somewhere, one day, will benefit from my experiences.
I would just like to preface this post by saying that my tests from this week came back GOOD! On Tuesday, I had my 16th bone marrow biopsy. At this point, I have it down. Yet, the waiting is never any easier. It is quite the process of events between when my biopsy is done… Read More Bone Marrow Biopsy Results
I talk about so many aspects of fighting cancer. It is easy, because I have been doing it for five years and I am still taking chemo. It is as much a part of my life as doing homework or deciding what to eat for dinner. But, one thing I do not share often, is the emotional toll. … Read More The Emotional Cycle of Fighting Cancer (multiple times)
Five years ago, I first began chemotherapy at Arkansas Children’s Hospital to treat my first cancer diagnosis. It was at that time that my first child life specialist, Emily introduced me to the Beads of Courage program. The Beads of Courage website describes the program as: “Every Beads of Courage® program integrates the use of beads, the… Read More Beads of Courage