Childhood Cancer

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Childhood Cancer

The extended family

Extended family—grandparents, aunts, uncles, cousins—can cushion the shock of diagnosis and treatment with loving words and actions. Extended family members sometimes drop their own lives to rush to the side of the newly diagnosed child, and often remain steadfast throughout the months or years of treatment. Regrettably, some family members are not helpful, either out of ignorance about what your family needs or simply because they are frightened by the diagnosis or overwhelmed by events in their own lives.

The first day Zach was diagnosed, my sister and sister-in-law met us near the hospital and walked in with us so they could be with us. They brought their laptops so we could set up a CaringBridge page and connect with the outside world by email right after we first met with the oncologist. My sister took detailed notes for me at every meeting and would ask question to clarify what she was writing down so we could talk about it and ask questions later. A few days later, she could not come to meet the radiology team so she made sure another family member was there to take notes. With a 2-year-old to watch, having someone to be an extra set of ears was always helpful.

Some extended families, and even entire communities, rally around the family; for other families, support never materializes. Several factors affect the strength of support that is offered including well-established community ties, good communication within the extended family, physical proximity to the extended family, and clear exchange of information about the needs of the affected family. If any of these elements is missing, support may dissipate or never appear.

We had just moved 3,000 miles away from family and friends for my husband to accept a new job. We had no family close by, no friends. Each family member and some close friends used their vacations to fly out and take 2-week shifts at our new house to help out. Thankfully, they got us through the first months, but the rest of treatment was lonely.

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We spent almost 9 months in the children’s hospital. Without my parents, my husband and I couldn’t have done it. My parents were at the hospital every single day (other than when my mom got the flu). My parents even had to stay with Chad at the hospital for 2 weeks with us, because I had to have surgery. They went to every single appointment with us. They were there for us 100% of the time. I also lost contact with a lot of family and friends during that time. People said “they couldn’t handle it.” But we gained new friends among the parents of kids with cancer.

Families with strong community ties often receive support throughout treatment.

Grandparents

My son was diagnosed with osteosarcoma at age 11. During his treatment, various members of my family came from the Midwest to the east coast and stayed to help out with everything. My 81-year-old mother spent more than 3 months helping clean the house, cook, do laundry, get groceries, take care of my kids, go to the hospital, do clinic visits, do surgery visits, take care of the garden—pretty much anything that needed doing so that I could continue working at least part time since I was the insurance holder and sole income provider. My two sisters also came out for weeks at a time to spell my mom. One sister even took unpaid leave to come and help. When she couldn’t come out one week, her 20-year-old daughter, my niece, came to help us during her college spring break. My 24-year-old nephew loaned me his car and came by whenever he could get off base (he’s in the military). I don’t think I would have made it through my son’s treatment without my extended family.

Grandparents grieve deeply when a grandchild has cancer. They are concerned not only for their grandchild, but also for their own child (the parent). Cancer wreaks havoc with grandparents’ expectations, reversing the natural order of life and death. Grandparents frequently say, “Why not me? I’m the one who is old.” A cancer diagnosis in a grandchild is a major shock to bear.

Many parents reported that the grandparents responded to the crisis with tremendous emotional, physical, and financial support.

My mother was a rock. She lived far away, but she put her busy life on hold to come help. She took care of the baby and kept the household running when I was living at the hospital with my very ill child. She was strong, and it gave me strength.

Some parents express tremendous gratitude for the role played by the grandparents in providing much-needed stability to the family rocked by cancer. When grandparents are able to care for the siblings or help with meals and other home chores, the parents can focus on the most urgent needs, such as caring for the sick child or putting in necessary time at work.

My son JJ was diagnosed with cancer at 24 months old, and at the time I also had an infant who was 5 months old. I knew that JJ’s young age meant that I would need to be by his side the entire time, from start to finish. My in-laws came down, packed up the baby, and took him back to their house, an hour and a half away. My father-in-law, who was off work at the time, had never had children of his own (he was a stepfather), but he stepped up and took care of my baby like he was his flesh and blood. He did all the middle of the night feedings (and actually enjoyed it!). He fed him his first solid foods and showed him off all around their small, country town, just like a proud grandpa should! As much as it pains me that I missed those 6 months of my baby’s life, I was able to focus my undivided attention on my newly diagnosed son. I knew my baby was being exceptionally well-cared for and it was one fewer thing that I needed to worry about.

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John is Grampa’s only grandchild. He’s always there to play a board game, tell jokes, or watch his favorite video with him for the 1,000th time. I wish he’d hide his fears a little better, but that may be too much to expect from a truly loving grandfather.

Other families are not as fortunate. Many grandparents are too old, too ill, or simply unable to cope with a crisis of this magnitude. Some simply fall apart.

My mother-in-law became hysterical when my daughter was diagnosed. She called every day, sobbing. Luckily, she lived far away, and this minimized the disruption. We had to ask her not to come, because we just couldn’t handle the catastrophe at home and her neediness too. It hurt her feelings, but we just couldn’t cope with it.

