After Eevie was born, she was diagnosed with a rare form of childhood blood cancer that affects 1 in 5 million newborns. She was given a 17 percent chance of surviving to age 2. This month, Eevie celebrated her fourth birthday. Each year her mother, Brynne, has shared her progress on this blog (you can read those stories here).
The last year has been incredible. The first word that comes to mind is “freedom.”
As a result of her cancer treatments, Eevie was immunocompromised for years leaving us completely confined. Our mobility was limited to oncology floors at the hospital. For months at a time we could not even leave our hospital room.
Sometimes, we had to hold Eevie fully gowned and gloved. We had to kiss her though masks. Even when we left the hospital, we lived in constant fear.
Due to her compromised immune system, she was unable to receive vaccines. I worried every time I heard that there was an infectious disease outbreak on the news – from measles to chicken pox.
What if I touched something contaminated at the grocery store? What if someone sneezed on my coat that touched the couch and Eevie sits on it? Any germ can be deadly to a child with no immune system.
Today, we have the freedom to go to the store without fear. Eevie can sit in the grocery cart like a typical kid – she loves shopping for Cheetos and grape juice.
We can go to the park and even the zoo. It’s an incredible feeling to see Eevie touch the monkey bars and feed the goats without worrying about staph infections, flu, and other diseases that could be life threatening for her.
We can have relatives over. We can watch her laugh and play with other children. The start of preschool is a big deal for many families. For our family, it symbolized so many things. I sobbed the day her school accepted her – with her feeding tube and all.
Each morning I get to dress her in her little plaid uniform. I still tear up when I watch her skip down the hall towards her classroom. On the way home, I get to hear all the preschool gossip. Eevie is quite the social butterfly.
During a recent parent-teacher conference, we were thrilled to hear that Eevie is “right on track.” Her teacher even said her empathy and social skills are advanced. For a child who was poked, prodded and isolated for so long we are in complete awe and extremely proud of her.
The biggest milestone of this year was overcoming the feeding tube. Eevie stopped eating when she was just a few weeks old. A complication of her chemotherapy was that she had sores in her mouth and throat called mucositis. The sores made it too painful for her to suck a bottle or breastfeed.
When she started using a feeding tube, we had no idea just how hard it was going to be to regain the ability to eat again independently. The feeding tube remained for more than three years – she needed it to gain weight. She was only 15 pounds at two years old.
Today, she is feeding without a tube. This particular freedom has been amazing. This is the first year she has enjoyed Halloween candy. Santa is going to fill her stocking full this year!
This year, Eevie was selected to be The Leukemia & Lymphoma Society’s Girl of the Year in the Mid-America Chapter. She had an amazing time and danced until midnight. It was magical.
We went on a family vacation with our pug mix Annie and our Bullmastiff Francis to our favorite place, Breckenridge, Colorado. Eevie started ballet at our local YMCA. She fed the sheep at the zoo, rode a miniature horse, and went to a classmate’s birthday party.
There are no more repeat rounds of chemotherapy, spinal taps, and serious infections. People don’t stare at us any longer. We don’t wipe down counters with antibacterial spray at restaurants. We don’t have to cover her in burn cream and gauze because of the severe reaction she experienced at age two. We don’t have to change IV dressings. And we don’t have to place feeding tubes. We just live. We live free.
Eevie’s fourth birthday is November 10. I never thought I would get to see my baby turn into a big kid. My husband and I will never know exactly why Eevie made it through all that she did.
We do know that the lifesaving research funded by The Leukemia & Lymphoma Society has been paramount to her success. Our family is so thankful for all that LLS does to help families like ours. Because of LLS, Eevie has been able to experience love, laughter, and freedom.
Reflecting on the last four years, I must say that in every way Eevie truly lives up to the meaning of her name “Life Warrior.” She is a light in the darkness. A symbol not to give up hope. And she makes me want to be a better person every day.
Brynne and her husband, Ryan, live in Wichita, KS. Ryan is a police officer and Brynne is a psychologist. Eevie is their first and only child. To read more stories about Eevie, click here.