My 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!

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carol martin signed Kodi's Guestbook.

What a special girl you are, Kodi! Our congregation at Grace Baptist Fellowship in Celina is praying for you. Your story has touched so many lives. Be strong and know that ... Read more

Lori Berkhimer signed Kodi's Guestbook.

I've been praying for your family, and most especially Kodi (Ethan, too). Please tell Kodi how much we care for her at Clear Creek. Third grade is leading the donations of ... Read more

Tracy Jane Tutt added a new photo.

Tracy Jane Tutt posted a new journal entry, "Radioactive".

Kodi is now radioactive after receiving the I-131 mibg infusion. The radiation safety officer was pleased with the procedure.  The radiation dose is calculated by ... Read more

Tracy Jane Tutt added a new photo.

Tracy Jane Tutt posted a new journal entry, "Checking in".

Today has been a very long day! We packed up this morning to leave home for the week... trying to decide what items were truly necessary, and what we could get by ... Read more

Crystal Omar signed Kodi's Guestbook.

I am so sad to hear the news of your sweet little Kodi being so sick.  My daughter Maya is on the soccer team with Kodi, and had told me a little bit about your sweet ... Read more

Tracy Jane Tutt posted a new journal entry, "Port placement surgery".

Kodi is now in recovery following her port placement surgery this morning. The procedure went well, although she woke up with some expected soreness. She was given some ... Read more

Richard and Linda Muir signed Kodi's Guestbook.

We will again be remembering you with prayer regularly.   Good luck as you have the tests, and we pray for the best result as you are having the treatments for the cancer. Read more

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