June 30, 2014 | by Roberta Nichols
John Cloer was three months shy of his third birthday in 2004 when he was diagnosed with acute lymphoblastic leukemia. For the next three and a half years, he received chemotherapy at City of Hope, finally obtaining long-term remission.
His parents Bill and Gina, along with John and his younger brother Steve, recently sat down to reflect on that experience, sharing tips for family members and friends of children with cancer and now, their advice for parents facing a similar challenge.
In this second of a three-part series, they answer the question:
How can parents help their children with cancer?
1. Numb the pain. Perhaps because he still remembers caregivers frantically trying to start an IV in him the day he was diagnosed, John still dreads IVs and injections. The Cloers now ask nurses to use lidocaine to numb a site before the needle goes in. (They pay for this off-protocol request, but find it worth the costs.)
In the early days of John’s illness, the tense toddler used to “rub the rubber right off his pacifier,” said Bill. “I wish we had had a better tool set to manage his anxiety,” he added. Gina regrets they didn’t get John into the habit of meditating before procedures, “a coping skill I wish he’d have now.”
2. Provide distractions during difficult treatments. “We let John just plug into movies all the time, which was helpful,” said Gina. Looking back, “I probably would have made a bigger emphasis on books for escapism and not just movies."
"I think people now have a really big fight on their hands with iPads and videos. Don’t let kids just ‘game away’ their time,” Gina advised. “It’s an easy thing to slip into.”
3. Know the importance of water, fiber and fast-food detoxing. When children are fighting nausea during treatment, parents are encouraged to let them eat whatever tastes good to them. “I think that can create difficult patterns for kids [who later may struggle with weight issues], but John was able to shift away from that,” said Gina. “We were always very pleased that John is as lean as he is.” Although John developed a taste for Happy Meals, once treatment was over, “we detoxed him from fast food."
During treatment, "parents should make sure kids drink a lot of water, and eat a lot of fiber,” reminded Gina. “During some treatments, there’s a horrendous side effect of constipation so give them oatmeal, and Metamucil in their juice.”
4. Create a healthy routine you can follow. To ease the transition home, create a daily routine you can follow, incorporating rest, food, water and exercise, advised Bill.
At first, the Cloers were on virtual lockdown. “We didn’t really open up the house to friends,” he said. To keep John’s mood positive and his energy level up, naps were an imperative. “We’d call it ‘relaxation time’ so John didn’t feel the pressure to fall asleep,” said Gina.
“We’d turn the telephone ringers off, create a comfortable environment, play relaxing music; the same music every time so your child’s body knows it’s time to transition into rest," she said. "Protect that time because your kids need much more rest that they normally would.”
5. Learn how to keep medications down. One of the most difficult periods for the Cloers was following John’s first hospitalization, when they had to give him three doses of steroids a day. “He used to love guacamole, so we mashed this thing and put it in guacamole,” said Bill. “He threw up. It would literally take us two or three hours to get him to take the morning dose. Then we’d have 45 minutes till the next one.”
Bill and Gina tried concealing the medication in his other (formerly favorite) foods. “Hiding it backfired,” reported Gina. “We caused a lot of suspicion in him. John was a super verbal kid. He could capture details really easily with words. He took my sister aside and said we were putting things in his food.”
In desperation, Bill searched online and found gelatin capsules. He and Gina would stuff the pill into capsules (laced with peanut butter to mask the foul taste) and John eventually agreed to swallow them. He was even more compliant when they began mixing the medication in a popsicle they microwaved to a “perfect slushy consistency.”
6. Pack an emergency bag. “One thing we found really helpful and that we’d advise other families to do is to have an emergency bag ready at all times in case you have to run out to the clinic on a moment’s notice,” said Gina. “It should contain bottled water, snacks like sealed packages of graham crackers or granola bars, activities your kids might like, and definitely a light-weight sweatshirt or sweater because it can get cold in the hospital even if it’s hot outside. If you have a smaller child, maybe a special stuffed animal or a blanket,” she added.
7. Always be prepared to wait. Bring things to “make the time go by quicker,” Gina advised, whether it’s books, a deck of cards, video games or movies. John concurred. “It’s definitely helpful to have something to play with when you’re waiting in the doctor’s office. Every time we’d have a doctor’s appointment, I’d bring a project, coloring book or paper airplane book or a magazine or book I’d like to read over and over again. Also, listening to your favorite music or TV show with headphones helps distract yourself so you don’t work yourself up. It kind of helped me focus on that and not when they put the needle in.”
8. Educate people around your child. Gina remembers explaining to one of John’s teachers that he would need regular access to water, and to be protected from the sun. The teacher, ironically also a survivor, told them she assumed all such issues had been resolved since John had completed treatment.
“It’s not just the family that might think once you’re done, you’re done. It’s almost like they think you want to stay in that space because you’re not in the hospital anymore. They might not realize things like sun sensitivity and fatigue are issues that persist.”
Part 3: How to transition from patient to survivor
Learn more about acute lymphoblastic leukemia treatment at City of Hope, internationally recognized for its treatment of leukemia and other blood disorders.
Also, read John Cloer's story in his own words.