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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

Plinko

This is another one of those posts that I’ve stared a thousand times in my head…  I meant to post earlier last week and share what an awesome time we had last weekend up in the Finger Lakes region of New York visiting my niece Lizzy at Hobart William Smith College.  The weather was spectacular; the fall foliage and the lake so pretty;  the apple cider & donuts perfect; and yes, we conquered the corn maze and were crowned Farmers of the Year!  Many happy memories were made and at one point I laughed so hard I may have wet my pants – suffice it to say we believe all the radiation he’s received may have given Justin some super Spidey powers when it comes to navigating corn mazes! 

Too bad the good times couldn’t last. Justin returned to CHOP on Friday for scheduled intrathecal chemo and a quick follow-up with the ophthalmologist to ensure the radiation did the job and eradicated the cells swimming around in his eyes.  Unfortunately, and much to our utter shock, the cells have returned to his eyes.  This means that Justin remains in CNS3 status. Previously, as recently as 1 week ago, this would have excluded him from participating in CART-19, the last option he has left for a cure.  Thankfully, the doctors at CHOP have decided to open a separate cohort of CART-19 for children in this predicament.   Quick explanation here:  Justin has leukemia, which is a cancer of the blood.  Four years ago, with his first relapse and each subsequent relapse the leukemia crossed the blood/brain barrier and appeared in his spinal fluid or central nervous system (CNS).  Doctors have 3 levels for classifying disease in the CNS.  CNS1=no disease; CNS2=1-5 white blood cells per 1ml; CNS3= 5 or more white blood cells per 1ml, or cancer blasts and/or involvement someplace else (like the eyes, or lumpy disease in the brain, or lesions on the skin – still all considered leukemia).  All of these CNS3 situations are very rare, and none of them carry a good prognosis.  In fact, no child has survived when the leukemia has returned to the eye post-radiation.  The goal of the doctors at CHOP is to throw these kids a life line and they will enroll six children with CNS3 involvement. Justin will be patient number one.  To say Justin is a trail-blazer is the understatement of the century. 

This one has hit us hard.  I’m usually prepared for the bad news.  I sense it’s coming so I’m not caught off guard.  The bad news on Friday was followed by a whirlwind weekend of an already planned family visit and the always amazing Frances Foundation Gala on Saturday night.  Justin wasn’t able to attend the gala last year as he was still in the hospital recovering from the transplant.  We’d have hoped that this year we’d all be together truly celebrating but unfortunately our dancing was tempered and our smiles a bit forced.

I had a vision Friday night of a sort of Plinko like funnel  game. Seven years ago, Justin started at the top – big wide funnel, standard-risk acute lymphoblastic leukemia, 85% cure rate, no big deal.  We dropped our chip and stood a pretty good chance of walking away winners.    With each relapse Justin has challenged the odds and his diagnosis has gotten rarer and harder to cure.  The number of winning slots left at the bottom of the board for the chip to fall into has become fewer and fewer.   Each year the funnel, the chance at remission, the possibility of a cure, has narrowed, and narrowed until this moment.  There is no data to rely on.  Will it work?  We don’t know.  Will the modified killer T-cells go after the cancer in his eyes and cause blindness? We don’t know.  Since the cancer has already proven so aggressive will it change its morphology on a dime, as some other patient’s cancers have done and outsmart the T-cells?  We don’t know.  One chip left.  One slot left.  Jackpot or game over.  We don’t know.

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Comments

30 Comments

Christine Walsh
By Christine Walsh
Lord, we need the Jackpot!!
jeanne davidson
By Jeanne Davidson
You are all in our thoughts and prayers...keep strong and keep fighting!!
Gayl Elam
By Gayl Elam
Praying for that jackpot for Justin.
Sending Hugs from Indiana
Gayl
C.O.L.E Prayer Team
www.colesfoundation.org
Patty Nolan
By
Dear Justin & Family,
You are in my thoughts and prayers! Stay strong! Glad to hear you all got away for a fun adventure up at the Finger Lakes. Thinking of you all.
Love, Patty Nolan XOXOXO
Tiffinee Swanson
By Tiffinee Swanson
Wow, I write this with a heavy heart hearing the news. Praying that this last chip is the ultimate jackpot. God can do miracles, and I pray Justin is just another one of those miraculous stories of fighting bravely and beating all the odds. Lots of supporting hugs being sent your way, may you find comfort in His arms.
Tiffinee Swanson
C.O.L.E.’s Prayer Team
www.colesfoundation.org
Joseph LoBello
By Joseph LoBello
So hard to hear and read, but Justin you are an inspiration..............Keep Fighting !!!!
MJ Chalakani
By MJ Chalakani — last edited
As always, thinking and praying for your family. You are all amazing and strong and loving and an example for the rest of us.

With love,
MJ
christine kress
By
My heart brakes for you but BELIEVE every hour and every day! Hug, hold and love him! Go t-cells!
chris raike
By
Keep praying and we will too......He is listening. Praying for God's grace to sustain you.

Bible Verse Psalm 55:17 () 17 Evening and morning and at noon I utter my complaint and moan,and he hears my voice.