SAMEER'S MOTHER, RANJINA, SHARED THIS CANDID STORY ABOUT HER SON'S GAINS AND LOSSES AND HOW AN EXPERIMENTAL AND INNOVATIVE TREATMENT HELPED SAVE HIS LIFE. NOW KIDS & ART IS HELPING HIM HEAL.
Despite his young age, Sameer has already beaten cancer three times. He was first diagnosed with Leukemia in 2005 at the age of two. We spent nine months in-patient at Lucile Packard Children’s Hospital (LPCH) when he was first diagnosed. During this first treatment, Sameer picked up a disseminated fungal infection that spread to every organ as well as to his brain. The oncologist said that he had maximum three months left to live, how little by little parts of his body would stop working. One day, one finger may no longer work. Another day, another part of the body will not, and eventually, his entire body will stop, and he will be gone forever.
When we asked the oncologist, if anyone had ever survived such a medical situation, the oncologist said that in her 23 years of being a doctor, no one had, so far. Sameer fought through it. We have been told by some medical providers that he was the first person to ever survive a fungal infection of the brain, and that this complication is now actively treated for other patients, thanks to Sameer.
Sameer spent almost four years getting chemotherapy upon his first diagnosis. Dozens and dozens of medications every day; lots of needles; lots of pain, but he refused to ever give up. He would throw up day in and day out with no break from his suffering. He never ate a bite of food in all those years without fear and a fight. For the entire first year, he ran high fevers around the clock. He had severe internal bleeding. Blood shot out of his mouth when he was three years old, so much blood that his entire crib blanket was soaked. Transfusions were done around the clock and an experimental drug was used to save his life. He lost the ability to walk for two years. He would sit and watch children play.
He relearned crawling, and then walking, but he still had a very difficult time walking. His pain was too extreme. He still can’t run, even to this day. Currently, he is undergoing treatment so that one day he will be able to.
Sameer was cancer-free for about a year, then in 2011, the cancer came back. Once again, he was hospitalized, and the Oncology team at LPCH determined that his only real--a very, very slim chance--at survival was a stem cell transplant. We started a search for a stem cell donor. During this time, we were again living in an inpatient room at Stanford full time. Sameer got extensive radiation therapy, chemotherapy, and lots and lots of pain medications because these procedures are very painful. A donor was found after about five months of searching, and the transplant was done.
In front of our eyes, he just deteriorated from all the medicines that were used. His pain was so extreme, that day and night, he would scream in pain. He would scream like his soul was suffering in misery. His beautiful hair once again started falling out. He had so much, and it would get all over the room, covering the blanket and his pillow. It was everywhere, like a mess.
I asked one day if we could just shave it and he cried saying, “No! Please don’t. He was eight years old by then. Then one night at 1:00 a.m., he told me to just get rid of it. It was almost gone by then. We both cried as I used an electric shaver to remove what was left. Sameer’s treatment took such a toll on him that he would hide under the blanket out of fear at times. He would just shut down like he had passed out. He received his first transplant, but unfortunately, after a month, the cancer came back again with an engraftment failure. A year had gone by with him as an in-patient by then, and he hadn’t even gotten a chance to go home yet.
The doctors held a care conference with us and told us that at this point, Sameer has a zero percent chance of surviving. We were told that there was nothing left to do medically for him since he had just had a transplant a month prior. They said that the medical team had searched everywhere in the country and that there was no treatment available anywhere. We were told that he had very little time left. It was all unfolding in way that was hard to grasp as a mother. I asked what they meant, and I was told that it was time to prepare for his funeral, and that the end of his life would be extremely painful. The medical staff wanted to to sedate him so he wouldn’t feel the pain. I asked if he could go to the park, and we were told that he would soon be too sick to do anything and that his pain would be so severe that he would need to be sedated.
The second part of the meeting was about to start in an hour, so I went into my son’s hospital room to start packing. He was so sick that he wasn’t able to talk anymore. He used to talk so much before, but by this time, he was so sick that we wouldn’t hear his voice for days at a time. I used to pray and beg for him to just say “Mommy.” My ears used to crave hearing his voice.
Anyway, I started packing his toys that were in the room. That’s when he spoke to me. He asked me what I was doing. I said that the doctors said it was time to go home. His reply was, “No, its not time yet.” He said that he could be healed, and that he was not healed yet. A nurse was in the room and she heard it. Our BMT social worker was right outside the room coordinating the next part of the meeting with the palliative care team. I asked her to come inside and told Sameer to tell her what he had just told the nurse and me.
Sameer repeated the exact same words. The social worker immediately turned around and left the room. She walked in again with the Palliative Care MD, and she asked Sameer to repeat what he had just said. Sameer repeated the words again. “I can’t go home. I’m not healed yet. I can be healed. It's not time.”
He left everyone in a stage of desperation to help him since he was asking to be helped. The doctors had said that his cancer was just too aggressive. It could not be cured. Then added that they would try to engraft him by doing another transplant. They warned us that his health was in such a delicate state that most likely he would not survive it.
Sameer’s dad said that since he wouldn’t make it anyway that “If we’re going to go down, we will go down fighting.” Then, the doctors rushed to get FDA approval to try a very experimental treatment to gain some time for him and for his last wishes to be accomplished. Sameer’s father's stem cells were transplanted to him.
During the year following Sameer’s relapse admission, he had created his bucket list. Four weeks later, his stem cell doctor walked into our hospital room with the words: "It’s a miracle!" There was no sign of cancer. He was discharged a few weeks after that.
We could not go more than 15 minutes from LPCH’s Emergency Room, so we rented an apartment in Mountain View for four months. After this time, the doctors pronounced Sameer well enough to finally go home to Fremont. Sameer has had a very long and traumatic experience. Most of his childhood was spent struggling to stay alive and wishing he could play and run around. Even to this day, he can’t run and we are still working on his dream to run around and play soccer. All these experiences have left many deep wounds.
Sameer is an amazing kid. He would dream of playing and being a child in his dreams and wake up convinced that he had done all that for real. That's how he coped with his life and the suffering that came from fighting cancer for many years starting at such a young age. He also missed his first few years of schooling. His life wasn't easy, and it scared him a lot, but he kept fighting hard to live. He has dealt with a degree of pain, misery, and suffering that would have made many give up. Kids & Art has played a huge role in helping him emotionally heal from a very difficult childhood. In Sameer's own words, doing art makes him feel safe and happy. Sameer is an inspiration to every nurse and doctor in the Pediatric Cancer Unit at Stanford, and he is my hero!