Featured Little Hero Kendall Reeve
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 two 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 they told us 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 the tumor in her abdomen. After undergoing more tests, the doctors found five 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 five different times it was and then wasn’t cancer. The mass at that point was putting too much pressure on her kidneys, and was causing them too much stress. Because of that we did a 2nd MIBG, which revealed a big mass, and it was on the posterior wall of her bladder, and was in fact stage III ganglioneuroblastoma.
Kendall started chemo the week after Christmas. She had four rounds of chemo. After rescanning, we found that the chemo had done nothing for the main mass, and we would have to start thinking about surgery. On May 12, 2011 Kendall underwent a nine hour surgery where she had to have her bladder removed. Luckily, the surgeon was able to save her uterus. We are currently still in the hospital recovering with a lot of pain management issues. They were able to remove 80% of the masses in her abdomen. We are waiting on pathology results to show us how much the cancer had spread to other areas of the tumor. There still is a chance she may have to undergo more chemo or radiation. The tumor in her cervical spine has grown enough that it is displacing her spinal cord. There are also two new tumors in both of her legs, as well as one in her right shoulder area.
After her battle with cancer, she still has all of the challenges ahead of her that exist with NF. We will have to get MRIs frequently to assess for new tumors and growth of the ones in her spine. If the ones in her spine start to compress, we will have to remove parts of them. She also faces other challenges like scoliosis, learning disabilities, bone abnormalities, and chronic pain.
There currently is no treatment to shrink tumors from NF. The only thing they can do is surgically remove them, which in most cases can have devastating effects. Kendall’s tumors will grow back; it is just a matter of how fast and how bad.
Kendall has taught our family the joy of today. We no longer worry about what lies ahead for any of us in the future. It can be too scary and overwhelming. We take joy in the smiles we see on Kendall’s face and know that she was born a fighter. She inspires me to fight for her and has opened me up to a world that I never knew existed. Through Kendall, I have gained an entire network of friends, most of which I have never even met face to face. We continue to trust in God’s plan for her and know that she was born with a purpose. As long as Kendall is here, we will give her the best care possible and fill her life with as much joy as we can.
Follow Kendall’s updates: www.caringbridge.org/visit/kendallreeve
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