Extended family—grandparents, aunts, uncles, cousins—can cushion the shock of diagnosis and treatment with loving words and actions. Extended family members sometimes cancel their plans 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; for other families, support never appears. 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 are missing, support may dissolve 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 eight months, but the rest of treatment was lonely.
Families with strong community ties often receive support throughout treatment.
Shortly after Jesse relapsed, I was praying with my Bible study group. With four children ages 1 to 9, I just didn’t know how we would manage with one parent 100 miles away at the hospital and one parent working. The group decided to collect enough money to allow my sister to quit her job and move in to take care of our other three children while I was at the hospital with Jesse. She stayed for eight months. It was such a wonderful thing. They didn’t even ask us; they just said they would support her financially so she could care for my children and keep the household running.
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.
Judd was in isolation at Children’s for a month. I stayed with him full time, and my husband took a month off work to be there. Luckily, my mother had moved to our town just the year before and was able to immediately move to our house to take care of Erin, my 10-year-old daughter. Grandma was great because she cooked special meals for Erin and helped with cleaning and transportation.
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.
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We’ve been in treatment for eight years—three relapses. I tell families you never know where support will come from, so it helps to stay open to everyone. I’ve met a wonderful group of people through our cancer journey. Some people surprise you with their support, and others disappoint. My mother only came to the hospital once; she said it was just too hard. But other people we hardly knew, or didn’t know at all, stepped up and really helped out.
Some 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 ill children shared the following suggestions for helpful actions by family members.
- 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. Ask them what feels right.
- Encourage all members of the extended family to keep in touch through visits, calls, video chats, mail, email, 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. Send 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 rarely 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 stage a fun event, send funny videos, or arrive with a good joke if you think it is appropriate.
My brother and sister-in-law 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 three weeks during a hard part of treatment and helped enormously.
- Donate blood. Your blood may not be used specifically for the child you know, 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 three 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.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Overview of Childhood Leukemia
- 3. Acute Lymphoblastic Leukemia
- 4. Acute Myeloid Leukemia
- 5. Juvenile Myelomonocytic Leukemia
- 6. Chronic Myelogenous Leukemia
- 7. Telling Your Child and Others
- 8. Choosing a Treatment
- 9. Coping with Procedures
- 10. Forming a Partnership with the Medical Team
- 11. Hospitalization
- 12. Central Venous Catheters
- 13. Chemotherapy and Other Medications
- 14. Common Side Effects of Treatment
- 15. Radiation Therapy
- 16. Stem Cell Transplantation
- 17. Siblings
- 18. Family and Friends
- 19. Communication and Behavior
- 20. School
- 21. Sources of Support
- 22. Nutrition
- 23. Insurance, Record-keeping, and Financial Assistance
- 24. End of Treatment and Beyond
- 25. Relapse
- 26. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups