Today Sunchee completed 15 years of his life, in these 15 years, he has been a source of endless joy for everyone around him. I was thinking about why being around him is always so much fun. Then I realized, that it is his personality and being the easygoing person he is, he brings cheer to everyone.
Last year has been specifically challenging for him and all of us. He took this in his stride, he gets worried about things but then enjoys the present moment. Finds ways to do something that he likes and appreciates his friends, family and simple things in life. His enthusiasm for doing things right now and looking forward to doing things that he can is highly appreciable. He loves to eat different kinds of food. Unfortunately, he is limited in choices at the moment due to his kidney disease, but even then he finds something that he likes within the foods he can eat. Thats Sunchee, he loves to be himself and be happy with what he has got.
Even today, he enjoyed the day with his friends, had dinner at his favorite restaurant, and played table tennis right afterwards. Despite having some discomfort and issues with his stomach, he did not loose the opportunity to enjoy. In a way, life has taught him the hardest lesson one can learn to be happy with what he has and is in his present moment without worrying about the future and the past.
A typical 14 year old boy, born and raised in DFW area is a fun loving kid who enjoys some regular things.
He loves food, since, we are all vegetarians, he is one too. He likes to not just eat but also cook food. He has done several courses before and during pandemic related to cooking. He typically likes looking for vegetarian variations and adopting them to his own taste. He loves eating spices, since, our food is primarily south asian, he gets to taste a lot of spices. He also loves Texmex and only when its raining he likes to eat Thai :-). Of course, Italian cuisine is his favorite all time food, specially just pasta with red sauce.
There is not a football game that he misses which is being played by the Cowboys. He tries to watch as much as he can on week nights, but never misses the Sunday night games. He has trained a few years ago with some of the coaches from Cowboys team. He loved and truly enjoyed, he might have started liking football when he was in the flag football team. We have been to the cowboys stadium as well for a couple of live games to watch.
He plays French Horn in the marching band since the Middle school years. He tried various instruments and was good at French horn, he did concert band in middle school and then new in high school he is in Junior Varsity marching band team.
Theatre is his greatest passion, he loves drama and everything related to it. Within Drama he loves to be a comedian. He doesn’t care what sized role he has, short, long, medium, he is always ready to roll. He has played various roles including a solo musical as Olaf recently.
His passion for food serves him well with his parents interest who love to travel around the globe. Sunchit has been to various different countries across Europe, Africa, South and North America. He remembers a unique city with their cuisine and what we had eaten there. Below are some of his pictures from these trips.
All in he loves life and is happy and enjoys in every circumstance, with his family and his friends.
Last week I had documented the day Sunchit was diagnosed with Nephronophthisis in the third week of May, however, the journey had started about 6 weeks earlier.
Feb 23rd 2021 – I was checking Savita’s blood pressure with a friends BP machine which was showing some wide readings. Since Sunchit was sitting next to her, I thought of checking his BP to calibrate and see if the machine will work. His BP came out to be very high, several times in a row. I noted that, told Savita and she said she is going to see his pediatrician in a couple of weeks and will remember to tell him. Savita’s BP eventually got better by itself. March 15th: Savita took the boys to their regular Pediatric doctor and mentioned about Sunchit’s BP, in the checkup, his BP turned out to be fairly high. Thus started our journey, the pediatric doctor recommended we do a blood test for Sunchit.
March 25th: The following week Savita got his blood test done, as soon as the doctor got the report, he called up Savita and started asking very probing questions regarding Sunchit, if he was tired, was he nauseated etc. When she asked why all these questions, he said one of his markers “Blood Urea Nitrogen” (BUN) was very high and this generally indicated a kidney problem, he asked us to see a pediatric nephrologist right away. He eventually helped Savita in getting an appointment quickly as he was quite concerned. We got an appointment with the Nephrologist in the second week of April.
April 2nd: The day started off normal, earlier that week I had just started my new job with o9 solutions and was looking forward to start my bootcamp the next week. Savita got a call that morning from the Nephrologist we were to see the following week. She had received the results from Pediatrician and she wanted us to go and get some more tests done on Friday itself, not the next day or next week, that day itself. We took Sunchit at lunch time to get those additional tests done and came back home. Due to some clerical mistake his blood was drawn twice but then we got home in about an hour. After finishing his day, Savita took Sunchit to play cricket with his friends, a regular thing since fall last year. While he was playing Savita got a call from the Nephrologists office, they asked us to take him right away to ER. They said he needs a check up right away, we were confused and scared at this time, nothing was wrong with Sunchit he looked and felt normal. Regardless, after he took his shower, we told him we were going to ER. He was not happy, but reluctantly agreed to go with us. After checking in, they put him on continuous monitoring, his blood pressure was high, blood tests, sonograms were done. They gave him a med for his BP which got under control within half an hour, but his potassium level was very low. So they asked us to get into the hospital. Right about 3 AM we entered the downtown hospital and got admitted and slept for 3 hours before waking up the next day.
April 3rd: We met the on-call Nephrologist Dr. S for the first time, he came in and told us there were a lot of confusing things, but he would let us go home if his Potassium gets back into normal range with supplements. They kept doing blood tests and monitoring his BP, which was now normal. We went home the next day, but Dr. S asked us to do his tests every two weeks. May 18th: We had been doing his blood tests every two weeks and his creatinine was going up, eventually, they switch to weekly. This was the day when Sunchit was very tired, he was finishing school, his summer vacation was to start the following week. Savita called Dr. S and told him that he is not feeling great, he said get into the hospital so he can be monitored and investigated correctly. We got into the hospital that evening and they started his monitoring, he seemed to be doing fine and was in good spirits. His MRI which was scheduled for the following week was pulled into the next day. That would be the first day we would hear about Nephronophthisis.
May 19th 2021 – The day we heard the news: “I know exactly what Sunchit has, I will tell you about it, I just need a last confirmation” said Dr. S with complete confidence in the recovery room where Sunchit was waking up from a general anesthesia at Children’s Medical Center of Dallas. He had just gone through an MRI of his abdomen. Myself and Savita felt apprehensive and a bit confused. As Sunchit’s vitals were normal and he started talking to us after having a bit of ice water, the nurse entered the room and said we will roll him into his room where we were situated on the 5th floor, nephrology department.
We walked back to the room and anxiously waited for doctor to come, in about half an hour Dr. S walked to our room along with some of the on call and intern doctors. One of the intern doctor found a conference room on the same floor, with a projector. All of us settled down and then Dr. S declared to us that our son has ’Nephronophthisis‘. All his symptoms so far (very few) like him liking to drink excessive water, urinating a lot and very recently, feeling tired, combined with his genetic report and the MRI confirmed this diagnosis. It eventually took me a month to say the word Nephronophtisis clearly and without hesitation, but at that time, I did not know what this was and what Dr. S was saying. He then explained it to us in simpler terms, our 13 year old’s kidneys had failed by 80-85% (yes, he was still a month away from his 14th birthday), they were scarred and had a lot of small cysts. This meant only one thing, he had what is called “End Stage Renal Disease“. This condition is imbibed by a gene (NPHP4) that Sunchit has inherited from both of us (1 in 922,000 probability in USA).