– Written by Andy Shultz
The Arizona sun shined brightly through the skylight into the lobby of Amanda Hope Rainbow Angels. No matter how many times I tried to re-adjust my chair the light continued to follow me and only get brighter.
“I believe Amanda is trying to play a joke on you with the sun,” laughed Amanda Hope Rainbow Angels Financial Coordinator and warrior family member Aimee Patton. “Every time you move the sun moves.”
September is Childhood Cancer Awareness Month. Every two minutes a child is diagnosed with cancer.
Amanda Hope lost her courageous battle with leukemia in 2012 but a dream and fighting spirit inspired her mom Lorraine Tallman to create Amanda Hope Rainbow Angels later that same year.
The message was simple. Bring dignity and comfort into the harsh world of childhood cancer and other life-threatening diseases. Services and programs are available for children, family members and health care professionals.
The organization started accomplishing this through the design of ComfyCozy for Chemo apparel. The customized clothing line provides buttons, snaps and zippers so medical personnel can access the specific areas needed for treatment while preserving a patient’s modesty.
“Dignity became very important to Amanda when she was diagnosed with cancer a second time,” said Tallman. “There was constant activity at the hospital where physicians and residents would want to see her port, make sure the lines are clear and check her feeding tubes.
“I believe this (ComfyCozy) changed the mindset for hospitals, since physicians will now pause and ask if they can open a specific snap or zipper before looking at a port or tube.”
The apparel concept came to Amanda one night in a dream, right down to the tie-dye colors.
“She wasn’t a pink girl,” smiled Tallman. The line includes dresses, hats, hoodies, shawls, short & long sleeve t-shirts and cinch sacks.
ComfyCozy care packs are provided to children three times throughout their journey. Each customized pack comes in a bright lime green sack with a ComfyCozy logo embroidered on the front and filled with apparel, activities and everyday items to help make the treatment a little more comfortable.
They receive the first one after the port is placed, another one is sent when they enter the hospital and the final one is a No More Chemo Party Bag when they finish treatment. Through a grassroots marketing effort, the nonprofit has provided more than 7,000 ComfyCozy care packs across six countries.
“Our families have done an excellent job promoting our services throughout the country,” said Jessie Swygert, Amanda Hope Director of Operations. “If one mom has an incredible experience, she will tell 10 others through social media. We will then work with the social worker and hospital to discuss the resources that are available.”
The organization’s vision also expands to supporting families who are going through this journey with their child and educating health care professionals on how they can provide the best treatment through empathy and understanding.
Patton, who joined Amanda Hope as a staff member earlier this year, developed a very strong bond with Tallman and the organization in 2014 when her daughter McKindree received a bone marrow transplant. McKindree, now 20, continues to receive on-going care at Phoenix Children’s Hospital.
“As a mom, it was an immediate connection with Lorraine (Tallman) because she understood,” said Patton. “It may not have been the same circumstances for our children, but she understood what it felt like to be in the hospital, try to balance family and other siblings while having a sick child.
“Lorraine (Tallman) also understood about the financial burden and how to manage insurance through the healthcare system. There are so many different aspects that a family takes on and she got it.”
Available family resources include financial assistance for household expenses such as utility bills, free counseling and support services and a program called Major Distractions. The goal of Major Distractions is to bring Amanda’s sunshine to some of the most difficult days by hosting craft days, Meals of Hope (breakfast/lunch/dinner), spa days and sports camps.
“Our family were benefactors of all the resources and services available,” said Patton. “For me to turn around and now be here as an employee is a beautiful gift.”
When working with patients and their families, the organization also works with healthcare providers to remind them it is important to speak on a more personal level since this will reduce stress and help with the treatment. Tallman recalls Amanda had very specific requirements when discussing treatment with her.
“You can’t reference her (Amanda) as a disease,” remembers Tallman. “She must be addressed as Amanda who is a child that enjoys sea turtles and snorkeling.”
Supporting organizations like Amanda Hope Rainbow Angels with either your time, talent or resources will allow them to continue supporting families who are experiencing the day to day challenges of having a child with cancer. For more information, you can visit their website: www.amandahope.org.
“Our mission is in the here and now. We don’t do research. Whatever our families need today, our team will try to figure out how we can do it,” said Tallman.