At age seven, Emily Hunt was diagnosed with B-cell Acute Lymphoblastic Leukemia. When Emily’s cancer returned following years of standard chemotherapy treatments, her parents sought out the CAR-T cell therapy clinical trial at Children’s Hospital of Philadelphia. Emily received her T-cells in June 2014 and remains happy, healthy and 3 years cancer free.
In her own words, Emily’s mother Kim Hunt shares the story of her daughter’s diagnosis, treatment options, multiple relapses and the journey to CAR-T cell therapy.
In 2006, when Emily Hunt was getting ready to enjoy her summer before she started second grade, we received the shocking news that she had B-Cell Leukemia. For several months leading up to the diagnosis, she was having hip pain. Her pediatrician did a thorough examination on her and decided it must be growing pains.
For months her hip pain got worse and she developed a very prominent limp. One day a friend of mine said “Kim, I don’t mean to scare you, but you should really have her checked for leukemia.” I thought she was crazy and I was actually a little upset that she would mention something like leukemia. The next week I took her to her pediatrician and it was obvious to him that something was really wrong because her left hip was higher than her right and her spine was curved a little.
After lab work and an MRI, I received the news that she did in fact have leukemia. The next few weeks are a blur, but I clearly remember walking on to the oncology floor at Rainbow Babies in Cleveland and feeling sick to my stomach as I saw bald-headed, puffy-faced children walking around.
For the next 2.5 years Emily went through the standard treatment of chemotherapy for her type of leukemia. She was considered a “slow responder” because she didn’t go into remission as quickly as expected. Because of that, she received 2 rounds on induction therapy. She did not go back to school in the fall, but was tutored at home and in the hospital.
We spent countless weeks in the hospital. Our lives revolved around fevers and hospital admissions. Life completely stops when your child is going through cancer treatment. Eventually, she was well enough and started back to school in the middle of third grade.
Six months after finishing her chemo she started to limp again and have the same hip pain. It was terrifying and I didn’t want to believe that it could be leukemia again. Unfortunately, blood work showed blast (immature white blood cells) in her blood stream. We received the news that she had relapsed and the leukemia was back.
Hearing this news a second time is indescribable. This time we were told she would need a bone marrow transplant in order to give her the best chance of survival. Conditioning for a transplant is overwhelming. She was given intense amounts of chemotherapy and total body radiation. Again, she did not respond to the chemo as planned.
I remember her doctor telling me, “Kim, we are going to expose her leukemia to some new chemotherapy in hopes of getting her into remission, but if we are not able to get her into remission then we will need to sit down and have a serious talk about her future.”
He mentioned things like “quality of life” and “end of life choices”. I was beside myself with fear and anger. Fortunately, she did get in to remission and exactly 4 years after her first diagnosis she received an unrelated cord blood transplant.
Bone marrow transplants are tough to watch someone go through. She was so sick and pretty much slept all the time. She was lucky to not have a lot of side effects. So many children have devastating side effects from the transplant and end up dying or living with long term side effects that decrease their quality of life.
Two months after her transplant she was discharged home. Life after transplant is difficult. There are so many restrictions in place. She was tutored at home and missed half of 5th grade and all of 6th grade. Six months after getting her transplant she developed an infection, became septic, and ended up on ECMO which is a heart/lung bypass machine. All of her major organs were shutting down, she was dying right in front of us. For 6 weeks she laid in a coma hooked up to life support, kidney dialysis, and a ventilator.
During that time she had a stroke that affected her left side and developed a large bleed in her left lung. It was an incredibly scary time in our lives. In all, she spent 3 months in the ICU and 6 weeks in a rehab hospital, but she did make it home. It was a long road to recovery but she did it. Slowly, life came back to semi-normal.
She returned to school in the middle of 7th grade and was finally able to live the life of a child. Fast forward to 2014 and she is a freshman in high school. Life is good. She looks and feels great. In January, a routine visit to her oncologist and lab work showed her platelets were low. Emily was freaking out and scared to death that the leukemia was back. I refused to believe it. That evening, we got a call from her physician who confirmed that there were blasts in her blood stream.
