February 5, 2014 | by Roberta Nichols
Ken and Diana Wolfrank have seen and heard it all. Their son, Gavin, was diagnosed with acute lymphoblastic leukemia before his first birthday. The Wolfranks recently shared their family's story, as well as their advice for other parents in similar situations, via Breakthroughs. Now, the couple has some advice for friends, loved ones and visitors wondering what to do for, or say to, the family of a child with cancer.
-A City of Hope volunteer brought the family a clear shoebox filled with goodies donated by a school and containing things like toothpaste, a new magazine, breakfast bars and nuts. “Little gestures like that meant a lot,” recalled Diana. “For the most part, we never left Gavin, so those things were big. It meant I didn’t have to run downstairs. And I still had the shoebox to put things in. I suggested this as a project for Emma’s Girl Scout troop, giving boxes that include the simple little things you forgot from home. - “We had a few friends offer us money but we didn’t need it at the time,” said Ken. “We were very lucky. That would be a nice gesture and something that would be super helpful for families. The bills still keep coming.” - “Finance is a burden, so gift cards, gas cards that you could just put in a basket for parents, it does come in handy,” said Diana. “The Leukemia & Lymphoma Society was helpful with that. I’d turn in (gas) receipts to them.”
-“There were moments I could not leave Gavin to run off to get Emma at school, so I would ask a friend to pick her up so maybe she could play for a little bit instead of coming here after school,” said Diana. “It was helpful to us as a family, knowing she was with friends and I didn’t have to run off.” -A “nice and comforting” hospital social worker also spent time with Emma, answering her questions, playing puzzles and offering a respite from the routine.
-Visitors should be able to “read the room,” to see if their presence is helping or becoming stressful to the patient and family, advised Ken. -“It’s nice to have people come in and bring stories and laughter to the room so I can stop talking a few minutes,” said Ken. “Short visits are cool – rather than have people hanging out for two hours. People who visit should have a little bit of a plan. Sometimes you felt obligated because people would drive 35 to 40 miles to see you … but I was exhausted trying to entertain Gavin,” and he lacked the energy to entertain guests. -People dropping in broke up the monotony – as long as they didn’t overstay their welcome. “I was always a fan of bad jokes and what’s going on out in the real world. That helped a lot. We had enough stuff to worry about. Don’t bring more of that into the room. Tell me something funny,” said Ken. -Diana also enjoyed the occasions when a friend would drop by to sit with Gavin so she could stretch her legs, or bring her a cup of coffee to the room so she could catch up on “what’s going on other than here. We’d hang out for a bit, but it wasn’t often. I didn’t want Gavin to sit there while we were socializing.”
-“When Gavin looked horrible, I don’t need you to come in and have that look on your face,” said Ken. “If you feel the need to cry, step out of the room. You can save that for when you leave. I get it – because it’s sad. But when you’re in the room, crying and tissues is not what we need. We were always trying to be upbeat and (have the attitude) ‘we’re going to get out of here.’ It’s OK to cry, but take it out in the hallway. I don’t think it helps the little child who’s lying there.”
-"Not to a family who’s just exhausted and trying to just get through a day,” said Diana. “Don’t complain. There’s nothing to complain about. Life is good for you. Enjoy that. We’ve tried to show people that. Enjoy it while you have it. -“Somebody’s worst day could be pretty bad for them. We have to remember that. It’s all relative. It’s just hard to hear sometimes – people fussing.”
-“People don’t know what to say,” said Ken. “Sometimes they make comments like, ‘Don’t you wish this wasn’t happening?’ or ‘Don’t you wish it could be you instead of your kid?’ I had to tune them out,” he added.
-When Gavin began kindergarten and the first grade, children asked a lot of questions. “Sometimes they’d ask me, ‘Why does he have those spots on his arms?’” said Diana. “I’d say, ‘He was sick as a baby and those are his scars from when he was sick.’ And they’d say, ‘Oh, OK.’ That’s what I told Gavin: ‘If you just tell them, then they have an answer and that’s the end of it.’” -Ken and Diana offered Gavin a playful response to give to persistent questioners, but he was uncomfortable springing on classmates that he was “half Cheetah.” Fortunately, say his parents, his peers’ curiosity has waned, and his fellow second-graders rarely interrogate him anymore. ** Watch Gavin's video, "Gavin's Wish," about his desire to meet his bone marrow donor.