Suzanne Booher was standing in Toys R Us on February 9, 2012 with her seemingly healthy 9 year-old son when she got the news. Caulin recently had his swollen tonsils and adenoids removed; the doctor was calling to tell her the pathology lab had found some malignancies on the tissue. “Pack a bag,” he said. “You need to go to the hospital right now. They’ll be waiting for you at the ER.”
Caulin had a particularly aggressive version of acute lymphoblastic leukemia. After learning that regular chemotherapy treatments weren’t likely to eradicate the cancer, Caulin’s parents and doctors opted for a bone marrow transplant, one of the most difficult procedures anyone can go through. Caulin was put into complete isolation with only a select few visitors allowed and given two days of intense chemotherapy to completely wipe out his immune system. During the months-long recovery process, Caulin developed another cancer, this time B-cell lymphoma. After yet more radiation, and doctors preparing Caulin and his family for potentially bad news, a scan came back showing that Caulin was completely cancer free. In March 2013, Caulin finished his last chemotherapy treatment.
A cancer diagnosis is often a parent’s absolute worst nightmare. How do families cope with such a grave situation and manage the care of their sick child along with the ongoing responsibilities of home life? “Some days the only thing I would look forward to was my cup of coffee,” says Suzanne. “I always tried to find one thing to look forward to or reward myself with, otherwise you can end up in a really dark place.”
Laura Middleton, pediatric psychologist on the hematology oncology team at Dayton Children’s Hospital, sees families struggle with this situation and says “The one thing I would never want anyone to feel like is that they always have to be positive and optimistic. It’s okay and actually healthy and normal to have days and moments that are really hard emotionally.”
For Suzanne, she tried to keep daily life as normal as possible for Caulin. They would talk about things to look forward to like a trip to IHOP and King’s Island. She decorated his room for the holidays and let him choose pictures of his friends to hang up. “We also tried to keep everything fun. When he was in isolation in the hospital, I brought his NERF basketball hoop – anything active that he could do within the room.”
When the situation felt overwhelming, she would read something encouraging that was not about leukemia or cancer. “I also very seldom looked things up on the internet,” says Suzanne. “That was a piece of advice that someone gave me. You will find worse case scenarios of everything there, and it’s not always accurate.”
Suzanne also found that well-meaning people often had unintentionally hurtful questions or comments, for example: What’s the prognosis? “It is just such an insensitive question. I know they don’t mean it that way, but when you ask what the prognosis is, do you want me to say, ‘Well, my child could die.’ We hated that one.” Also, the comment “Don’t worry, it will be okay” was not comforting to her. “It may be okay eventually, but right now my life is falling apart,” says Suzanne. When talking with a parent going through this situation, the most helpful thing to do may be just to ask how you can best support them.
Another challenge that came with the deluge of treatments and appointments was finding time to give to 12 year-old sibling, Madison. Taking care of Caulin and making sure Madison wasn’t getting slighted was a hard balance to strike says Suzanne. Middleton says this is not uncommon. “Siblings can feel forgotten or jealous of the attention and the gifts their sibling is receiving, and following that they often feel bad. Parents should be mindful of the sibling’s reaction and to listen to their other children. Validate their feelings and experiences. Don’t just brush them off.”
Suzanne encourages others in this situation to think about the siblings of the cancer patient when they are visiting. She advises against asking them if they are helping take care of their brother or sister. Instead ask them how they’re feeling, and maybe bring them a gift too.
People don’t often realize that when a child receives a cancer diagnosis, it has a ripple effect on every member of the family. As Middleton says, “Cancer doesn’t happen just to the child. It happens to the entire family.”
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