November 28, 2009 – February 1, 2017
Diagnosed: September 4, 2014
Written by Anya’s family
October 4, 2014.
Exactly one month since the diagnosis!! I picked up the “just arrived” Olaf toy so I could surprise Anya at her doc visit that day. One eye blinking followed by slightly unstable walking were the issues. I was least worried about everything until at the end of the visit Anya’s pediatrician seemed visibly worried. She then said those 2 words that shocked me to death: “Brain Tumor” suspected.
We were asked to get an MRI right away, and we rushed to Stanford immediately. A 10-hour wait followed (with no food or water to be consumed 11 hours before an MRI). Meanwhile, Anya’s symptoms were checked by 15 different people (one junior to the next apparently), and we had to explain “everything” from day one. Anya had to repeat all those tests they performed as many times. They were not doing it to give us any answers but for their own study!! We were staring at their faces like fools expecting some kind of an answer, only to be told someone more senior is going to visit in a few minutes and look at Anya.
Finally, she went for the MRI at 10:00 pm, and the attending nurse that night told us a quick glance at the scans confirmed there was a mass, but they were not done yet. She was then admitted to the ICU. It was heartbreaking to see a healthy, happy kid going through a sudden change in her life. She had been poked several times in various spots of her body. She simply hates the IVs, and there were 2 of them hanging out. The monitor kept beeping every 5 seconds, reminding us we were in the ICU. It was torturous to look at. I wish that was all she had to go through.
At 11:00 am the next morning, neuro-oncologists took us out and tried easing us in, but I sensed something was surely wrong. I went directly to the ultimate question: “How long do we have?” They replied, 9-12 months. I was at least going for 5 years, but this was least expected. Just what do you do when extremely qualified doctors tell you that?? Prior to that, I thought the doctors here could fix everything!! It cannot get worse than this.. a tumor cannot get worse than this!!
The way I looked at my princess had changed forever. I always knew being born perfect is a miracle and to live long is another. I was not aware that something so terrible and incurable ever existed. I felt everything was fixable!! I am sure this is too, but why has it taken 50 years and yet the doctors have no clue? I learned Neil Armstrong’s kid was diagnosed with this in 1962, and here we are today with the exact same prognosis!!
July 11, 2015 UPDATE
Anya is keeping relatively well these days. She is doing chemo as long as she has absolutely zero side effects. Anytime it gets in the way of her quality of life she will be off chemo. We’re treating chemo as a supplement to all her alternate treatments rather than it being the other way around. She completed 10 months post diagnosis, as of June 3, 2014! The tumor has been stable, and some of these are slow-growing ones… It’s hard to say anything as it’s still very early and within the time frame docs gave her. There are some kids who’ve done 3-4 years, and there are 1 or 2 who’ve beaten all the odds and are 10 years beyond diagnosis! We have been managing to distance ourselves from negative thoughts, and everything is still driven by her well being! A lot of kids who were fighting when Anya was diagnosed have passed on (50+ kids), and I could only feel Anya is perhaps a little lucky among the unluckiest! We are leading a normal life for now, if I can call 50 pills a day for a 5 year old normal.
Thanks everyone for having Anya and us in your thoughts. Go team Anya!
September 3, 2015 UPDATE
Know what day it is today? It’s the one year anniversary of the worst day of our lives!! It’s our first Scaniversary day!! Anya’s pediatrician said those two words at this exact same time of the day last year that changed our lives forever! Later in the day we find out it’s not just a tumor but brain cancer.. .It’s not just brain cancer but DIPG! The worst of them all!
I can’t believe how quickly this year has gone by. Last quarter of 2014 was perhaps the most stressful time for us with the diagnosis, then radiation, then choosing a clinical trial that was less harmful (as none of them are really beneficial), the travel and those several meltdowns while driving, sleeping, eating and even breathing!! However, as Anya recovered, our lives got a renewal.
Her well being is the reason we can afford a smile today and we are still unsure how long that will last. I have seen several tiny, cute little kids pass on leaving their parents shattered forever.. There have been so so many that somewhere along the way I lost my ability to emote.. It is perhaps a sign of surrender or rather acceptance of reality. Illnesses have been around forever and I can’t quite complain about the situation that we are in today. It happens to people and we are people.. we ALL ARE PEOPLE!! It could happen to any of us.. irrespective of how many precautions one may take.
As I write this post today, I recall reading other tragic stories online and thinking to myself how horrific their lives could be while I sit here doing some online shopping.. I did contribute to some good causes from time to time but that was it. Always knew I could do more but never did.. And, no amount of doing is really enough as there’s always a newly diagnosed around somewhere...if you can personally make a difference to any struggling family that would be the best thing to do.. Money towards DIPG or other pediatric cancer funding orgs would be my second preference.. I always wonder just how much do they need to get close to a cure? I am sure several people have made several donations so far to make for a substantial overall sum and yet we are nowhere near making any kind of meaningful progress! And, they’d think 4% of overall cancer funds towards pediatric cancer is enough!
YEAR 2 begins…
Hoping for an event free year! Shrinkage and dying tumor events are totally welcome though!
Sadly, on February 1st, 2017 sweet Anya passed away after a tough but courageous fight. She was 7 years old. We will never forget the amazing Anya and her heart of gold.