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.  These suggestions are not limited to families facing the challenges of JMML - they can be gifted to anyone dealing with childhood cancer.


  • 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.
    • Where to donate:
                      America's Blood Centers
                      American Association of Blood

  •                   American Red Cross
  • Pray, and share your prayers with the family

Give the Gift of Time
  • Perform a daily chore
    • Deliver a meal
    • Go grocery shopping
    • Mow a lawn
    • Come by to clean
    • Give rides
    • Babysit the family's other children
    • Lotsa Helping Hands is a free website that can help families and friends plan out this kind of support for JMML (and other) families in need
  • Help set up a blog 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 to the child or parents
  • Post supportive messages on an family's blog
  • Offer gifts or gift certificates
    • Both children and their parents experience high levels of stress from the uncertainties of treatment, increased bills, and the tedium of hospital stays. Small gifts, from individuals, offices, or groups of friends can show you care, remind them that they're not alone, and help them re-charge their energy from time to time.  Examples: 
      • Toys
      • Books
      • Children's clothes
      • Movie rentals
      • Restaurants
  • Be present
    • JMML can be 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, side effects, and late 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, can help.


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