Donor MVPs

Ideas for the Emotional Struggle

Ideas for the Emotional Struggle
Along the journey to support Sam's struggle to survive and live well, our Family, Friends, and Fans have learned a few things we wanted to share:

The Shock of Cancer
When we heard the news about Sam and the words, Ewing sarcoma we were so lost – alone in a dark place. There was no clear path of treatment and or clear ideas about what to expect emotionally during the struggle.

And here are some insights on how to help your family and other families you know.  

For the Family Who Has Cancer, Create a "Relief Pal," a Go-to-Communications Person
If you are feeling overwhelmed, you have come to the right place. You can’t do everything and you need help. It can help to understand what is happening and who can create a new communications network of Family, Friends, and Fans to support the Struggle to Survive.

First thing to do is appoint a family member or friend as your “go-to-communications person”, they will be your best pal and team translator to buffer emotions and gather essential information and advice from resources.
Your “Relief Pal” is a co-pilot, an emotional buffer, and an always-on buddy who can be there when it’s all too much. I play this role on Sam’s Team, so I understand the need, the special stress, and emotional benefits to Sam and our family and the growing Sam community.

A “Relief Pal” has to be someone close to you and your child must be comfortable with him or her. Your “Relief Pal” will be your communication and buffer for all situations and the person you can tell what’s really going on and what you need as a parent. They have the ability to step in and help you through all kinds of situation good and bad. If this person is employed, they can appoint another “Relief pal” to help out as well. Your pal or pals can do the following:

  • Be your sounding board and be there for you
  • Check out Resource site (the URL here)
  • Call and email clinical trials for the patient on www.clinicaltrials.gov. Even if they are not recruiting, call anyway. They may have some helpful information of what they learned or a lead. Be assertive and persistent with emailing doctors and researchers.
  • Research other Ewing sarcoma specialist and keep an on going spreadsheet
  • Go to doctor's appointments with you and be a second set of ears
  • Bring you lunch or dinner on long chemo days
  • Do your grocery shopping or laundry
  • Bring things to and from your house to the hospital
  • Communicate medical updates and any information you want to relay to others
  • Bring you special soaps for the shower at the hospital
  • Do an errand
  • Be in contact with the child's school to communicate and pick up homework
  • Be a complete diversion and distraction for you and your little (delete little) patient

Read More

 

Family Grants

Family grants are specifically designed to aid families who need financial assistance in caring for their children with sarcoma cancer.  Please click here for more information and the Family Grant Application form.

 

Partners