Lilliana G. - Quilt Finished in 2008

Born: June 9, 2006

Illness: Retinoblastoma

Lilliana G.'s Story

Written by Lilliana's mom Theresa

Lilliana was born June 9th 2006. When she was born she was placed immediately on an apnea monitor. Her brother, Julian, had passed away from SIDS so this was a percautionay thing. Luckily she was on the monitor because she did experience apnes episodes. So when Lilliana turned one we celebated because at one year you are deemed safe from SIDS. We were so relieved. I thought we now could move forward without fear. Well I was wrong and how quickly things changed.

In December of 2007 Lilli woke up and looked as if she had pink eye. After being prescribed medicine nothing was making it better. So when I brought her in to the Peds they said she had Glaucoma and to rush her to CHOP so they could do emergency surgery to relieve the pressure. When we got there we were told that yes she had glaucoma but there was something else going on. So we had to wait to be seen at Wills Eye. That is were our lives changed forever. They sat us down and told us that Lilli had cancer and if her eye was not taken out immediately she was going to die. Two days later after just finding out she had cancer Lilli had surgery to have her eye removed.

After the pathology came back it was found that the cancer had spread into her optic nerve. So on December 26, 2007 she had to start chemo immediately. Lilli went though six rounds of chemo. As of right now we just wait and hope that he chemo has done its job. Lilli undergoes routine MRIs and exams under anesthesia. The doctors told us they were not even going to begin to be comfortable until at least December of 2009, that this will not show up in her brain. So right now we just hope and pray that does not happen. She currently is experiencing walking problems, she has a limp and falls a lot. Right now we do not know what is causing it. So we just live moment to moment and try to really enjoy everyday. We tend not to sweat the small stuff. Lilli is an absolute doll. She is so strong and my inspiration. I am so proud of her. We don't know what the future holds. But for now we are truly grateful and blessed she is here with us.