LYANNA COULMAN

#loveforlee

DREAM TRIP TO DISNEY WORLD
AND GIVE KIDS THE WORLD VILLAGE

On December 1st, 2022, I called and texted my husband at work because my blood pressure was high and my doctor wanted me to come in to check it out. I had severe preeclampsia with Lee and so I monitored it very closely during my second pregnancy. While it turned out it wasn’t quite preeclampsia as feared, it was as close as it could be. For safety reasons, this prompted our 2nd baby girl, Keeley Kai, to be born three weeks early. We came home from the hospital a few days later, and Lyanna (Lee) finally got to meet her baby sister.

Over the next day and a half, Lee’s never-ending supply of energy seemed to be replaced with an uncharacteristic need for naps.

On the 5th of December, they took Lee to the doctor. The doctor ordered blood work, and a few hours later, they received a call advising them to bring Lee to the ER. After a tense wait in a packed ER, Lee was admitted to the hospital, where she stayed for four nights, undergoing test after test.

At midnight on the 9th of December, Lee and her dad took an emergency, 2.5-hour ambulance ride to Chicago. Tests were continued at this time and a bone marrow biopsy showed something very troubling. Lee was found to have a tumor in her stomach and cancer that had spread throughout her skeleton. The term neuroblastoma was used for the first time.

They were admitted to a top Children's Hospital in Chicago, where they were given a 15-18 month roadmap for treatment.

So far we’ve been through about five months of this process. As I write this, we are finishing up her fifth cycle of chemo. She’s also had extensive surgery to preserve her ovary and remove as much of the tumor as possible in her abdomen.

During that time, we’ve seen periods of breakdown and periods of recovery. This is certainly changed all of our lives. Having a newborn and a two-year-old battling such a daunting fight has really required all hands on deck. Even with all the help and support, some days it feels impossible.

Prior to this, Lee had just gotten to a very crucial stage in her development. For obvious reasons, Lee had to give up her new favorite hobby gymnastics. Because of her being immunocompromised, Lee lost a lot of the family and friend gatherings she was used to - Christmas, Easter, and Birthdays - all became an unreasonable risk for her. The longer hospitalizations early on in this process really affected her physically. She went from walking on balance beams to needing to learn how to walk again.

Through all this, Lee’s personality has only grown. Her love, her fierceness, and her stubbornness have helped her recover along the way.

Lee’s had too much time to watch movies and has grown to love every Disney princess you can think of. Being able to see some of the characters that helped provide an escape from this unfair reality will mean the world to her. To see her face when she does will mean the world to us.

- Gabrielle Coulman