Zoey’s “Big Girl” school

I remember vividly. The date was September 6th 2012. It was supposed to be Zoey’s first day of kindergarten at her “big girl” school a.k.a Town Center Elementary. She was excited about going on that school bus for the very first time. Her dad and I were going to follow the bus and reach the school to make sure our sweet princess was doing fine. However that never happened. Instead of enjoying her first day of school like the rest of her friends, she was taken to Robert-Wood Johnson (hospital ) to meet with her pediatric oncologist and their awesome staff. She was taken to be measured for her radiation mask. Yes, thanks to DIPG, that’s how she spent her first day of kindergarten.
After her diagnosis we kept her at home , for a couple of reasons. One, we wanted as much time as we could get with her. And two, we weren’t sure how she would respond to radiation. So it was safer for her to be at home. We told her she was so smart and intelligent, that she needn’t go to kindergarten, but would go to first-grade directly. That’s another lie I told her (though at the time I truly believed she would be fine in a few months. So technically it wasn’t a lie.) At the time she seemed happy about it. She got pampered at home with her grandparents and us, meeting her every demand 🙂 my princess….She ruled our hearts.
Our school district was awesome and they offered to send a home-instruction teacher to work with her, a few days week. I am so grateful that Miss Julia ( the home instruction teacher ) came over, played with her and gave Zoey some semblance of normalcy in the midst of all that chaos.
Sometime in October, Zoey decided she wanted to visit her school. She had completed a few weeks of radiation and it seemed to have a positive effect on her health(another miracle I guess, since the tumor was growing through radiation). So I took her to her kindergarten classroom. Zoey met her kindergarten friends for the very first time. She spent some time reading a book on her teacher’s (Ms Cloer) lap. I remember clearly she even asked for some homework to take back home :):). She promised me that she would return to the school as soon as she got rid of that boo-boo. Unfortunately we never got to see that day. That was her first, last and only day in kindergarten. However I am thankful to Ms Cloer for giving me this memory to cherish for the rest of my life.
So fast forward to September 2013. Soon after Zoey’s passing the school counselor, Ms Trottmam, reached out to us offering condolence and support. I connected with her and we discussed Zoey, DIPG and the lack of awareness and funding for this dreaded disease.
The school staff and PTA were completely on-board and wanted to do something to raise awareness for DIPG, in Zoey’s honor. We decided to do a coin-drive fundraiser in February this year. The response to the coin-drive was just overwhelming and completely exceeded all our expectations. The children ( mostly aged between 4 and 10) , their parents, families and staff, all worked together and raised nearly 3000 dollars in Zoey’s honor. The funds raised will benefit DIPG research at the Lucile-Packard foundation of children’s health at Stanford. The love, compassion and humanity shown by this small community for a little girl, whom they never met or heard of before, has blown me away. I am truly humbled and feel blessed to live in such a giving community.
I am sure my baby girl is smiling down and is feeling so proud of her “big girl” school.
A huge heart-felt hug and THANK YOU to everyone at Town Center Elementary. You are awesome and we love you.

Suman Ganesh
(Zoey’s mom forever)

The awesome staff at Town Center Elementary School.

Bags and bags of coins collected by the kids at Town Center Elementary:



Profound conversations with my 5 year old baby girl.

As a recently bereaved mom, one of my fears is that, as the years go by, the memories of my baby girl may begin to fade. I hope to remember everything about my baby ….her likes , her dislikes, her cute mannerisms, her know-it-all attitude, her saying “I love you too mom” ….just to name a few things. But I know it’s only a matter of time. New memories will take the place of old ones and the old ones will tend to fade. So writing has become very important for me. If it’s all written down somewhere with all the nitty-gritty details, I know I can read it for years to come and know that her memories are intact.

These days I find myself trying to recollect our conversations with her during those last 12 weeks of her life.Yes those memories tend to bring tears to my eyes …….However I have a ton of happy memories of her from the time.
Unlike most DIPG patients, my Zoey was able to speak and express herself very well, up until the night she slipped into a coma. We were so blessed to hear her sweet voice till the end. Following is my recollection of some conversations with her during those last few weeks. These left a profound and ever-lasting effect on everyone at home and I am sure we will talk about it for years to come.