The emotions that were running through our family is not something that can be described. The only thing you can do is go into survivor mode and not let your emotions take over. Her team at Rainbow Babies wanted to get her back on the transplant list. Her father and I were terrified to put her through another transplant.
A year or so before this latest relapse I had read a post on Facebook about Emily Whitehead and T cell therapy. I saved the article because I wanted to keep it handy “in case” her leukemia returned. Coincidentally, we have a cousin who, at the time, was a pediatric oncology nurse at Children’s Hospital of Philadelphia (CHOP). She was the one who posted the story on Facebook so right away I got in touch with her.
Emily was immediately admitted to Rainbow Babies and started on chemotherapy. While she was there, her doctors and I were getting her set up with a visit to CHOP. Two months later we headed to Philadelphia for our first consultation with Dr. Rheingold. A lot of blood work was drawn and we were given the details about T cell therapy. It was very scary to listen to her talk about it because it was so new and they really couldn’t tell us a lot about its success or what the future holds for kids receiving this therapy. We headed back to Rainbow so Emily could continue chemo. A few weeks later we headed back to CHOP for a quick visit so Emily’s T cells could be removed from her blood stream and sent off to a lab where they needed to double in size and be checked for infection.
While her T cells were being re-engineered, she was back at Rainbow receiving large amounts of chemo. The leukemia was not responding and the blast in her blood continued to grow. Eventually they blasted her with large amounts of chemo and it took her blood counts down to zero. For weeks and weeks she had no white blood cells. She developed an abscess internally and CHOP made it clear that she could not be accepted for the therapy with any type of infection.
Again, it was an incredibly terrifying time as we waited for her white blood cells to come back and eventually they did. The abscess cleared, Emily’s T cells were successfully re-engineered, and on June 12, 2014 she received her new T cells.
She quickly developed a fever and was admitted to the hospital less than 8 hours after receiving her new cells. She had a pretty intense response which the physicians call a “cytokine storm.” We were warned about the side effects of this therapy and how serious the cytokine storm can be. Her BP dropped dangerously low; she was confused and talked to people who weren’t in the room. Her respiratory status became more labored and after a few days she started to have seizures. Even though we were warned that these things could happen, it was still scary and upsetting to watch her go through this, especially the seizures.
Every day during rounds the doctors reassured us that this type of reaction tells them the T cells are really working hard to kill the leukemia cells and that it would only last about a week. I’m not going to lie, we had our doubts, but sure enough about 7 days later she woke up at 4 a.m. and asked for me. It was the best sound ever! It took her a few more days to recover from the seizures and get her strength back, but a few more days later she was discharged back to the Ronald McDonald House.
Update, in Emily’s own words, added September 2021:
I began my college career healthy, and happy. In January of 2019, I was accepted into Kent State University’s nursing program. I was staying busy studying, going to school full time, working, and going to clinicals. A busy life was a happy life.
Shortly before the end of the semester, I began to have nagging, ongoing symptoms of what I thought were kidney stones. I went to urgent care more than once, and my family practitioner multiple times. After waking up in excruciating back pain one morning, my mom decided we needed to go to the emergency room. There, I got a cat scan of my Kidneys, and everything seemed to be just fine. For months now we did not have answers.
We tried not to live in fear as I had not a single symptom of a potential relapse. And this is where we truly began to realize just how “smart” leukemia can be. I had no fever, no frequent infections, bone pain, joint pain, weight loss, nothing. With all previous relapses, I had some hallmark sign that my body was once again filled with leukemia. After giving what seemed like 100 urine samples, I finally reached out to my oncology team in Cleveland. They also seemed to be at a loss as to why as I having such severe back pain and was urinating blood.
They contacted my care team at the Children’s Hospital of Philadelphia. This is when they recommended something no other provider ever had. They requested a urine sample to test for cytomegalovirus — a virus that only immunocompromised patients are at risk of acquiring.
