Elizabeth Lyons, MD, is a primary care doctor at UVA Health. For a while, though, she wasn’t taking care of patients. She was taking care of her 5 year-old-son, Colin, who had leukemia.
It’s been several years of turmoil since Lyons learned her son had cancer. Now, on the other side of it, she reflects on all the things she had to face.
When you first learn your child has cancer, you may feel like you don’t know what to do. Here’s some answers.
1. Accept the Lack of Control
“I think the hardest thing at the very beginning was the loss of control,” Lyons says. ”When Colin was first diagnosed, I was shocked. But then I thought, 'There's going to be a roadmap, and I can plan out our life.'”
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That was her plan, at least.
Leukemia treatments do often fall into something of a planned sequence. Doctors can map out the weeks and months of chemotherapy and set a general timeline leading to the end goal of remission.
But, as Lyons discovered, cancer doesn’t follow directions very well.
“You’ll probably have complications and hospitalizations,” she says. “You kind of have to bounce through one day to the next without necessarily knowing what's coming.”
It took Lyons a long time to accept this lack of control. “But accepting this made it easier,” she says.
2. Figure Out Who’s On First
“In a lot of childhood cancer families, one of the parents ends up losing their job,” Lyons explains. That’s because, even if you don’t have to travel far for treatment, your child may need appointments and care at times and days that no one can predict.
This isn’t easy to face, but Lyons advises parents to talk to their employers and be realistic.
Most people can’t afford to quit their job. “You’ll have to have multiple contingency plans,” she says. It will be important to figure out who will be the main caretaker of your child, or who will be on the team of caretakers, as soon as possible.
3. Lean on the Child Life Specialists
It’s hard to see your child suffer. “And the stuff that you have to give your child to cure them from leukemia is also trying to kill them,” Lyons notes.
Some kids have allergic reactions to chemo; others lose feeling in their fingers and toes. Chemo can hurt other parts of your child’s body.
Chemo “destroyed Colin’s relationship with food,” Lyons says. “He stopped eating the second day of radiation.” She found herself learning how to feed Colin with a feeding tube.
Child Life specialists can help your child survive cancer treatment as well as the cancer itself.
“They're amazing,” Lyons says. “They’ve done everything in the world with him, from helping him with IVs to helping him take his first pills.”
They also decorated Colin’s room when he had a relapse with Pikachu and a huge Pokemon poster. “We love Child Life services,” Lyons adds.
4. Talk to the Hospital Social Workers
“You should probably talk to a social worker when your child is first diagnosed, because there are resources that you're probably not aware of,” Lyons says.
“Definitely ask,” she says. One thing she didn’t know: “Kids with cancer actually qualify for Medicaid as their secondary insurance, even if you have a primary insurance, and that can sometimes be helpful.”
5. Find an Advocate in the School System
Lyons suggests finding out what resources your school has right away.
She was grateful for her school’s assistant principal. “He made sure that his best friends stayed with him every year. Now every time he goes back, he has people he knows.”
Lyons also discovered that her son automatically qualifies for an IEP and a 504 because he has a pediatric cancer diagnosis. These plans allow for support people to get involved in a child’s educational needs.
6. Keep Your Kid Connected
Having a child with cancer can be isolating for the whole family. To avoid infections and keep Colin close to his doctors, the family mostly stayed home together. “We’ve had to be so careful,” Lyons says. “I mean, we were isolated even before the pandemic.”
“Figuring out a good way to stay connected with friends ahead of time is really helpful. Colin and his two best friends play Minecraft on Nintendo Switch so that they stay connected.”
7. Don’t Ignore Your Other Children
Your child’s cancer will naturally take the spotlight in almost every situation. The result is that siblings, Lyons says, can be “overlooked.” Although, she adds, “This is all he's known, is his brother living with leukemia.”
Her recommendation? Find an organization, like Alex’s Lemonade Stand, that offers support for siblings of kids with cancer. “They have a good way to make siblings feel good about what they do,” and to feel the role they play within the family has value.
8. Find Support for Yourself
In-person support groups aren’t always available or practical when you’re balancing your child’s cancer treatment with the rest of your life.
Lyons felt lucky to connect with a Facebook group, Momcology. “It’s really helpful,” she says. “There are all diagnoses, and there are people whose kids have been off treatment for a really long time. And people have so many different experiences and are just so helpful.”
9. Make Self-Care a Priority
For Lyons, getting a break or taking a vacation wasn’t doable. She’d already exhausted her parents, and there was no way she could relax away from Colin, wondering if he needed her.
Plus, “we didn't know if or when he’d end up in hospital. So you can't go to the beach because none of the beaches are close enough to a children's hospital.”
Instead, self-care for Lyons was running and what her sister called, jokingly, “closet yoga.” Taking short breaks for exercise and quiet gave Lyons a flexible outlet to re-energize.
Lyons needed this way to refresh to help her kid, too. “The calmer and less scared we are around our kids, the better,” she says. With her kids, she tries to “breathe into them that they're going to be safe. Make sure they know, we're going to make sure he's going to be safe.”
10. Prepare to be Amazed
”My son has been amazing through all of this. He is probably the strongest and bravest person I know. And all moms of kids with chronic illness say this.” And Lyons knows that every single one of those moms is right.
Every single word she said was spot on! I loved knowing that even the hard things, such as letting go of control, were correct and made me feel more sane for feeling them.