JACKSON COUNTY, MI – Doctors found Claire Jordan’s first brain tumor the day before her first birthday and she started her first round of chemotherapy at 15 months old in 2005.
In 2014, Claire was still battling her cancer and, at age 10, entered hospice Her mom, Sara Jordan, had to accept her daughter’s survival was out of her hands.
But on Wednesday, Dec. 2, Claire celebrated her Sweet 16 birthday with a COVID-19 style parade.
“Here we are at 16,” Jordan said. “That was a scary time. … I’m always about quality of life, not quantity of life because I think that’s really important. That’s how we ended up on hospice. Through prayer and giving it up to God, miracles happen.”
Family and friends drove by the Jordans’ Parma home to celebrate Claire’s milestone birthday. Claire loves loud noises, so a Jackson County Sheriff’s Office patrol car and Parma-Sandstone Fire Department truck joined the parade with sirens blaring.
“Claire loves people and she loves parties,” Jordan said. “During quarantine that’s really hard so we figured why not do a drive-by.”
The parade was “awesome,” Claire said.
Claire was born with neurofibromatosis, a rare genetic condition that causes tumors to grow on nerve endings. The condition caused multiple cancerous tumors to grow in her brain.
She’s had seven brain surgeries. One surgery in 2012 nicked an artery and caused a five-hour brain bleed that ended up limiting her mobility, Jordan said. Claire now uses a wheelchair.
“You still try to find joy in the darkness and you look at Claire and she’s full of bright and joy and happy,” Jordan said. “Her smile could light up a room. She’s such a happy kid. You would never know everything she’s been through.”
Claire is a social butterfly, so a Sweet 16 birthday parade was the perfect way for her to see friends and family while staying safe during the coronavirus pandemic.
“It’s one of those things that touches your heart in a way to know that there are people that take time out of their busy day to show love,” Jordan said. “It makes you feel important and valued and it warms the heart.”
The family was able to get a handicap van in March, just before the pandemic started, which was life-changing, Jordan said, because she would have to cradle lift Claire into their old van.
“You think, ‘OK we can go out and experience life and go do things that she normally couldn’t do before because of the physical limitations on me,’” Jordan said. “Then here we are and our nation’s locked down.”
Claire’s birthday morning started with a white hot chocolate from Starbucks, something they do every year, Jordan said. After the parade they ate the oatmeal cookies Claire requested and opened presents.
“I think she’s a little angel on Earth,” Jordan said. “I think she touches lives in ways she doesn’t even know that she is touching lives.”
Doctors have not found a successful therapy for Claire. Some treatments have stabilized the tumors, but more growth always happens, Jordan said.
“Coming to the reality of it – the pendulum weighs on the side that she will not have a full life,” Jordan said. “You have to come to terms with that. You have to come to a reality with that. It’s a slow thing. It’s the best way I can describe it, you feel like your child – a little bit is dying every day. You never know.”
Claire isn’t undergoing any treatments right now, Jordan said. They tried a trial pediatric chemotherapy treatment earlier this year that had terrible side effects, she said.
“I don’t know what her MRI will hold on Dec. 18,” Jordan said. “I do know that she’s losing strength. Her capability to bear weight has gone down significantly. There’s days she can’t get air out, to talk, to say words. … She always has a smile and it’s never with complaint. … She’s taught me a lot of life lessons.”
Read more from MLive:
Increasing number of COVID-19 patients stresses capacity at Hillsdale Hospital
Relic from Pearl Harbor attacks to be displayed at Jackson County park
After 50 years together, Jackson couple died from COVID-19 in the same minute
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