After testing positive for this virus, the long, dreaded road to another relapse began to happen. From that moment I spent days giving multiple blood samples, urine samples, and bone marrow biopsies. When meeting with my care team one day in Cleveland, my physician pulled up the cat scan of my kidneys that had been performed a few months prior at the emergency room. My mother and I sat in the room as he pulled it up on the computer screen. While he was not looking at my kidneys like originally intended, he began to point to my pelvis and point out these abnormal, white clusters on my bones. I am no radiologist, but even I could tell those spots were not supposed to be there.
He told me it is most likely leukemia and there is no other explanation for these abnormal cells. The room was silent. I remember looking at my mom, and then back to the doctor. I said “No, there is no way. You’re wrong.” “I have been in remission for 5 years, I’m fine. That picture isn’t right”. How could I have been in remission for five years, living a normal, happy life, working, going to school, fulfilling my dreams and this possibly be happening?
With a results of the CT scan , the positive test for BK virus, and soon a bone marrow biopsy showing leukemia blasts, a third relapse was confirmed.
My mom arrived home from work one day and came into my room to deliver the news. I could tell by the look on her face, something was extremely wrong. I held out faith that all the previous tests were not correct, or maybe I could have them repeated and they would all be better the second time. As she opened my door she said “Its back” I said.. “How?!” She then began to explain that the leukemia cells had ‘outsmarted” the immunotherapy. It was almost as if the ‘mutated’ so that my reengineered T cells would no longer recognize them. I previously received the “CD-19” T cell therapy. My T cells were trained to fight off and kill all leukemia cells that expressed the CD-19 protein. Now, the leukemia cells were expressing the CD-22 protein. My T cells no longer recognized them. Therefore not fighting them off.
At this point I pretty much knew there were no other options. But then again I thought “Not me, not my family.” There is no way I am going to die because I am out of options. That could not possibly happen to me. Especially after all that I have been through.
My parents immediately began googling all treatments they could. They called multiple hospitals around the country to see if there was any treatment or clinical trial I could qualify for. We always kept CHOP in the back of our minds, we loved it there. But at the age of 20, I could also be treated as an adult, so we kept our options open.
This is when we were led back to CHOP for another clinical trial. This time, a trial that was specifically for patients in my exact situation. Whose leukemia came back even after CD-19 T cell therapy. Thank you, God, our prayers were answered. We were not out of options. In fact, we found the perfect one. IT had my name written all over. We once again put all our trust in the hands of the amazing practitioners at the Children’s Hospital of Philadelphia.
I received some light chemotherapy over the summer at my home hospital in Cleveland. I got my T cells extracted in early June. We let my T cells grow, multiply, and become super strong and reengineered over the summer. I went back to Philadelphia in August. In preparation for my new T cells to be infused, I received a week of IV chemotherapies. My parents and I hung out in an amazing apartment in downtown Philadelphia. I was feeling great and we spent time exploring, sightseeing, and going to Phillies games.
On August 20, 2019, I received my reengineered T-cells. We are so thankful. We went back to the apartment. We hoped and even prayed that I would get a fever. We knew if I did it was a great sign that my T cells were doing what they were supposed to. About 2am, that morning, I did get a fever. I had never been so excited to know I had a fever. We went to the hospital, and I was admitted. I began to have some shortness of breath and difficulty breathing. This, along with some severe muscle aches and pain became the worse of my side effects. I would take these two, somewhat simple side effects over chemotherapy and radiation any day of the week, one thousand times over. After an almost two-week admission, I weened myself off the oxygen, and with some pain medications and exercise, my muscle pain would decrease over the next couple of months. I am thankful to live in a world where the worst side effect of a life saving cancer treatment is arm and leg pain.
We came back home in September 2019, and life has been wonderful since. I went back to school in January of 2020. I spent the next year and a half working my tail off, studying, working, and living my best life. In May of 2021, I graduated with my Associate Degree in nursing. In August, I passed my licensure exam and am so happy to say I am officially a Registered Nurse! In September I will start work in a critical care unit at a local hospital.
It is my hope and prayer that immunotherapy is the future. I would love to live to see a day where immunotherapy is the first line of treatment for cancers like leukemia, and hopefully one day for all.
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