Nick Wilkins was four years old when a routine doctor appointment led to an unwanted diagnosis: Acute Lymphoblastic Leukemia. When Nick relapsed for the second time following years of standard chemotherapy and a bone marrow transplant, he was entered into the CAR-T cell therapy clinical trial at Children’s Hospital of Philadelphia as Patient #15. Today, Nick is healthy, attending college, and 4.5 years cancer-free!
In their own words, Nick’s parents Lisa and John share the story of their son’s diagnosis, treatment, relapses, and the journey to CAR-T cell therapy.
Nick Wilkins is the middle child of our family. He has an older sister Brittany and a younger sister Ashley. When Nick was 4 years old, he and his sisters went to their annual well visit with their pediatrician. But this year was different. Nick’s complete blood count (CBC) was unusual so he was referred to a specialist. At the time, we had no idea that the specialist that he was being referred to was a pediatric oncologist. The following Monday, Nick was seen by the specialty practice and a bone marrow aspiration was performed. The preliminary results were Acute Lymphoblastic Leukemia (ALL). He was immediately admitted to Inova Fairfax Hospital in which he began his 2 1/2 year standard chemotherapy protocol.
The 2 1/2 year treatment felt like it would never end but we made it through. Nick dealt with numerous doctor visits, nausea, baldness like a true hero. He never complained or cried during his treatments although the steroids made him extremely hungry and cranky with his sisters. His hospital stays during this time were minimal, and included a central line infection
Finally, Nick finished treatment at 6 1/2 years. But it turns out that we weren’t through with doctors, nurses, hospitals or chemotherapy. 4 years 9 months after treatment, Nick was playing football for the first time. He sprained his ankle and his dad took him to the ER. Based on his history, the ER doc decided to do a full CBC. A few days later, I received a call from the ER doc that blasts were discovered in his blood.
Nick immediately began treatment. Since this was a relapse, Nick began intensive chemotherapy treatment with the end game of a bone marrow transplant at Duke University Hospital. But 2 weeks into treatment, Nick was admitted to the ER with intense pains. He began receiving antibiotics and morphine immediately.
After a few days of back and forth with the pediatric oncologists and pediatric surgeons, we finally had a consensus that Nick had appendicitis. The doctors were concerned that he could be admitted for surgery at any minute but his counts were so low that they were concerned that surgery could be life-threatening. Chemotherapy was continued as well as antibiotics for 4 weeks but he finally needed surgery to remove his appendix. When the pediatric surgeon performed the surgery, his appendix had burst (most likely when he was in the ER) so she took a picture for Nick to keep for posterity as he would not be able to have the actual appendix. The 19 weeks of intensive chemotherapy was brutal for Nick. He spent maybe 10 days at home while the remainder of his time was spent in the hospital. Fortunately, he was home to spend Christmas with his entire family.
New Year’s Eve, John left with Nick from the hospital to drive to Duke University Hospital to begin the bone marrow transplant. Fortunately, both Brittany and Ashley were both exact matches for Nick. His older sister Brittany was chosen to be his donor but Ashley was the backup. The relapse was hard on the family as Nick was 4 hours away in Durham, NC. I would drive down to NC to be with Nick while John would drive back to VA to be with Brittany and Ashley. This driving schedule occurred every Sunday and Thursday so John and I were constantly on the road and we were exhausted but we were determined that someone would always be with Nick and the girls.
Nick finally returned home from Duke. He missed his entire 6th grade of school (middle school) with his friends but he was tutored by his teachers from middle school. The recovery period for a bone marrow transplant is quite lengthy as the patient is building up their immune system with someone else’s marrow from scratch. Nick’s first day of school for 7th grade was such a happy time!
But his story doesn’t end there. We would return to Duke for regular follow-ups to check his pulmonary and cardio functions. At his 3 year follow-up at Duke, we received the awful news that Nick had relapsed again. There are no words to describe what we were feeling. By the time that we left Duke, the plan was to do a cord blood transplant. While we were on the road, our doctors at Duke had already located cord blood for Nick so he began chemotherapy again.
After 28 days of chemotherapy, Nick underwent another bone marrow aspiration to see how well he was responding. I received a call from his doctor. When the doctor wants to speak to you personally, it typically isn’t good news. He was no longer responding to chemotherapy which meant that he couldn’t proceed with a 2nd transplant. More importantly, there wasn’t a plan but we were told of an experimental clinical trial at Children’s Hospital of Philadelphia (CHOP).
We were contacted by CHOP Saturday morning to begin the administrative process. A few weeks later, we drove up to CHOP for our meet and greet week. We met with Dr. Susan Rheingold, Nick underwent leukapheresis to remove his cells, and we met with Dr. Stephan Grupp to consent to the trial. Nick received his re-engineered T cells on May 21, 2013 as Patient #15. He was admitted to the hospital for 2 weeks with side effects from the T-cell infusion.
Amazingly, 1 month after the T cell infusion, Nick’s bone marrow was free from leukemia cells. Almost 4 1/2 years since his infusion, Nick is 19 years old. He learned to drive, graduated from high school and began attending James Madison University to study Justice Studies. A side effect from the T cell therapy is that he performs infusions every 2 weeks for antibodies to help him fight infections. But this is a small price to pay for the fact that he continues to have T cells hanging around.
We are so grateful to our amazing doctors and nurses at Inova Fairfax Hospital, Duke University Hospital and Children’s Hospital of Philadelphia. If not for the early years in treating Nick and keeping him healthy, he would not have had a chance to receive the life-saving T Cell therapy. T cell therapy saved Nick’s life and has given him a future that we would have never thought possible.
We’re making it our mission to change the standard treatment narrative for all kids fighting childhood cancer. We want a different journey for these heroes – one with less toxic treatments and without fear of relapse or loss of life. We need to write a better story for children fighting cancer.