This post was originally published on the Beauty From The Ashes blog on Aug. 14, 2018. Thank you to Katie Caldwell-Burchett and the Olivia Caldwell Foundation for giving us permission to share.
Today I had the honor of not only being invited to attend the press conference announcing the new Care Alliance between Wyoming Medical Center & Children’s Hospital Colorado; but I also got to spend some time afterwards with Jena Hausmann, President/CEO of Children’s Hospital Colorado, and several other members of the Children’s Board and Staff. Both as the founder of a nonprofit that works to raise money for Children’s Hospital Colorado and as a parent of two children who have been treated there, I am thrilled!
This Care Alliance is something that means a lot to me. I have seen the need for better pediatric care in Wyoming firsthand.
My daughter, Olivia, was diagnosed with brain cancer at just 4 months old in July 2012 when our family lived in Rawlins. Her diagnosis came months after I first began to discuss my concerns with her pediatrician. At first it was thought that her medical problems and developmental delays were due to her premature birth. It wasn’t until she began having seizures that we were given an EEG and then sent by Flight For Life to a Denver-area children’s hospital. By the time they discovered her tumor, Olivia’s cancer had spread throughout her brain and down her spine like a spiderweb.
Her diagnosis completely changed our lives. We found ourselves suddenly spending more and more of our time in Denver as Olivia had multiple surgeries, a brain biopsy, and then began chemo treatment. We lived in Denver for a month when she was first diagnosed, and then made trips back and forth to Denver every third week so Olivia could receive treatment.
During the weeks Olivia was not in Denver for chemo, we still had to drive an hour and a half to Laramie from Rawlins so she could have weekly labs taken. And any time Olivia got a fever or became dehydrated from her treatment-related nausea, we found ourselves back in Laramie.
I was truly shocked to discover how little experience and basic knowledge the staff at the Laramie Hospital had with a pediatric cancer patient. Each time we needed to access her port, it was a lengthy ordeal that involved multiple people and a ton of unnecessary poking and prodding.
One of our experiences was especially traumatic. A nurse in Rawlins with extensive pediatric experience attempted to access Olivia’s port before one of her treatments. Something went very wrong and suddenly Olivia had blood shoot out of her chest around her port, all over the two of us. Olivia was hysterical, and honestly so was I. It was a horrific experience.
Our experiences became more and more difficult, to the point that Olivia’s medical team at Children’s Hospital Colorado decided to train me to access Olivia’s port and give her fluids from our home when necessary. Now mind you, I have ZERO medical training or experience. But they were more confident in my ability to take care of Olivia in our home, knowing that I would remember and follow the precautions to make the experience less traumatic for my baby girl.
While we were fortunate to have some wonderful providers in Wyoming who took great care of Olivia during her cancer battle, we had many, many more who lacked the training and expertise to care for her, even with the direction of her team in Colorado over the phone.
After Olivia died in October 2013, we thought our medical troubles with our children were over. But instead, her twin brother, Wyatt, was diagnosed with Type 1 Diabetes the day after her funeral. Once again we were sent by Flight For Life to Children’s Hospital Colorado. Wyatt was in full DKA and spent a few days in their PICU before being released to a team of pediatric endocrinologists at Barbara Davis Center located on the Children’s Hospital Campus in Aurora.
And to this day nearly 5 years after Wyatt’s diagnosis we still don’t have a way to see an endocrinologist specializing in pediatrics in the state of Wyoming. We are required to make the trip to Denver anywhere from 2-4 times per year so he can receive relatively simple specialty care.
Mine and my children’s experiences are not unique. I personally know countless families who have spent months in Denver after their child receives a serious diagnosis. And many more who continue to travel to Denver or Salt Lake to receive routine treatment and follow-up care.
This new Care Alliance with Wyoming Medical Center aims to help change this. Children’s Hospital Colorado is ranked in the Top Ten out of all the pediatric hospitals in the United States in many of their specialities. They are going to bring their institution’s excellence and expertise to Wyoming to help our local kids receive the best care in their own communities, by our local medical staff, whenever possible.
They are going to do this by:
Doing extensive local training with the Wyoming Medical Center staff on pediatric cancer across many departments
Allowing staff from Wyoming Medical Center to spend time at the Children’s Hospital Campus in Aurora learning from their specially trained medical staff
Increasing access to specialty care and holding clinics at the Wyoming Medical Center for a variety of specialties
Creating standard protocols for pediatric medical treatment
Streamlining the transportation of patients to Colorado if/when that becomes necessary
Streamlining communication between providers at Wyoming Medical Center and Children’s Colorado to help patients receive the best care possible
Today was just the first step forward. And as these two organizations begin working even more closely to implement the Care Alliance, I have no doubt that our local kids will see a tremendous benefit.
When our kids can receive better care at home it makes a world of a difference in their quality of life and the quality of life for their family. I am personally filled with gratitude for the work being done by both Children’s Hospital Colorado and Wyoming Medical Center to make this possible.
The Olivia Caldwell Foundation is a 501c3 nonprofit that raises money for pediatric cancer research in memory of Wyoming resident, Olivia Caldwell, who passed away from brain cancer at just 20 months old in October 2013. To date we have given $325,000 to pediatric cancer research. To learn more or to donate please visit www.oliviacaldwellfoundation.org.