Ila Jean was a miracle from the day she was born. She was meant to touch peoples lives in a very special way and she accomplished that and will continue to for a long time to come.
Ila was born on February 4, 2005 in upstate New York to John and Jenny Rathbone. She was welcomed by her older siblings, Monica and Howie who were almost four and five at the time. Ila started her little life with a fight. She was brought back to life three times within the first two hours of birth. She proved to God she had the strong will to survive and get through the path he had planned for her.
We took her home and she was a very happy and content baby. She grew as any baby would and was a good sleeper and eater. She loved to play with her brother and sister. Her first birthday came and went and she hadn't started walking yet. I was a bit concerned, but not enough to call the doctor. She was just a late bloomer I figured. She also had the biggest baby belly and by summer had developed the only outie belly button in the family. Strange, I thought, but that was all I did. Have a thought once in a while about how big her belly was or how strange it was for her belly button to stick out and then those thoughts were tucked away. She had started walking by then but by mid August of 2006 Ila wasn't herself. She started to become very cranky and she developed a low grade fever. After a week and a half of odd behavior, crying and screaming during the night, changes in eating and sleeping habits and a trip to the doctors office that led us nowhere, I had seen enough. Something was definitely wrong. On Sunday morning John and I had already decided that I would be taking her in the next morning and demanding bloodwork at the very least when we suddenly noticed that she had developed a black eye out of nowhere. Later that afternoon she then spike a fever of 103.5 and I called the doctor. I gave her Tylenol and the fever came down and I planned to bring her in first thing the next morning.
Once we were there, the doctor obviously did not like what he was seeing and because Ila was crying so much, he was not able to get in a good exam. With concern over her large belly and her black eye, he decided to send us for bloodwork and also an abdominal ultrasound. I dropped the kids off at a friends and then went to the hospital with Ila Jean. We had her blood drawn first, then went to ultra sound. It was there that the uneasy feeling started. Something didn't seem right, but I thought if it was serious they wouldn't let me leave. Well they did, so I left and picked up the kids and went home. By the time I got in the house, there were ten messages on my phone from the doctor for me to call immediately. I will never, for the rest of my life, forget the following phone call that took place. I called in and the doctor got on the phone immediately and told me that a mass was found on Ila's kidney. BOOM. My heart dropped to the floor then raced at an unbelievable speed. The next hour or so became a complete blur as I rushed in a panic making phone calls, getting help for the kids and bringing Ila Jean to the hospital.
By the next morning we had our diagnosis. I was with my sister as the oncologist told me that my 18 month old little girl that I was holding in my arms had Neuoblastoma. I asked what it was and she replied, "Cancer". She then told me that she was in Stage IV high risk, which made no sense to me as I did not even know how many stages there were, nor did I want to know. All I knew was that my baby had cancer. Then the prognosis. Ila Jean had a 1 in 3 chance of survival. My immediate reply was, "She will be that ONE!".
And so our journey began. It was a very long journey that had us in Albany Medical Center Childrens Hospital more than we were home until March of 2007 when we took a turn in our treatment course and headed for Memorial Sloan Kettering in New York City. It was there that we were introduced to the world of Neuroblastoma in a whole new way. That was the center of the neuroblastoma community and it was amazing to be around so many other children and parents dealing with the same type of cancer. Things did not go the way we had hoped for Ila Jean and her cancer was taking much longer to go away. Ila ended up with 16 rounds of chemotherapy along with antibody therapy over 17 months before she was finally declared as having no evidence of disease. She continued on chemotherapy and antibody treatments to maintain her cancer free status and remained in treatment on and off until April of 2010.
Throughout this time and continuing on, she had scans every three months to check on her cancer status. Despite the treatments and scans, she had completed two years of pre-k and was in kindergarten. In May of 2011, she went to have her normal three month scans and to our great disappointment, Ila Jean had her first relapse with a localized tumor in her belly. We took her down to Memorial Sloan Kettering a few days later and the following week she was operated on. She went through a very intense surgery and three very high dose rounds of chemotherapy. Her summer was spent in a hospital bed between NYC and Albany. By Thanksgiving she was once again declared cancer free and was finally able to attend first grade.
One month later, just three days before Christmas, the morning after her school concert, Ila Jean woke up with a fever. She had complained of leg pain on the way out of the school the night before so this was very worrisome. Later that morning, it was confirmed what I had already felt in my heart. Ila Jean had relapsed a second time. We spent Christmas at home and the next day took the whole family to NYC. A week later we learned she had three tumors and mulitple small spots throughout her abdomen. We did chemotherapy and after one round found that the cancer had grown even more. At this point her options became very limited and we opted for a clinical trial at the National Institute of Health in Maryland. After three weeks on the trial it was evident that the trial was not working and after a scan it was confirmed. After being turned down by every hospital we tried to contact for other trials, we were told to bring our baby girl home. She fought a good fight. It was time to make her comfortable.
Ila Jean Rathbone passed away in my arms just after 5pm on Sunday, April 15, 2012. She was an angel on earth and the most amazing little girl. I was so very lucky to be her mommy for seven glorius years. It has been difficult for our family to say the least. After many months of 'talking' to Ila and praying about what I should do, I suddenly came up with this idea and felt in my heart that this is what she wanted. She loved everyone and spreading awareness was her favorite thing to do. She helped develop the original Team Ila Jean when we did the St. Bldricks event just three short weeks before she went to heaven. The heart with the gold ribbon was her idea. It will always be the symbol for Team Ila Jean.
Please join us in spreading awareness and participating in events across the country to show support for Childhood Cancer. This is just the beginning, Let her light shine through you.