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3/4/2016 Latest post:
Wyatt was diagnosed with AML (Acute Myeloid Leukemia) on February 29, 2016 after only a little over a week of fevers and nausea. We were shocked by the diagnosis but jumped right into a whole new world of cancer treatment. We soon learned that pediatric AML is a rare and aggressive type of leukemia--only 500 children a year are diagnosed with AML in the United States. But we were also glad to learn that there are effective therapies. The regular course of treatment for AML is to do four rounds of intense inpatient chemotherapy that each last about a month--chemotherapy is given for about a week, but patients need to stay in the hospital for an additional three weeks or so because their immune system is so compromised that they need to be hospitalized to avoid infection. After the first round, a bone marrow biopsy is done to see how well the patient has responded to the chemotherapy. If the patient responds well, then he will do three more rounds of "maintenence" chemotherapy and hopefully remain cancer free. If cancer is still present after round one, then the patient will plan for a bone marrow transplant. After Wyatt's first round, we were thrilled to learn that the chemo had put him completely in remission. He was "MRD negative" (minimal residual disease negative), which meant that even the most sensitive tests couldn't detect any leukemia cells. His spinal fluid was cancer-free from the beginning as well.
Wyatt faced all four rounds of chemotherapy like a champion. Even though there were some ups and downs with nausea and allergic reactions, and it was hard to spend almost 130 days in the hospital, in mid-August Wyatt was declared officially in remission and finished with treatment. His follow up bone marrow biopsy at the end of treatment was clear, and Wyatt bounced back quickly. He entered school on time in September and did great in his classes, acting in the school play, and participating in sports. However, in November, Wyatt had a couple of headaches. He also complained about feeling a little "disconnected" before the headache came on. Even though the headaches didn't last long, his description of feeling strange before the headache worried me, so I called his oncologist and talked about the possibility of doing an MRI. Since his headaches weren't very severe, I wondered if I was overreacting, and when it took the nurse in the radiology department four times to get his IV in, I almost took him home because I didn't want to put him through it for two or three mild headaches. However, that night, November 11, we were told that Wyatt's leukemia had indeed returned, this time in his brain.
The MRI found that Wyatt had a number of chloromas (leukemic tumors) throughout his brain and he was rushed to Children's in Minneapolis and immediately put on anti-seizure medication and steroids in order to reduce his seizure risk. The next few days were difficult as we grappled with relapse, but Wyatt did get some good news. Although he had leukemia in his brain and in his spinal fluid, there weren't any tumors on the spine itself, and (amazingly) Wyatt's bone marrow was still MRD negative. Even so, leukemia in the brain can easily spread to the marrow, so he was started on an aggressive chemotherapy regimen as well as 12 sessions of radiation to treat the chloromas in his brain. The plan after this one month round of chemo was to then head to the University of Minnesota for a bone marrow transplant. Fortunately, Wyatt's sister Elise came back as a 10/10 transplant match, which was a huge blessing. We were also very encouraged when Wyatt's spinal fluid came back clear after three doses of spinal chemo, and at the end of his treatment, an MRI showed that most of the chloromas had disappeared, although there were still four spots that hadn't quite receded. The doctors weren't sure if leukemia was still present there, or if the spots indicated part of the healing process. His marrow was still cancer-free.
The week after Christmas, Wyatt went to the U of M to begin "workup" for his transplant. His round of chemo had been tougher on him, and to top it all off he'd caught a bad cold and cough that he'd had a hard time shaking, and had never quite gotten his appetite back and continued to battle nausea. He was also exhausted--napping for a few hours every afternoon--but we chalked this up to side effects from the radiation, which is notorious for causing tiredness. We knew that he wasn't in top shape, but also knew that it was important to get to transplant in a timely fashion so the leukemia didn't have a chance to come back out of remission. (Patients need to have the leukemia under control in order to have a transplant.) However, during all the pre-transplant testing, we were again shocked to learn that some of Wyatt's symptoms stemmed from the fact that his heart had been damaged from his chemotherapy. This is a rare side effect of some of the chemo medicines he took, and although the chances are slim of cardiac damage, it happened to Wyatt. In order to safely proceed to transplant, Wyatt's ejection fraction, or EF (the measurement of how much blood the heart can pump with each beat) needs to be at least 45%. Wyatt's ejection fraction was only 26%, a frighteningly low number, and he was immediately admitted to the ICU at the U of M once this was discovered.
Not only did this event complicate Wyatt's ability to go to transplant, but it created a whole new assortment cardiac worries and therapies on top of the leukemia. Wyatt was put on a drug called milrinone in order to improve his heart function, and although it didn't work quite as well as we'd hoped, he was able to get his ejection fraction to the 35% range. After a week in the ICU, we were released to go home on the IV milrinone and let Wyatt's heart rest. The initial hope was that a little more rest and time would get his heart back to 45% and we could proceed with transplant. However, during his month at home, his heart continued to stay in the 33-35% range. While we waited, Wyatt also had to do a lumbar puncture with spinal chemotherapy once a week to try and keep the leukemia in check. We were so relieved every time that the fluid results came back negative for leukemia. At the end of January Wyatt had another bone marrow biopsy and MRI as well. The bone marrow biopsy showed that Wyatt's marrow was STILL MRD negative (hooray!) and his MRI showed that the spots in his brain had continued to dissipate, down from four to two, and the two that remained had shrunk considerably.
The question then became, what to do next? It was important to stay on top of the leukemia yet avoid further damaging his heart. Since he couldn't yet go to transplant, that meant going back to Children's for another month-long round of chemo, minus any cardio-toxic chemotherapy meds. As of this writing (February 2017) Wyatt is in the middle of this round of chemo. In the meantime, Wyatt's transplant doctors have discussed the possibility of doing a "low intensity" transplant. This type of transplant uses chemo that is less powerful and not as hard on the system. Although the preferred transplant method is to blast any hidden leukemia cells with as powerful a chemo as possible--otherwise they'd have all kids do low-intensity transplants--this type of transplant still has its benefits. Among them is the ability for Wyatt to get the benefit of his sister's fresh, energetic stem cells, which translates into a fresh, energetic immune system. This "new" immune system is much more able to find and attack any residual leukemia cells than Wyatt's is as this point. So if Wyatt's ejection fraction can maintain in the 35-40% range, this is the option we are hoping to be able to pursue.
We have learned a lot throughout this process and dealt with many emotions. We have felt fear, despair, and anger. But we have also been overwhelmed by gratitude, a newfound appreciation for life, and an immense increase in love for Wyatt's friends and classmates, his doctors and nurses, our neighbors and loved ones, and of course our family and our Savior. Wyatt himself has been such an inspiration and we are so fortunate to be his parents, standing by his side as he fights this overwhelming battle. He's an incredible kid. As his fight continues, your support and love help him and help his family in so may ways. Thank you.