Zayden's Story
On July 4th 2012, at Hillcrest Hospital in Tulsa, we brought boy, boy, girl triplets into the world. We took our preemie blessings home to our house at the time, located in Tahlequah on the Illinois River. Over the first year, the triplets had appointment after appointment due to their pre-mature birth.
One evening, Zayden was stuffy, congested, and was running a light fever. After giving him Tylenol, the symptoms passed. Throughout the evening, the fever began again, and Zayden’s breathing became labored. I packed him up and took him to the emergency room, where he was seen and given antibiotics for strep and an ear infection.
Over the course of 10 days on antibiotics, Zayden wasn’t getting any better. I scheduled an appointment with his primary pediatric doctor, and he sent us back to the hospital for labs and x-rays that afternoon. At the hospital, the doctor told us Zayden’s white blood cell count was 88,000 and that we needed to see an oncologist. Our doctors told us OU Children’s Hospital in Oklahoma City was where Zayden was chosen to go.
Overnight, Zayden was transported by ambulance. We arrived at the hospital in the early hours of July 2nd, just two days before his 2nd birthday. Several nurses, doctors, and surgeons came in to evaluate Zayden, and he went into surgery the next morning for his central line. On the evening of the 3rd, he got his first round of chemotherapy for Acute Myeloid Leukemia (AML). Our team of doctors told us acute myeloid leukemia is the monster of all leukemias, and we will be in for a long, hard fight.
Over the course of treatment, he had countless bags and pushes of chemotherapy, as well as surgeries, scans, x-rays, transfusions of platelets and blood, meds to help with side effects of all the chemotherapy, and more meds…. it’s a lot to carry as a mother of eight. I never dreamed in a million years we would have to endure the heartbreak of having a baby with cancer… I watched him have serious reactions to steroids, violent episodes of vomiting, nose bleeds, his mucus membranes stuff off from his mouth to his rectum, screaming out in pain through the nights of hard chemo, and most hurtful, I watched him suffer from separation and loneliness from his seven other siblings, and father.
Zayden and I spent 29-32 days at a time at the hospital during his treatment, before he could have a small 3 days at home to recover before he went back for more treatment. Zayden made it into remission in November of 2014, and we were home until Christmas. Zayden went for routine labs and we were told he had relapsed. Heart break and discouragement set us back once again.
This time, we were more aggressive with treatment. We were told he could suffer liver damage, hearing loss, and could lose his sight over the next course of treatment. We chose to move forward with it, and Zayden went through more surgeries, scans, and transfusions. We were exhausted!
Zayden had an infectious playful spirit throughout all of his pain. He continued to dance, watch Mickey Mouse, and have Nerf gun battles with the nurses. We did all we could to keep Zayden in a childlike environment throughout this monster of a battle. Zayden would cruise his tricycle through the halls with his Super Man cape flying behind him. On several occasions, he would dress up as Captain America to shoot all of the nurses with his Nerf gun, as they came in to take his vital signs.
In May of 2015, Zayden went into remission, and was able to go home. We scheduled our Make-a-Wish trip, and took the family to Disney World, where we spent precious time together. I went on a mission trip to West Africa in July, and came back to Zayden looking puffy and pale. I immediately set my bags down and called our pediatric doctor.
Zayden’s doctor ordered labs as soon as possible, and discovered he had relapsed. This time, it was worse than ever.
Zayden was flown by helicopter from Tahlequah to OKC, and it was the longest three-hour drive of my life. When I arrived, Zayden had already been there for two hours without me. The doctor was waiting on me, and Zayden was in a bed already hooked to an IV pole. The doctors told me this would be his last chance- we had to get into remission to get a bone marrow transplant. We again made the decision to keep fighting through the scary side-effects.
Zayden was put through the last course of action, and in a few months, he was just a few cell counts away from remission. The doctors said our best course would be St. Jude’s Children in Memphis, so we quickly made arrangements and were on our way. After St. Jude’s initial tests, they confirmed Zayden was in remission, and was eligible for transplant immediately. We made the decision to go back to OKC for the surgery, to be closer to family.
While the encouragement was there, I also had extreme fear- transplants are so risky. Our entire family was screened to be a match for Zayden’s donor, and his older brother, Phoenix, was a match. Age 15 at the time, I gave Phoenix the option to proceed, or we could find another match. Phoenix hands down decided he was going to donate to Zayden.
We set a surgery date for Phoenix, and he gave just under 2 L of bone marrow to Zayden. The recovery was painful, but he never complained once. Phoenix told me it was nothing compared to what Zayden had to go through, and he was happy to save his life.
We stayed in isolation for over 100 days in the stem cell unit. We found ways to keep busy and have fun. We colored on our friends’ windows with window markers, we made play dough, we rode bikes, and cooked on our play kitchen. We then got the fantastic news he was 98% donor and were able to go to the Kids Korral- a place for pediatric oncology families to stay during treatment. We packed up and moved out of stem cell, we were able to play on a playground outside, run, swing, and climb. Zayden was like a new child.
We finally went home, and enjoyed our family once again. Zayden got the bond back he so deeply missed with his triplet brother and sister. He learned to ride a bike. He was able to go fishing with his cousin Jimmy, and play dress up in all his superhero costumes and capes.
As time passed, we were feeling normal again. In April of 2016, we went in for Zayden’s regular labs and clinic visit. The doctors were visibly down when they came to deliver the results. I melted. Zayden had relapsed. Full blown, and even more aggressive. Over 78% of Zayden’s cells were leukemia. We had no choice but to go home on hospice and watch him until the end of his life….
I was not giving up. I called St. Jude’s and asked for an open trial. I called OKC to see if they would refer him back to St. Jude’s, and they did. We went back April 26th of 2016, and started a trial. The trial was rough, with different chemotherapy that we had never tried, it was all an experiment. There was no real confidence it would work, so we had nothing to lose.
At the end of May, only one month into the trial, I took a break and went home to be with my other children. My husband took over the hospital duties, and I got a call late saying that Zayden had some breathing issues, and the doctor wants to put him in the ICU. I talked with the doctor, and immediately jumped in my car for the six-hour drive. I needed to get there before they put him on a ventilator. I wanted to see him awake, and let him know I was there.
When I arrived, he woke up for just for a minute to ask me if I brought his bike. I laughed and hugged him. Not minutes later, he needed intubation.
Zayden remained on the vent for the next 29 days, as one organ failed after another. We tried everything from dialysis, to an induced coma for him to rest.
I had a friend bring all the kids up to see Zayden on July 1st. He woke up to see his triplet brother and sister, and his other siblings. I asked him if he wanted a birthday party, and Zayden cracked a smile and nodded yes. I immediately ran out and bought balloons to put over his bed. The kids all went home that Friday night, and Saturday morning he started having problems around 1am…
The doctor ran in, flipped on all the lights, and they all covered him with equipment. I asked them to stop. I asked them to leave him be, medicate him so he doesn’t hurt, and let him be. I went to the head of his bed and kissed his face and whispered to Zayden that I loved him, and that we are going to be okay. I told him to trust me, and to run to Jesus. As everyone stood around, I had him cheek to cheek begging him to stop fighting, and to rest in the arms of Jesus. Zayden took his last breath 13 minutes later.
I petition our government to help our children, and to not make them suffer. Pediatric cancer needs more funding. It needs a cure.
The side-effects of chemotherapy caused the death of Zayden, by multiple organ failure. He suffered a long, slow death, and our children deserve more.
We seek more funding for research to find medicine, and ways to treat pediatric cancer, without harsh side-effects and killing our children.
Zayden was diagnosed with Acute Myeloid Leukemia on July 2nd 2014, and he passed away from multi-organ failure on July 2nd 2016- just two days before his fourth birthday.
