Ed note: During May, NF Awareness Month, we are posting stories of individuals and families living with and overcoming the challenges of NF. If you like this story please share it with your friends and family via email, Facebook, Twitter etc. Together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause.
Kendall was born on August 5th, 2010. We were told that we had a healthy baby and sent on our way. I knew from the start that something was not right with her. She did not look normal to me and was extremely fussy. Finally, at her 2 month checkup, the pediatrician agreed that she needed to see a GI doctor for her reflux and fussiness. We were able to get in with the GI doctor the following week. As soon as we got there she rushed us down to radiology and the first mass was discovered.
We underwent testing all week in the hospital with Kendall. We were shuffled from doctor to doctor and eventually told she most likely had cancer and would need a biopsy. The following week Kendall underwent her 1st surgery. The tumor in her abdomen was found to be inoperable. They took out a small amount and we were later told it was not cancer. Meanwhile, her doctors suspected something else was wrong besides just the tumor in her abdomen. After undergoing more tests, the doctors found 5 more tumors in her spinal column, one in her cervical and four in her lumbar. Everyone assumed she had neurofibromatosis developed by her own genetic mutation and not passed on from us. It has since been confirmed by genetic tests.
We were then referred on to Cincinnati Children’s Hospital, which has a NF clinic. Once we got there Kendall underwent more and more testing. The mass in her abdomen was once again suspected to be cancer. She underwent her 2nd surgery to debulk and biopsy the tumor. Once again, only a very small amount was able to be removed for biopsy. We were told 5 different times it was and then wasn’t cancer. The mass is currently putting too much pressure on her kidneys and has now caused her kidneys too much stress.
Kendall started chemo on December 20th. She underwent 4 rounds of inpatient chemo to try to shrink the tumor on her bladder. Unfortunately, the scans showed us that the chemo was not effective and so now she is getting ready to undergo a major surgery.
Our hope is that enough of the tumors will be able to be removed to relieve pressure off of her kidneys. The tumors that remain will eventually grow back. We believe that Kendall will see a time when plexiform neurofibromas can be treated. We hope that this surgery will buy her enough time until that day comes.
Kendall has inspired me to do whatever I can do to help find a treatment. In August, on her birthday weekend, my friend and I are hosting the first annual Walk/Run for CTF in Indianapolis. If Kendall can fight her battle and keep a smile on her face, the least I can do for her is to do everything in my power to help find a treatment. I am going to make it my mission in life to tell Kendall’s story and educate the community on NF.
Kendall has a very long road ahead of her with this disorder. She has had to deal with a lot of pain and developmental problems. We know that she is strong enough to fight her battle and grow to tell her own story some day.
Kendall has been such a blessing to us. She has taught us so much in her 8 months on this earth. We have learned to live each day to the fullest without worrying about tomorrow, which is too scary and uncertain right now. Kendall has taught us to find enjoyment in little miracles that occur daily in our household. She continues to amaze the doctors at how well her body is coping with all of its challenges. Just the fact that she wakes up with a smile on her face each morning is a miracle itself.
NF has robbed me of so many dreams I had for my baby girl. It has also given me a new appreciation for life and the ability to not worry about small details. I believe that NF has made me a better mother and given me more patience. I hope that one day Kendall can be proud of her body and learn to overcome the challenges that NF has given her.
– Kendall’s mom, Stephanie
To learn more about Kendall’s story please visit www.caringbridge.org/visit/kendallreeve
