I became a mom for the first time to twins at the ripe age of 24. Despite all the time I spent reading parenting books I was highly unprepared for the cards I was dealt during the early years with my first two children.
Within their first 6 months of life together, my babies and I would go through a scary birth, a month in the NICU, complications from prematurity, and ultimately a pediatric cancer diagnosis for my daughter. Those months were terrifying, isolating, and incredibly hard!
Through all of those scary early moments, impossible decisions, and all the heartbreak, I was blessed with an advocate in the form of our Best Beginnings Nurse, Candice. This angel on earth had originally been assigned to help us when we transitioned home from the NICU with weight and oxygen checks. But overtime, she also became the person who became a lifeline through the darkness that came with Olivia’s brain cancer diagnosis at 4 months old.
Before Olivia’s diagnosis, my mother’s intuition had been screaming loudly that something was wrong with my little girl. Candice thought the same, and came alongside me to advocate for my little girl. Just like me, she was calling my pediatrician’s office multiple times a week to check in about the concerning symptoms we were noticing. Ultimately, her pushing helped us get Olivia to Denver sooner than we might have so we could receive her diagnosis and treatment could begin.
Throughout all of the struggles with the health of my children, Candice was always there. She helped us get connected to resources that could help us manage the weight of the bills that were coming in steadily. She provided some home nursing care for us so we could limit the times we had to travel to another town to see our pediatrician. And she also gave me a safe space where I could let my guard down and talk a little bit about how hard all of it really was.
And then when we reached the end of Olivia’s life, Candice once again stepped in and acted as our hospice nurse, which enabled us to have our final moments at home together. To say I am grateful for this incredible woman is the understatement of a lifetime!
As more time has passed since those final moments with my daughter, I have had more time to reflect on what Candice’s friendship and advocacy meant to me. She was a friend during my darkest hour, and an advocate for all of us when life was at its hardest. Her friendship and advocacy made life more bearable during an unbearable time.
I feel strongly that every family needs a “Candice” when their child is diagnosed with a medical condition. And the desire to provide that to other families in Wyoming is what led us to partner with The Orr’s Hope Foundation to create a Patient Advocacy Program to provide that kind of support to children and their families who are battling through complex or chronic medical conditions.
The Patient Advocacy Program has been designed to connect Wyoming families with the resources they need to help them throughout their child’s medical journey regardless of their child’s diagnosis, family income level, etc. This is a FREE program and you will never be charged to receive our services.
Our Patient Advocate, Katelin, can provide support and connections to resources that assist with travel expenses, childcare, school accommodations, medical support, food assistance, counseling, and anything else a family needs throughout their child’s illness! Our philosophy is to provide WHOLE FAMILY CARE because the diagnosis is difficult for every person in the family!
It is our sincere hope that through the Patient Advocacy Program we can make days brighter for children and their families who are battling complex medical conditions. If you would like to learn more or to connect with this program, please call 307-333-1273 or email firstname.lastname@example.org.
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