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.

Some extended families, and even entire communities, rally around the family, but for other families, support never materializes. Several factors affect the strength of support that is offered: 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 are missing, support may dissipate or never appear.

Families with strong community ties often receive support throughout treatment.

Grandparents

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 brain or spinal cord tumor 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.

Some parents express tremendous gratitude for the role played by the grandparents in providing much-needed stability to the family rocked by cancer. When the grandparents care for the siblings at home and run the household, the parents can care for the sick child and return to work.

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.

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.

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. True listening and working on maintaining your relationships are paramount. Connections can be made in many different, unique, and personally meaningful ways. Extended family members of the family dealing with cancer should try to support them 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.
• Encourage all members of the extended family to keep in touch through visits, calls, mail, email, text messages, videos, or pictures. When visits are welcome, make them brief and cheerful. Not only do long visits sometimes distress sick children, but they can also overtax a tired parent.

• Be understanding if the parents do not want phone calls while in the hospital. Remember that the child can often hear phone conversations when parents talk on the phone in the room.

• A cheerful hospital room really boosts a child’s spirits. Encourage sending balloon bouquets, funny cards, posters, toys, or humorous books. Be aware that some hospitals do not allow rubber balloons, only mylar. Flowers are usually not allowed in children’s rooms.

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

• Puzzles, games, picture books, coloring books, age-appropriate computer games, and crafts are welcome.

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

• 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.