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Living With…Neurofibromatosis (NF)

Kendall was born on August 5th, 2010. We went home with what we were told was a perfectly healthy baby girl. Over the course of 10 weeks, we noticed she seemed to be very uncomfortable from something. I assumed it was reflux so I took her to a GI doctor. Within 5 minutes, the doctor felt the first of many tumors. We were rushed to radiology and told that it was serious. Over the course of a week, we learned that Kendall had Neuroblastoma and would need surgery and chemotherapy. After more detailed scans, we learned that Kendall was full of tumors and had another condition called Neurofibromatosis (NF). She had tumors all through her spine, abdomen, and left leg.

Neurofibromatosis is a genetic condition that can cause tumors to grow along the nerve pathways. Malignant tumors can be rare with NF. Along with tumors, NF can also cause muscle weakness, learning disabilities, bone abnormalities, scoliosis, pain, itching, and optic gliomas. Some people can live a somewhat normal life with NF, while others find it debilitating for them.

Unfortunately for Kendall, her condition has impacted her life a great deal. Because of the neuroblastoma, she had to undergo chemo at 5 months of age. This caused her to have feeding problems which continue to this day. She is fed 100% from a g-tube. The chemo did not work for Kendall so at 9 months old she had to undergo a lengthy surgery to have her bladder removed, which is where the tumor with neuroblastoma was. Besides that surgery, she has had two more spinal surgeries to have tumors removed that were compressing her spinal cord. The rest of her tumors are inoperable at the moment. They are pressing on her spinal column causing severe scoliosis. They are also making her unable to walk due to them attaching to the muscles in her left leg. Kendall deals with pain on a daily basis from the tumors. At times we are not even able to touch her without her yelling at us.

Finding comfortable positions and ways for Kendall to get around has been quite a challenge as she has gotten older and the condition has worsened. We have recently built a new house for our family to accommodate her mobility needs. She has a new wheelchair that she is quickly learning how to use around the house for her independence. We are also working on having her use it in the community, like the library, and at her preschool. She does not use the Rifton Pacer anymore. We were told no weight bearing on her left leg because of her weak bones. She does love to swing.

She has also benefited from the Special Tomato Booster Seat for sitting on the floor or at the table. We have recently been able to enjoy going out to dinner again without having to hold her the entire time. She loves sitting in her booster seat.Braden is 7. They have a love/hate relationship. I guess it is like most siblings. He's been through a lot these past 3 years with all of the sickness that has taken me away from him. He has so much patience with her now. He is always helping her get her toys or trying to make her laugh. Tanner is 6 months old now. Kendall isn't too sure what to do with him. I think she is going to have some training to do once he starts crawling. Hopefully she can teach him to go fetch her toys instead of steal them.

Kendall’s medical condition has changed our lives completely, some good ways and some bad. We have really learned how to just live in the moment and not put so much emphasis on the future. We really don’t know how long she will be with us so we don’t waste time worrying about next year or 10 years from now. Kendall has made us a stronger family with a much stronger faith. We rely 100% on our faith in God and what He promises us.

Kendall’s condition has also brought us a new family that we never would have met otherwise. We are very active with the Children’s Tumor Foundation and participate in fundraising to find a cure. Kendall’s tumors have absolutely no cure or treatment. We had the choice of just sitting and watching them grow or actually doing something about it. We picked doing something and joined the efforts of hundreds of other families across the United States. Through this, we have made friendships that will last a lifetime. For the past two years I have orchestrated an NF Walk in Indiana that has raised over $60,000 that goes to research. We have enjoyed networking with other families in our area and finding support.We continue to hope and pray that a treatment for Kendall comes along. She has participated in one clinical trial so far and we are hoping to get her into another after her third birthday. At times it gets very overwhelming but the reward for all of it comes when she smiles and says “I love you Mommy.”

To learn more about Kendall, please visit her blog. www.caringbridge.org/visit/kendallreeve