Are you a Dr. Seuss fan? In his whimsical book, Horton Hears a Who, an elephant named Horton is trying to save the teeny tiny community of Whoville that exists on a speck of dust, defending them by saying, “A person’s a person, no matter how small.” No matter how small—or large—your children are, from babies to teenagers to adults, when one of them is diagnosed with cancer, your entire world changes.
In Part 1 of our parent caregiver blog, we’ll share the story of Jayden* and Darren*, whose normal family life was upended when their baby was diagnosed a few months after birth. You’ll read about Mandy*, who is caring for her teenage daughter experiencing a recurrence of leukemia while trying to balance work and taking care of her other children. We’ll publish the second part of this blog next week, sharing the stories of parents taking care of their adult children who have received a cancer diagnosis.
We don’t let what we went through define who we are as a family.
“You know that mother-baby bond that everyone says you’ll have once your baby is born? I never had that,” admits Jayden. “I just knew something was wrong and my (baby) didn’t look right, with bumps all over (a) terribly distended tummy,” Jayden kept going back to the doctor until there was finally a diagnosis when the baby was 10 weeks old: Stage IV Neuroblastoma with metastasis to the bones and a main tumor that grew around (the) heart, took over 97% of (the) liver, and invaded (the) spine. In a whirlwind of medical activity, they were immediately admitted to the hospital, with a central line put in and staging done the next day, and 2 days later, chemo started. It was such a difficult, scary, traumatic time for Jayden and Darren that it is difficult to talk about without tearing up, “I kind of lost myself and either became numb or couldn’t stop crying,” Jayden says quietly and Darren adds, “We weren’t really even married during that time. We were together, but not really present with each other or with our other child (who was 2 years old at the time).”
Jayden didn’t want her child to be left alone in the hospital, which “meant that Darren had to change his work schedule and my mom had to come live with us for six months to take care of (our other child).” Darren’s family wasn’t comfortable talking about what was happening, “It created tension and made it hard for them to visit while our (child) was in the hospital and receiving treatment.”
Jayden attended a support group for those with cancer to help her cope with the emotional stress and incredible isolation she felt, as privacy laws prevented them from being connected with other parents at the hospital in a similar situation. “Even though it was (my baby) that had cancer and not me,” Jayden shares, “it was so helpful to talk to others who could empathize. The power of prayer and support is huge—it was just as important as medicine.”
It has been several years since chemotherapy, surgeries, and extended stays in the hospital. Meanwhile their child has grown up and they have learned to live with the knowledge that doctors couldn’t remove the entire tumor from their child’s spine. Jayden and Darren agree, “We don’t take life for granted. We don’t let what we went through define who we are as a family. We treat (our child) like a normal kid—we can’t live life worried that the cancer will come back.”
Taking things one day at a time.
Mandy was frustrated when doctors couldn’t figure out why her daughter was experiencing joint pain, extreme bruising and bleeding in her mouth. After several weeks and many trips to the clinic, they brought her daughter in to the emergency room, where a triage nurse finally figured out the cause: leukemia. “I went outside the room and wept,” admits Mandy, who didn’t want to break down in front of her daughter. “Then I immediately drove to Walmart to get supplies for a hospital stay because I didn’t want to go home and upset my other kids until we knew exactly what was going to happen.”
While driving her daughter back-and-forth to chemotherapy, working full-time and caring for her other children, Mandy appreciated that her children’s 4H club brought a meal every week. “We were new to (the area) and didn’t know many people, so it was nice. It was the one day I didn’t have to think about what to make or what my other kids were going to eat. I didn’t have to go to Walmart and wonder what to make with any of the food on the shelves in front of me.”
A recent recurrence of her daughter’s leukemia has meant chemotherapy and full-body radiation to prepare for a bone-marrow transplant. “My daughter will need a hip replacement because chemotherapy killed the top of her femur bone. She will more than likely not be able to have kids herself one day because of the full-body radiation—this is an especially hard blow for her and us,” divulges Mandy. It has been incredibly difficult for her teen to miss out on school, friendship, and other social activities that are normal for teenagers. “She is always at home or in the hospital and that makes for a grumpy teen.”
Mandy encourages parents to accept help, “especially if you have other children who are taking a backseat and not seeing or doing anything with mom or dad because of the (sibling’s) cancer–don’t forget about the other kids.” Despite the challenges, heartbreak and trauma of her daughter’s leukemia, “I do not try to figure out why this happened, because there is nothing I could have done to prevent it,” Mandy expresses. “I can only take things one day at a time, one problem at a time, and go from there.”
If you are a parent, it can be torture to watch your child—no matter how old they are—suffer and endure pain, much less entertain their mortality and the potential that you may outlive them. We thank Jayden, Darren and Mandy for sharing their experience as parent caregiver. Our hope is that in doing so, it shines a light on the agony that can come with being a parent caregiver for young children.
*Names have been changed to protect participant’s privacy.
Written by Amy Tix, mother of 2 beautiful girls and Communications Manager for Firefly Sisterhood, who fought back tears in writing this blog and imagining how horrible it would be to have one of her children receive a cancer diagnosis.
This Is Living With Cancer