Supporting Parents of Children with Advanced Pediatric Cancer

By Jonathan Wall, Co-Founder and President of Zach’s Bridge

There is a huge gap in the mental, emotional and social support available to families facing the late stages of a child’s cancer. Parents and other caregivers often feel confused, lost and all alone. That was certainly true for my wife and me. And while nothing can make losing a child an easy experience, peer support, from experienced, trained mentors, can help.

Our Family’s Pediatric Cancer Story

We never imagined it could happen. But there we were. Our 15-year-old son, Zach, was diagnosed with metastatic osteosarcoma, an awful form of bone cancer.

His prognosis of five-year survival at the start of his battle was 20-25%, and the odds just kept getting worse. First, the only way to cut his primary tumor out of his body was to amputate his left leg above his knee. Then it turned out the number and complexities of the metastases on his lungs made lung surgery impossible. Next, his cancer treatment nearly killed him and put him in the ICU.

On June 19th, 2021, we were told there is nothing more that could be done for Zach. Little did we know we only had 139 days left with him. After a valiant, but short battle of 10 ½ months, Zach passed away on November 5, 2021. He was just coming into his own as a young man, and instantly, he was gone.

A Lack of Support for Parents of Children with Advanced Pediatric Cancer

That time, those 139 days, were obviously the most important and precious time we had, and will have, in our entire lives. We tried to do everything we could to prolong his life, keep him comfortable, and cherish and enjoy each moment. But during that time, we had so many questions.

These weren’t questions that could be answered by our medical and therapeutic team. They weren’t questions that any parent should ever have to ask. They weren’t questions that we even wanted to find answers to, but we needed to.

Questions Parents of Pediatric Cancer Patients Ask at End of Life

What were these questions? As our son, Zach, approached the end of life, we needed to know:

• How could we find someone who could identify with the anticipatory grief, the fear and terror of it all, and just understand and listen?
• How and when should we use palliative care and hospice?
• Why is autopsy and tissue donation so important, and how can we ensure it happens?
• What is the experience of the end a child’s life actually like?
• How can we honor our child?
• What bereavement resources exist to help us?
• And so much more.

And these weren’t just my questions to find answers to. It turns out that countless other bereaved caregivers had the same exact questions. They also searched for answers but had a hard time finding them.

Why Is There Little Support for Parents of Kids with Advanced Pediatric Cancer

Now you may be thinking why didn’t our care team (and those of other families too) help us with these answers. I believe there are three main reasons medical teams do not always meet the needs of parents of terminal pediatric cancer patients.

• Addressing the likelihood of death with a family is extremely tough, even for highly experienced professionals. Many bereaved parents we know weren’t even explicitly told that their child was not going to survive. So many medical professionals have historically shied away from this area.
• The medical teams especially are oriented to treatment, and ideally a cure, for a child’s cancer. When that’s impossible, in general, the area between being informed your child is terminal and death is largely overlooked.
• Doctors and other medical providers don’t have real world experience they can share about having a child with cancer. They can only give you advice from training and research, but none of it is firsthand as a parent or caregiver. Their knowledge is just different and quite honestly, incomplete.

I’m certainly not criticizing pediatric cancer care teams. Far from it, in fact. These individuals have devoted their lives to trying to make the cancer journey better. And in general, they continue to do so. And grief counselors and other mental health professionals can definitely help. But there is still work that can be done to make the most important time in a family’s terminal cancer journey, the end, just a bit easier. There is still something unique about talking to someone who’s been there personally, a peer.

The Problem with Online Groups for Parents of Pediatric Cancer Patients

“What about the myriad of online groups for childhood cancer?” you may ask. The online groups serve a tremendous purpose, helping tons of childhood cancer caregivers. However, in general, they also do not really overcome this gap in support during the time before a child’s death.

