Meet Ishan Gala
The Life of a Special Child and Gift From God
Ishan's story as told by Father Mayank Gala
The joy of life before diagnosis...
Our son was born on August 28th, 2006. He was a special child. I remember when I first laid eyes on him after he came out of his mother's womb. Tears flowed uncontrollably as my heart was so full of love for this child that God had blessed us with. Instantly those fatherly instincts became apparent. Our lives would never be the same. I remember Sejal and I praying over him and thanking the Lord for this precious gift in our life. I had to leave the hospital once for a few hours and I just replayed pictures of him on my phone as tears of joy streamed down my face. I couldn’t believe how blessed we were. Life was perfect!
I recorded everything my son was doing. Everything from his first bath, to the first time he rolled over, to his first step. This little bundle of joy brought so much happiness to my wife and me that we were so content in being a family. I even took a back seat in my business because I loved waking up every morning with him. I loved smelling his soft baby hair. I loved being there for every new thing that he did. Curiosity was his middle name. He was so mechanical. He loves to open the tops to pens and put them back on. He loved to play hide and seek and his giggles were the music that ran through our house. Life was perfect!
He was also a very giving child. If you opened your mouth he would joyfully give you his food. He had no favorite toys he only had his parents whom he adored. The only thing he was attached to was his mother's hair. As she would hold him in her arms he would take one hand and slide it into her hair. His little cute fingers would twirl strands of her hair as you could see this comforted him. He brought smiles to everyone that came in contact with him. He said “hi” to everyone no matter whether they were inviting or not. He was a bundle of happiness that touched everyone. His spirit was so pure. His nature was that of a saint. I can’t explain the joy as parents that we had to have him. Sejal and I would often look at each other and think how favored we must be by the Lord to have such a beautiful little boy.
Life was perfect! We moved into a new house in May 2007. I remember painting his playroom. I remember my mom painting a mural of the beach in his bedroom. We were so happy. I felt so complete. We celebrated his first birthday party with our close friends and relatives. We had about 50 people at our house on Labor day weekend of 2007. Our little boy was one year old! The memory of that weekend is etched into my heart. After we celebrated his birthday we went hiking the next day! I remember strapping him into the harness as I carried him up the mountain. It was such a feeling of security. I loved holding Ishan in my arms. He radiated love and compassion. Later that day we went to the pool. He enjoyed the water so much. We wanted so much for our little Ishu. Sejal and I would spend hours talking about how we wanted to raise him and what we wanted to provide for him. He filled our lives with so many dreams!
The journey begins...
In December 2007, we decided to take a trip to India. My grandparents were still alive and we thought it would be a good time to take Ishan to visit the family. However, our trip did not go as planned and we had no idea that this would be the beginning of our life-changing forever…
On December 17th, we went to a restaurant with our family and when we got home Ishan vomited. No big deal, we thought he probably ate something that he didn’t agree with. Well from that point until January 2nd when we left India the vomiting, diaherra, and fevers came and went. We took him to the doctors there thinking he has picked up some kind of virus but there was no explanation! On January 2nd, the day we left India, Ishan started running a low-grade fever. I was just relieved we were coming home and once we could go to our local pediatrician everything would get fixed! It’s amazing how much faith we put into the medical community.
The fevers persisted for the entire month of January. We must have been to the pediatrician 4 times that month. They were running test after test and nothing seemed to explain the fevers. Finally, on January 24th, I got a call from Sejal saying they found that he had Salmonella. I was so relieved that we had found the problem. They put him on antibiotics and I thought we were done with this nightmare, not realizing that it had just begun. On January 30th, his fever still persisted. We insisted to see an ID Specialist at the University of Virginia Hospital. He took a look at Ishan and couldn’t seem to see anything wrong. The look I saw on his face was one that I will never forget. I could tell something wasn’t right. We left there mid-day and decided to go for some lunch. Before we could reach the restaurant we got a call from UVA and they wanted us to take Ishan to Martha Jefferson Hospital immediately for a CT scan. I thought it to be kind of strange for them to rush a scan. Back we go to another hospital.
We stayed there for the entire afternoon. Ishan was getting cranky and wanted to go home and I couldn’t really blame him. After the scan they kept us there for several hours. Finally, at 6 pm, they asked us to go to our pediatrician's office to discuss the results. I didn’t understand why they couldn’t just tell us. As we were driving to the pediatrician's office I knew something was wrong. My mom was with us and she was very quite. She was a doctor she had to know something. The office was already closed but Dr. Michaels was waiting there for us. He brought us into one of the examining rooms and told us the news…
We were admitted that night to UVA hospital where we spent the entire month of February. I remember that first night felt like an eternity. Why us? What was going on? He was so healthy? How could he have this in his body? He was perfect. I found my mind wouldn’t stop thinking. It was like silent torture. I couldn’t focus on anything! I had no idea that the next 7 months of our life would be spent fighting for our sons life…
Neuroblastoma, a rare childhood cancer that takes the life of 50% who get it. Cancer that has no cause. There is no reason. I didn’t even know that kids got cancer until this happened to my son. Mid-February Ishan was diagnosed with Stage IV Neuroblastoma with NMic amplification. All I wanted to know was that my little boy was going to be ok…of course, no one would give me that guarantee.