1. Mommy, why did I get this boo-boo

Zoey was only 5 years old when she was diagnosed with the worst pediatric brain cancer there is ( DIPG). We couldn’t tell her she had cancer and that she was not going to live very long ….also because I never believed that was the case. But we had to tell her something that made some sense to her. So we told her she had a boo-boo in her brain that was causing her to see double. We told her we will take her to the hospital everyday for her super Zoey ( radiation) sessions and that boo-boo had no chance against our super Zoey. I think she bought it in the beginning. Then in a week she realized that this wasn’t the kind of boo-boo that would go away in a day or two. She asked me a question that broke my heart into a million pieces. She asked why she got the this boo-boo? I was so angry at the time, and was asking this question several times a day …why my beautiful, compassionate and full-of-life child ? How was I going to answer her ?
Well I composed myself and said that she was very special and God ( her little Krishna ) was going to see her through it. I also lied to her saying that I have the same brain boo-boo and I see triple ( and not double) most times. She smiled at me and gave me a hug. I think she felt relieved that she wasn’t alone. I can’t imagine what else was going on in her tiny brain. I can only hope that we did everything possible to alleviate her fears and apprehensions.

2. Soccer ball a.k.a Anay will be born on November 1.

I believe sometime in October out of the blue she mentioned she was eager to play with soccer ball when he decided to make his appearance. Well I remember saying that I hope he is not in a hurry and anytime after November 8 (37 weeks gestation) would be great. To that my baby replied ” no mom, he will come out after Halloween on November 1″. Well it seems like the two of them had it all planned from the beginning…he was the first baby at the hospital for the month of November ( born on November 1). We were glad that he at least waited for hurricane Sandy to be over. So her prediction came true…. Who knew? Coincidence or something else … I wonder.

3.Bring it on, bring it on, bring down you boo-boo

There was a Hindi Bollywood movie song that Zoey and I would love to sing and dance to. She quickly replaced the chorus lines with the words “bring down you boo-boo”. After her diagnosis we decided to not send her to school, and instead spend every minute we got with her. So she and I would spend countless hours on the family-room couch playing scrabble, reading, watching movies, singing various songs, but this one song stuck till the end. A few days before she passed away she called all of us (her maternal and paternal grandparents, her aunt and uncle, Karthik and I ) to our room. She insisted everyone sit in a circle and sing this song together. She ensured everyone of us sang the song over and over again. If she caught my mom crying …she would shout out “Domi is not singing …please sing Domi..”. Such was her undying spirit. I think it was her telling us that even though her fight was coming to end, we should still continue our war on childhood cancer.

4. Anay, when you grow up let’s sing, dance and play all we want.

Oh , my Zoey was just the best big sister in the whole wide world. She loved Anay from the minute we told her about him about 6 months into the pregnancy. She named him candy-cane in the beginning, and then she named him soccer-ball because of how round my tummy looked as my pregnancy progressed. In her last week she held him on her lap, and told us “I love Anay too much.” Then she looked at him and promised him that when he grows up, they would sing, dance and play together. I am grateful that she shared this with us and we had the insight to actually record it. Attached here is a picture of her and her soccer ball a few days before she passed.

5. Mom, I want to go back into your tummy.
One evening out of the blue, she expressed her interest to go back into my tummy. I was surprised ! I told her it was very dark inside and there wasn’t enough room to even stretch properly. But she insisted again, how she would go back if she could. I wonder what was her thought process at the time ? If I could, I would my baby girl ….anything to protect you and keep you safe.

6. Krishna is calling me ……can I go dad?
Most of you that have been following this blog, are already aware of Zoey’s devotion and spiritual inclination/obsession with little Krishna. The last week of Zoey’s life, she and her dad were inseparable. She would spend hours with him either on our bed or on the couch. Her dad was her best buddy. “Go east go west, my daddy is the best” and I have to agree with you, Zoey, your daddy is the best. He is the best daddy there ever can be. So sometime during that last week, she got up from sleep one morning, smiling cheek-to-cheek. Her dad was right next to her when she woke up. When asked about her dream, she said she had a secret to share with her daddy. But she insisted her secret not be shared with me, her mama. Then she told Karthik, how little Krishna came in her dream asked her to join him to steal butter. (For those not familiar with Krishna stories, he is supposed to have been a very playful and naughty little boy who would just loved butter). Her daddy being the best daddy that he is, told her to go and have fun with her little friend above. I believe this was my little girl preparing us for what was to come in a few days. She knew her mom wouldn’t be able to handle this conversation, so she chose her Dada to share her last secret. I am amazed at how death manifested itself for her. I have read that most people are scared to leave this physical world, but not my girl, she was excited to go play in the heavens above. We were truly blessed to have such a pious soul amongst us. Again I consider this the ultimate blessing she gave us, as her last parting gift.

Love you my Zozo…. As usual to the moon and back, to the moon and back.
Your loving mama

Zoey and her proud dad.