This is the story of Michael's journey through cancer. It was writtten by Michael's mom, who wrote from the heart, and with pure emotion, the details she remembers of Michael's fight, day in and day out. As a warning, this may be difficult for some to read, as it is guaranteed to pull at your heart strings. But we felt it was important to include for you to fully gain a sense of who Michael was, all that he endured, and how he helped to inspire all that he did!
"Michael Alcayaga was off to a great start in high school, enjoying life as a teenager. He had just completed his freshman year at Cascade High School and was enjoying summer, looking forward to getting back to school and playing sports.
In 9th grade he played on the freshman basketball team and the JV baseball team. He went to the bonfires, the football games, the dances, proms, and so on. He had great friends, a wonderful girlfriend and was full of life. He always did well in school and had a bright, promising future.
Early in the summer of 2013 Michael began having severe nosebleeds. It wasn’t too uncommon for him to get them, but these were pretty severe. He went on a trip to Maui with one of his best friends and his family in early July, and we worried about him having bloody noses there, but he didn’t get any. So, we figured maybe it had something to do with our climate here. While in Hawaii he did get swimmers ear, however, so when we went to the doctor for that we mentioned the bloody noses. She looked in his nose and could see that the blood vessels were pretty close to the surface. So, she said if he continued to get them they could probably cauterize his nose (ouch!).
A few weeks later the severe nosebleeds were back … after a few trips to the Ear, Nose, and Throat Specialist for chemical cauterization, then electrical cauterization and packing, they still didn’t stop. On the fourth visit to the ENT, the Doctor recommended having bloodwork done as he stated “this might be more than just a bloody nose”. I will never forget those words … and boy, was he ever right. They took his blood, and we went home and waited for their call, which came a few hours later. The doctor told me that his red blood count was low, which wasn’t too surprising since he had lost so much blood, but then he told me that his platelets were also low. I didn’t know what this could possibly mean, but he stated that he had already spoke to our general practitioner, and they wanted us to go to Children’s Hospital in Seattle for some further testing. (I will admit I googled low platelets, and the first thing that came up was Leukemia so I got startled … but he only had a few of the other common symptoms that were listed … it couldn’t be Leukemia … no way …. not our Michael).
Yes, it was Leukemia, and, yes, it was our Michael. On August 12, 2013 we were told those ugly words that no one wants to hear, “your son has cancer”, Michael was diagnosed with Acute Lymphoblastic Leukemia (ALL). Michael’s first words after receiving this devastating news were “I can’t wait to be able to say I beat cancer”. Sadly, Michael never got to say those words, and he never will. He didn’t beat cancer, but he sure fought like a true warrior with bravery and strength that is almost unimaginable. He became our hero. He became a hero to many.
Michael was admitted that night to start treatment immediately. Prior to that, he had never been in a hospital. His first stay there, he was in for 8 days, and received the “Induction phase” of chemotherapies, which he tolerated very well. Then, about two weeks later they did a bone marrow aspiration to see how well the chemo worked, and how much, if any, cancer was left in his marrow. Unfortunately, they told us that his induction “failed” and his MRD (Minimum Residual Disease) was still 11.25%. This tells the doctors that his cancer was resistant and aggressive, and it put him in the “very high risk” category. Michael would need a bone marrow transplant to reduce the chances of the cancer returning after end of treatment.
So, the standard treatment plan was out the window, and they were going to make a custom treatment plan to get him into remission so that he could have his transplant. Michael’s triplet sisters gave their blood to see if they would be a match, but none of them were, and they couldn’t find a match on the donor registry. So, they identified a match with cord blood that was banked at the Fred Hutchison Cancer Center. To receive his transplant, his MRD had to be at .01% or less to be considered “in remission”.
