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Lizzy's Story

Elizabeth was 11 years old when she was just eating a piece of pizza and she felt her jaw pop.  We made a trip to the ER and then oral surgeon.  We were told don't worry it was just a muscle spasm. Her jaw grew and grew until we ended up getting an MRI on Friday March 27th and then that Monday March 30, she ended up at Johns Hopkins Ped-Oncology Ward. After getting her pain under control they did a biopsy.

On April 8th 2009 we was told Elizabeth had Ewings Sarcoma. A rare cancer, that 150 kids a year get it, 85% are boys and usually it's in the leg or arm. Elizabeth fell into the less than 1.75% of the cases.  It was her lower jaw bone that was affected.

Elizabeth started chemo on April 10th after the put in her port and a G-tube.  At this point her tumor had broken through her cheek in her mouth and she could not longer eat or open her mouth. She was to have 6 cycles of Chemo, surgery, radiation, and then 6 more cycles of chemo. The Oncologist who told us what it was then said in 7 to 9 months she'd be done and her jaw would be fixed. "It was easy to treat and cure" he said. We never saw him again after that day.

Elizabeth turned 12 in June. In July I after her 6th cycle of chemo was finished I meet with her Oncologist to talk about her surgery and the next phase. At that time I was told her tumor had actually grown up threw her face, and into some nerves in her temporal lobe. So they we not going to do her surgery instead she was to not stop chemo treatments.  She had just finished up her last round that lasted 14 days and now she was to endure seven weeks of radiation at the same time as her chemo. No breaks! We did not know the extent of her tumor until that day.  The second week of December she finished her last five day chemo treatment. We were excited and hopeful and scared.

On December 28th she had a bone scan and a cat scan to see the results of all her treatments. On December 29th her Oncologist called to tell me they found something in her lungs. Ewings Sarcoma can and does spread while being treated.  It is a nasty cancer that can spread and become chemo resistant. It goes straight to the lungs. That is the one thing that the Doctors can't figure out about it. We learned a lot, her and I, about Ewings since that first Doctor.  Her life and mine changed that day.

There are more 11 nodules in her lungs, and On Friday January 15 she will go in for a biopsy on her lungs. She will be in the PICU for a few days and then her Oncologist will tell us what her options are. He has already said if it is confirmed Ewings they are not sure if they can cure her. Spreading cancer while being treated makes it harder to cure. She now  falls into that low survival rate.

The Doctor doesn't know Elizabeth that well. She is a stubborn child, she comes by it honestly, and she said give her all they have to fight this no matter what. She is sick of having cancer and doesn't want to die. She is ready to fight this Ewings no matter what she has to go through again, so we put the gloves on again.