God why us? I remember as some of the reports came in I would repeat in my mind over and over “I’m not moved by what I see, I’m not moved by what I hear, I’m only moved by what I believe and I believe he is healed” Sejal and I held on to the promise that God would heal Ishan and restore him to perfect health.
We moved from UVA to Sloan Kettering in NYC in mid-March. We wanted the best for Ishan and that’s where we were told to go.
Our fight...
How can I summarize what we experienced in 7 months? Two major surgeries, 7 cycles of chemotherapy, an arsenal of antibiotics and anti-nausea drugs, scan after scan under anesthesia, bone marrow aspirations, pain medications, antifungal medications, fevers and infections, inpatient and outpatient, late nights and early mornings, good days, and bad days, eating and not eating. One medication would be needed for the side effects of another medication. We spent 24 hours a day like many other parents trying to make our son’s life as normal as possible. We were living in a world that we didn’t know existed. The hospital became our home and the team of doctors and nurses our family. We did it with joy knowing that in the end, everything would be ok and that God’s plan would be perfect according to his will.
On August 28th, 2008, our little Ishu turned 2. We put him in the stroller that morning and as we walked the familiar route from 73rd Ave to 68th for our routine check-up at the hospital Sejal and I were discussing where we wanted to take him. He enjoyed the Bronx Zoo so lets go there. Once we got to the hospital we could tell Ishan wasn’t feeling too well. The doctors and nurses tried coming in to sing happy birthday to him but he wasn’t interested. I remember Dr. Modak looked at him and felt that maybe we needed to do another scan that day to see what was going on. We were taken to the 9th floor, where we had spent many nights, for another few days at the hospital.
On August 29th we were told the news that no parent should hear, “We are sorry there is nothing else we can do”. I remember Sejal and I crying so much that our hearts were hurting. Is anyone ever prepared to hear that? We made a decision as we walked back to the room where Ishan was that we were not giving up. We were going to take him home and a good friend of ours from Florida was going to come and start a natural treatment on him! Faith is a powerful thing! Hope should never be lost for behind it comes if lots of fear is lurking to enter. We wanted out of there. Ishan continued to look worse. He was put on oxygen to help with respiratory distress and his belly was getting more distended.
The process of letting go...
On September 3rd, the hospital arranged for an ambulance to take us from NYC to our home. I remember that ride home. We still believed with all of our hearts that Ishan would be ok. We arrived home and it seemed like this wasn’t real. Just a short time ago we were playing in his playroom, sitting reading a book, dancing to music, kicking the ball in the driveway and now he was being brought in on a stretcher, connected to oxygen! God what is happening, this can’t be real! Hospice was there. The medical supply company was there. Our friend had flown in from Florida and she was preparing her therapy! I felt like it was chaos. I just wanted everyone to leave and for us to be a normal family. Ishan spent three days at home. You could tell he was tired. He kept pointing at different parts of the room as if there was an angel waiting to take him home. He pulled at his tubes as if he was letting us know that he no longer needed them. It seemed as if he was just pleasing us…
At 5:00 am on September 6th, I had only been asleep a few hours, I woke up seeing my mom and Sejal trying to help Ishan breathe. I saw in my mom's eyes that this was the last morning for Ishan. I held him in my arms as I felt the fluids filling up in his body. He didn’t cry or complain just sat in my lap content as if he had no fear in the world. He looked up at me twice as if wanting to release. He always wanted to make us proud and that he did…these were the last words to my son before the Lord took him home. “Mom and dad are proud of you… It's ok for you to go now and be with the Lord”. Five minutes later I felt Ishan’s spirit leave his body. The little boy that we were blessed with on August 28, 2006, went home on September 6th, 2008. As I held his body and was crying profusely, I felt a strange kind of peace knowing he was no longer suffering…He was no longer suffering…
I know... if your a parent reading this you can’t help but have tears streaming down your face. I know you may share in our pain…But I also want you to know that Ishan’s legacy will live on. It has risen a burning desire in me to make an impact in childhood cancers. There is a cure and it will be found. I ask you to join me in this cause and help us so more parents may go home with their children back to a normal life…When God closes one door, He will open another…
