Team In Training Honored Hero Hadley's Story
SparkleSister Janet Cross runs and raises funds for Team in Training (TNT). Hadley Lehr was the season's Honored Hero for 2016. Below is Hadley's story as told by her mom. To read Janet's complete SparkleSpotlight story and help with her fundraising efforts, click here.
"July 06, 2016
Hadley was a normal toddler - into kitchen cupboards, emptying drawers as I was filling them with folded clothes, playing on her new slide in the back yard. She had never been on an anti-biotic and her biggest illness had been teething. In August of 2015, I noticed that she wasn't standing on her right leg very well and seemed to be limping. We thought maybe she had hurt her bottom coming down her new slide. But by the next day, she was standing like a flamingo, with her right leg completely tucked up. So, I took her to the doctor. He said it was her hip and was likely from something called Synovitis. This was not uncommon to the doctor but I had never heard of it. Thankfully, it went away quickly. But a month later, the same symptoms came back, along with a fever. Blood tests were done and then an x-ray, and then an MRI... and then our whole world was flipped upside down.
I was 8 months pregnant with our second child and had just been told our 21-month-old baby girl had Leukemia. And not even the "good" kind of leukemia but the bad kind - AML. There are only 600 cases of children diagnosed a year and the survival rate isn't even half of what it is with ALL. And then of the AML kids, they put you into subcategories and again, we were in one of the worst -M0. What terrible odds? The irony is that we had terrible odds to even conceive Hadley. But we did! And so with this diagnosis, we thought we will beat those odds again and save our precious baby girl.
Hadley started treatment at Peyton Manning Children's hospital on September 8, 2015. The treatment for AML requires you to be in the hospital for 28 days of treatment at a time. And so began our life of living in a 14' x 14' room. Hadley adjusted well, with an endless rotating door of visitors. And a new baby sister who arrived on September 20th. Hadley handled the chemotherapy well In round 1 but did get sick in round 2 for a week, which was very scary. Round 3 went much smoother and we had a goal to be home by Christmas and we would start the bone marrow transplant on January 15th at Riley. But on December 23, our world was turned upside down again when we found out Hadley's biopsy revealed that she had relapsed during round 3. Her cancer had gotten worse.
Since then we have been enduring an ongoing battle to get Hadley into remission or at least low enough to go to a more high-risk transplant. We did a clinical trial at Cincinnati Children's Hospital in January, but it didn't work. Her cancer only got worse during the treatment. Then we did 3 rounds of epigenetic treatment as an outpatient through CCH in February, March, and April. They allowed us to be at home and have some sense of normalcy, but it didn't improve the cancer, it only stalled it. And so we were told we needed to move on to something much more intense if we wanted a shot at transplant. So in May, we headed to St. Jude Children's hospital to start another clinical trial of a drug in combination with chemotherapy. We learned only 2 weeks ago, that this treatment also didn't work. In fact, her cancer grew again. So now we are back home and trying the epigenetics treatment again to see if we can stall the cancer long enough until another type of transplant modifies their eligibility requirement so that we can possibly enroll. Hadley is back to limping around if walking at all. And she's in more pain now than she has been the last 10 months.
We have no idea what the future holds for our little girl. We are scared and devastated and praying for some new research to come out in time to help her. In the 10 months since her diagnosis, she has endured so much... A constant barrage of doctors, a central line put into her chest so they can give her medicine whenever they want, oral meds that taste terrible, countless MRIs and Xrays, and bone marrow biopsies that are very painful. She's been to 3 different hospitals and had 8 different rooms. She spent her 2nd birthday in the hospital, Halloween, Easter, and countless other hours that should've been spent on a playground. Fortunately, she's felt more good than bad but we still hope the suffering she has endured will not be in vain. That she will still find her CURE and be FREE from this disease.
We thank you for your commitment to raise research money for the LLS. We need more research because unfortunately, the more difficult your case becomes, the fewer options you have. We won't lose hope on our little girl and we pray every day for a cure. Thank you for competing in her honor. We hope the spirit of your feet hitting the pavement, sweat dripping on the bike or tired arms cutting through water...will continue to breathe life into our little girl. We will NEVER give up."
Prayers to all of you
The Lehrs - Jim, Heather, Hadley and Phoebe
We were notified Sept 8, 2016, that Hadley has passed. A quote from her family: "Cancer did NOT win this battle, Hadley won. Her body is free of cancer. We buried the cancer that day and Hadley's soul and spirit will live on forever."
Funeral services were Aug 26, 2016.