Make A Child Smile

NOTE FROM THE MACS STAFF

Christi's story has NOT been updated yet since she passed away on September 19th, 2006. We will update the end of her story as soon as we receive more information from her family.

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Christi's Story
written by mom Angela

On Monday, May 12th, 1997 a beautiful, seemingly healthy 8 pound, 4 ounce precious baby girl entered the world. A perfect baby, she was named Christine Shayna and we always called her Christi.

Throughout her young life she was extremely active, alert, silly, fun loving and smart. She always amazed us with her little mind. At age 18 months she knew all of the alphabet letters, at 24 months she could count to 54, at 36 months she knew all of the letter sounds. Christi taught herself to read and could add and subtract positive and small negative integers and do simple multiplication when she was only four years old. She thrived in preschool and was so anxious to finally start school and to be in the first grade. Her future looked so bright!

She was always so healthy (or so we thought) and only had minor sicknesses throughout her young life. Then, she started complaining of back pain in April and May of 2001. We took her to her pediatrician and to the emergency room for severe back pain on about five occasions. Each time we were told it was constipation and then the pain would go away for a while. We were hesitant to take her back when she complained because the physicians kept saying there was nothing wrong.

She didn't complain of back pain much at all during the summer, but it started again a few days before school began. On her very first day of school, I woke her up and she was absolutely thrilled and excited beyond belief, but then quickly crawled back in bed and said that her back hurt and asked if she could rest it for just a little bit. She must have pushed the pain out of her mind because she quickly came around and wanted to go to school and take a present to her teacher. She had a wonderful first day of school!!

After attending school and thriving there for just ten short days, I brought her home early on a Friday with a low grade fever. The next day I took her to her doctor and she was put on antibiotics for a sore throat. On Sunday she was still restless and not moving from the couch or her bed. Her low grade fever remained. Suddenly, she woke up from her nap screaming in abdominal pain and yelling that she couldn't breathe. Daddy carried her out to the van and stayed with little Shayla while I took off for the emergency room. They couldn't find anything wrong, but admitted her and I was thrilled that finally we were going to get to the bottom of this. Nothing was found (that I was told of) on Monday and I thought we were going home at noon on Tuesday. Then the doctor walked in followed by a nun, priest and a nurse. They told me that they found a tumor along her spine and around her heart and that she needed to be transferred to a Children's hospital.

Many tests were run, two hours from home at Children's Hospital in Columbus, Ohio. On September 11th, 2002 we were told that our cherished 5 year old 4 month daughter had Neuroblastoma, a rare childhood cancer and that it had spread throughout her tiny body and into her bone marrow. (The most advanced stage 4.) Her prognosis was a 35% chance of surviving for 2-5 years and a 5-15% chance of surviving for twenty years.

She's started intensive chemotherapy; however, after four high dose rounds it was deemed medically necessary to transfer her care 500 miles from home as her bone marrow never cleared of the cancer. Our family lived at a Ronald McDonald House near the world renowned hospital which treats more cases of Neuroblastoma than any other on the planet for nearly 9 months. Unfortunately, after three high dose rounds of chemo, 4 rounds of enduring very painful Phase I monoclonal antibody treatment, the cancer in her bone marrow still thrived.

For her sixth birthday, Christi went to Disney World where she enjoyed a week with her cousins and family. In July, a life threatening surgery was performed successfully which removed 100% of her tumor (Praise God!!!) Next a Phase II chemo was tried to keep her cancer steady until she could get into another clinical trial. This chemo was endured for three rounds and the last two were done at home - where our entire family longed to be living.

In October of 2003 Christi went to yet another hospital and participated in a Phase I clinical trial (Rapid High Dose MIBG infusion with stem cell rescue). During this treatment she was actually made radioactive and anything she touched or played with had to be discarded as radio active waste. Unfortunately, in January 2004 when the treatment protocol ended, it was learned that the treatment did nothing to help eliminate or reduce the tumor burden in Christi's bone marrow. Because of the very harsh treatment, her blood counts are still trying to recover and therefore she doesn't qualify for any other clinical trials. At the end of January 2004 she started a drug called 13-cis-retinoic acid which is designed to mature cancer cells. Hopefully, after a few rounds of this she will have the blood counts to support participating in yet another trial.

We are most thankful that currently, Christi looks and feels GREAT! She's had near perfect attendance in second grade and again brought home a straight A grade card. She attends ballet, Brownies and religion classes and handles all of the weekly needle sticks and medicines like a brave champion. We've truly been blessed to have such a beautiful, remarkable little girl and have been so blessed to have been surrounded by your great groups love for so long!!

The future now looks gloomy at best, but with Christ, all things are possible and with Christi - one never know what may happen next! (smile) We have a team of prayer warriors fighting daily for this little child of God and we invite you to join in this bloody war, as Christi fights for her life this year. Thank you and God's blessings to you all!!