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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

Preliminary Scan Results

Well, another round of chemo/scans is past.  

Chemo on Monday was fine...a little slow, and of course dealing with construction traffic, but no health issues.

Tuesday, they had a hard time getting an IV started for the CT scan.  We tried two places, took a break to drink the contrast juice for a few hours, and then tried two more.  Kodi came home covered in band-aids, but she was a trooper.  There were a few tears, but she handles "pokes" SO much better than she used to.  It is amazing to see her maturity level increase as she is learning to adjust to on-going treatment.

Wednesday's scan was fairly smooth.  No pokes and no issues.

I got the call late yesterday that everything generally looks good.  There is no new disease, and the areas that we have been watching in her spine and liver are stable.  We will continue with the maintenance chemo pill that she takes every day and the once-a-month IV chemo at Cook Children's and scan again in 3 months.

Dr. Granger is going to consult with an orthopedic oncologist about Kodi's ability to play soccer.  Because of the location of the relapse in her knee and shin, Kodi will be at an increased risk for fracture.  It may be a "take it easy for 6 more months"...or she may have to completely give it up.  Unfortunately, we are leaning toward not playing.  Kodi is still regaining muscle and building her stamina, so she cannot physically keep up with the team at this point.  She also still has the port under the skin below her left collar bone, and I worry about her taking a hit there.  I am so grateful to her coaches and teammates who let her participate last season.  At least she got a chance to "try" playing one more time.

Kodi seems to be taking it all in stride, and I am glad.  In the big picture, she is holding her ground against a truly vicious disease, and we will deal with small disappointments and set-backs as they come.  As much as she loves soccer, we have to weigh the risks and make the best long-term decision for her health and safety.

Thank you all for your comments, texts, calls, and cards over the past few weeks.  I am so grateful for the prayers and encouraging words.

Tracy J Tutt (mom)


 






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Comments

4 Comments

KK Brown
By KK Brown
Still think of you all and pray for you often. Hang in there Kodi! Glad to hear scans look stable. Maybe Kodi can still be involved with her team in some other way, if that isn't too heartbreaking for her if it ends up that she can't play soccer.

Hugs and Prayers,
The Fort Worth Browns
Kate Schwartz
By Kate Schwartz — last edited
So glad things are stable! Sorry for the disappointment of soccer being off the table for now. Thinking og Kodi and praying often for her!
fern mitchell
By
More important to kick that pesky health situation than the soccer ball. She's a great TEAM member for that purpose .
Stacey Martin
By Nurse Ms Stacey
Still thinking about you and praying for you often!