What do you do when your biggest fear comes true? It’s a reality that so many parents of children who have blood cancer face.
The shift is abrupt. One day everything is fine. Your child is a living, breathing reminder of everything good in the world—and then cancer happens.
You don’t know when it started but it’s here. Your world flips upside down and you find yourself gasping for a breath you can’t quite catch.
It’s like a free fall. You’re reaching for your parachute, praying it opens in time to save you, your child, your family. And then the unthinkable—you find yourself bracing for impact as the inevitable creeps closer and closer.
Your child is gone. Too young. Too soon.
The pain is incomprehensible. Parents aren’t supposed to bury their children. Yet, so many have, like Katie and Mike Wayner.
Leukemia claimed Phil’s life just as it was getting started
Katie and Mike’s son, Phil, turned 3 on October 30, 2019. “Phil was both sweet and wild, shy and outgoing,” she reminisced. “His sweet-natured personality shined from the start—he really was such an easy-going baby.”
“He had a bit of a shy personality, watching others before jumping in, and could be described as quiet—but around those he knew well and loved, he was a wild and silly toddler.”
Phil was special. He loved helping his dad cut the grass, playing outdoors, and being a big brother. He kept Katie and Mike busy, but in the best way.
Two months after his third birthday, Phil was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL).
For kids Phil’s age, the prognosis for B-ALL is usually optimistic. 90% of kids younger than 15 survive for five years or more, so while his diagnosis was scary, there wasn’t any need to prepare for the worst.
Phil began treatment shortly after his diagnosis, always in good spirits.
“I don’t think Phil had even taken a round of antibiotics before his diagnosis! So taking medicine and complying with medical procedures and treatments was a completely new world,” Katie recalled. “But Phil did all that he was asked—with a little bribery and encouragement of course.”
Doctors prescribed a 2.5-year-long treatment protocol for Phil. He reached remission, but his cancer recurred in January 2022 just two months before his protocol was supposed to end.
Eight months later, he was gone.
“Some days, I still struggle with the reality that we will never understand why this happened.”
Grief overwhelmed Katie & Mike after Phil’s passing
“It’s hard to put into words what my thoughts and emotions were as Phil’s journey was drawing to an end. It’s hard to put words to situations and experiences that leave others speechless.”
Phil was in treatment from the time he was diagnosed until he passed away. When Katie and Mike learned there was nothing more the doctors could do to help their child, they were in disbelief.
“When we heard the words ‘there’s nothing more that can be done,’ I questioned if that was really it. Did we really just go through all that we did—did Phil really go through everything he did—to simply be told there’s nothing else to be done?”
As worry about Phil’s prognosis and his comfort consumed his parents, they sought out resources to help them through this unimaginable experience. They had so many questions.
Why had Phil’s cancer turned terminal?
What do you say to a five-year-old who’s dying?
Will Phil’s younger brothers remember him?
How can a parent survive after experiencing such a devastating loss?
While some of these questions remain unanswered, Katie and Mike received support from a multitude of sources during Phil’s treatment and after he passed.
“I believe I learned about The Dare to Dream Project after Phil’s relapse,” said Katie. “When I learned that there was a whole project, a whole mission, focused just on children and blood cancer, I was a bit overwhelmed with gratitude, and felt less alone in this childhood cancer world.”
Phil’s social worker encouraged Katie to apply for a transportation grant from The Leukemia & Lymphoma Society (LLS), at which point she learned about other resources. They received the funds, which helped them transport Phil to a different healthcare facility four hours from home.
After receiving the grant, a LLS patient and community outreach team member connected with the family to offer support. This was on the heels of learning that Phil most likely wouldn’t survive his diagnosis.
“She became an ongoing support through our end-of-life questions and needs, and even connected me with another parent who was involved with LLS and had unfortunately lost her daughter to leukemia too.”
“I felt less alone and I have LLS to thank for that.”
Coping with complex feelings after losing a child
Parenting a child who has blood cancer is an experience that changes you forever. And losing that child causes inescapable pain that few people understand.
Finding your way after such a traumatic experience is daunting. Katie has a few suggestions to help other parents make it through.
