Our Peanut was diagnosed with retinoblastoma around the middle of January 2011. She was only 3 1/2 months old. My husband was also diagnosed when he was about 5 months old and by the time he was 6 months, his eye had been removed and he was wearing a prosthetic. When I was pregnant, he had a dream that something was wrong with our little Elly’s eyes. So, from the minute she was born my husband told every medical professional about his diagnosis, in hopes that someone would take the time to really examine our baby girl. We had spoken with 4 different pediatricians who assured us that our baby’s eyes were perfect! As soon as we met with the 5th pediatrician, she immediately did a red-eye test (multiple times in fact), and even though she couldn’t quite tell if she was seeing something, sent us to Portland, OR to visit the Casey Eye Institute.
At the time, we were living in Eugene, OR, and my mother-in-law made the two hour trip with myself and Elly since my husband had to be at work. I remember meeting with Dr. Stout, speaking with him about our situation, doing red eye-tests, then finally going back for an ultrasound of her eyes…sure enough, there it was…a tiny tumor in the retina of her right eye. For the next 7 months, we found ourselves living in a fog…was this a dream? Were we really standing by our baby girl while she fought cancer? She was immediately scheduled for surgery to have a port put in her chest so she could start chemo treatments. By the time she was 4 1/2 months old, she had already undergone port surgery, laser eye surgery, and her first of 3 rounds of chemo.
Her first round of chemo was an experience I’ll never forget! We stayed at the hospital overnight in the chemo ward so Elly could be monitored while undergoing her first treatment. Staying in the pediatric chemo ward, seeing all the children, and meeting families whose struggles made our’s seem minuscule, was such an eye opener and made us feel thankful that we found Elly’s tumor so early on. Compared to most of the children and families, we were fortunate to know that there was a light at the end of our tunnel. Some were praying for a tomorrow, waiting for blood transfusions, or just trying to enjoy what little time they may have together.
For the next 6 months, Elly underwent 2 more chemo treatments, 4 more laser eye surgeries, weekly CBC’s (complete blood counts), and monthly EUA’s (exams under anesthesia). Finally, on August 11, 2011 we visited with an oncologist who gave us the great news that our 1o month old baby girl was cancer free! Elly Anne is now about to be 5 years old (on Oct. 2nd) and after countless EUA’s is doing amazing! We are now at a point where Elly is old enough to be examined without anesthesia and we only make those visits twice a year, which is something to celebrate. We have also been told that she has perfect vision! The tumor in her retina turned to scar tissue, so she doesn’t have central vision in her right eye but has maintained peripheral vision, which allows her to see movement.
Through this, Elly has given US strength and showed us what it means to be a true fighter! This experience has given us a new meaning to life and the realization that we truly do need to count our blessings daily. No child should EVER have to fight such a battle, but I’m very thankful to say that ours is a survivor!