Coping with a child’s illness: The emotional impact on family of one girl’s medical journey

Lynne Conner for Chronicle Media

The Shane Family. From back left_ John Michael, Meredith, Ken & Rosie. Front from left_ Gregory, Julia, Mary Grace & Annie.

Shock, fear, despair, frustration and anger are just a few of the emotions parents experience when their child has been diagnosed with a serious illness.

Having a child with a chronic health condition or one who requires surgery; leaves parents facing a unique dichotomy. They must serve as strong healthcare advocates for their ill child, provide for the needs of other children in the family and maintain their own emotional and marital well-being.

Parents facing the medical crisis of a child can find helpful tips, reassurance and hope in one family’s story.

The last thing that Ken and Meredith Shane expected from a job relocation to Iowa was a medical journey that would forever impact their family. The Shanes’ had only lived in Cedar Rapids for four months when their daughter, Mary Grace (Gracie), then aged 8, was rushed to the emergency room complaining of blurred vision and weakness.

Mary Grace Shane works on some occupational therapy.

Meredith, a registered nurse, noticed that her daughter was limping, couldn’t move her right arm or hand and that her face was drooping on the right side.

“At this point, I knew there was some problem with Gracie’s brain. I didn’t know if it was a tumor or cancer or what it was, I just remember crying and praying that everything would be OK,” Meredith said. After an MRI in at St. Luke’s Hos-pital in Cedar Rapids, Mary Grace was swiftly transported by ambulance to Iowa City for treatment at the University of Iowa Hospital. It was there that the Shanes’ learned of their daughter’s diagnosis.

“Mary Grace’s condition got clarified pretty quickly at the University of Iowa Hospital. The doctors told us that it did not appear to be cancer, but that it appeared to be a brain cavernoma,” Meredith said.

According to the Mayo Clinic’s website, cavernomas are abnormally formed blood vessels that can be present anywhere in the body. In Mary Grace’s situation, a cavernoma had formed in her brain and had begun to bleed. This caused a mi-nor hemorrhagic stroke, which accounted for the weakness on her right side and blurred vision.

The Shanes’ were then faced with having to decide whether or not Gracie should undergo surgery.

Meredith explains, “The operation to remove a cavernoma in this region of Mary Grace’s brain is very risky given how deep it lies within the brain. However, without an operation, the cavernoma could bleed again and cause a greater stroke or threaten her life.”

“After much discussion with Gracie’s doctors, Ken and I felt that though the surgery was risky, the benefits outweighed the risks of the procedure and Mary Grace had her surgery on June 21, 2016,” Meredith said. Prior to and following the surgery, Gracie underwent speech, physical and occupational therapy making a full recovery.

Mary Grace Shane a year after surgery, is an active girl who enjoys family outings. Shown here picking strawberries.

“Mary Grace’s prognosis is excellent! She is instructed to return yearly for an MRI and a follow up appointment with the neurosurgeon,” Meredith said. “She will never have a ‘normal’ MRI because it will reveal the site where the cavernoma once existed; however, all of her deficits have been healed.”

During their daughter’s medical crisis and the journey toward her recovery, the Shanes’ have learned valuable lessons which impacted the emotional climate of their family.

Meredith credits the help and support of family, friends and her faith in sustaining them through this difficult time.

“In the event of a serious health-damaging event or illness, I would suggest using a website like CaringBridge. Friends and family understandably have many questions and concerns and want to contact you without disturbing you, so using CaringBridge or other means to provide updates is a very time-efficient way to communicate,” she said.

“Accept offers of help from friends, family and neighbors. If there is a specific task you need help with, don’t be afraid to ask. Consider having one or two point persons to organize meals and babysitting if needed. Try to make sure your other children are kept busy so they won’t feel your absence as much,” Meredith said.

The Shanes’ five other children were also affected by their sister’s illness and reacted in various ways. “Our oldest daughter, Annie, was totally mortified as a 15-year-old of what her younger sister was going through. Our 13-year-old son, John Michael, was always the helper. He typed one of my CaringBridge journal entries on surgery day when I was worn out physically and emotionally,” she said.

“Our 10-year-old daughter, Rosie, was surprised at all the mail and gifts her younger sister was receiving, and didn’t re-ally fully understand what had happened to Mary Grace! We had to explain the situation as best we could and help her see how loved and important she is, too,” Meredith said.

As for helping Mary Grace to understand the all medical procedures she had to endure, Meredith and Ken tried to keep things as straightforward as they could.

“Gracie never seemed very curious or interested in understanding the cavernoma due to her young age, and it did seem like it was best to keep explanations short and simple. I tried asking her what questions she had, but she never had that many,” Meredith said. “She was mostly concerned about things like being able to play, seeing people she liked and be-ing able to do fun little projects.”

On the day of Mary Grace’s surgery, Meredith said that the hospital did a lot to put her daughter at ease.

“Mary Grace got to bring her favorite doll into surgery and they even put a hospital gown and cap on her doll. We played her favorite motivational song on the way to surgery and also on the way to any big appointment. ‘Eyes are open wide, cause we can do this’ and ‘Show the world just who you are, a shooting star!’ After Gracie left the hospital, I took her out for lunch for some positive, fun interactive time before going home.”

Having a child in the midst of a serious illness is also tremendously stressful on a marriage. Ken and Meredith looked for small ways to keep their relationship strong.

“We created little rituals. We always parked our cars in the same place in one of the several parking garages when trad-ing off hospital duty. We would visit for 15 minutes, and ask how the other is doing. We hugged a lot, talked often,” Meredith said. “If one of us was having a bad day, we helped each other through it. We put any small conflicts or petty annoyances to the side. We prayed together.”

Parents, too, need self-care when faced with a child’s illness. “Drink lots of water, do not skimp on food and rest. Do not beat yourself up. It will be very tempting to get less sleep, skip a meal, and such, but taking good care of yourself will help you be the best parent you can be for your child,” Meredith said.

The journey through Gracie’s medical crisis was an ordeal with many emotional and spiritual lessons for this family of eight. Meredith reflects on this stressful time through the eyes of divine providence. “We all just tried to pray, hope and trust; stay lighthearted and upbeat. Our family’s faith in God increased and the experience strengthened our family bond,” she said.

“I could see God working in this situation as we lived only 45 minutes away from the University of Iowa Hospitals,” she said. “I am humbled and amazed at how completely Mary Grace was healed,”

–Coping with a child’s illness: The emotional impact on family of one girl’s medical journey–