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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 is well...

Happy Fall!  I’m not sure how happy we are about it as we will miss the awesome summer and amazing weather we had here on the Jersey Shore. Justin, Annie and Carter started junior year at Manasquan High School, together.  Justin has made it a full day every day since school started with the exception of 2 days this week spent at CHOP.  On Tuesday he had his last IVIG treatment through his port.  He will transition to having it done subcutaneously at home ever other week – step in the right direction.  On Wednesday he had his port surgically removed – BIG step in the right direction.

It has been 7 months since getting his T-cell infusion and we are thrilled to report that Justin’s blood work still shows him CD-19 negative, meaning the killer t-cells are still destroying all the b cells that are CD-19, including the cancerous cells. There is still some anxiety, believe me, but with each passing month the fear seems to lessen a bit.  The longest Justin has maintained remission is 9 months (post bone marrow transplant) which in this case will bring us to November 17. I feel like getting past that date will be a huge emotional victory for all of us.

On the endocrine side, the insurance company finally saw the light and has authorized Justin’s replacement therapy.  This will involve painful inter-muscular injections every 2 weeks, but Justin’s ready to pay the price if it means catching up to his siblings.  I’ve had many of you ask me in person how Justin is since my CaringBridge posts have been drying up.  Some people have incorrectly, but understandably, assumed all was good, it’s all over, he’s done with treatment.  Yes, life is good but the treatment for the side-effects that the cancer treatments caused will sadly last a lifetime.  I pray for a day where pediatric cancer treatments are effective without harsh side-effects and consequences.  Better yet, I pray for a day that no parent EVER has to hear the words “your child has cancer.”

While waiting (and waiting, and then waiting some more) for Justin’s surgery to begin on Wednesday I was reading a novel that takes place in France during World War II.  The book included a quote by Winston Churchill.  “When you’re going through hell, keep going.” My heart skipped a beat as the power of that quote resonated through my mind, my soul.  Justin has been through hell for the past eight years, but he kept going.  He did everything the doctors asked of him, and when that failed he calmly asked “what else you got?”  I don’t know why God has chosen to spare Justin while so many of our amazing fellow warriors have died.  I DO know that God’s gift of life will not be wasted by Justin as he lives every day with a twinkle in his eye and a calmness that comes from knowing, no matter what, it is well with my soul.

22 people hearted this



Craig Baxter
By Pastor Craig
Thanks for the update Amy. I am so encouraged by your upward focus and thanksgiving. As always, be assured of our prayers.
Sandy Daron
By Sandy
PTL for the great news!! I pray Justin's shatters his 9 mo. record.

Love ya,
C.O.L.E.s Foundation (Caring Openly, Loving Eternally)
Say A Prayer, Send A Smile, Make A Difference
Beverley Gombos
Always thinking of Justin, and all of you. Very well written Amy and always an interesting perspective. Such a fitting quote. Justin is a true fighter and survivor. Love and prayers
kathy konrad
By kathy konrad
Prayers for Justin to continue to heal!
Rebecca and Oliver Gold
You have such a way with words, Amy. I hope you saved all your posts because surely you can turn it into a memoir of hope which will sell like crazy and help pay for all you and your family has been through!
Jodi Savare
By Jodi Savare
Such a beautiful post. Loved reading every word of it. God Bless you all. Continued good health and happiness.
- the Savares
1 person hearted this
gerri daneman
By Gerri Daneman
Go Justin Go!
With Love,
Gerri,Lilly and all the Daneman Family
1 person hearted this
Serg & Tammy Fossa
By Serg and Tammy Fossa
So glad to hear that things are going well. Praise the Lord for His continuous mercy and grace! Continuing to pray for Justin - for continued remission, lessening of side effects...and junior year 😉
1 person hearted this
Dawn Marsh
By Dawn Marsh
Your last line totally gave me chills!! I have been so blessed by your posts and have continued to pray for Justin and your family as you have been going through all of this! God is faithful and it is always incredible to know that He is there for us and He has so much more for Justin!
1 person hearted this
Bob Stephens
By Bob Stephens
I am reading this misty eyed, as I do all of your posts. What an amazing warrior Justin is. We will be walking tomorrow at the Parkway Run and will be thinking of Justin and your family. I too pray for a day when no parent has to hear those words. Stay strong. Think of you always. xoSuz
1 person hearted this