I met Sarah Warner earlier this year at the RISE conference. Ten minutes into our first conversation, we realized were both from California (the conference was held in Los Angeles, but people came from all over the world); and Sarah asked if I could give her a ride home.
Despite the fact that I was raised to NEVER give a ride to strangers, I didn’t hesitate to say yes to Sarah’s request. (You can read a bit about our ride together and what Sarah taught me here.)
In August 2017, Sarah and her husband, Mike, lost their 12-year old son Billy to cancer. Sarah’s story is one of hard, unfathomable things. Things that no mother should ever have to endure. But her story is also one of strength, resilience and dignity in the face of extreme pain. September is Childhood Cancer Awareness Month. Over 15,000 children in the US are diagnosed with cancer every day. Nearly 1,800 children in the US will lose that fight each year. For as far as we’ve come with cancer treatment, we still have a long way to go.
Today, Sarah is sharing her story and her son Billy’s cancer journey. The outcome is not pretty, but Sarah and her family are making something beautiful of their lives despite the destruction that cancer has left them. This interview is very real, raw and personal; and it’s such an important read. Hearing statistics about childhood cancer is one thing. Reading someone’s personal encounter with the disease is quite another. I’m humbled that Sarah shared her story and her son Billy’s life with me and with all of you.
PS- If reading Billy’s story is triggering to you in any way, you might want to skip down to the last few questions when Sarah addresses how to love, help and talk to someone dealing with cancer and the death of a child. She also shares the best way to support Childhood Cancer research.
Jenn Prentice (JP): Hey Sarah, thank you so much for being here and sharing your story. Will you tell everyone a little about yourself.
Sarah Warner (SW): My Name is Sarah Warner, I live in Sonoma County, which is also known as “Wine Country” in Northern California. I’m mama to 2 boys, and I’ve been with my best friend for just shy of 20 years. We joke that his sister brought me home to him in high school. I’m a wedding planner who’s owned my own business since 2013. I also do part-time bookkeeping. This works really well for me because the hours never conflict. I get to take my kids to school and then go to work. Then I’m off in time to pick them up, and I start working on my business at night... Or at least that’s the plan.
JP: You and I had the opportunity to get to know one another at the RISE conference. We actually shared a ride home, and you so graciously shared your story with me. Can you share a bit of your story with the people reading this blog?
SW: Our family is big into Boy Scouts. In May 2016, we had just come home from a hike with Scouts, and I watched my son Billy (who was 11 at the time) undress so we could look for ticks. I noticed how angular he had become, and I asked him to step on the scale. He had gone down in weight to 74 lbs. He was 94 lbs in December.
We made an appointment with his doctor, who worked up some blood work and did a chest X-ray. Everything came back clean. We went back a week later and he had lost another 5lbs. More blood work and scans were ordered; and those came back clean too. So, we started a waiting game of getting into see specialists and other doctors. It was taking months, and during that time, Billy’s joints and abdomen started hurting. He didn't feel like eating. He was tired but managed to rally to go to school and scouts.
At the urging of my boss’s wife, on a Monday morning, I drove him to the ER at UCSF children's hospital. Within 6 hours, they were fairly sure it was cancer, they just weren’t sure what type. He was immediately admitted him into the hospital. They did a pet scan and found a tumor on his spine. They did a biopsy on it and confirmed that it was cancer--stage 4 neuroblastoma.
This is a cancer normally found in babies. Only 4% of diagnosis are in kids over the age of 10. Billy was 11. That Friday we started his first round of chemo; and thus began a very long, horrendous medical journey for Billy and for our family.
He did four rounds of chemo and had a reaction to every one of them. After four different chemos, they determined it wasn’t killing the cancer off fast enough. Som they started three rounds of antibodies. They told me those would be hard. They didn’t tell me that the first day, I would question everything about being a parent. I thought I signed Billy up to be tortured. While they try to find the right combination of painkillers and the correct infusion rate, Billy was having intense nerve pain; and just when I thought that was over, the swelling started. Again, Billy had reactions to EVERYTHING, but after three rounds, it looked like he only have one small point of cancer left.
JP: So, this was in November of 2016? And at this point, it was looking hopeful.
SW: Yes, in November 2016, he had major abdominal surgery taking out most of the tumor, his left adrenal gland and several lymph nodes. I didn’t know this would be the turning point. There was more cancer than had shown up on the MIBG scan, some of his cancer would only show on a PET scan. The surgery left Billy unable to eat more than just a couple bites, which was devastating because he was an adventurous foodie. This time we didn’t leave the hospital for a month, and then we only left for his brother’s birthday and Christmas. The around the clock care was just too much for us to do at home.
The next step was to do a stem cell transplant to kill off the remaining bit of cancer. With a stem cell transplant, the first step is a very rigorous chemo that kills your immune system—both good and bad--completely. The slightest cold could have killed him.
JP: So what did that mean?
SW: It meant a stay in the hospital for over a month. It meant not seeing his brother for six weeks. Unfortunately, the scans after transplant showed the cancer growing back; and we were forced to turn to palliative care and radiation to shrink and ease the pain of the cancer near his occipital, hip and back.
