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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

God is Good

Hello family, friends and followers…  I guess you can say we’ve been adjusting to the “new normal” around here.  So many people have texted, stopped by or given hugs of congratulations over Justin’s amazing news that CART-19 worked and he is cancer free!  We are blessed by everyone’s happiness and encouragement.  I know you are probably thinking we’ve been waking up with rainbows halos atop our heads and popping champagne corks every evening  - not so much.  Justin has been feeling anything but “fine” this past month.  Now I want to blame some of it (all of it) on PTSD.  No, he didn’t go to Iraq, but Justin did serve 4 tours on the cancer battlefield and the physical and emotional wounds are quite evident.  He is seeing a therapist and spends time reading his Bible.  While he is happy that CART worked he knows the t-cells could disappear at any time and that makes him, indeed all of us, a bit gun shy. We are hopeful, but in a very guarded way.

Additionally Justin was having issues with irritation at his GI tube site which required a trip to CHOP to have it swapped out for a smaller one ( I was hoping he’d gained weight and need a bigger one).  His platelets remain scary low too, which is why he resembles one giant bruise. Lastly he has a cold, or it could be allergies that he acquired from Annie during the transplant.  Justin has never suffered with seasonally allergies before, but Annie does.  It’s entirely possible she gave them to him via transplant some 18 months ago.  He goes to school sporadically.  Some mornings he’s just too tired and on days he does attend he comes home and immediately crashes on the couch for a long nap.

So, what’s next? Tomorrow Justin will have the 3 month bone marrow aspiration and spinal tap that is part of the CART protocol.  We will get initial results within a few hours but the important MRD number comes from a lab in Seattle so we will have to wait for those results until after the weekend.  He needs to eat more and start gaining weight.  I am ordering more formula today to put through his GI tube nightly, even though it often makes him feel yucky.

I leave you with this. Many people responded to our good news a month ago with “God is good”.  Believe me, I know!  I feel the same way too – overwhelming gratitude and praise.  In my quiet time before the Lord He made sure to remind me, however, that even had the news been bad (cancer still evident) He was STILL good .  We are quick to praise Him when we get the results to prayer for which we’ve been asking. Our faith is challenged, and if we let it even grown, when we get bad news and we can still say “God is good”. His love is constant.  He doesn’t dole it out according to whether or not we are “good” enough or have prayed hard enough.  God is good, all the time, regardless of what is happening around us. The miracle of faith is resting in that goodness, trusting in His everlasting knowledge, and not thinking we have to gain His favor.  Only He can see the future and while it is totally okay and expected to pray for healing, only He will know what form that healing will take. There is such peace in that thought when you fully embrace it.

 “The Lord will fight for you, you need only be still.”  Exodus 14:14

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Comments

12 Comments

Rick Bloom
By Rick Bloom
Wise words, Amy. Thank you :)
Amy Byrket
By Amy Byrket
Great message for us all. God is good all the time.. In the light and in the dark.
Sandy Daron
By Sandy
You are RIGHT!! God is GOOD ALL THE TIME!! I pray Justin will continue to be NED...now and 4 EVER!!

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
Jack McDonald
By Pastor Jack McDonald
Incredible testimony to the faithfulness and worth of Christ... Praising him with you for His goodness. Thank you for your example of trust and faith.
Nicole Marsango
By Nicole Marsango (from Grace)
Thank you for those inspired words, Amy. Prayers continue...
Lisa Ciccarelli
By Lisa Ciccarelli
Justin is in my prayers for continued heath. I love what you said about having faith in God. I believe the same thing. God is constant love and God is good. Faith is believing what you cannot see.
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Doris Pearson
By Doris & Bill Pearson
Thank you Amy for this update Please know our love and prayers continue .And yes, we praise Him when we feel our prayers are answered and we praise Him in the storm! Safe travels tomorrow xo
chris raike
By Chris raike
Amen sister! Preach it from first hand experience!
Youve been very encouraging.....
Will still be praying for those tests and healing

John 11:25New King James Version (NKJV)

25 Jesus said to her, “I am the resurrection and the life. He who believes in Me, though he may die, he shall live.
Janet Moley
By Janet Moley
I can't imagine how Justin is feeling. He has been through so much. I believe that it will take a very long time for him (and all of you ) to let his guard down and accept this new normal. But it will happen and with each passing year, it will get easier. I pray for him. All of you are never far from my mind. Thanks for the updates!
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Serg & Tammy Fossa
By Serg and Tammy
Oh, Amy, what a wonderfully true and encouraging post - God IS good, ALL the time...because He IS, not because of what He DOES....and praise the Lord for your wonderful testimony to that! It was with tears in my eyes that I read the last paragraph of this post...so true, and so gut-wrenchingly convicting to read that from a family that's done so many "tours" on the battlefield. We have been praying daily (aside from thanking the Lord for the wonderful news!) for Justin to be encouraged and peaceful, full of the comfort that only the LORD can give, and free from anxiety of any future events. May the Lord in His infinite grace continually pour our His peace and comfort on Justin and on you all! We love you!
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