The missing name

On the outside we appear like that textbook family of four. A dad, a mom and two active toddlers. We do all activities any normal family would do. We wake up each morning, have breakfast, go to work , cook and clean, feed our kids , send them to school , go to the park when the weather is good, we shop, and resolve tantrums like any other regular family. To an outsider we probably look content and happy. They aren’t aware of our first-born child, who has turned into this beautiful memory residing only in our hearts. They don’t see the gut-wrenching heart-ache and grief that Zoey’s dad and I experience most days. They don’t see the tears hidden behind those smiles. Mostly they don’t see the struggle. The struggle about when to include our dear Zoey and when to leave her out. Is it OK to bring up your deceased child in a conversation with a neighbor you hardly know ? Is it OK to tell someone that I’ve done this before and I know exactly what it means to have a little girl. This is one of the reasons I cringe at the thought of meeting  people that don’t know Zoey and making new friends. I hesitate to reach out. But we live in a society and I have two little boys. I can’t live on an island …. I so wish I could.

So this weekend we got invited to a birthday party in our neighborhood. We have met this family a couple of times, mostly outside playing in the park. We don’t know each other very well and like us, they are also new to the community. So when the invitation came, I felt nice that this sweet neighbor thought to include us in her child’s celebration. I asked Anay if he wanted to go and he seemed excited. So we bought a birthday gift and I asked Anay to write in the birthday card. He wrote his name and his brother’s name, and looked at me and asked “Can I write Zoey’s name ?” My brain just froze. I didn’t know what to tell him. Karthik and I have always talked about Zoey very openly with the boys. The boys include her in everything. They include her in the stories that they spin and narrate. They include her in the pictures they draw. Zoey’s name is always included in cards and gifts sent to our family. So naturally according to my little boy’s logic , why wouldn’t we include her name on this birthday card ? I just wish we adults thought and acted with equal innocence. I didn’t think through, and I completely regret what I did next. I told him he can write Zoey’s name on his favorite Doodle-pro instead of this card. He looked confused but didn’t question my decision, thankfully. We were getting late and so we left for the party.

Later after returning home, I thought about what happened. I felt so guilty ……. If my boy wanted to include his sister in the card why did I stop him. What was I thinking? What was I trying to circumvent ? Yes I didn’t want to get into an awkward conversation about a departed child at a happy kids party. I didn’t want to face that look of dread when they hear about what happened to my Zoey for the very first time. But frankly they probably wouldn’t even notice her name ….I felt miserable for betraying my only baby girl.

I guess I will handle it better next time. I’m learning as well. I’m learning to find a balance in-spite of this struggle. However in the future, if Anay or Hari want to include their lovely Akka in anything I’m not going to stop them. I just hope Anay would continue to include her and this one incident wouldn’t stop him. I sure hope not.

Zoey, I’m sorry my baby girl. For the first time I felt I betrayed you. I’m sorry …. it’s been over 4 years since you left , but your mom is still learning to survive in this world, without you.
Love you to moon and back (as always)

Family of five

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A girl and two boys

It’s 2016 already and I haven’t written in forever. Time seems to be speeding by and I seem to get caught up in the day-to-day activities revolving around these boys. Yes this life with two active toddlers is definitely something, I wasn’t prepared for. It’s constant chaos right from the time they wake up, to their meals, to school drop offs, potty training, playtime, nap time …. one after the other all through the day. Most of time I have to remind myself to stop and enjoy the little moments of joy, hidden in between. And yes there are tons of those moments. These two boys are just what this bereaved mom probably needed to be mentally and physically busy…..

