When Cayla first got diagnosed, I felt like Atlas trying to hold the world up and together.
We didn’t know any children with leukemia. The only exposure to childhood cancer we had was a little girl named Kaylee from our hometown. Kaylee, just like Wes, had neuroblastoma. Leukemia and neuroblastoma are not the same.
When Cayla first got diagnosed, I was pretty positive my daughter was going to die. One of my great-grandmothers had had leukemia, she died. Because that’s what happens with leukemia, the adult patients normally die. I spent the first couple of weeks in denial. Everyone asked me what they could do. And I would smile and say, “Nothing. We don’t need anything. We’re okay.”
I spent the next couple of weeks looking for other parents, asking the social worker if there were any networks, peer-to-peer groups for the parents. The best she could give me was an online peer group for adult patients. She said maybe I could look through the posts and possibly find other parents. But I never checked. Because there is nothing anyone could do. My baby had cancer. I couldn’t find blogs from other parents that would explain what I was about to embark on. Sure there are blogs written by parents out there, but most of them are by grieving parents whose kids have passed on or just offer sugar-coated updates on their child. Nothing about their self. Nothing about what they were going through, or what to expect.
As the weeks progressed and became months, still the question was asked, “Do you need anything? Can we do anything?” And I would smile, and still say, “Nope, there’s nothing. We’re good.”
We were fortunate to have the support of my hometown community behind us. In much the same way they did and still do for Kaylee, our community tried to help. A dear friend of the family organized an online auction. Most of the items donated and even sold were from people I had gone to high school or boot camp with. People who knew ME and couldn’t imagine being in the same situation. And because of their generosity, and the small town family feeling, they raised more than enough money to help cover Cayla’s medical bills for those first couple of weeks. And I sat down and cried. Because I thought there had been nothing they could do to help.
But they did help.
A little bit later, my dad’s best friend and his wife organized a #CaylaStrong 5K run/walk. They didn’t ask, they just did it. Because before that, whenever they asked, I’d say, “There’s nothing you can do, we’re good.”
I remember the first week that Cayla was in the hospital. The week when we found out that she had leukemia. I remember the emergency blood transfusion because her hemoglobin was a 3.1. (The normal range hemoglobin level for a child is between 11-13.)
I remember clear as day hearing my dad say if an adult’s hemoglobin was that low, they’d be dead already. And I can remember his surprise that Cayla’s had gotten that low. And I remember being asked, “Is there anything I can do?” And I’d shake my head with a brittle smile and say, “No, I’m okay. There’s nothing.”
That first week was tough – the shock of it. But I really was okay. Probably because of the shock. There were a lot of people there. My aunt even drove six hours to be there, so I didn’t have to be and could go get some sleep. And I remember going into work the day after the diagnosis, and being so shocked and confused and telling my supervisor my daughter had cancer, and then finally after 48 hours of being in a hospital, I cried on her shoulder. She patted me on the back, and asked, “What can we do?” And I answered, “There’s nothing. I’m okay.”
They gave me a week off and didn’t count it against me.
Cayla has spent a lot of time in the hospital this last year. We know all the nurses and staff members. And I remember, the first time I was there by myself, just me and Cayla. The Child Life Specialist came by with a volunteer and asked if I wanted to step out for a minute and the volunteer would be more than happy to sit and play with Cayla. And I smiled and said, “No, there’s nothing else I need to do.”
Five minutes later, our nurse came in and told me I was going for a walk, and the volunteer would sit with Cayla. I left the room and walked down the hallway a little bit, then sat down and cried.
In August, Cayla had a blood clot as well as an infection, and was borderline septic. We lived in room 802 for over a month. And every day, someone would ask me, “Do you need anything? Can I get Cayla anything?” and I would say, “No we’re okay. There’s nothing.” But still, the balloons and the gifts and the visits and the time for me to get away still came.
The week after she was discharged, Cayla was admitted again. It was a routine admission, this part of her treatment required high does methotrexate. Cayla almost died. I remember talking to my mom and telling her it was okay, Cayla was just having a little trouble with the medicine but the doctors would be able to handle it. And that she and I were fine. There was nothing my mom needed to do. And then I sat down on the curb beside my car and I cried. Because subconsciously I knew my daughter was dying, and there was nothing I could do.
A couple of months later, a local high school student reached out to me. She wanted to organize an event for Cayla as part of her senior project. I told her that’s okay, there was nothing we needed. My sister works with her and the local high school hosted a Color Run 5K for Cayla. Once again at the end, I sat in my car and I cried.
This whole time I’ve always told everyone that I didn’t need anything, and there was nothing they could do. That. Was. A. Lie.
As parents, our first and only thought during this time is our kid has cancer – they come first. And so many parents don’t do anything that doesn’t revolve around their child. But what most of us forget is you can’t take care of your kid without taking care of yourself.
Accepting help or asking for help is not being weak. There’s always something that you could use or something your kid could need. Asking is how others show support. Because they don’t know what else to do. “Nothing” is the lie you tell yourself so you don’t have to admit that you’re afraid, you’re overwhelmed, you’re stressed out, you have hospital-fever, and that if you have to sleep one more time on that hospital chair you’re gonna become the local chiropractor’s best friend. Just let people help.
The older lady from the church down the road? Let her sit with you. Let her pay for you to go on a mother/daughter retreat – even if it’s to a camp with different beliefs than your own. Because she’s trying to help in the only way she knows how, and a change of scenery may be good for you both. The old co-worker that you don’t talk with much anymore offers to bring you food – let him. You know you’re tired of eating hospital chicken nuggets and Papa John’s pizza. And when the volunteer knocks on the door and asks to come sit with your child, let them. And go take a shower. Because three-day old clothing starts to feel itchy after a while. When the community wants to help, let them.
Don’t feel guilty for thinking about yourself. For taking time to process and understand what your life is now. Because nothing can change it back.
The thing I’m most grateful for, looking back now, are the volunteers. To my non-parent readers, this is the best way to help out. Even if it’s just once a month, go to your local children’s hospital and spend some time volunteering. Because that Dad might not need a shower, but instead he may need some time to be alone. Tell people about local organizations that help monetarily, or offer to organize a color run. Or even just offer to listen. The parents often deny themselves any comfort because they just don’t think about it. So remember, when you get told “nothing” it actually means “help me I’m drowning, and I don’t know how to say it.”
For more information and ways that you can help, check out the HOW YOU CAN HELP page.