Hope comes to us in many ways. For many children and families receiving care at Seattle Children’s Hospital, hope is in the hands of dedicated medical professionals. Yet, the staff members at Seattle Children’s don’t hold onto this hope. Rather, they selflessly spread it to the very people they serve—the children and their families. They collaborate with the patients and families, allowing each individual to be heard, and each family to play a role in their child’s care. Hope isn’t just a value, it’s a promise.
Sometimes, we search for hope in our greatest moments of despair—seeking answers to the unknowns that haunt us. We wonder when we will finally find an answer and a breath of fresh air. Marissela’s mother felt this haunting when her daughter was just over a year. She began seeking answers, trusting her intuition as a mother. What came next was 845 days of more unknowns and a whirlwind of treatments, clinic visits, hospital stays, rounds of chemotherapy, and changes in her daughter. Seattle Children’s gave Marissela and her family hope, but the strength to make it to the end of the battle came from within.
Peaks of Life first heard from Marissela’s mother, Kayla, at the Annual Gala in 2017. Now, Kayla shares more of her family’s journey with Marissela at Seattle Children’s Hospital.
This Marissela’s story. This is hope. This is strength.
In June of 2014, we welcomed our second daughter into this world. Marissela Grace: 5 pounds, 14 ounces, perfect in every way. I hardly slept; I just stared at her tiny little fingers and sweet little face. Even as a baby, I just knew she was an old soul. We used to laugh because she would fall asleep in a second if we turned on old school rap music. She just had this way of looking into you, not at you. Our family was happy, healthy and invincible.
Just after Marissela’s first birthday, she started to regress developmentally. I knew something was wrong with her—I just didn’t know what. I would take her to the doctor all the time for small changes: she was eating less, bruising without injuring herself, sleeping longer and more often. Individually, none of these symptoms are a big deal. Collectively, they can be indicative of a more serious, underlying medical condition. I was told, “All of these symptoms are normal for Marissela’s age, so relax and stay off WebMD, Mom!” I often left her pediatrician’s office feeling very patronized.
That August, when Marissela was 14 months old, she came down with a high fever that just wouldn’t go away. It lasted a total of 11 days. During that time, I brought her to her pediatrician’s office almost every other day. I also took her to the ER at Providence in Everett. I shared the subtle symptoms I noticed and begged the doctors to do bloodwork for more information. They told me she had a virus and sent us on our way every time. I still hold a lot of guilt in my heart for not trusting my gut and pushing harder for answers.
On day 11, we brought her to the emergency department at Seattle Children’s Hospital. Marissela was rushed right back to a room. Once again, I told them about her symptoms and persistent fever. They really listed to every detail I shared with them. Within minutes, they had an IV started and had blood samples sent off to their on-site lab.
What Seattle Children’s did differently than every other doctor was very simple—they listened to our concerns and allowed us to participate in Marissela’s care.
Although Marissela’s symptoms were seemingly normal, they trusted our gut instinct as parents when we told them something was very wrong. They dug deeper, they looked for answers, they were willing to test further.
We couldn’t have been waiting for more than an hour before three doctors came through the door. They told us she had Very High Risk Acute Lymphoblastic Leukemia. The only way I can describe that moment is… as a scene from a movie. The doctors were talking but I couldn’t hear anything they were saying. I just dropped and held onto Marissela because the entire room was spinning. I started screaming, “No, she doesn’t have cancer! That’s cancer, right? I don’t want my baby to die!” I could feel my heart in the pit of my stomach. The only thing I could hear the doctors say was, “This is one of the best pediatric oncology hospitals in the world—Marissela is safe now.”
I later found out that, at diagnosis, 95% of Marissela's White Blood Cells were Leukemia cells. Her blood counts were so low, it was a surprise Marissela was still conscious, as it appeared she had a serious blood infection.* (See note below). The first of nine rounds of chemo started the moment Marissela was diagnosed. Nurses rushed in minutes behind the doctors with antibiotics, chemo, and bags of blood products.
We thought that was THE worst day of our lives, but there were 845 more to follow.
Chemotherapy was worse than cancer. Sometimes, she was in so much pain that she would scream out, “Help me!” The nausea and vomiting never seemed to end. It was hard for me to give her baths at night. You could just see every bone in her body; she was so skinny. Tears would roll down my face and I would have to smile at the same time. I didn’t want her to think she did something wrong.
(Above) At the Peaks of Life Gala, Kayla holds up a 42-foot long string of beads to represent all the treatments Marissela has been through. Forty-two feet. That’s about the height of a Brachiosaurus, the Hollywood sign, or (as Kayla notes) seven men (about 6 feet tall) laying in a line.
Beads of Courage & Child Life at Seattle Children's Hospital helped Marissela own her story through a record of beads. Every single bead given to her represented a treatment milestone. Every bead represented her strength and fire for life. She earned a total of 1,386 of them! The beads are less than one centimeter; strung together, they measure 42 feet long.
Marissela was supposed to go into remission after the first month of chemo, but her cancer was so aggressive it took around four months. On December 23rd of 2015, we finally received the news we were waiting for: there was no evidence of cancer in her blood or bone marrow! She was in complete remission!
As hard as her treatment was, I can say that Seattle Children’s made sure we had everything we needed and that our family was able to stay together. They kept her as comfortable as possible, allowed us to stay in her room with her and explained everything to her (and us) in a way that was easy to understand. We felt included in her care every step of the way. I’m sure there were days that I would ask the same question multiple times. They went over every question we ever had in great length. Her team of about 20 doctors, nurses, and therapists was extraordinary. They saved our daughter’s life.
Marissela's treatment has felt a lot like climbing.
There have been moments with so much ahead of us that we felt defeated. Moments where we were close to the end of treatment, and looked back at where we've been in disbelief. Now, after 845 days, Marissela has finished treatment we are looking back, wondering how can we help other families still on this journey make it to the end.
Marissela has a lot of catching up to do developmentally. For so much of her life, her energy has been spent on fighting this beast. Day by day, her life is getting back to normal though. Some of the things she loves: tacos, princess dresses, playing pretend kitchen, stickers, coloring, and (best for last) old school rap music. I used to pray that I would just be able to see her walk and now she is running and climbing on everything! She is incredible!
I don’t know what the future holds for Marissela. We are just starting to learn about some of the long-term damage chemo has done to her body and she is still at very high risk of relapse. What I do know is that Seattle Children’s is a short drive away. That makes us feel safe. It allows us to live normally in the meantime.
Marissela’s mother, Kayla, has shared this story in order to give others hope and insight into how to endure such a challenging fight. Though Marissela’s future is unknown, the unknowns are filled with hope and strength through Marissela's fighting spirit and the local team at Seattle Children’s Hospital.
*More Information: When leukemia cells outnumber the mature white blood cells in the body, patients are in an immunocompromised state and often become septic (blood infection). Additionally, the red blood cell count often times drops quite low, leading to hypoxia (low oxygen), thus patients are prone to losing consciousness. The above information was reported by Marissela's mother, Kayla, with her consent.
Special thanks to Kayla Orejuela for sharing the photos and Marissela's story. The Peaks of Life team is sending you and your family love and continued strength as Marissela grows.
Hearing patient stories like Marissela's drive us at Peaks of Life to climb higher, reaching new heights in our fundraising goals so all children can access quality care at Seattle Children's. Please stay tuned next month for details on the uncompensated care fund, and why it's important to patients like Marissela.