Age: 14 Diagnosis: Embryonal Rhabdomyosarcoma Favorite Things: engineering, skiing, and computers Meet Isaac, an easy-going…
Diagnosis: Standard Risk B-Cell Acute Lymphoblastic Leukemia
Age at Diagnosis: 3
Favorite Things: Paw Patrol, Mario Bros, or Lightning McQueen
Meet Kyler, a witty and outgoing three-year-old who loves anything Paw Patrol, Mario Bros, or Lightning McQueen. His bright smile and charisma instantly light up any room, and his wild imagination keeps his family guessing. Kyler’s favorite days are spent golfing with his family and being silly with his two older siblings, Nolan and Ana. He is his family’s absolute joy.
This past February, Gaby, Kyler’s mom, noticed petechiae on the top of little Kyler’s hands. Petechiae are pinpoint-sized brownish purple spots that form due to bleeding under the skin. Gaby called Kyler’s pediatrician for an appointment but couldn’t get him in that day. When he spiked a high fever that evening, she began googling his symptoms: petechiae, unusual bruising, high fever. She felt incredibly unsettled when information about blood disorders began surfacing in the results.
That night, Gaby made the decision to bring Kyler into urgent care where the doctor urged them to go and get a comprehensive blood test that evening. With a pit in her stomach, dreading what could lay ahead for their family, Gaby and her husband, Dan, brought Kyler to Children’s Wisconsin. After waiting 2.5 hours for results, a doctor entered the room with the news that would change their world forever, “Kyler has cancer.”
After a sleepless night, they received Kyler’s official diagnosis, Standard Risk B-Cell Acute Lymphoblastic Leukemia. From there, a whirlwind— binders of information, medical terms, warnings of long-term side effects, a port placement surgery— and before they knew it, Kyler was receiving his first dose of chemotherapy.
This initial phase, Induction, certainly lived up to its reputation as the beast that it is- the toughest round Kyler would endure. Gaby explained that Kyler’s physical appearance and emotional state dramatically changed during this time. The steroids and therapy made him retain so much water that he could barely move or sit. Additionally, he developed “foot drop”, a common temporary condition experienced by children receiving chemotherapy for ALL. Kyler struggled to lift the front part of his foot so he would often trip when trying to run. He began having difficulty going up and down the stairs, and sadly, Kyler lost all interest in playing.
After that first grueling month, a very minimal amount of disease remained. Kyler did not go into remission as expected; and, instead, his initial diagnostic genetic test results came back revealing the IKAROS Plus (IKZF1) chromosome mutation in his blood. Since some studies show this mutation to be only responsive to chemotherapy approximately 40% of the time, Kyler was immediately moved from standard to very high risk. At that time, there were conversations about him potentially requiring a bone marrow transplant. Yet, there were still some considerations since Kyler had a very positive reaction to his initial chemo despite his high-risk mutation. Could there be another path forward that didn’t include transplant?
Kyler’s oncologist, Dr. Burke, began reaching out to his network of pediatric oncologists around the country, to see if others have dealt with a similar scenario. His outreach led him to find a patient in Atlanta, with several parallels to Kyler, who was experiencing positive progress under his adjusted chemotherapy regimen.
A group decision was made to increase Kyler’s chemo during the Consolidation phase to hopefully knock out his last remaining leukemia cells. Even so, Kyler’s brother and sister were tested to be donors in case the chemo failed and a transplant was ultimately needed. But soon, Dan and Gaby received the awful news that their children were only half matches for Kyler. Even worse, he had no matches in the Be the Match Registry. During this time, Kyler’s family chose to stay positive and hopeful that the chemotherapy alone would get him into remission.
In late May, Kyler spiked a fever while receiving a blood transfusion. Since he was neutropenic—having a weakened immune system— protocols required him to be moved to the HOT unit for observation and cultures. During this stay, he began experiencing a great deal of belly pain. After several tests failed to offer a clear cause of the pain, the decision was made for Kyler to undergo an exploratory surgery that would include the removal of Kyler’s appendix, typically one of the first organs to get infected due to chemotherapy. Thankfully, no other complications other than appendicitis were discovered during the surgery.
This 8-day hospital stay was incredibly tough for Kyler’s family, but they continued to remain faithful and grounded through adversity. As Gaby said, “Most people do not choose to be strong; sometimes that’s the only option they have. You just keep going until you are through it”. And get through it they did, with support from family, friends, and an incredibly caring community.
During Kyler’s surgery, a bone marrow aspirate was administered to check in on Kyler’s burden of disease. Dan and Gaby were more than ready for good news when they finally heard the life-giving words, “There is no disease present”. Kyler’s parents are pleased to report that their little guy has officially been in remission since June. And thanks to Kyler’s doctor collaborating with pediatric oncologists across the country, Kyler was able to achieve remission without a risky transplant.
Kyler will continue receiving high dose chemotherapy through mid-November and will then move into the “delayed intensification” phase, a more intense round of chemotherapy. Anxiety fills Kyler’s family with each new phase in treatment but, for the time being, they are taking things one-day at a time and choosing to be present. They are taking advantage of Kyler’s high energy and making lasting memories together as a family.
While Gaby and Dan are drained—living with the anxiety of so many possible outcomes, meeting the demands of a serious medical diagnosis, and providing the attention and support their two other children deserve—Kyler is just living his best life. Dan said, “When he wakes up, he doesn’t know what a good or bad day feels like, he’s just going to be himself that day. Older kids, they know what they are missing out on, but when a young kid goes through this, they are just happy for another day of fun…This is the worst thing to happen to a parent, facing the most feared thing. But then watching your child be more courageous than you could ever imagine, while you’re just hanging on, it’s inspiring.”
This family is staring down a long road of treatment. After delayed intensification comes Interim Maintenance II and after that is two years of maintenance- a total of 42 months of treatment. But they remain heartened by Kyler’s overflowing joy, the dedication of his oncology team, and the incredible support of a community that is eager to step in on behalf of them whenever needed.
Like every other parent in the MACC Fund Center, Gaby and Dan dream of a long, healthy life for their child, “that he can live every milestone that a parent wants for their child from age 2-92.” Let’s keep pushing for better treatments for our kids. They deserve long, full lives hitting every milestone they desire- graduations, first jobs, discovering their passions, first cars, falling in love, building a family of their own, and so much more. Our kids deserve the best.
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