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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

50 miles...and 2.5 HOURS later, we are home!

Can I just express how much I dislike construction traffic...let's be real...I hate it!

I was second-guessing staying at Ronald McDonald House until our trip home today.  There is no way I can have any kind of productivity sitting in the car half the (work) day.

Okay, on to the Kodi part...

Kodi started external beam radiation on her right leg yesterday at Texas Oncology in Klabzuba Tower (Harris Methodist Hospital).  She is doing well, and so far she has had minimal side effects.  She did want to sleep in this morning, but she did not have the extreme fatigue she has experienced in the past.  The technicians and staff at Texas Oncology are fantastic.  Many remembered her from May 2011 when we were last there.  Kodi started a bit of a prank war with one of the guys, and you can see the wheels turning as she is trying to come up with something good to trick Michael on Monday.

We stayed at Ronald McDonald House for one night, and we will be returning next week.  Kodi made a new friend at RMH that we hope to see again next week, and she was a charming little diva for the sorority girls who were serving dinner Thursday night.  Of course, no visit to RMH would be complete without seeing her favorite furry friend, Mac, the labra-doodle who stays at RMH.  

We are home for the weekend...enjoying Maegan's soccer games and finalizing brackets and schedules for the Childhood Cancer Shootout soccer tournament in Denton next weekend.  There are still loose ends to tie up, but I can see it coming together quickly.  Please pray for the health and safety of the participants and decent weather!
















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Comments

2 Comments

Holly Nartz
By The Nartz Family
My daughter played in the soccer tournament this weekend and we wanted you to know that Kodi is an inspiration! My daughter loved meeting her and learning about her story, it really touched her. What a brave and beautiful young lady! God bless her and you and your family. You all have been added to our prayers.
Stacey Martin
By Nurse Ms Stacey
Thinking and praying for you sweet girl! I can't wait to hear more about this prank war :)
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