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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

Good News, Bad News

First the good news – Justin was discharged from the hospital yesterday!  We made it home around 6:30 after first stopping at the pharmacy to pick up important meds and a quick cameo appearance at the blood drive given in his honor.  Ninety-eight people turned out in the snow to donate blood!  Thank you so much – awesome!

So Justin was discharged only after some promises were made, and I signed for them with my own blood! First, we need to monitor his blood pressure at home.  Easy enough thanks to Mr. EMT, Ralph.  His BP was ever so slowly improving in the hospital (up to 80s/50s) and I successfully made the case that getting out of bed and actually moving around could only help. Secondly, Justin needs to eat – a lot! His weight has dropped significantly. He’s currently only 74 pounds. Medical marijuana is helping boost his appetite (pill form people) and the extended release morphine is keeping his stomach pain managed.  Still no answer on what was causing the pain, however.

Now the bad news – the results from the bone marrow biopsy came back and much to our surprise Justin is not in remission.  He has active disease in his marrow now.  When he relapsed back in June, all the cancer blasts were in his spinal fluid alone – an isolated CNS relapse.  The cancer spread to the fluid around Justin’s eyes but the radiation (and prayer) took care of that.  All the chemo he’s received since June was administered directly into his spinal fluid, until this month when he underwent the 4 days of high dose induction chemo to prepare his blood for the T-cell CART infusion by killing off most of his existing T-cells.  The bone marrow biopsy and spinal tap are performed on all the kids before their T-cell infusion to get a baseline of how much disease remains.  Even with the intense 4 days of chemo, Justin’s minimal residual disease was 2%.  The previous 2 times we’ve checked since June it was less than .01%.  This doesn’t really change anything but does make the necessity of CART more urgent.  The doctors will not infuse the t-cells with his blood pressure so low, but waiting gives the leukemia time to grow in his marrow and they are very hesitant to administer any more chemo at this point as his body has seen so much and it’s toxic side-effects have already almost killed him, more than once.

We are sitting tight at home.  Indulging Justin’s every culinary desire and monitoring his blood pressure.  Tuesday we will head back to CHOP for a clinic appointment with Dr. Grupp – Mr. CART-19 himself (or the Wizard of Oz, if you prefer). Please pray that Justin’s blood pressure increases and stabilizes by then so CART can be scheduled for the first week in February.

A poem, a thought, a prayer... this has been my focus...

Be still my run away heart…
Be still my desire to fix things…
Be still my anxious thoughts…
Be still and know without a doubt, God is.
God is the answer....
God is the solution.
God is the desire met.
God is what I am looking for.
God is what I need.
God is God.
Be still and know.

heart
29 people hearted this

Comments

15 Comments

Lucy Heulitt
By Lucy Heulitt
Yes, God is the answer to everything! God Bless your family. We are keeping Justin and all your family in prayers.
Ava O'Shaughnessy
By kara o'shaughnessy
Praying for you all. Another wrinkle in the plan, and you've definitely been there before. I hope the weekend brings you lots of good food and elevated BP--oxox
Joan Brown
By Joan Brown
I can't say anything more than that poem/thought/prayer that you posted. But I hope that any prayers/energy I can lift towards treatment and cure will help. Sending love to all of you. And I'm so glad my husband and I were able to be at "Songs for Justin." The love swirling through that place was palpable.
Sandy Daron
By Sandy Daron
Oh gosh!! I am sorry about that news!! I pray Justin's BP will stabilize and he will be able to begin treatment SOON!!

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
Jodi Savare
By Jodi Savare
Sending prayers and willing to send food. Please know that we are thinking of you and sincerely hoping that your blood pressure improves so you can get your infusion. Good luck and God Bless.
jerry Joyce
By jerry joyce
Hi Justin, Keep reading your historical novels, try 'unbroken' it will make you eat a lot .
jerry Joyce
By jerry joyce
Hi Justin ,Keep reading your historical novels, try 'Unbroken'. It will make you want to eat a lot.
Carrie Fitchett
By Carrie
I have no proper words....but if you want any sort of food....or jokes....do call!!!!. God is faithful.
Beverley Gombos
By Gombos Gang.
Prayers and more prayers are coming your way. We know Justin needs them, and pretty sure you all do. Love and hugs.
MJ Chalakani
By mj chalakani
Thinking of you, Justin, and your family.
Lots of love,