But this is what I need people to know: During Billy’s journey, every time he was discharged, we made the most of the time we had out of the hospital. We took trips to Southern California to visit family and have fun at Legoland and Universal Studios. We went to New York for a Make a Wish trip. We made Hawaii happen. He flew in helicopters and biplanes. He skydived indoors twice. He swam with dolphins, snorkeled with turtles, went to magic shows. He ate crazy things, rode in limos, camped in a safari, learned about science. He played games with cousins and played in the sand.
Billy LIVED! Billy pushed us to LIVE.
A few people didn’t understand why I “made” Billy go do all these things. They were actually mad at me for doing all the things we did. But I wasn’t dragging Billy to have all these adventures. When one was done he’d look at me and ask “Where are we going next?” He wanted to go to as many national parks as possible, and my community rallied to make these moments happen for us. IT. WAS. HARD. It was a lot of planning to travel with a sick child. It was terrifying to think I might need to take him to an ER I didn’t know; but I wouldn’t trade those memories for the world.
JP: Unfortunately, Billy passed away in August of 2017. You just marked the one year anniversary of Billy's death. I know you guys do a lot to keep his memory alive. Can you talk about that and what you did this August?
SW: Billy Died 10 days before his 13th birthday. Mike and I decided that in his honor we would have an adventure in that time frame every year. This year we went to New Zealand and had a Billy sized adventure. We went on a luge. My husband jumped off a cliff and swung with our monkey that travels with us as our Billy mascot. Shea (our youngest son) rode in a Shark scuba that jumps 18’ out of the water. We ate all kinds of fun things and tried doing new things. We learned about the local animals and even went to a Scout meeting.
JP: Can you talk about this past year. What has gone through your mind and your heart?
It’s been a really hard season. Starting in June with his friends graduating from middle school, and then, in the midst of his birthday and Angel-versary, those kids started high school. I’m so glad I get to see them doing that, but it also kinda rips my heart to shreds.
Too much has gone through my mind: How unfair it all is. How unlucky we were to get dealt this card but also how grateful we are for our amazing community.Things that you wouldn’t guess have been triggers. Shea broke his collarbone, and just going to the ER is like asking for a panic attack. I won’t go to San Francisco for networking events or really anything, because that drive just reminds me of going to the hospital and induces anxiety.
And then there are our friends who are still living with cancer. I know when they have scans, and I feel like I’m holding my breath for results. I’m overjoyed when those results come back negative, but I’m also sad that we never got that journey.
People tell us we need to go to therapy, but nothing can fix this. They don’t have magic tools to make this easier. Don’t try to fix us. Just be with us as friends. Listen. There’s this circle I shared to try to get people to understand what we are going through.
I don’t have it in me to console anyone but Mike or Shea--and even that is a stretch some days.
JP: What are some things that people said to you while you were dealing with Billy's illness that were or were not helpful? What are some things that people did that were or were not helpful?
SW: I found early on that I would tell my community what I didn’t need to hear. (Don’t tell me about your oils/diet.) We had a Facebook group, and I asked them to post jokes, cute animal stuff, or babies photos--all things that made Billy smile. It became a group people loved to go to smile, or so I’m told. Sometimes all I needed was someone to cuss with, someone to send an emoji so I knew I was heard.
JP: What about after Billy passed away? What are some things that people said or did that were or were not helpful?
SW: My friends who just sat in bed and watched TV with me were the best. Dinners that weren’t casseroles or bag salads were treats. Don’t get me wrong, I love casseroles. I just can’t eat that for a month. Friends who took/take my youngest son to school were amazing, because mornings are the hardest for me. Friends who understand that I want to be invited to do things but who also understand that I might cancel or cut out early because I don’t have the spoons (look up spoon theory) that day are also appreciated.
JP: How can people who are hoping to help with childhood cancer research get involved? What are some of the best organizations to donate to?
SW: There are so many ways to help:
Host a lemonade stand, benefiting Alex’s Lemonade Stand.
Buy gifts from organizations that give back like Love Your Melon.
Give blood. It is so needed. Nationally, there is a shortage; and kids like Billy really do need it.
Give money for your birthday. I personally love Family House San Francisco. it was our home away from home. We lived there for 18 months. I hate to think what it would have been like to try to get care so far from home.
My biggest platform: Give to your local research hospital. For us this means I want research money to go to UCSF pediatric cancer research.
Contrary to popular belief, St. Jude doesn’t take every child. They use protocols researched elsewhere. Don’t make families feel dumb for not going there. I had a well-meaning friend of the family try to tell me I should move Billy’s care there, so we didn’t have to spend so much time fundraising. My friends were the ones fundraising. Being states away from our family would have been exponentially harder; and there were no open trials for Billy’s cancer.
Finally, more than just research, you can give money to camps like Camp Okizu where oncology kids, siblings and families can go and have the emergency care they might need and be around others who understand the lingo and emotions is huge. Especially for the siblings. They get the short end of so much. Their parents are often gone for so much. Their sick sibling gets all these cool gifts and trips, meanwhile their world has been turned upside down. I’m glad Shea gets to go to this camp.
JP: Sarah, I can’t thank you enough for being willing to share your life with me and everyone reading. I have one last question: At the end of your life, what legacy do you hope you leave behind? What do you think would make Billy the most proud?
SW: At the end of my life I want people to say I was a good friend and I want my son to know he was loved. I want him to know how to live in the moment and to be kind because you don’t know the journey someone else caries in their hearts. I want my Scouts to remember my love for my boys, and my dedication to having an adventure.