A parent’s list of worst fears would undoubtedly include learning that your child has a brain tumor. Mike and Michelle Perry of Bartlesville, Okla. recently experienced this for themselves when their daughter Allyson was diagnosed with a very rare and large brain tumor at age four.
The same day as her diagnosis Allyson underwent emergency surgery. While waiting at the hospital, a nurse asked Mike and Michelle if they had a website created to stay in contact with family and friends. “I didn’t even realize those websites were out there,” said Mike. “That night after her surgery was over I started the CaringBridge site.”
Ideal Communication Tool
The overall uncertainty of Allyson’s situation, coupled with the amount of calls the Perrys were receiving, made CaringBridge an ideal communication tool. “There was no way for us to stay in contact with everybody and tell the story 50 or 60 times,” said Mike.
The family was able to enter updates from a waiting area where Le Bonheur Children’s Medical Center provides computers and Internet access. “Little did we know the website would receive about 1,000 hits a day when we were in the hospital,” said Mike.
The hospital started to feel like a second home to the Perrys and they can’t say enough good things about the medical staff, including Dr. Frederick Boop, who “adopted” them while they were there.
Feeling the Support
By using CaringBridge, Mike could also reach out to Allyson’s supporters outside the hospital, especially when she needed a special prayer. He would post a Journal entry before her surgeries so everyone would know exactly what to pray for and when. “To be able to communicate with that many people by just sitting down at the computer has really been fantastic,” said Mike.
About 90 percent of Allyson's tumor has been removed. She’s attending school and enjoys taking swimming lessons. Quite a change from what she was going through just months ago.
Thinking back to that difficult time Mike realizes that he also used CaringBridge almost as a safe haven, as an opportunity to talk about what was going on and document everything that Allyson had to go through.
“It was very therapeutic and it was probably just as therapeutic to get the messages back and know that we had so many people reading the website,” said Mike.
One of Mike’s favorite functions of CaringBridge is the ability for visitors to receive automatic notices of Journal updates. “That way everybody knows, they don’t have to just go out there and check the website, they can wait until the e-mail message comes in that I’ve done an update” said Mike.
Sharing the Experience
Reading Allyson’s story on CaringBridge allowed many people to feel like they were there, sharing the experience with her. Allyson spent five weeks in the hospital, weeks that were filled with being poked and prodded with needles and getting blood drawn every 30 minutes. She went through four craniotomies, had a huge incision in her head and was rarely allowed to sleep through the night. Enduring all of that is a lot to ask of anyone. But Allyson not only endured it, she did it without even crying.
In a Journal entry Mike mentioned “The Power of Allyson.” He describes it as the power of prayer, the power of love, the power of support and the power of miracles. “Allyson’s story has helped remind us how precious life is and how important relationships with our friends and family are,” said Mike.
After reading that Journal entry, a family friend ordered rubber wristbands with “The Power of Allyson” printed on them. Those wristbands are now in about 38 states and eight different countries.
Bringing People Together
“It’s amazing what her story has been able to do. What we’ve really tried to communicate to people is don't take your kids for granted, don’t take your family for granted,” said Mike. He credits Allyson’s story for bringing people back together because it gave them an opportunity to talk again and remember what is really important in life. By connecting through CaringBridge, Mike has seen old friendships reunited and spiritual relationships reawakened.
When Allyson gets older Mike will have a book version of her CaringBridge story on hand to remind her not to take things for granted. “When Allyson’s 16 and she starts complaining about how hard life is – high school and boys – it’s an opportunity for us to sit her down and really show her how difficult life can be,” said Mike. “If she’s able to get through this stuff, she can get through anything.”