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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

Another round of chemo and xray results

Kodi and I traveled to Fort Worth Tuesday for her monthly Zometa chemo infusion.  She is still also taking the low-dose Cytoxan pill everyday.  It was a pretty smooth visit, although Kodi appeared very flushed and pink after the infusion was complete.  She said she felt fine and didn't seem to have any reaction, so we did not have to stay.  

She got the x-rays of her lower legs, and they called us with results yesterday.  The ortho oncologist says that the x-rays look okay for Kodi to play soccer again.  (There was some concern about increased risk of fracture where she relapsed in the right leg.)  Kodi was very excited to hear this news.  We are hoping that she will be able to join her team for practices, even though she is not yet ready for games.  She has a long way to go in building up her muscles and stamina.  Of course, she still has the port in her left chest, so that is a concern, as well. Overall, though, this was very uplifting news, and I know Kodi wants to be able to play soccer again.

After clinic and x-rays, we stopped by Ronald McDonald House to say hello and drop off a large donation of coloring books.  Everyone was so sweet, and they are always happy to visit with Kodi.  Yes..we got to see Mac, too!  (Picture of Kodi and Mac laid out in the atrium floor.)  

We should have our team online now for THE BLAST (Neuroblastoma 5K Walk/Run) on April 4th at the Acme Brick Yard in Fort Worth.  This event directly benefits the Neuroblastoma program at Cook Children's, and it is fantastic!  Our family will be there, and we would love to have friends join us.  You can find more info at:
http://www,nbwalk.org  You can register and select "Join a Team" and find "Kick It Kodi" in the drop down list.  They also have options to become a fundraiser if you would like to get donations from others who are not able to participate.  It should be a great way to share the information across social media.

Please continue to keep Kodi and our family in your thoughts and prayers.  She is one tough cookie!




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Comments

4 Comments

Brenda Boyd
By Brenda Boyd
Awesome news!! Way to go Kodi!!❤️ God is Good!!
Sara Brown
By Sara Brown
Yay, what good news! We're praying for you in Houston, Kodi!
Michael Markezinis
By Mr. Markezinis
That's amazing news! Kodi is definitely one tough cookie.
Becky Pulley
By Becky Pulley
so glad to hear that Kodi is doing well and will be practicing with the soccer team