Other grandparents allow pre-existing problems with their adult child to color their perceptions of what the family needs or what role they should take on during the crisis. For example, sometimes cancer allows grandparents to renew criticism of the way grandchildren are being raised.

While we stayed at the hospital, the grandparents moved into our house to care for our 8-year-old daughter. They decided that this was their chance to “whip her into shape, teach her some manners, and get her room cleaned up.” Our daughter was in tears, and we ended up saying, “We appreciate your help, but we will take over.”

It is hard to predict how anyone will react to the diagnosis of childhood cancer; grandparents are no exception. Some respond with the wisdom gleaned from decades of living, others become needy or overbearing, and some withdraw. It is natural in a time of grave crisis to look to your parents for support and help, but it is important to remember that grandparents’ ability to respond also depends on events in their own lives. If problems between family members develop, help can be obtained from hospital social workers or through individual counseling.

Helpful things for extended family members to do

Families differ in what is truly helpful for them. The suggestions in this chapter are snapshots of what some families appreciated. Connections can be made in many different and personally meaningful ways. Extended family members should try to support the family of the child with cancer in ways that respect their wishes, while also honoring their privacy.

Parents of the ill child may want to share the following suggestions with their extended family and friends so they have a better idea of how to help.

•  Be sensitive to the emotional state of both the sick child and the parents. Sometimes parents want to talk about the illness; sometimes they just need a hand to hold. The same is true for the child or teen with cancer. Some will want to share their feelings, but others will prefer to be distracted and do “normal” fun things with you to whatever extent they can.

•  Encourage all members of the extended family to keep in touch through visits, calls, video chats, mail, e-mail, text messages, and social media. When visits are welcome, make them brief and cheerful. Not only do long visits sometimes distress sick children and teens, but they can also overtax a tired parent.

Our relatives who lived close to the hospital had teenagers. One was a candy striper at Children’s on Saturdays. The aunts, uncles, and cousins came to visit several times a week any time he was in the hospital during his years of treatment. They were all very supportive, very positive, and fun to be around.

•  Be understanding if the parents do not want phone calls while in the hospital. Remember that parents often have to stay very close to their sick child, and the child can hear what is being said in phone conversations, so text or voicemail messages are sometimes better.

•  A cheerful hospital room really boosts a child’s spirits. Encourage sending balloon bouquets, funny cards, posters, signs with messages on them, toys, or humorous books. Most hospitals do not allow latex balloons, so only send mylar balloons. Flowers are usually not allowed in children’s rooms.

We plastered the walls with pictures of family and friends, and so many people sent balloons that the ceiling was covered. It was a lovely sight.

•  Laughter helps heal the mind and body, so send funny videos or arrive with a good joke if you think it is appropriate.

My brother Bill and his wonderful girlfriend, Cathleen, created an exciting “trip” for my 4-year-old daughter. She was bald, big-bellied from prednisone, and her counts were too low to leave the house, but her interest in fashion was as sharp as ever. Bill and Cathleen bought 10 outfits, rigged up a dressing room, and with Cathleen as saleswoman, turned Katy’s bedroom into a fashion salon. She tried on outfits, discussed all of their merits and shortcomings, and had a fabulous time. It was a real high point for her.

•  Distraction is the name of the game. Puzzles, card games, picture books, coloring books, age-appropriate video games, new movies, and craft kits are welcome. For a child who cannot get out of bed, a remote control car or a foam dart launcher can be a fun way to extend their reach and have more active play while they are stuck in one spot.

A friend who was a nurse came to my son’s room shortly before Christmas and brought an entire gingerbread house kit, including confectioner’s sugar for the icing. We had a very good time putting it together.

•  Offer to give the parent(s) a break from the hospital room. A walk outside, shopping trip, haircut, dinner out, or just a long shower can be very refreshing.

•  Bring a fresh, home-cooked meal to the hospital for the parents. This can be a wonderful respite from hospital food for parents who are staying with their child.

My coworkers had Italian food from a nice restaurant delivered to me while my daughter was in the hospital and it made my week!

•  Donate frequent flyer miles to distant family members who have the time but not the money to help.

A close friend (who lived 3,000 miles away) had just lost her job and wished she could be there for us. My parents gave her their frequent flyer miles. She flew in for 3 weeks during a hard part of treatment and helped enormously.

•  Donate blood. Your blood may not be used specifically for the ill child, but it will replenish the general supply, which is depleted by children with cancer.

Our family friend John is terrified of needles. John always avoided giving blood. John doesn’t like going to the doctor. But John showed up to donate platelets once, early on, and we found that he was a great platelet match for Deli. So he kept returning to that awful two-needle machine that you stay hooked onto for 3 hours at a time, probably a couple dozen times, because we needed him. Then we had Beth, who was one of my professional acquaintances. Beth was always pretty nice to us, but she found out that she too was a good “sticky” platelet donor. Probably at least a dozen times she took hours out of her work day and donated platelets whenever Deli needed some. We concentrated on the few “star” friends and relatives, the one or two people whose attitude, abilities, and circumstances allowed them to be the most helpful.

Restructuring family lifeFriends

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