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 the relationship is paramount. Connections can be made in many different, unique, and personally meaningful ways. Try to support the family in ways that respect their wishes while honoring their privacy.
• Be sensitive to the emotional state of both child and parent. Sometimes parents want to talk about the leukemia; sometimes they just need a hand to hold.
• Encourage all members of the family to keep in touch through visits, calls, email, videotapes, audiotapes, 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.
Our relatives who lived close to the hospital had teenagers. One was a candy striper at Children's on Saturdays. Judd's aunts, uncles, and cousins came to visit several times a week any time he was in the hospital during his three 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 in the hospital. Remember that the child can hear all phone conversations when parents talk on the phone in the room.
The first three days in the hospital I spent much of my time crying on the phone when talking to friends and relatives. Then I realized how frightening this must be to my 2-year-old. So I just took the phone off the hook and left it there. Now, each time Jennifer is hospitalized, I call one friend and have her spread the news. Then I take the phone off the hook again and concentrate on my daughter.
• 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 also not allowed in childrens 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 videotapes or arrive with a good joke if you think it is appropriate.
My brother Bill and his wonderful girlfriend Cathy 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 Cathy bought ten outfits, rigged up a dressing room, and with Cathy 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
Puzzles, games, picture books, coloring books, age-appropriate computer games, and crafts are welcome. Remember that attention spans may be shortened by treatment, so keep it simple.
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 a break from the hospital room. A walk outside, shopping trip, haircut, dinner with spouse, 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.
A close friend (who lived three thousand 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.
If you don't hear from a family member, call. Often silence means that he doesn't know what to do or say.
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 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 workday and donated platelets whenever Deli needed some. We concentrated on the few "star" friends and relatives, the one or two people whose attitude and abilities and circumstances allowed them to be the most helpful.
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