In December, 2013 he was considered “in remission” with an MRD of exactly .01%. Awesome!! Transplant was scheduled for 12/30/13. He was to be admitted on December 23rd for “Conditioning Treatment” (4 days of full body irradiation and 4 days of chemo). Our family even had an early Christmas. Michael was feeling relatively well at this point… he was able to attend school, and other than the bald head if you didn’t know he had cancer you wouldn’t even guess. He was a real trooper and tolerated everything so well … physically, spiritually, and emotionally. Then, just before he was to be admitted they did a bone marrow aspirate, “just for good measure”. I remember he said to me “Mom, we are almost done with this cancer stuff”. We kind of liked the idea that he wouldn’t have to go through the 3 years of treatment if he got a transplant, he could be done much sooner than 3 years. Unfortunately, the MRD was up now at .43%. Transplant was delayed and further chemo would be needed to get it back down. But, he already had most of the standard chemotherapies used for ALL, and the doctors weren’t sure what to do. We knew of the CAR T-Cell therapy that was being done in Philadelphia, and it was just starting on Pediatric patients here at Seattle Children’s.
The CAR or PLAT T-cell immunotherapy is a revolutionary, new treatment for relapsed or refractory B cell Acute Lymphoblastic Leukemia (ALL). Doctors and Researchers are hoping this will someday replace chemotherapies, therefore reducing side effects and reducing the treatment time (currently standard chemotherapy treatment for boys with ALL is 3 years!).
T-cells are white blood cells in the immune system that fight infection. The goal with PLAT is to reprogram a patient’s own T cells so they can seek out and destroy cancer cells wherever they are hiding in the body. We felt fortunate to have this study available in Seattle, as we did have the option to travel to Children’s Hospital of Philadelphia (CHOP), which would mean at least an 8 week stay in Philadelphia, and regular visits back for checkups. We opted to stay in Seattle and Michael was enrolled as “Pediatric Patient #3” in the trial. In early January, they took Michael’s blood and sent it off to the lab for his T-cells to be “reprogrammed”. In the meantime, he had inpatient chemo to try to keep the cancer “at bay” until he could receive the infusion of T-cells. He was infused on January 30th with his new, re-engineered, re-programmed T-cells. The infusion took place in the clinic on an outpatient basis, however, we did have to stay for several hours after for monitoring. They wanted to be sure he didn’t have a reaction to the transfusion. It was a very uneventful, boring, long day at the clinic. It was expected for Michael to get a fever about 3-5 days after the transfusion. With previous patients, they had very high fevers, and low blood pressure, and required ICU care during this period, which they call the “Cytokine storm”.
On about day 6, Michael experienced a very minor fever, but nothing like what they expected. However, it was then that they told us they had given him a smaller dose of tcells, to try to reduce the severity of the “cytokine storm” that previous patients #1 and #2 had experienced. Shortly after, they took a sample of his blood to look at his T-cells. They could tell that they had expanded and multiplied, as they were hoping they would. Soon after, they did a bone marrow aspirate. Unfortunately, it was determined that although they had expanded and multiplied, they didn’t stick around for long, and they left without doing their job. They didn’t kill any of the cancer cells. The doctor’s explanation was that the army of cancer they were up against was just too large … she said that his T-cells made great “soldiers”, but there just weren’t enough to conquer the much larger army of cancer.
So, the doctors came up with a new plan. They still had some of his reprogrammed, unused T-cells in the lab. They received compassionate authorization from the FDA to infuse Michael with a larger dose of T-cells, but first they thought they should do some chemo to reduce the army of cancer. They determined that they needed to bring out the “big gun” chemotherapy called Clofaribine. This is the mother of all chemo’s…it is so strong and so harsh that they only pull it off the shelf when absolutely necessary. They felt it was necessary in Michael’s case.
We were a little familiar with Clofaribine, as it was one of the options presented to us at the time the T-cell therapy was first presented. At that time, we had a choice between 5 days of Clofaribine, which would likely mean severe side effects and at least a month in the hospital waiting for count recovery (recovery of all the “good” cells that this chemo would also kill), or the T cell therapy. So, this time, we figured between the “big gun” and the T-cells, one or both would work to get him in remission so that he could have his transplant.
