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Justin’s Story

Justin is the middle triplet in a traveling circus family known as the Flying Condolucis!  Seriously, Justin is the greatest kid you could ever meet who just happens to have had cancer, four times, and has every intention of being cancer-free and becoming a pediatric oncologist when he grows up.  He is also a devoted Boston Red Sox fan, theatre geek and dog lover.  This is his journey, thanks for following along...On April 11, 2007 Justin was diagnosed with Acute Lymphoblastic Leukemia (ALL) and fell into the standard risk, pre-b category.  He spent the next 3.2 years in treatment at the Valerie Center at Monmouth Medical Center.On a routine check-up on December 13, 2010, six months off-treatment, it was discovered that had relapsed.  His treatment was moved to Children's Hospital of Philadelphia.  He underwent 1 year of intense chemo, 22 rounds of radiation and 1 year of maintenance chemo.  He completed treatment on March 1, 2013. On June 4, 2013 we got the horrible news once again, Justin had relapsed.  He underwent intensive chemo again which lead to some serious complications but got him to the point where he could receive a bone marrow transplant.  On September 26, 2013 Justin's sister Annie underwent the painful process of retrieving stem cells from her hip bone and later that day that precious gift of live-saving cells were infused into Justin.  He remained in the hospital for 9 weeks and continues with follow-up clinic visit to CHOP.  Sadly, on June 26 2014, exactly 9 months post-transplant a spinal tap was performed and we learned Justin has relapsed again.  He will likely participate in an experimental protocol called CART-19 at CHOP..  "When you pass through the water, I will be with you; And through the rivers, they shall not overflow you.  When you walk through the fire, you shall not be burned, nor shall the flame scorch you." Isaiah 43:2

Latest Journal Update

Shake it Off

We’ve slowly been able to regain our footing after the horrible news on October 17 that the cancer cells have returned to Justin’s eyes.  Even the doctors were taken back, scratching their heads, pouring through the medical journals… Hell they even went all the way back to the rats.  They know that the cells got into the anterior part of the eye by diffusing out of the blood vessels located in the back of the eye.  The concern is if the genetically modified t-cells that they plan on infusing into Justin bloodstream to target and attack the cancer cells will also diffuse?  So far they’ve never seen it in a patient, nor in the lab rats that were initially part of the study.  So, what to do?  The consensus is the eyes need to be treated separately from the leukemia in the marrow and CNS.  But first we need a 100% accurate picture of what we are dealing with so yesterday Justin underwent a really long MRI on his eyes and brain looking for any other interlopers.  Thankfully, none were found!  Finally good news!

Next Friday, November 7 it’s back to ophthalmology for another look into Justin’s eyes and oncology for another spinal tap with chemo.  At that point, based upon the status of the cells in the eyes they will decide on a treatment plan for the eyes which may or may not include simple steroid drops to the eyes and/or chemo administered directly into the blood vessels of the eyes.  Then, and only then, can Justin proceed to CART.

In the meantime Justin has been going to school, making up tests, and enjoying time with family in Virginia over the weekend.  He looks great and besides some fatigue and the underlying constant headache he feels pretty good too.  It’s hard to believe all this is going on just below the surface.  Which is why each day, after placing it in God’s hands through prayer, we’ve chosen to Shake it Off!  Thinking about cancer all the time, 24/7, will drive you nuts.  The worry, the angst, the what-ifs…. Shake it off, shake it off!


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Comments

15 Comments

chris raike
By Chris raike
Praying for you all to be an inspiration to those around you. Praying for the new plan will work for cart-19 and as Anne Marie said, for your endurance to run the race strong as you go through your trials and tribulations. Proud to call you brother and sister in the Lord. Hope to see you at Trunk or Treat tomorrow!
May the Lord keep you strong and encourage you all!

Bible Verse 2 Corinthians 4:7-10 () 7 But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. 8 We are afflicted in every way, but not crushed; perplexed, but not driven to despair; 9 persecuted, but not forsaken; struck down, but not destroyed; 10 always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies.
Sandy Daron
By Sandy Daron
I am soo thankful the MRI did NOT show anything!! I pray for the BEST treatment!!!

Happy Halloween!

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.org
www.kidsunitetofight.com
www.colespages.org
Email: sandy@colesfoundation.com
Amanda Cokelet
By
God bless ur family and that amazingly strong young man!!!! Sending prayers your way
Pete Petosa
By
Best wishes! hang in there!

Pete Petosa
Carmelita Marrow
By
Great attitude Amy! We all must "shake it off" because none of us are promised tomorrow. Your entire family is an inspiration to us all!
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1 person hearted this
Rebecca and Oliver Gold
By Rebecca and Oliver Gold
Let Go and Let God. You got that right. Love your attitude, Amy. Keep shakin' :)
MJ Chalakani
By MJ Chalakani
😘😘😘
Jamey Hansen
By Jamey Hansen
You are all in my prayers and sending xxx ones to Justin. You can do this. Shake it off-shake it off and NEGU!!!!
Michele Lynch
By Michele Lynch
All of you are in my prayers and thoughts. Sending lots of love, positive karma and prayers. If there is anything I can help out with, don't hesitate at all. Thinking of you all.
Carrie Fitchett
By Carrie
I'd like to thank you for that song in my head.....I scretly like it. Shhhhhh. Praying for sanity! God is Big.