I’m Jane Foust, vice president of government programs at Geisinger Health Plan. I’d like to share my family’s story of dealing with cystic fibrosis.
My co-workers at GHP knew how severe Lannah’s condition had become. They knew I was at the hospital before work, at lunch, and after work until Lannah fell asleep at night. They formed a team of angels that made sure I had a meal every day. They filled her room with “65 roses,” which is what some children with cystic fibrosis call their disease because it’s easier for them to pronounce. My GHP family sent gifts: pajamas, teddy bears, funny socks, blankets, and lots of prayers. They decorated hands to wrap around her room, giving her a big hug. They visited and played games with her, and some brought their teenage daughters. They mowed my grass and gathered my leaves.
Once the new feeding tube was placed, Lannah’s nutrition started to improve and she was gaining weight. The goal was to get her healthy enough for surgery. Her doctor developed an innovative way to nebulize the antibiotics she needed to fight her lung infections. With new treatments in place, it was time to go home.
It took two days to gather her belongings for the transfer home. Lannah’s aunt and her husband helped me convert my home office to her “sick” room. We bought a recliner so she could sleep with her lungs elevated. The case manager arranged for deliveries of an oxygen concentrator, portable oxygen cylinders, and a turbo nebulizer for the new therapy. We added this to the existing equipment — a vest therapy machine, a feeding pump and a small nebulizer.
On Thanksgiving Eve, I took time to reflect on how greatly Lannah’s health had improved over the last few weeks. Then it hit me. I realized the magnitude of her new treatments. It was so overwhelming that it brought me to tears. Lannah is excited, we are home, and Grammy can do anything.
We learned and followed the routine: Breathing treatments four times a day with five different medications and tube feedings every night. Eventually a nursing staff came to stay with Lannah so I could return to work. We saw slow but steady improvement in Lannah’s health.
By January she was strong enough for the surgery to remove her gall bladder and do a fundoplication. Her doctor prepared us for the worst-case scenario — intensive care, a two-week stay and a risk of developing pneumonia. But Lannah did well and we were home in four days. Take that, cystic fibrosis! The next few months were long and lonely, but Lannah just kept improving. She had a tune-up in July and was home to celebrate her 16th birthday with family and friends. The next month we planned another trip to the beach. This year, Lannah played in the ocean, built sand castles and even played beach volleyball. What a difference!
Today, we continue the same treatment plan, except now we only do tube feedings five nights a week. Lannah is at a healthy weight, her long blonde hair is back, and she acts just like a typical teenager. She goes to school part time, although accompanied by a nurse, has sleepovers with her friends and even got braces. Lannah and I are forever grateful for the loving support we received from our friends and co-workers at Geisinger Health Plan.
Lannah wrote the poem below to express how cystic fibrosis has affected her over the last two years. Her chronic condition has made her wise beyond her years. She doesn’t understand teenage drama — I sometimes have to remind her that her friends can’t understand what she has experienced. In her 16 years, she has learned life lessons that most of us spend a lifetime chasing.
A poem by Lannah:
I can’t hold it in any longer.
You can’t stop me now.
I feel like I’ve gotten weaker
But I don’t know how.
I watch the days go by.
As the days turn to night,
I try not to cry.
The pain is getting worse so I just might.
As people come in and out,
It brings me joy, then sorrow.
When they leave I try not to shout,
"Will you be back tomorrow?"
By now my depression has kicked in.
I feel like giving up.
I don’t know if I will ever see you again,
To me there was nowhere else to go but up.
Was this really the end?
No one was prepared,
But for my family I had to pretend
That it was okay.
Breathing was the only sound.
My pain will go away.
But at that moment things have turned around
I thought to myself I can’t give in.
My friends and family can’t live without my love.
It’s this fight that I will win.
I’m staying down here it’s not my time to be above,
With all my loved ones.
This is a battle I have won.