Today I am writing about something that happened over a month back. I was traveling down south for a family event at my maternal uncle’s house. I had left the boys (all three of them) back home and after much contemplation decided to go alone. I was looking forward to some quiet time, which has become a luxury these days. I arrived at the airport early to check-in, only to find my flight was cancelled. The only other flight that was going to that destination was leaving several hours later. So here I was at the airport with over 6 hours to kill … All by myself. I had wished for alone time …. Hadn’t I ?
However, being stuck at Bangalore international airport isn’t all that bad. You have free WiFi, tons of eateries and window shopping opportunities. After hanging out in the WiFi lounge for a while I decided to go and make myself comfortable at the departure gate. There were quite a few people waiting already and so it made sense to go early and get a place to sit comfortably. There I met this elderly lady who was clearly bored and was eager to have a conversation. After losing Zoey, I typically avoid random conversation. Something I stopped doing…. Just no enthusiasm to make small talk. I know that sounds snooty , but it isn’t. I just don’t have it in me anymore.
But I didn’t want to be rude to this elderly lady. We exchanged the usual “Are you from Bangalore?'” Then she asked the usual “Do you have any kids ?”. I said yes and didn’t bother to clarify further. Then she asked, “How many and how old are they?”. I was taken aback. It had been a while since anyone had asked me that question. Oh I found myself saying, “A girl and two boys. They are 8 , 3 and 1.5.” She was surprised, and complimented me on the fact that I didn’t look like a mom of three kids. As relentless as she was, she asked about their school and how they were adjusting to life in India. I again found myself saying “Oh my daughter is a doll, completely adjusted here and the boys are too young to care about where we live. They are happy anywhere we take them.”
That was that… I didn’t want to continue that conversation so got up on the pretext of charging my phone. I thought about what I had just done. When asked, I always maintain I have three kids. Most strangers leave it at that. However on that day a random stranger had gave me a glimpse of a life that would have been or rather should have been. How I wish I could see my Zoey as a bright, intelligent and confident 8-year-old. Maybe if she was here, she’d travel with me. Maybe she and I would have our girls-only trip somewhere. I’m sure she was right there smiling down on her mama fabricating these stories about her. I’m sure she accompanied me on that trip in her own special way.

I Miss her. Plain and simple. Miss her so much. Every minute of every hour, everyday I miss her. It’s like breathing …

Zoey and I in New York, for breakfast. Oct 2012

Zoey and I in New York, for breakfast. Oct 2012

Three years

Tomorrow is 25 November 2015. Three years back I experienced a parent’s worst nightmare. Three years back , on that Sunday after Thanksgiving, I lost my beautiful 5-year-old princess to brain cancer. Zoey took her last breath in her dad’s and my arms. She was calm, peaceful and from what she told us then, she was looking forward to stealing butter with her beloved Krishna. It’s unbelievable that it has been so long since her passing and also unbelievable how much has changed since then. But through all these changes the person that has been there for this family is her amazing dad. So on the third anniversary of her passing, with her dad’s permission :), I’d like to share an email Zoey’s dada sent to all her loved ones. Zoey, your dada has come such a long way since your left. Now you already know that, don’t you? You must be so proud of him. Love you to the moon and back baby girl. Moon and back.

Karthik’s email to Zoey’s loved ones:

Tomorrow it will be 3 years since Zoey’s passing. I can still feel her little body in my arms as soon as she came out of Suman and in the same vein I can also still feel the frail body reclining against my chest (because her back and neck were perpetually hurting with the tumor’s pressure) asking me if she had my permission to go and play with Krishna now. November 25th 2012 is also crystal clear in my mind as I pressed the button to cremate her physical remains.

Samsara by definition is a mixed bag and now 3 years later I can’t help but feel overwhelmed by gratitude for all that the Lord has given Suman and me and I wanted share those thoughts with you.

He gave Suman and me the most gorgeous little girl. The five and a half years with her were unquestionably the most beautiful years of my life and I would not trade them for anything. She was being ravaged by a tumor that could have shut down her automatic functions like swallowing, etc. but yet with Lord Krishna’s blessing that did not happen. Even with that acute pain my girl demonstrated a level of poise and equanimity that one can only aspire to achieve over numerous lifetimes. Lord Krishna in the Gita says “samathvam yoga uchyate – equanimity is yoga” and my girl exemplified samathvam…what an incredible blessing for her parents to be able to witness that equanimity and watch her eat ice-cream as her last meal on November 23rd.

