CCRF

Occasionally, parents of children with cancer experience surprising and tense situations with clinical care teams. For Nicole, mother of acute myeloid leukemia survivor Jacob, this meant having honest conversations with Jacob’s doctors and nurses, or pushing back and diligently asking questions to effectively make decisions for his overall health

Caregivers frequently hear phrases like “you have to take care of yourself to care for your child” or “you can’t pour water from an empty cup,” but self-care isn’t easy when all your energy is going towards your child. Allow yourself a moment to recognize those feelings and acknowledge that they may be different than your child’s, your spouse’s, or anyone else who is going through hard times – and that’s OK. When I needed to step out of the hospital room to do some laps around the halls or around the building, no, I’m not going to feel guilty about it. Don’t be afraid to ask for help or accept it when it’s offered – your friends and family want to help you.

As part of the Care Partners program, Angie’s job was to be a supportive presence for families of pediatric hematology/oncology and blood or marrow transplant patients receiving care at the hospital. She’s thankful that she hasn’t had to face childhood cancer in her own family, but having a front-row seat to the suffering and strength of these families has changed her perspective on life. Angie’s time as a Care Partner undoubtedly changed the course of her life – she says she wouldn’t be where she is in her career today had she not decided to become a Care Partner 20 years ago. She is still in touch with Catherine and Cheryl 20 years after Catherine’s bone marrow transplant, and she loves going to the graduation parties and weddings for kids she first met during some of their darkest moments.

He learned to drive, plays indoor soccer and spent a week in Utah relearning to ski on one ski and two outriggers (His instructor said it was the most progress he had ever seen in a skier in a single week! ). He just finished his high school musical, Beauty and the Beast, where he danced and sang his way into our hearts as Gaston’s silly sidekick LeFou. God has blessed us beyond measure and we see the amazing power of our Lord not only when Mac braves a new activity, but in every day he is with us, every day he is picking at his brothers or impossible to get out of bed in the morning . . . Of course, when scan time comes around, many of those old fears and concerns well up inside me, but most days, we count our blessings that he has been given a second chance – a chance to do all the things he wants to do, despite the inconvenience of losing a leg.