• Online groups mean the visitor is relying on finding an answer to a question based on the luck of the algorithm. Is the right person going to log in at the right time and then see your post? And if you do get an answer, it’s not clear that the person that responds has training, or resources or help that is actually valuable. You might get AN answer, but you might not get THE answer.
• This is an extremely emotional, personal time for most caregivers and families. And let’s face it, posting your private questions and concerns in a group with many other people you don’t know might not, and most likely will not, feel right. Many people want a one-to-one match to be able to connect and discuss things.
• Last, while there are literally hundreds of public Facebook groups for childhood cancer, almost none of them focus on that time period between terminal diagnosis and death. And, unless I missed something in my research, none of them have individually trained, experienced peers for 1:1 conversations.

In the end, for us to make the most of the time we had left with our child, we needed answers directly from a parent that had experienced the loss of their child to cancer. We needed a peer mentor for support. And while 1,600 children in the US will die each year from cancer, it’s not always easy to find a match.

The Importance of Peer Support for Parents of Children with Terminal Cancer

I am not the only one who feels this way. A survey started in the fall of 2023 shows that if bereaved families had trained, experienced peers to connect with, it could have significantly improved that time they had left.

When asked, how could peer support have helped:

• 92% of bereaved parents of pediatric cancer patients felt peers would help find compassion, connection, listening and support.
• 88% of bereaved parents thought peers could help them understand hospice and palliative care.
• 86% of parents wanted peers to help with the time after their child’s death.
• 82% thought fellow bereaved parents could help explain what to expect as a child approached end of life.
• 80% of bereaved parents needed peers for psychosocial support.
• 78% of parents who lost a child to cancer wanted to know more about the important of tissue donation.
• 76% of surveyed caregivers felt peers could tell them about financial resources, and
• 72% of bereaved parents thought fellow parents could share resources to reduce stress.

Finding Help for Parents of Children with Advanced Pediatric Cancer

We miss Zach every day and felt, from the first days after he was gone, that we needed to do something to make the journey easier for others. We wanted to turn our grief into action because it gave us a purpose and a way to get out of bed. We know that’s what Zach would have wanted.

And as we thought about what to do, we kept coming back to the feeling that there was a giant hole in the care we received. The one area where we felt we were pushed off a cliff, plunging into darkness without any ropes or help, was trying to find parents that had gone through the hell we were facing – coping with the impending death of a child due to cancer.

So based on our experience, my wife and I started a new nonprofit, Zach’s Bridge, that specifically helps with this problem. Zach’s Bridge matches parents and caregivers with experienced, trained peers to help with these late stages and provide 1:1 compassion, listening, support and guidance. And we want to help you!

If you are part of a family facing an advanced pediatric cancer diagnosis, or a bereaved parent, please reach out.

And if you are a doctor, nurse, therapist or serve another role in a hospital, nonprofit, or palliative care or hospice agency, we need your help. Please consider raising the need for this service and referring the families you serve. Overcoming this gap requires your help in changing behavior and bringing this need to the forefront. If you would like us to speak to you or your team to share more about Zach’s Bridge or determine how we can collaborate, we’d love to hear from you.

You can connect with me to share your questions, feedback, and ideas at jon@zachsbridge.org. Or learn more about our organization at www.zachsbridge.org or on Instagram or Facebook.

Together, we can do better together. Together, we can help grieving parents cope.

**Statements on this blog reflect the author’s personal opinion and do not represent the views of Ryan’s Case for Smiles. They are also not to be viewed as personal medical advice, but rather for the purpose of general knowledge. The reader should speak to their healthcare team, or their child’s, for medical advice.**

About the Author: Jon Wall is the Co-Founder and President of Zach’s Bridge and father of Zach, who passed away at the age of 16 in 2021 from a form of bone cancer, Osteosarcoma. He misses Zach every day. With the desire to make the journey easier for families that face childhood cancer, Jon is motivated to honor Zach’s legacy by telling Zach’s story and sharing all the insight he learned from Zach.  

Jon has worked for a range of software firms in leadership roles covering strategy, marketing, partnerships and growth. He is currently the Senior Vice President of Partnerships at PrismHR, who he has helped grow 6x since starting there in 2015. He serves on the Pediatric Patient and Family Advisory Council (PPFAC) at Dana-Farber Cancer Institute and helps lead a support group for pediatric cancer dads – Dadcology. Jon holds an MBA and MIM from Washington University in St Louis and a BA from Bates College.