Alexia Barnett
09/21/04 - 08/20/11
3 years old at diagnosis
Sinking Spring, Pennsylvania USA
Children’s Hospital of Pennsylvania, Hershey Hospital of Pennsylvania

In October of 2007, Lexi started to complain to us that she had “old legs”, and could not walk. We thought she was joking, because she used to tell her Poppa he could not catch her because he had “old legs”.

Then we noticed a couple days later that she was having difficulty getting up. We went to the family doctor who proceeded to tell us she had a double ear infection, and sent us home with antibiotics.

A week later she was worse and could not even walk up the steps. We went back to the family doctor who told us it was due to her laying around with the ear infection, and sent us home. That night, she spiked a fever of one hundred and five degrees, and we rushed her to the local hospital.

They kept running tests for Juvenile Rheumatoid Arthritis, and trying to keep her fever down, which just kept coming back.

After five days of this, they finally contacted Hershey Medical Center for advice. The doctors at Hershey Medical decided they were going to Lifeline her to the hospital within 1 hour. By the time we reached Hershey, she had spiked a critical fever. While we stripped her, packed her in ice, and got her fever down, they started to immediately run their tests. Twenty seven hours later, we were informed that our precious little one had a cancer that we had never even heard of before.

Neuroblastoma

She has since gone through seven rounds of high dose chemotherapy, surgery to remove her tumor on her adrenal gland, 3 more rounds of chemo, stem cell collection, stem cell rescue transplant, and 10 rounds of radiation.

She was finally diagnosed as NED (No Evidence of Disease) in September of 2008.

Then, in September of 2009, the nightmare that we all fear happened.

We were told they found a small spot on a scan, so we had to go through treatment all over again.

We started a treatment that Lexi had a severe reaction to, and she ended up with severe neuropathy, which required her to take morphine every two hours to help control her extreme pain. In fact, she was in so much pain she could not be touched anywhere on her body without it hurting her.

Update from Alexia's Grandma...

I am Alexia's grandma and it is with a heavy heart that i am sending this email Lexi has lost her almost 4 year battle with Neuroblastoma on 08/20/2011 at 11:55pm at home surrounded by the love of her family. She will be greatly missed and now we must figure out how to live our daily lives without our precious babygirl.