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 (NF)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. Because of this we did a 2nd MIBG which revealed the mass, which is in the posterior wall of her bladder, is in fact ganglioneuroblastoma.
Kendall went through many kinds of chemo to try to save her bladder and shrink the cancerous tumor. Unfortunately, none of them were effective. We had to have her bladder removed in May of 2011. They tried to get as much of the abdominal tumors as possible but were unable to get to many of them. She still has tumors on her cervical spine, lumbar spine, and down her left leg.
Kendall eats from a gtube. We work daily with her to try to get her to eat from her mouth. She has a hard time swallowing but is making progress day by day. We will continue to feed her through her gtube due to her very low weight. She has a lot of growing to catch up on.
She is also unable to use her legs. Her left thigh is full of plexiform tumors that are attached to the muscles causing her thigh to rotate outward. She is uable to bear weight or move the leg much. We one day hope to get her in a motorized wheelchair so she is able to move around her environment.
There currently is no treatment to shrink tumors from NF. There are many studies being done, but unfortunately nothing has been successful. More funding is needed for this genetic disorder. 1 in every 3500 babies are born with this.
That is Kendall's story in a nutshell. She has taught us the gift that today brings. We don't worry too much about her future with us because we would miss what was right in front of us. We know her ultimate home is in Heaven just like the rest of us. We try to remember that this time with her is such a short moment when compared to the eternity we will spend together one day. She is such a special gift to us and we can't wait to see her story unfold.
