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

Not exactly what we'd hoped for

Yesterday we received the results from Justin’s day 28 bone marrow aspiration that he underwent last Thursday.  We were very hopeful that just like 90% of the other patients who’ve received this break-through immunotherapy, CART-19, Justin would be in remission. Unfortunately that is not the case. There is less cancer in his marrow than before he received his genetically engineered t-cells but some leukemia was still detectable.  They were able to see some t-cells in his blood, however,  which is good news.  Maybe they’re just lazy serial killers…  Maybe they get distracted easily and forgot what they’re supposed to be doing…

Because CART-19 is such a new, novel treatment we are left with more questions than answers at this point. We will meet with Justin’s oncology team in the coming weeks to decide our next move. 

Currently some of the options are:

 1.  Do nothing and perform another BMA in 30 days to see if body has achieved remission (supporting the lazy t-cell scenario).

2.   Get a booster dose of t-cells (if they have any of Justin’s cell still frozen in the lab; they should) and recheck his marrow in 30 days.  Call in the “reinforcements” scenario. This has been done with other patients with mixed results.

3.  Search for a non-related donor and attempt another bone marrow transplant.

4.  Try some recently FDA approved new chemos or enter a trial for some chemos trying to get approval.

Justin took the news in stride.  He is used to being the “special case” at CHOP.  He’s tired of it, really tired of it all, but he’s used to it.  He gave a wonderful speech at Squan-a-Thon on Friday night that brought his classmates to their feet.  He needs their support now more than ever.

This is not the news I was expecting to post.  All weekend I was so hopeful and optimistic.  I truly thought CART-19 was the answer for Justin.  Literally since his relapse last June everything has been hinging on CART. “We just need to get him to CART.” That was my mantra.  It was no small task either with the cancer primarily remaining in his central nervous system, and then hiding out in his eye fluid!  Pause for 16 rounds of radiation please.  Resume spinal chemo, get to CNS1 status.  Stop – Justin tests positive for the flu, then an abdominal infection leads to his blood pressure going on vacation down under. Start - do induction chemo again to prepare for t cell infusion then, FINALLY get t cells infused only to find out they did a half-assed job at killing the cancer! Today was the day I was finally going to start looking for a job.  Today was the day Justin was going to go back to school for the WHOLE day. Instead Justin is still in his pjs on the couch playing video games and I’m researching clinical trials on the internet.

I will keep everyone posted. Pray for guidance for us in the coming days and weeks as we continue to make major decisions based on very little information.

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Comments

30 Comments

marybeth walz
By marybeth walz
Prayers prayers and more prayers. Whatever you need, I'm here. God bless you all xoxo
Joann Roddy
By Joann Roddy
Praying for you all, Amy.
Jennifer Green
By Jennifer Green
Praying for guidance for all of you as you make the best decisions possible for Justin based on very little information.
Jennifer Green
C.o.l.e's prayer team
www.colesfoundation.org/
jeanne davidson
By Jeanne Davidson
Prayers for all of you as you continue this fight, making all the right decisions.
Christine Walsh
By Christine
Keep the faith Amy. You are so strong for them all and so is Justin. We'll continue with prayers and positive thoughts. Love to all. - xoxo
Pam Norman
By Pam Norman
praying for your whole family every day
Sue Miller
By
Praying -- and asking others to pray, too.

Miss Sue
Vera Mouser
By Vera Mouser
Praying that you get the guidance to make decisions. I am praying for Justin...what a great person.
Vera Mouser
C.O.L.E.’s Prayer Team
kathy konrad
By kathy konrad
Continuing prayers for Justin and family.
Kate Thompson
By Kate Thompson
Praying for you, Justin. I've been following your story for some years and I'm so impressed by what a fine young man you are. I very much hope you get some new good answers soon.

Love,
Kate in VA