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NoahNoah

Five years ago our family was blessed with the most beautiful addition to our family, Noah. Prior to his arrival, we were given some very difficult news about his health. We found out that Noah had a rare disorder that did not even have a name, but was referred to us as Chromosome 13q deletion. Doctors were extremely discouraging, but we had to rely on our faith to make some critical decisions. With this information, we researched Noah's abnormality and learned that Noah, as well as our immediate family, would have many many mountains to climb in his lifetime. The chromosome disorder would leave Noah with obstacles that all parents do not want to see their child face. One of the blessings was that my background was in Special Education and I truly feel that God had prepared me to raise a child with special needs. We prepared and worked with Noah from the time he was able to leave the NICU. Just when we thought we were prepared to face these hurdles in Noah's life, our world was rocked. Exactly 2 months after Noah was born, he was then diagnosed with Bilateral Retinoblastoma, tumors in both retinas, and one on the optic nerve. One tumor on the right eye has left Noah blind in his central vision.

Noah TreatmentNoah immediately started chemotherapy at Children's Memorial Hospital, 7 rounds total. He was put under anesthesia every other week for 18 months to try to laser the tumors all while receiving 3 therapies a week at home to help with his disability. Noah had many blood transfusions during chemotherapy and continued to have the cutest smile on his face. During treatment, another tumor had formed on the retina but our wonderful doctor was able to laser it away. After the 18 months, one tumor, the one on the nerve, was very stubborn and our opthalmologist came to us and said that she just cannot do anymore with this tumor. There was fear that if she lasered it one more time, it would burst and seed to the brain. The other dilema is that if we left it alone, it would seed into the brain stem and then there were no other options for Noah. Our doctors, oncology and opthalmology, consulted with the top doctors who specialize in retinoblastoma throughout the entire country and gave us two choices, enucleate the left eye and leave him blinded or try radiation. Our oncologist said that normally they would make this tough decision and then just guide us through, but in Noah's case, it was tricky due to his chromosomal abnormality. We decided that enucleation was best to just be rid of this tumor and save Noah's life but then were scared as to how his life would be in the future. We decided to go and speak with the radiation oncologist at Northwestern just to see what she would say. She told us that she did not feel comfortable radiating Noah but wanted to give Proton Beam Radiation a shot because it was much safer for him. Only problem was that there were at the time only 3 places in 3 different states that took pediatrics and you had to be approved by their board to receive this treatment. We decided on Boston because they founded Protons and had been treating with it the longest. Noah's case was sent on a Thursday and that next day we were told that we needed to be in Boston by Monday to start 22 days of treatment. A lot of scrambling happened and we made the decision to go to Boston and stayed for 2 months to complete treatment. Noah was the first retinoblastoma case but we needed to try this. He was put under anesthesia for the 22 days and received Proton Beam Radiation Therapy. This therapy only targeted the tumor and boy did it. Before leaving Boston, they were able to tell that it was working. Here we are 3 years post protons, chemo, over 100 laser and eye exams under anesthesia, blood tranfusions, etc., etc, etc., and Noah is in remission.

This journey has come with many ups and downs but has truly changed our family in such a positive way, it is very hard to put in words. Noah's older brother, Adam, had to do some quick growing up, but we are astonished by his compassion towards his brother and others in general. We heavily relied on God to get us through this and continue to rely on his strength to walk this journey each and every day. As I stated before, Noah has many mountains to climb, but we are ready to climb those with him. We take each day as it comes and learn and grow from them. Our family moto has become "Keep Faith" and we look to the verse, "We walk by faith, not by sight" each and every day.

Noah is such a happy little guy and is our fighter and our little miracle boy. Noah currently is in preschool with the Westlake Special Education Cooperative and is an avid sports player. He just finished his first session in basketball and will be starting soccer and baseball soon. Last year he was honored with the Schererville Baseball League and threw out the first pitch on opening day. What a great accomplishment and we could not have been prouder.

We of course could not have gotten through this without support. It is extremely important to make sure you surround yourself with positive people. Our family is so very blessed and surrounded by such wonderful family and friends who have supported ALL of our decisions with Noah. We have also met many families along the way to help us, just like the families with NICK.

Here is a recent photo of Noah, as well as one of him when he was first diagnosed.

www.caringbridge.org/visit/noahwalters