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At six years old, Julien Randolph started experiencing leg pains. After developing a rash and a fever, his parents took him to the doctor’s where he was diagnosed with B-cell Acute Lymphoblastic (ALL). His cancer didn’t respond well to standard treatments including chemotherapy and a bone marrow transplant, and he relapsed twice. In fall of 2018, 9-year-old Julien received his life-changing CAR-T therapy at Children’s Hospital of Philadelphia (CHOP). He reached remission and now celebrates six years of being cancer-free!

In her own words, Julien’s mom Shantel Randolph share the story of his treatment journey and the road to CAR T-cell therapy.

In summer of 2015, Julien was a healthy, highly energetic six-year-old. We noticed that he started to complain of leg pains and began to treat him at home with Tylenol as the pains came and went. He unexpectedly developed a rash and a high fever, so we immediately took him to the emergency room. Not receiving any answers, we took Julien to his pediatrician.

There, we began the “rule-out” process since up until this point he had a clean bill of health. His doctor thought that something was not adding up and sent Julien for blood tests. We had been with our pediatrician for many years and could tell that he was worried, and the situation was serious.

After getting the bloodwork done, we were called back into the doctor’s office the next day and were told the devastating news that Julien was diagnosed with B-cell Acute Lymphoblastic Leukemia (ALL). We were shocked. Julien was a perfectly healthy child. How could this happen to him?

We were immediately rushed to Sinai Hospital of Baltimore. Everything after that happened so quickly, it is all a blur. We were taken into a room where a team of doctors tried to explain to us what was happening. It was hard to focus because we were still in total shock. Julien has an older and younger brother and in our naive minds we were thinking we would be able to take Julien home and all be together. The nurses quickly explained how we couldn’t leave the hospital. That’s when it hit us that this is really serious.

After being admitted to the hospital, the care team sat us down again and explained his condition. Julien had a port put in and immediately started chemotherapy. He received several rounds of chemotherapy then went into remission. Seventeen months post-treatment, he relapsed.

At this point, we were given the option to go to Children’s National Hospital for a bone marrow transplant (BMT). In summer 2017, Julien received his BMT followed by a seven-month stay at the hospital. Julien was a very sick child and spent 88 days in isolation. After being released from Children’s National, he spent several months at the Ronald McDonald House receiving ongoing treatment. It took him about one year to recover from the BMT and finally reach remission again.

While on Julien’s Make a Wish trip, we noticed something had changed on Julien’s body. We quickly learned that Julien’s cancer had returned and he relapsed for a second time. We weren’t given too many options for treatment, and we had to advocate and push for them to even be given to us. One of our options was another BMT. Since he had barely survived the first transplant, we chose to not put his body through that again.

Another option was to go to Children’s Hospital of Philadelphia (CHOP) for Julien to receive CAR-T therapy. Julien’s oncologist at Sinai introduced us to CAR-T therapy and we decided it was the best option. In fall 2018, we made the journey to CHOP so Julien could receive Kymirah. He received his T-cells in October 2018 at nine years old. It was a relatively easy process for him, and he did exceptionally well.

In December 2018, Julien reached remission, and we were able to bring him home. He has been cancer-free for over six years.

Today, Julien is a wonderful 14-year-old young man with an incredible level of strength, humility, and wisdom. This past fall, he started high school and is an exceptionally smart student. Julien is the ultimate gamer and doesn’t go anywhere without his Nintendo Switch. He loves to play Pokémon and attend Pokémon tournaments.

Julien is our quiet Warrior and an all-around great kid. He constantly amazes us with his spirit and resilience. We are so thankful for the Emily Whitehead Foundation and the work they do to advocate CAR-T therapy on behalf of all patients and share their stories to raise more awareness for advanced therapies.

We receive messages from patients and families around the world with experiences similar to Julien’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access CAR T-cell therapy or other advanced therapies.

To help us in our mission to give patients around the world the opportunity to Activate the Cure, Get Involved or Donate now.