When five–year–old Jackie was diagnosed with acute myelogenous leukemia (AML), her mother, Cyndi, couldn’t bear to tell the heart wrenching news over and over again to concerned family and friends. While Jackie was in the hospital on a ventilator, Cyndi leaned on her CaringBridge website as a tool to communicate and receive the support, encouragement and connection they needed.
Isolated and Alone
“It was just me and my daughter, miles away from home, and I only had CaringBridge to help us through,” says Cyndi. “My biggest problem was, at the original hospital we were being treated at, there were no other patients with Jackie’s diagnosis,” says Cyndi. “We felt very isolated and alone.”
Cyndi scoured the Leukemia & Lymphoma Society’s online bulletin boards, finding links to other CaringBridge sites for kids with AML. Throughout Jackie’s diagnosis and treatment, their network of supporters grew and stayed connected through their CaringBridge website.
“I swear by CaringBridge,” says Cyndi. “It has literally sent us many human angels.”
Then, Jackie suffered a relapse.
“When Jackie relapsed we didn’t know at first if we were going to get her a bone marrow match because of her ethnicity,” says Cyndi. “It was very stressful and very hard.”
Cyndi turned to the largest bone marrow donor center in the world, DKMS, for help setting up a bone marrow drive. “DKMS is phenomenal, the love they give to each family that they help is incredible,” says Cyndi. “They don’t just help you do a bone marrow drive, they become part of your extended family. Thankfully we were able to get Jackie a match.”
During her transplant and recovery, Jackie and Cyndi used CaringBridge to follow stories like their own, which motivated Jackie to help others. “I’m very proud to be her mother and inspired by her. She really humbles me,” says Cyndi. “She’s gone through a lot but she recognizes that others are going through the same thing.”
One of the stories that Cyndi and Jackie followed through CaringBridge was of Denise Lindgren and her son Kyle, who also has leukemia. Kyle learned he had leukemia in 2000 and suffered a relapse in 2004, and again in 2008.
Denise initially kept people updated about Kyle’s progress by sending out mass emails. She made the switch to a CaringBridge website a few years later. “It’s so much easier for me, when we’re in the hospital, to go to CaringBridge and update the site and then people can go there without bombarding me with phone calls and emails,” says Denise.
Denise likes that she can keep a record of blood counts, doctor appointments and photos on CaringBridge, and receive messages of support. Twelve–year–old Kyle helps decide what goes on the site, including which photos to post and which template to use.
Cyndi and Denise found a common bond through their childrens’ illnesses and their own need for hope and support. They’ve both found that hope and support through CaringBridge and DKMS.
When Kyle relapsed and needed a bone marrow transplant, Jackie understood the importance of helping her friend and jumped at the chance to “pay it forward.” She convinced her mom to organize a bone marrow drive in his name through DKMS.
“It alleviates a lot of stress for me,” says Denise, who appreciates being able to focus her attention on Kyle.