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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.  Sadly, on June 26 2014, exactly 9 months post-transplant a spinal tap was performed and we learned Justin has relapsed again.  He qualified for an experimental protocol called CART-19 at CHOP.  It involves extracting your own white cells, genetically modifying them and then re-infusing them back into the body.  It is currently undergoing FDA approval.  On February 17 & 18, 2015 Justin was the 44th patient in the Phase 1 trial to receive his modified t-cells.  It worked and he is currently in remission.   "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

Happy Birthday!

Guess who’s turning 17 tomorrow?  If you said Annie or Carter you’re right!  Of course, so is the middle triplet Justin!  All three kids are very excited.  Annie and Carter go for their driver’s license on December 23, and Justin takes his road test later in January.  Three more drivers in the house…God help us all!

On November 19 Justin had his 9-month post-CART bone marrow biopsy and spinal tap.  His headaches have been increasing and his platelets have stubbornly refused to increase so we were quite nervous about the results. The opening pressure of his spinal fluid was frighteningly high – as in overflowing the gauge.  That explains the headaches.  Thankfully that was the only problem – no b cells detected and no cancer cells detected in either his bone marrow or his spinal fluid!  Remission continues!  Each day is another day living cancer-free and we are so grateful.

Shortly I will be picking up Justin up at school and heading up to Manhattan College in the Bronx. They are hosting a St. Baldrick’s event and Justin was asked to speak.  We are so grateful to the charities that have funded the CART grant. It is giving Justin, and many kids just like him, true hope for a cure.

We are also grateful for the Emmanuel Cancer Foundation who is once again fulfilling the kid’s wish lists this Christmas.  They continue to be such a blessing and without their help the “gift giving” portion of our holiday would be mighty lean.  The Mya Lin Terry Foundation (so near and dear to our hearts) also gave us a generous gift card to Carrabba’s so we can treat the kids to a special birthday dinner.  So very much to be grateful for…

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Comments

17 Comments

Serg & Tammy Fossa
By The Fossas
Oh, Praise the LORD and a very Happy Birthday to Annie, Carter, and Justin!!! Rejoicing with you all!! :)
kathy konrad
By kathy konrad — last edited
A truly Happy Birthday for all three! So glad to hear Justin is doing well. Wishes for a beautiful holiday for you all!
JoAnn McWilliams
By
Terrific! Happy Birthday! It was so great to see you! And I love that we are all getting the chance to hear that deep voice of yours JJ. Have a wonderful year. You are so deserving of it!
Sandy Daron
By Sandy
PTL!! What AWEsome news!!!

I pray Justin's headaches improve.

HAPPY BIRTHDAY X 3. Have an AWEsome one!!


Love ya,
C.O.L.E.s Foundation (Caring Openly, Loving Eternally)
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Email: sandy@colesfoundation.com
Carrie Fitchett
By Carrie
Tears of joy!
joe paduano
By Joe
Great news! So happy for everyone. Stay strong. Happy Birthday and Happy Holidays!
Cindy Tufts
By Cindy Tufts
Happy Birthday, Justin! Have a wonderful day with Anne and Carter!
Janet Moley
By Janet Moley
Happiest of birthdays to Justin, Annie and Carter! 17! What a blessing! I hope they have a blast! Hugs all around!
carol wasserman
By Carol Wasserman — last edited
How is that even possible? 17???? So happy to hear of Justin progress. You guys are never far from my heart, thoughts and prayers. Please wish all three a very happy birthday from all of us in the old neighborhood!
Reen Garrity
By
Many big wishes for a Happy Triplet Birthday! Good luck on the driving tests. Continued prayers and Good Energy to the family!