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Kodi’s Story

Kodi Tutt, our 5 yr old daughter, was diagnosed with Stage 4 Neuroblastoma on March 9, 2010.  The week before, she had been playing soccer, attending school, and doing all the things a normal 5 yr 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 some leg pain in the fall of 2009 and was treated for Osgood-Schlatter (growing pains)...and she grew 2-3 inches in a very short time.  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 a 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 weeks 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.  This tough little cookie 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 in Fort Worth.  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 nametags...Reality began to set in that this was something much different than expected.

CT scan on Tuesday showed a mass basically the size of a football in Kodi's abdomen - 5"x8"x11", 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 basically 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 chemotherapy, which started on Thursday, March 11, 2010, and we know that we have a long year ahead.  Treatment will include 6 months of chemo, surgery to remove remaining tumor after chemo, stem cell rescue and transplant (Kodi's own stem cells), and 6 months of radiation and immunotherapy.

Our understanding is that NB is very aggressive, but responds well to aggressive treatment.  We are going to hit it hard, and try to do everything right to avoid infection and fevers.  Thank you for supporting Kodi and our whole family throughout this journey.  God bless!

Latest Journal Update

Scan results and next steps

We got good news at clinic, for the most part.


Scans came back negative (nothing visible to measure), which is great! She is responding very well to the mibg radiation. However, there are no open trials for relapse without measurable disease. Instead, Dr. Granger is creating a low-dose chemo cocktail that Kodi can take long-term to continue to kill/suppress any remaining neuroblastoma cells.


Starting next week, Kodi will get an IV chemo at the hospital one day each month and also start taking a low-dose oral chemo pill everyday at home. Dr. Granger also wants to do the regular beam radiation to her leg, but I don't know when that will happen...probably next month after the first radiation is past the 9-week mark.


This will be a much easier schedule than we would have had with the trial. Kodi should be able to go to school and church, and there shouldn't be severe side effects since it is a low continuous dose rather than a hard-hitting, frontline treatment.
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Comments

2 Comments

Becky Pulley
By Becky Pulley
Great news! Will keep all of you in my thoughts and prayers
Debbie Brookover
By Debbie Brookover
Kodi,
Great news. I absolutely love your beautiful smile. I can look at photos of you and I can't help but smile. Your smile has brought me through many a tough time. Thanks.