On March 5th, Michael was admitted for 5 days of chemo. They sure were right … even just after the first infusion it immediately made him feel sick and he puked (the FIRST time he had ever had such a quick, horrible reaction to any of the chemos). He received two infusions a day for 5 days, once in the morning, and once in the evening. They were dreaded, let me tell you. I’m pretty sure he vomited after, and sometimes during, all of the infusions. It was horrible. But, he was tough, and he fought like a true warrior.
After those five days, he had a two day break, still hospitalized with low counts. Then, on March 12th he received his second dose of re-engineered T-cells (50% larger than the first time). Then, we waited. After a few days, they took a blood sample and looked at his T-cells … once again they had expanded and multiplied wonderfully. This time, however, he did get the Cytokine storm …bad!! He was violently ill…puking almost constantly and running high fevers. They told us it should last about 5-7 days. We were sure the T-cells were doing their job this time…and Michael kept saying “well, they must be working”. He didn’t require ICU care, but the ICU nurses kept a close eye on him, checking on him regularly, he was almost transferred to the ICU, but then he started to get better. They did a bone marrow aspirate and unfortunately the results were not good. The T-cells once again left without working, and the “big gun” chemo didn’t even make a dent in the cancer cells. His marrow was still packed full of cancer cells, of course not leaving any room for any of the good cells (rbc, platelets, etc.) to produce. This was almost worse than hearing “your son has cancer”, because now we were running low on options. Michael’s leukemia was proving once again to be very resistant, and very aggressive.
During this time, we celebrated Michael’s 16th Birthday on April 3rd in the hospital. Not how I had always envisioned his 16th Birthday. The hospital was very good to us, and lined us up with a complimentary limo ride to Seattle’s Space Needle for lunch. We got Michael all pumped up with blood and platelets, and timed his meds so that he would feel the best he could for his first journey outside of the hospital since being admitted on March 5th. That journey was his last time to ever leave the hospital.
From here, our only hope for a cure would be clinical trials. We scoured the country and came up with two possibilities. One of which was very hopeful … similar to the T-cell trial, but this time focusing on his CD22 cells, instead of the CD19 cells that his T-cells had been trained to attack and kill. This trial was being conducted at NIH in Maryland, and there was only one spot left, and then that phase of the trial would be closed. They sent his marrow samples to NIH, and he was “on their radar”, but as per FDA regulations, we had to wait 30 days from the start of the previous clinical trial before he could be eligible. At this point, he was still hospitalized with zero counts. As the 30 day mark was approaching, sadly Michaels condition was deteriorating … he was weak, in pain, and deconditioned from being bedridden. We weren’t even sure how we would get him to Maryland, but we held on to hope, as it was our last hope. Just before the 30 day mark we learned that the one remaining spot had been filled, so that trial was no longer an option. We searched for other trials, and decided on the drug Panobinostat, an oral med that would be taken for 5 days. On Day 30, he started it. Michael missed the second days dose as his potassium and magnesium were too low. We were told this would be a constant battle as the drug depletes those….the drug also depletes platelets, but at this point he was already receiving daily platelet transfusions and rbc transnfusions about every other day. His body just couldn’t produce them, and when they were given his body just couldn’t retain them. The cancer cells were wiping everything out.
The Panobinostat wasn’t and Michael’s condition continued to worsen. We were holding on to hope, and praying for miracles, as were a lot of people. Michael’s immune system was shot, and even though he was on some very high maintenance antibiotics, he developed a yeast infection in his blood which was discovered in his daily bloodwork on Friday, May 16th. We knew this wasn’t good.
Michael slowly started slipping away, and passed away on Tuesday, May 20th, 2014, surrounded by his Mom, Dad, three sisters, step brother, Grandma, and Emily, his girlfriend that he adored and loved dearly.
Our lives will never be the same …. But Michael’s life touched many, and many have now taken the “vow” to “Live 4 Michael” in his honor. We have met many wonderful people on this journey, and we would like to make a difference in the lives of others on similar journeys, just as some made a difference for us. In honor of Michael, we are setting up the “LIVE4MICHAEL” foundation to help those families like ours that find themselves on this cancer journey … a journey like no other".