The Gupta Family

At two years old, when a recurring fever prompted a routine panel of blood work, Chinmay was diagnosed with acute lymphoblastic leukemia. After seeking the best care available to them in Delhi, India, Chinmay’s cancer returned, and his parents decided to pursue CAR T-cell therapy as an alternative treatment option.

In his own words, Chinmay’s father Rajul shares the story of his son’s diagnosis, the challenges of treatment, and the journey to the United States to receive CAR T-cell therapy.

My son’s cancer diagnosis

In May 2017, Chinmay, our 2-year-old son, had a fever for 7 days. Routine labs showed it to be standard-risk Acute Lymphoblastic Leukemia (ALL).

With a lot of anxiety, but also with a lot of hope, we began treatment at the best hospital in Delhi, India. With the usual ups and downs, we completed the intensive and the maintenance phases of treatment.

We were devastated when we learned that the leukemia had returned.

Chinmay had an isolated early central nervous system (CNS) relapse, and the chances of cure dropped from 95 percent to 60 percent. He was started on a relapse protocol in September 2019, and he responded well to chemotherapy. This time chemo was more intense, but the disease was under control and he went on to have 10 cycles of chemo. This was followed by CNS radiation in June 2020.

By September 2020, as parents, we could tell that all was not well. Chinmay had headaches, and it kept becoming worse. In October 2020, he had plenty of leukemic cells in his cerebrospinal fluid (CSF).

The leukemia had returned.

Challenges we faced in leukemia treatment

Even in the best (and probably the most expensive) hospital in India we faced the following challenges:

1. Supportive care, although good, was below par as compared to North America or Western Europe.

2. We had to to travel to one of the metropolitan cities in India, 700 km from our home city, to get treated in a unit with pediatric oncology service.

3. We still have doubts about the quality of chemotherapy drugs he received in India, as we have read many reports of pharma companies and companies being blacklisted in North America/West Europe.

4. Some diagnostic modalities such as next generation sequencing, were not available in India in 2017. We strongly feel that some genetic mutation has been missed.

5. Even with insurance, we spent a lot of money on travel, apartment rent, food, etc.

6. My wife went out of practice and lost her prestigious positions as a radiologist in a leading hospital.

7. Me as an orthopaedic surgeon, had to continue working. I could not focus on my son’s treatment as well as I would have liked to.

8. COVID immensely complicated the situation. My weekly travel to Delhi from my hometown was a hundred times more difficult. Also, we faced the prospect of getting infected as we had to be frequently hospitalized.

What led us to decide that we needed CAR T therapy

As Physicians, we knew that CAR T therapy induced remissions, and possibly long term cure, in a lot of patients that didn’t stand a chance with standard treatment. Also, its toxicity profile (most of the time) was more favourable as compared to high end chemotherapy. We really didn’t want our son to suffer more of chemotherapy, while still having best shot at long term cure.

Enrollment in the CAR T trial

We tried hospital programs in the United States first, however most declined to take up an international patient, and the costs were prohibitive. CAR T was also available in Singapore, but due to the COVID-19 pandemic, only my son and my wife could travel there. That was not feasible.

Despite many CAR T trials in China, we got a very cold response from them. Most of our mails didn’t get a reply. Even when we got a reply, their treatment plan never made much sense.

We also tried getting to Israel. Travel was the biggest hurdle in getting there.

All this while, we were in touch with the wonderful Dr. Nirali Shah and her superb team at the National Institutes of Health (NIH). They had, as expected, stringent inclusion and exclusion criteriae. They asked to be in touch with our physician in India. A lot of tests had to be done and repeated while they could analyze his eligibility to participate in the CD 22 CAR T trial.

Our travel to the U.S.

As expected, COVID made everything much more difficult.

We could not get an emergency B2 medical VISA appointment with the U.S. embassy, despite a lot of effort. It was only after 2 weeks that I could connect to someone in the Ministry of External Affairs (MEA) in India. A senior officer intervened on our behalf and got the appointment.

I was just recuperating from mild COVID myself when our VISA interview was scheduled.

Shocking, our genuine VISA application was denied, despite every document being in order. The consulate officer didn’t have a look at any document and made her decision to deny us the VISA based on the fact that we posed a risk of turning out to be illegal immigrants.

We were appalled, crushed, and defeated.

Finally, we reached out again to our friend in the MEA. I also contacted Tom Whitehead of the Emily Whitehead Foundation and he reached out to a U.S. political team, which agreed to hear us. However, our friend in the MEA got us a repeat interview with the consulate. This is an extremely rare scenario, repeat interviews are granted very rarely.

In the repeat interview, the officer apologized and granted us the VISA.

After a further battery of tests, we took the flight and landed in the United States on January 1, 2021. We were mandated a 10-day quarantine period and we stayed in a rented accommodation in Bethesda, Maryland.

(Here we met Carolyn and Paul O’Reilley, who helped us a lot and are two of the finest human beings that I know.)

How we learned about the Emily Whitehead Foundation

I met Dr. Mansi Sachdeva in Delhi, where she told me about Emily’s story. She was a pediatric oncology fellow on the team that had given CAR T cells to Emily. I searched the web and reached out to Tom.

Tom encouraged us and told us to hang in there. He told me of his (and Emily’s) battle against leukemia, and how they emerged victorious. They served as a beacon of hope and a pillar of support when we were most broken. Tom also connected me to a few patients and families, and a Facebook support group, which gave us a lot of strength.

We always have the feeling that as long as we are in the USA, we have a strong backup in form of the Emily Whitehead Foundation.

Our experience in the U.S. so far

We stayed for a mandated 10 days quarantine period with Mr. and Mrs. O’Reilley in Cabin John, Bethesda, Maryland. They were extremely hospitable and helped us a lot.

The NIH team was constantly in touch with us and their care and concern was overwhelming. On January 11, 2021 we moved to NIH Children’s Inn, which is a place like no other. We were so very well taken care of.

Dr. Shah’s team has been outstanding in their approach, understanding, and unfaltering support. The NIH staff is incredible, and the hospital infrastructure is great. After the evaluation, Chinmay received his CAR T cells on February 4, 2021. Up to the time of my writing this, he has been comfortable and done well.

We know that it’s a long way to go in our fight against leukemia, but we would like to express our gratitude to all the people who have helped us so far.