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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

It's Not Over 'til It's Over

Long time, no update. Sorry.  For the most part things are getting better.  I’ve been  criticized, by some, for not being happier about Justin’s remission.  We are happy and relieved but it is tempered by the fact that Justin has been in remission before and the way he got here this time is very experimental.  On February 17 when he got his infusion of modified t-cells our cancer journey took a hard left turn and I’m pretty sure I saw a sign that said “Welcome to We-Have-No-Idea-Ville”.  This investigational land is not known for giving anyone the warm fuzzies.  We can look at the percentages of those who’ve gone before, but sadly we don’t have to look further than our own backyard to see some kids for whom the CART trial failed. Ben and Darren, who’ve both earned their angel wings this month; and sweet Valeria who’s swinging for the fences down at the National Institutes of Health in Bethesda as patient #6 in a CD-22 trial, after CD-19 proved to not be the golden ticket to remission that everyone had hoped for her.

In addition, Justin is dealing with a host of side-effects brought on by all the years of chemo and radiation.  The avascular necrosis (essentially bones that resemble swiss cheese) has been causing moderate pain in both knees, ankles and just recently in his hips. Two MRIs are scheduled for August to see the progression and then we’ll consult orthopedics again to see what can be done.  On the endocrinology front, Justin’s hormones are lacking and confused.  Sadly our insurance company doesn’t see why this is a big deal and a huge health risk moving forward and they have declined to pay for the necessary replacements.  Thankfully Justin’s endocrinologist is a 4’11’ pit bull in a dress who is advocating aggressively on Justin’s behalf.

Then there is the clinical depression which doesn’t just magically disappear upon hearing those thrilling words “you’re cancer free!”  Justin is doing the best he can.  His appetite is slowly increasing.  He appears to be gaining weight as quickly as I’ve managed to lose it, which is to say at a snail’s pace.  His g-tube is still in place and will remain there, along with nightly feeds, until he can manage to at least get back on the growth scale.  He has a chorus part in the Spring Lake Theater production of How to Succeed in Business Without Really Trying.  It is a physical challenge keeping up with some of the dancing and an emotional challenge meeting new people that don’t believe him when he tells them he’s 16.  But he loves the theater and is happy to be on the stage!

August 13 Justin will have his six month post CART bone marrow aspiration and spinal tap.  We are hoping to see lots of t-cells and no b-cells. Pray, pray, pray.

As much as I’d planned to take the summer off from working, long days reading on the beach and swimming in the ocean, surprisingly, does not help pay the bills!  I managed to secure a part-time job as a banquet server and start training tonight.  Annie is in the midst of her National Honor Society project selling lemonade for Alex’s Lemonade Stand at Barlow’s in Sea Girt.  Please stop by this Saturday or Sunday between 10am-3pm!  If you’re not local and want to support pediatric cancer research here’s the link to Annie’s fundraising page:  http://www.alexslemonade.org/mypage/1156034  Carter is off at Sea Cadet Boot Camp in Cape May for nine days.  Please pray for him!  Lydia continues her internship in the Boston area and will be home in mid-August for all of two days before returning toMuhlenberg for her senior year.  So our relaxing summer has turned somewhat busy but we are still remembering to squeeze out some fun too!

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Comments

13 Comments

Curt Schilling
By Curt Schilling
Been awhile! I pray this finds you getting at least a decent nights rest. Please make sure Justin knows I said hello and I think about him often, because I do. Just remember "You never know how strong you can be until being strong is the only choice you have". If there's anything I can do please let me know! God Bless!!! ('04 NO ONE had ever come back down 3-0. How about those "odds'? It can be done.)
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JoAnn McWilliams
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Justin, Glad to hear you are on the stage once again. I know how much you love it. Best of luck on the 13th . I think and pray for you often.
Sandy Daron
By Sandy
Hi Amy,

I am happy to read an update on Justin. I am sorry he has so many side effects. He has been fighting a long time. I pray the MRI...WILL be NED.

{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}

Psa. 27:14 Wait for the Lord; Be strong, and let your heart take courage; Yes, wait for the Lord.

Love ya,
C.O.L.E.s Foundation (Caring Openly, Loving Eternally)
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kathy konrad
By kathy konrad
Continuing prayers for Justin, yourself, and family! Praying that Justin stays in remission and that something can be done to help with the residual side effects. He is a very handsome young man!
Christine Mcarthur
By Christine McArthur
Continued prayers !
Lisa Ciccarelli
By Lisa Ciccarelli
Day by day. That's all you can do. Justin hang in there you are headed in the right direction! Blessings to you all!
Hayley Thompson
By Hayley Galatan Thompson
Amy glad to hear that Justin is such a fighter! I think of you and your family often. Unfortunately I'm joining you in the Caring Bridge Community - diagnosed in May with Stage 3 breast cancer. About to start 4 months of chemo myself. Sucky. Send your email in a Facebook messenger and I'll send you an invite
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Reen Garrity
By Reen
...some of the bravest people I know :) Continued prayers and Good Energy to you all!
Jodi Savare
By Jodi Savare
We think of your family often and hope for good things for you. Keep moving forward and we hope and pray that moves you further from cancer and all the awful things it brought into your lives.
randy weiss
By randy weiss
Criticized - really - anyone want to walk in your shoes or Justin's??? Wish your "backyard" had a better view - but glad to hear that Justin is doing the best he can, pushing forward with all that is needed and that he is actually enjoying some age appropriate fun - on stage no less!!! Fingers crossed for hitting out of the fence and then some with Tcells!!!
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