Kodi Tutt was 5 years old when she was diagnosed with Stage 4 Neuroblastoma (March 9, 2010). The week before, she had been playing soccer, attending school, and doing all the things a normal 5 year old enjoys.
We have discovered that Neuroblastoma (NB) is usually hard to diagnose in the early stages because so many symptoms are similar to normal childhood conditions. Kodi complained of leg pain in the fall of 2009 and was treated for Osgood-Schlatter (growing pains). The vitamin E supplement she was taking was working for the pain....No NB suspected. Mid-February, Kodi began having "chest pain" which was related to an inflammation where the rib meets the breastbone. Treatment consisted of 1-2 weeks of Motrin. This condition was later confirmed by labs...No NB suspected.
Toward the end of the two week treatment, Kodi's color was "not right." She began to look pale and her appetite was "off." She played soccer on Saturday, March 6th - her first (and last) game of the season, and it was awful to watch. She tried to run and keep up with the other girls, but she was obviously hurting. She did not finish the game, complaining of pain in her side, but still...no fever, no cough, no breathing difficulties...Nothing to really suggest anything more than scheduling a follow-up visit on Monday with the pediatrician.
Monday morning (3/8/10), we were able to see the pediatrician, who ordered chest x-rays to check for possible pneumonia. Within hours, we received the call to go straight to the emergency room at Cook Children's Medical Center in Fort Worth, TX. At that point, all we knew was that there was a "mass" near her spine. Suddenly we were meeting with doctors that had "oncology" written on the name tags...Reality began to set in that this was something much different than expected.
CT scan on Tuesday showed a mass in Kodi's abdomen,with another smaller mass near the spine. Biopsy confirmed the NB diagnosis, and later tests confirmed the extent of the disease. Kodi's entire body was affected. Bone scans showed cancer throughout her marrow and hard bones, as well as the tumors we had already known. When I asked to confirm the location of the cancer in the hard bones, I was told "head to toe"...when I asked additional questions to confirm what I was hearing, the doctor basically said..."it's not in her brain..."
We were admitted to Cook Children's to begin chemo, which started on Thursday, March 11, 2010.
To date, Kodi has received numerous rounds of chemo, stem cell collection, and surgery to remove the abdominal tumor, stem cell transplant, radiation (including a special m-ibg radiation in San Francisco, CA) and antibody therapy at St. Jude's in Memphis, TN.
Kodi's scans were clear for about 18 months. She relapsed in 2014, got cleared, and relapsed again in 2015. Kodi is currently receiving chemo and antibody therapy at Cook Children's Medical Center, Fort Worth, TX.
Thank you for supporting Kodi and our whole family throughout this journey. God bless!
