Xena is one of a kind. Her personality is beginning to show again and she is learning how to smile. We recently learned she has hearing loss and she can’t really hear much. She loves music television and light up toys and she loves to be held.

Xena was a very happy, normal, healthy baby. There were a few things we questioned and would ask the pediatrician and they would brush it off saying maybe she just needed therapy. Xena always tilted her head to one side or the other and she slept looking like a twisted pretzel. She had trouble latching onto pacifiers and bottles and could never latch to breast feed. 

Two days before diagnosis day is when our journey started. On January 12th 2016 our day started like a normal day, until lunch time. We gave Xena her lunch bottle and shortly after she began to vomit profusely. Thinking maybe her milk had just soured, we made a new bottle, waited a little and tried to feed her again to no avail. We took her to the local ER in our town. After 37 tests, 17 needle pokes and multiple blown veins, all they could say was she had a very horrible sinus infection. They sent her home on an antibiotic and zofran. Exactly 24 hours from the time we arrived home from the ER Xena had a seizure and became extremely lethargic. We rushed her to the ER in the next town over. They began work ups immediately and the doctor ordered a CT scan at which time they found hydrocephalus and the tumor on her brain.

Xena has had a total resection of the tumor and went through two rounds of induction chemo, 28 rounds of proton beam radiation, followed by 3 rounds of high dose chemo with 3 rounds of stem cell transplant. After treatment was complete Xena started experiencing regression that led to her having to have a trach placed. 

We have had a lot of strain on our family and social life. Her father lost his job and hasn’t really been able to find a steady one with all of the doctors appointments. Her brother knows more than any five year old should ever have to know in life. Cancer has changed us. We are more focused on our children and keeping them safe. We probably question every bump and bruise.

After treatment was complete in September of 2016, Xena began to experience regression. The treatment facility we were at could not figure it out so we transferred care back to her diagnosing facility. After some more tests we learned that Xena has an autoimmune disorder known as Paraneoplastic Encephalitis. Since the tumor was gone, it started to attack her brain and shut her body down. This led to respiratory failure. 
Her doctors were able to treat it and Xena is now on a long road to recovery. She is learning how to do everything again. It’s like being a baby all over again.

Xena’s Support Page

Hope Session by Casey Foggitt Photography |Facebook