Justin’s Story

Site created on March 23, 2012

In March of 6th grade, after a couple of months of feeling "out of it," losing weight, then fevers, I was diagnosed with acute lymphoblastic leukemia; Type B. Luckily, it didn't reach my lymph nodes or nervous system. And luckily, we live in a time when leukemia is often cured. Unfortunately, after 3.5 years of treatment, being in remission and "normal" for almost 1.5 years, the cancer relapsed. I went back into treatment, first with much more chemo, which was brutal, and then I got into a cutting edge "CART-T" clinical trial at CHOP (Children's Hospital of Philadelphia) which took my T-cells, genetically modified them, and put them back into my body to attack and kill all of my B-cells. Miraculously, only 10 days after getting these weaponized T-cells, I went back into remission and was lucky to have an amazing summer of 2017. At my 3-month check up at the end of the summer though, the new T-cells had left my body, and the doctors found indicators of what appeared to be the beginnings of the cancer returning. So after years of knocking the cancer out and hoping it wouldn't return, we went for the gusto and got a Stem-Cell (formerly known as bone marrow) Transplant in September 2017. Radiation, harsh chemo and a rough month followed- but since then it has been a steady improvement towards no cancer normalcy. We  remain positive and optimistic, and hope to return to Camp this summer and begin college in the Fall of 2018. With amazing support from friends, family, camp family, New Egypt teachers and neighbors- We keep our spirits high. This blog was created to enable everyone to read about and see how I'm doing, express their support, and be part of our community of "JUSTINSANITY!"

Newest Update

Journal entry by Andy Pritikin

Today, March 20, 2022, marks the 10-year anniversary of us sitting in a room at St. Peter's Hospital in New Brunswick with the head of oncology telling us about Justin's diagnosis and its implications. Feels a little like yesterday, in that those moments leave a mark, and we'll never be "over it" - since cancer is always lurking in the dark corner of our minds, if not our bodies.
That said, Justin is in "Survivorship" at CHOP- which is terrific for many reasons, one being that they organize a slew of his doctors (eyes, kidneys, etc.) to be at the hospital one day per year so as to make the check-up process as easy as possible for people like Justin.

Quick update for those who have only been following along on Caringbridge-
Justin is finishing his senior year at Villanova, in which he has maximized his time there, with recent highlights being his work with the big Special Olympics event, in which (like a camp director), he helped figured out how to create a virtual version in 2020, and then helped bring the event back to real life in 2021, while managing 1200 volunteers. Here's his closing remarks from the final night- after minimal sleep all week, not eating much that day, chugging two IPAs, and getting up on stage with no notes. He is finishing up with the VU basketball team, who plays today in the NCAA tournament vs. his cousin's school, OSU. The little TV footage we are allotted of seeing a Villanova men's basketball practice with Jay Wright makes me very jealous of his experience with the team. One aspect of the team that is shared with Justin is their main motto, written on everything: ATTITUDE

In camping, Justin has been invaluable at Liberty Lake in his roles with the Teen Leadership, as well as in helping plan trainings for the staff as a whole. Last summer he did what he called "the summer camp iron man" - working 7 weeks in the Texas heat and 7 weeks in the stickier NJ heat. He's been talking about these experiences on the Day Camp Podcast (we just recorded a special "bonus" episode), at a session at Tri-State last week, and more- as his experience from the front-line to the administrative side at camp, and his knowledge from his "human organizational communication" major, allows him to share valuable insight and perspective.

His latest passion recently has been at lululemon in which he went through their training, quickly became an unparalleled sales force of one, and after only three months has become part of their training team. After camp this summer- full time job? Grad school? Who knows- the world is his oyster. As much as we'd love him to visit his sister and chill out for a little on a remote beach in Panama (Jessanya has a great thing going on) - Justin doesn't have time for that. His drive, energy, and his challenges / accomplishments bring him great joy- as does his eagerness to bring joy to others. If we don't make another post in Caringbridge for another 10 years- Your guess is as good as mine as to what Justin will be doing. 

Shout out to all of the friends and family members out there who are currently in treatment, those who are in nervous remission, and those who have lost a loved one.  And to the care givers- Moms, Dads, Grandparents, Aunts/Uncles, Nurses, Nurse Practitioners, Doctors, and Technicians. And to organizations like the Leukemia and Lymphoma Society, American Cancer Society- and the scientists and researchers they fund who are finding potential cures as you read this. Hopefully Justin's story- starting with the diagnosis 10 years ago, two horrible full-rounds of chemo, immunotherapy, and a stem-cell transplant- will continue to inspire others to stay positive and optimistic, throughout their battles and journeys.

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