At 8 years old, when sudden weight loss and pain on his lower lips indicated that something was wrong, Vaibhav was diagnosed with acute lymphoblastic leukemia. After seeking the best care available to them in India, Vaibhav’s parents made the decision to move their family to the United States and seek care at the Children’s Hospital of Philadelphia (CHOP). When standard treatments continued to result in relapse, the team at CHOP recommended CAR T-cell therapy.
While Vaibhav initially responded well to CAR-T, he relapsed again three months post treatment and passed away in September 2020. In their own words, Vaibhav’s parents share the story of their son’s brave fight.
Our son Vaibhav was an unbelievably lovely, charming, and enthusiastic kid. He excelled in academic qualities, was quick in grasping things, and loved playing soccer and learning chess.
During the month of October 2014, when he was 8 years old, Vaibhav suddenly developed some weird pain on his lower lips for a few days, followed by weight loss and swelling on his parotid nodes. A series of tests were taken and finally, on the day before Diwali (an important Festival of Lights for us in India) he was diagnosed with acute lymphoblastic leukemia (ALL).
The news shattered us into pieces and turned our family’s peace upside down.
We immediately started the treatment plan in a most trusted and a very good hospital in our home land of India. Vaibhav was initially in the low risk category, but after a month from the diagnosis, he was moved into high risk category. As he was receiving the treatment in India, we started to search around the world for a complete cure for his cancer. We started to learn about the CAR-T treatment that was still in the clinical trial phase in the United States.
In mid-2016 we moved into this great country, which gave us some precious memories with our champ. We enrolled Vaibhav into the Children’s Hospital of Philadelphia (CHOP) for his continued standard leukemia treatment. After about a year, when Vaibhav was in maintenance phase, we learned that the CAR-T treatment was then approved by the U.S. FDA for kids and started following Emily Whitehead’s story. This literally gave us a great hope.
Vaibhav unfortunately relapsed in 2018, in both CNS (central nervous system) and his bone marrow. At that time, he was not eligible for CAR-T treatment. Once again he underwent chemotherapy and came into remission.
Vaibhav was a fantastic fighter. Along with his treatment, he managed to do well in studies, play soccer and had been a part of a a soccer team. Often we have heard from his school, as well as from his soccer team, that unless we tell them that he was undergoing the leukemia treatment, they would never know of it. Vaibhav was such an adamant fighter against cancer.
In November 2019, Vaibhav unfortunately relapsed the third time. That was when the doctors team at CHOP decided to do CAR-T for Vaibhav.
After his third relapse, Vaibhav was very low on the blood counts including his lymphocytes. We waited for nearly a month for his lymphocytes to raise while doctors kept his leukemia under control. We just had one day to extract T-cells and then immediately start chemotherapy to control leukemia, which sped to his lower jaw with excruciating pain. Finally, we managed to get cells from him and sent to the laboratory.
Meanwhile, Vaibhav developed a number of infections. The team of oncology doctors managed with a lot of difficulties to keep his leukemia under control, and at the same time to save him from infections until his cells arrived and we could be infuses into him on the 24th of April 2020.
Vaibhav always wanted to stay calm, and put a smile on everyone’s face who talks to him. The experience of the staff nurses at CHOP would talk about his lovely smile, courageous fight, and patience at any stage and any situation. We have always, and still do, wonder at his personality.
The CAR-T therapy gave him a second birth. The way Vaibhav recovered from the leukemia, and from all of those infections, is a proof by itself.
He had a lung infection during this period, and only because of CAR-T and it’s definite recovery process, Vaibhav could survive from the deadly lung infection in June 2020.
Vaibhav recovered very well from leukemia and from the infection and lived like the young man that he wanted to be. His look was always an important thing for Vaibhav like any others teenager, especially his hair style. He could do his favorite hairstyle after the CAR-T. He could start to eat his favorite food after about four months being on IV nutrition. He spent a very good quality time with his parents, family members, and friends over FaceTime as he was in the hospital for 9 months between December 2019 to early September 2020.
Unfortunately, the leukemia relapsed again at the end of his third month post CAR-T, but this time more aggressively without any markers in his blood work. His doctors and we were in a fix, not knowing how else we could save our child.
We managed to give him some oral chemotherapy medication that cleared the leukemia in his blood stream, but not in his liver. Unfortunately and painfully, Vaibhav’s liver gave up and we lost our King of Hearts on the 6th of September 2020.
Though we lost our champ in this battle, Vaibhav still lives in everyone’s heart that knew him personally, and for the way he fought from day one till his last breath, over a period of six long years.
Vaibhav always wanted to give back good things to others. After Vaibhav’s passing away, we humbly donated a family room at the Ronald McDonald house in Philadelphia to honor his fight and to help families and kids in need.
We as parents are trying to be of any kind of help to families who walk in the same path that we did. CAR T is a blessing, provides hope for the parents, and a cure for many many children.
Vaibhav is always the KING OF OUR HEARTS We miss you dear Vaibhav
We receive messages from families around the world with experiences similar to Venki’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 an eligible CAR T-cell therapy treatment center.
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