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    Posted July 4, 2014 by
    North Carolina
    This iReport is part of an assignment:
    Raising a special needs child

    My child has inoperable brain tumors

    Dylan was born in 2009 at 32 weeks. He sent 5 and a half weeks in the NICU. He had to have hernia surgery when he was 8 weeks old. He then developed a staff infection a few weeks later had emergency surgery and spent a week in the hospital on IV steroids. He had problems with his formula. He had bad reflux. He could not keep enough food down and got a failure to thrive diagnosis. He was not sitting up when he was 11 months old, so I called in Early Intervention to check him out. A nurse practitioner noticed that he had a lot of café-o-la spots. I thought she was a little nuts worrying about birth marks when my child would not sit up. I mentioned it to his pediatrician at his year appointment. She brought out a UV light and a tape measure to check out his birth marks. I thought we were on a episode of CSI. She said he was specious for neurofibromatosis (NF-1), but she wanted to refer him just to make sure. While waiting for the referral we saw his neonatologist. His head circumference when from the 80th to 90th percentile in a month. She ordered a CT scan. It came back suspicious. We managed to get in with the specialist who ordered an MRI. The MRI came back with Dylan having bilateral optic gliomas (inoperable brain tumors). Dylan received the NF-1 diagnosis. NF-1 is the most common genetic disorder and I had never heard of it. My husband and I were tested for it and we do not have it. It was a random mutation of a gene. He was referred to a pediatric neuro- oncologist and a pediatric neuro -ophthalmologist. The brain tumors were watched for a while, but then it was decided that chemo was needed. He had surgery to put a chemo port in. Radiation was not an option for his tumors. Chemo in small children is not done in weeks it is done in years. The first three types of chemo did not have any impact on the tumors. Dylan was not eating and he had another failure to thrive diagnosis, so he had to have a feeding tube put in. He then had to have exploratory surgery for an infection and spent a week in the hospital. The feeding tube has really worked well. Dylan looked so healthy with extra weight on him. He actually started eating other food during the day and we were able to cut back on his tube feedings.
    The doctors kept telling us he was behind with his speech and that he needed to have speech therapy. It took several months to find a speech therapist. (If you need a career, go into anything that deals with kids. There seems to always be a wait list.) He loves speech therapy and his speech is coming along.
    Things though are looking up as far as his tumors. We went every two weeks for chemo and Dylan is finally getting a type of chemo that has started shrinking his brain tumors. The latest MRI showed that his tumors are stable. They are no longer growing or shrinking. His doctors think that his tumors may never go away.
    2012 was full of doctor’s appointments for the entire family. We had every other week chemo appointments for Dylan until September when chemo stopped due to causing problems with his kidneys. We hoped that he had received enough to keep the tumors from growing, but the October MRI showed that the tumors were growing again and Dylan will be having another one in December just right before Christmas.
    On a positive note, Dylan was able to have his feeding tube removed. He has gotten his weight up and is eating better. We have also taken this opportunity while he is off chemo to put Dylan into child care. He loves it. He is excited to go. He goes 6 ½ hours a day. They are working with him on socialization. He likes playing with other kids. He is also receiving speech therapy at the child care. 2013 was an entire year without chemo appointments for Dylan. It has allowed our lives to be somewhat normal. He was able to get caught up on his vaccinations. Dylan’s tumors are stable and monitored with MRIs ever four months.
    Dylan still loves his child care. He has so many friends there to get in trouble with. He is doing so well we have cut back on his speech therapy. We have started physical therapy to help him hold a pencil and use scissors. We also took him to be evaluated by a Neuro-Psychologist. She gave him an Attention Deficit Disorder Diagnosis. The diagnosis will help him when he starts Kindergarten in the fall of 2014. We have started family counseling to help us with his behavior issues.

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