Ishan’s journey, Remembered by Dad

Our son was born on August 28th 2006. Our lives would never be the same and life was perfect! This little bundle of joy brought so much happiness to my wife and I 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 being there for every new thing that he did. Curiosity was his middle name. He loved to play hide and seek and his giggles were the music that ran through our house.

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 who he adored. 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. I can’t explain the joy as parents that we had to have him.

We moved into a new house in May 2007 and we were so happy. We celebrated his first birthday party with our close friends and relatives. The memory of that weekend is etched into my heart. 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 life with so many dreams!

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. 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. We took him to the doctor 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 we could go to our local pediatrician!

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 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 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 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 that was kind of strange for them to rush a scan. Back we go to another hospital.

We stayed there for the entire afternoon.  Finally at 6pm 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 quiet. 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 a 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.

Mid-February Ishan was diagnosed with Stage 4 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. 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.

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 – just trying to make our son’s life as normal as possible. 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.

August 28th, 2008, our little Ishan 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 we wanted to take him there. Once we got to the hospital we could tell Ishan wasn’t feeling to 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 already spent many nights. We were there another few days.

On August 29th we were told the news that no parent should hear: “we are sorry there is nothing else we can do for your child”. I remember Sejal and I cried 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! Hope should never be lost for if lost, behind it lurks fear. Ishan continued to look worse. He was put on oxygen to help with respiratory distress and his belly was getting more distended (filled with air and fluid).

On September 3rd the hospital arranged for an ambulance to take us home from NYC to our home. I remember that ride home. We still believed with all of our heart 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 play room, sitting reading a book, dancing to music, kicking the ball on the driveway and now he was being brought in on a stretcher, connected to oxygen!

Hospice arrived. The medical supply company was there. Our friend had flewn in from Florida and she was preparing her therapy. It felt like 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 was pulling at his tubes has if he was letting us know that he no longer needed them. It seemed as if he was just pleasing us…

5 AM, September 6th, I had only been asleep a few ours, I woke up seeing my mom and Sejal trying to help Ishan breath. 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 release. He always wanted to make us proud and that he did.

These were the last words to my son.  “Mom and dad are proud of you… Its 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 tears streamed down my face as I sobbed, I felt a strange kind of peace knowing he was no longer suffering…

Not more than a few weeks later we founded the Ishan Gala Foundation to continue the fight against children’s cancer and help families down the long unpredictable road of treatment. The focus of the foundation is to fund research for less toxic treatment for children’s cancer as well as help families with any financial burdens throughout their child’s fight.