Be a Friend
Things you can do to personally brighten the lives of kids with JMML and their families.
Having a young child with a life-threatening illness, especially a rare one like JMML, can be a daily nightmare for a parent or sibling. Seeing a defenseless child suffer can be horrifying. Even in the “stable” moments, the fear of losing someone so defenseless and so precious to you never leaves. The care of friends, family members, and even strangers, every day, is indispensable to these families.
Whether you know a child with JMML or a family member or not, you can lift their spirits through your own compassionate actions. Here are samples of advice for friends and family, collected from the immediate family members of JMML and other cancer patients.
Give the Gift of Life
- - Become a bone marrow donor:
- - Donate your baby’s umbilical cord blood:
- - Become a regular blood and platelet donor: Whole blood and platelet transfusions are often needed by JMML children. Blood banks often have shortages, and platelet donations can not be stored by a blood bank for more than several days, so these are constantly needed by blood banks.
- - Pray
Give the Gift of Time
- - Perform a daily chore: deliver a meal, mow a lawn, come by to clean.
- - Help set up a web-log for the child’s family: this allows families to share the daily details of how their child is doing with everyone at the same time online, and it is an easy place for them to vent and feel your support by reading guestbook entries:
- - Respect the family’s wishes about visiting or calling during treatments – ask beforehand.
- - Read up: understanding their medical situation allows a family to explain less and have more time to deal with their emotional demands.
Give the Gift of Love
- - Send a card or toy.
- - Post supportive messages on an update website.
- - Gift certificates: books, toys, kids clothes, video rentals for the parents.
- - Be there: JMML is a long, ugly disease to deal with. Families have to make it over many hurdles, including the initial diagnosis, choosing treatment, finding a stem cell donor, getting through transplant, making it past the peak period for relapse, and dealing with complications and side effects. In some cases families have to deal with the death of their child, and that moment stays with them forever. It is easy to forget what they are passing through, but the families never do. Your presence, your concern, your thoughts, help.