1. “It’s okay to be ‘selfish’ and focus on you and your family.”
So many people loved and supported Phil throughout his cancer diagnosis and treatment. As Phil deteriorated, Katie was overwhelmed by their needs—but the reality was that their needs didn’t matter at that time. She switched gears to focus on Phil and her immediate family.
“Putting your child, other children, and spouse first is the most important thing in surviving a situation like this.”
2. Do not compare your story with someone else’s.
When Phil’s cancer returned, Katie searched high and low for stories of kids whose leukemia had recurred. She even connected with other people on social media who had similar experiences. In her words, it was helpful... until it wasn’t.
“Each child’s disease is so unique and therefore it responds differently to treatment. It was exhausting trying to find stories that matched Phil’s because the reality is that there is none.”
3. Try not to question your choices and decision making.
Hindsight is 20/20, so it isn’t fair to question decisions you made with the information you had at the time. Rest assured that you made the best choices you could for your child’s treatment and let go of the things you can’t control.
“Trust that you know your child best, and that you made the best decisions for him or her.”
4. Your feelings are valid, whatever they may be.
It isn’t unusual for parents to experience unexpected feelings after losing a child, especially after a long and traumatic cancer treatment. In Katie’s case, she felt relief once Phil passed, and then the guilt kicked in.
“For weeks, I felt awful. As time allowed me to process and heal, I realized that I had spent the last 8 months living Phil’s relapse in complete uncertainty and terror. When Phil took his last breath, that uncertainty stopped too.”
5. Don’t be afraid to ask for what you need.
In the wake of a loss this devastating, there are so many people who want to help and support you—they just don’t know how or when. Make sure you voice your needs to those who care, whether that’s time and space, a home-cooked meal, or a child-free evening to process big feelings.
“Unfortunately, it becomes our responsibility, in some ways, to help others understand what we’re going through so they can better help us.”
6. Loving your child is the best gift you could have given them.
“Your child may have endured hard things and experienced pain and suffering, but they were happy because you were present and you loved them.
I know Phil was happy. I know he knew how much we loved him. Despite everything he endured, everything we endured together, Phil knew that we loved him with all that we had. He knew that we would always be there with him. That is truly what matters most and that has given me comfort through this all.”
7. Try to remember the good.
Childhood cancer takes so much from everyone—your child, your family, and you. But there are still good experiences and memories in between the pain and trauma you and your family endured.
“I often find myself thinking back on the many beautiful memories me and my husband made with Phil while in the hospital. I may have grieved, and am still very much grieving, the things lost because of Phil’s cancer diagnosis and the unfair path it gave us, but it also gifted us so much too.”
Phil’s legacy lives on
Five months after Phil took his last breath, his story continued. Katie became an LLS Dare to Dream ambassador.
“There was a whole group of people dedicated to changing the treatment and outcome of kids with blood cancer and I was eager to join them.”
It was tough transitioning back into the world of childhood cancer after losing Phil, but Katie knew it was her calling. She needed to continue in Phil’s honor in an effort to save other kids.
But she didn’t stop there. She and Mike have woven Phil’s legacy into many different events and other efforts.
In October 2023, Katie and Mike hosted their first annual Phil’s Ultimate Golf Outing. Phil loved playing golf—he even had his own set of golf clubs—so it was the perfect way for them to honor him and raise funds for Dare to Dream.
This year, their family has hopes of purchasing video game systems for their home hospital. “Phil was often in isolation while at the hospital. When we transferred his care, the new hospital system had gaming systems that could be brought and placed in your room. My husband and I enjoyed watching and playing with him, so we hope to be able to give back to provide kids with fun while being stuck in the hospital.”
Katie and Mike have also begun donating blood at regular intervals. They know how big a difference it made in Phil’s care and want to help do the same for others.
“My husband and I will continue to donate blood products as often as we can in honor of Phil because it is a simple act of kindness that is life saving.”
Join Katie in supporting The Dare to Dream Project. With your help, we hope to help kids like Phil survive and thrive in the face of blood cancer. Learn how you can get involved today.
