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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

Happy Birthday!

Another year older, another year wiser.  Today Justin, Annie and Carter turn 16 which sounds much older than 15, doesn’t it? As always the day somewhat snuck up on us (okay, on me) with all the flurry of activity around Thanksgiving and prepping for Christmas.  We are going to The Melting Pot in Red Bank for dinner tonight and will hopefully throw a big party in January once everyone’s schedules settle down.

Thanksgiving in Virginia was wonderful and Justin was an amazing sous chef to my sister Ally putting together a delicious meal.  Unfortunately his headaches continued to worsen each day so upon returning home I reached out to his doctor and took him in for his spinal tap yesterday instead of waiting until Friday.  They did another opening pressure, which remained high, took off extra fluid and injected his chemo.  We are hopeful that this will be Justin’s last and final intrathecal chemo before receiving his T-cell infusion (ala CART-19) in January!   Since the opening pressure remains high we are going to double up on his dose of diomox (which is the diuretic for his spinal fluid) hopefully, that combined with removing some extra fluid will give him relief from the headaches.

There’s been some mixed news floating around that Justin is cancer-free right now (he’s not) or that CART is a cure – it’s not.  The cancer cells in Justin’s eyes were eradicated thanks to the radiation.  We had originally been told that but then they thought the cancer had returned to his eyes so when we found that not to be the case we were incredibly relieved and happy.  There are still traces of leukemia in Justin’s spinal fluid and marrow (minuscule amounts) that they’ve been keeping in check with chemo.  The goal of the CART procedure is to infuse Justin’s own modified t-cells back into his body, let those t-cells destroy all the B-cells that carry the CD-19 marker (cancer cells and unfortunately some healthy cells) and eventually those t-cells need to replicate themselves in his body and keep up their search and destroy mission.  This will lead to remission.  Once Justin has been in remission for 5 years, then, hopefully, doctors will call him cured.

Don’t forget January 3 will be a night to remember!  Get your tickets at www.songsforjustin.com

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Comments

12 Comments

Pete Petosa
By Pete Petosa
Happy Birthday guys!
Lisa Ciccarelli
By Lisa Ciccarelli
Happy Birthday Justin!!!
Cindy Tufts
By Cindy Tufts
Happy Birthday Justin, Annie, and Carter! I hope you had a great time at the Melting Pot. A group of us will be there on January 3rd!
Sandy Daron
By Sandy Daron
Justin, Annie and Carter,

HAPPY, HAPPY 16 BIRTHDAY!! WHAT a GREAT day!!! It is TIME for your to get your drivers license.

I hope you have a GREAT time at the Melting Pot. I have always wanted to go there.

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
jeanne davidson
By Jeanne Davidson
Happy Birthday Justin, Amy and Carter! I didn't know it was your birthday, when I saw you today. Hope you all had a nice dinner and a fun time.
Alison Silver
By Alison and Tilly — last edited
Hey Guys I continued to hold you all tightly in my heart and thoughts! Happy Happy Birthday to thhe triplets!!! Wishing everyone a wonderful holiday season!

Amy—could you email me at your convenience I lost your email and wanted to touch base with you.

xoxoxoxo
chris raike
By
Happy Birthday Justin! Few people can say they earned their bday but you can! Keep uo the fight and perserverence & look for God in it all. Glad to hear you got baptized! What a statement of faith by a young man. Congrats on the braces! Next thing you know youll be driving- wait your16- go get your permit.

Wish you a merry Christmas!

Praying for you and the family.

Bible Verse Ephesians 6:13 () 13 Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand firm.
Randy Smith
By
Happy birthday, Justin! Always thinking about you and praying for you!
Sheri Rosenberg
By Sheri Rosenberg
Happy Birthday to the Trips!!! Where did the time go?? How can you POSSIBLY be 16 already?? Miss you guys!!
Patricia Rothman
By Patricia Rothman
Happy Birthday. Merry Christmas, and I pray for a HEALTHY NEW YEAR for ALL!!