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Leighton Everly’s Story


Please note that Caring Bridge has a link to donate. Donations to this site DO NOT go toward Leighton's treatment, but instead to the company behind the site itself. Your prayers and well wishes are all we could ever ask for, and are absolutely more than enough. However, if you would like to donate to Leighton's care, a friend has created a fundraising site that can be found here: http://www.gofundme.com/8vhd6s. 

Donations made through Go Fund Me go directly towards Leighton's care. 
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Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

On 4.22.14 I took Logan to a physical at his pediatrician's office. I noticed Leighton's stomach looked swollen and felt hard, so I made an appointment for her to see the doctor following Logan's exam. When we met with the doctor, she said Leighton's belly looked distended, and sent us directly to the ER at Children's Hospital. An x-ray was taken of her stomach, which showed a large mass in her abdomen. A CT scan was performed, which confirmed the mass  was a tumor. Bloodwork results showed that the tumor was very likely cancerous, and the biopsy that followed confirmed so.

We are constantly learning more and more about the disease, treatment, and what we will face in the months to come. I will continue to keep this updated as often as possible as we progress with treatment. Thank you for the continued outpouring support.


Latest Journal Update

5.30.14 - Half a lifetime in the hospital.

Still obsessed with the ugly mobile.
Still obsessed with the ugly mobile.
We've now been in the hospital 38 days. It feels much, much longer... and unfortunately by the time we're out of here it will be. Leighton's next surgery (a BIG one) isn't scheduled until June 25th. If you include the time spent at Evergreen when she was born, today Leighton has lived in a hospital exactly as long as she has lived outside of one. 

We are kicking it on the "main floor" (River) with a 4 month old roommate, an outdated TV, and a "bed" that will leave me with chiropractic bills rivaling Leighton's (just kidding, that's impossible), but it's not all bad. Leighton has had some good news, and I'll trade in any comfort if it means her situation is improving. She had a blood draw a couple of days ago to check on the levels of her cancer marker. A month ago her AFP level was 21,700, much higher than the 8,000 count they'd expect to see in a baby her age. I believe at the time of surgery, the number had risen to 27,000. The count from a blood draw taken two days ago was 1,000. A baby her current age should have an AFP count somewhere around 800. Everyone agrees seeing hers at 1,000 is very good because it has dropped so significantly. They're not alarmed that the count is slightly elevated, because it's trended downward and that, more so than the actual number, is what they're focused on. Hopefully this means the cancer is gone. 

There is other good news as well. Today she was taken off her last antibiotic. She had been on 3 because of an infection and risk of further infection. Two had been removed a couple of days ago, and the final antibiotic was stopped about an hour ago after her surgeons and the doctors from the infectious diseases team concluded it was safe to do so. They are still working on weaning her from her fentanyl, the pain killer she's been on since what feels like the dawn of time. They've tried to drop it twice before, but she always had really horrible withdrawal symptoms (fever, elevated heart rate) so they've had to increase it. They made a pretty big drop on it today (though said she's still getting quite a bit) and so far she seems to be handling it ok. Today they removed the suction from her NG tube (the tube in her nose sucking stuff from her stomach). The tube is still in, but working on gravity alone. If her g-tube is draining adequately, they hope to remove the NG tube completely, which means we'd get to see more of her pretty face! She lost her third drainage tube the other day. That wasn't necessarily based on doctor's recommendations. It fell out and since it was not draining anything specific and hadn't been used much recently anyway they just decided to keep it out. She got a few new sutures to make sure the others stayed in place. Every time we lose a tube it gets that much easier to hold her, which makes everyone happy. 
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Comments

6 Comments

Amanda Gregg
By Teamleighton
I was wondering the same, I think our sweet baby girl spread her wings and is watching over all of us from up above. I was up all night thinking about her and started digging on the internet. If this is the case, I'm soooo sorry for your loss but so inspired by this sweet little girl.
casey bilbrey
By casey bilbrey
hows shes doing?
Heather Greenwood
By heather walker
Prayers for sweet little Leighton. Everyone is rooting for you and your family
Kathryn Cooper
By Kathryn
My heart reaches out to Leighton and your family with prayers for every miracle possible. May they strengthen her body, give her comfort in her journey, and infuse you with peace and fortitude. I know what it is to pour every ounce of love, compassion and hope into a newborn child connected to wires and tubes. I envision beautiful healing light surrounding your entire family. Though we have never met know I am here, I care and I am continually and compassionately praying for your beautiful baby girl.
heather bryson
By
Thank you for sharing! Praying for more victories!
Dawn Helm
By Dawn Helm (previously Rypka!)
Most of your sharing about Leighton is such good news! I've been going thru old photo albums recently and come across you, Colleen and your Mom often! Such good memories! Praying daily and nightly for your little darling. Just a reminder, take good care of yourself too honey. You are a one strong Momma!!!!
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