Now 3 years later as I reflect on the changes in Suman and my life it is hard to not to be overwhelmed by how blessed we are. We have 2 adorable and extremely naughty little boys at home. This past year has been wonderful in terms of the time spent with family. Zoey’s DIPG fund will hit its original target of $100K tomorrow with over 350 donors. Suman’s Facebook page “Cure for Zoey” and comments on her blog continue to remind us of how compassionate we can be as humans. And then there’s all of you. Your love and support has been tremendous for us. You have been there for us over these last 3 years while giving us the space to find our own strength…and for that we are incredibly thankful and blessed.

The Bhagavad Gita is the ultimate vedantic text and gives us a roadmap for living our lives the right way – do your karma in a dharmic way, understand and appreciate your inherent immortality, and then finally realize that our individual atma (soul) is a microcosm of the paramatma…i.e. we are a microcosm of God and have all the qualities of godliness within us. We spend so much our lives complaining about things around us or finding faults with other people or whining about things we don’t have or just in general being unhappy about our material lives. Zoey stared death in the face with a smile and a desire for ice-cream. When I told her I was angry with God for giving her a boo boo in her head, she said I was missing the point – God didn’t give her the boo boo, he was taking it away. Let’s take a moment today, to put all our complaints and concerns on the shelf and without asking for anything more, just say thank you to God for all that we have been given. On that note, once again THANK YOU for everything.

Love,
Karthik

Zoey's last trip to Baskin Robbins for ice cream

Zoey’s last trip to baskin Robbins for ice cream

Zoey's parents now three years later.

Zoey’s parents ….three years later.

The permanence of change

This blog post isn’t about my Zoey. But it definitely is about a change that was triggered by her untimely demise. When you lose your first-born to a disease that has no known cause or no known cure and a 100 percent mortality rate, it gets you thinking about what you really want to do in life. It changes every aspect of your life. You die with your child and what’s left behind is a changed person forever. It’s like rebirth. You have to start from the beginning for your surviving loved ones. And you learn to reinvent yourself for them. So yes this blog post is about something I have thought about constantly for the last 14 years and never ever thought I’d be doing it without my baby girl by my side.

We are in the midst of a relocation. But this time we are relocating continents i.e. relocating back to the country of my birth. I still remember that evening in July 2000, as I walked out of immigration in Chicago arriving in the U.S for the very first time. I vaguely remember thinking, we will stay here for a few years and most likely return. Well those few years added up to be being nearly 15 years ( 14.5 to be precise ). Like every other immigrant from my country, the thought of returning back was always there in my mind. 14 plus years seem like a lifetime in itself. But not to me. It really doesn’t seem that long ago. I guess that’s good thing…..maybe. We have had the privilege to travel, see the world, explore places and truly enjoy what the country had to offer. Also during these years we have relocated within the U.S quite a few times. And I have no regrets about it as every relocation has been for the better, be a better career opportunity or a better school district or a larger home. So yes we are relocating once more, but this time it’s back to India. It’s something we have wanted to do for a very long time, and the only way to figure if we can do it, is to actually try it.

I’ve been told relocating back to India after 14 years will be an eye opener of many sorts. The country has changed immensely in these years and I may find it tough to adjust back to life in India. Well I think to myself if I could survive losing my daughter, does it really matter what my postal address is? Does it matter that it isn’t in the country she was born in and the only country that has her memories. Actually it doesn’t. Because I’ve come to realize that she and her memories are always with me, no matter where I live on this earth. If I can survive her loss, I should be able to survive any change in life. Again I could be wrong, but am hoping I’m not.

Someone whom I met recently at the kid’s park here in India asked me “Oh so you are back for good?”. It got me thinking, what does “for good” mean anymore ? It implies some sort of permanence. Not for a person who has lost her first-born. Aren’t your children supposed to outlast you. Aren’t they “permanent” as long as you live. So no I’m not here for good. Because I don’t know what that means. I politely answered “Yes we are here for now.” So yes for now our postal address has changed. Will not say it’s for good, because the concept of permanence doesn’t exist for me. The only thing that is true and constant in my life, is the permanence of change.

Here’s to hoping this change in our lives is for the better, and hoping we can embrace its challenges with much ease. Here’s to hoping we can continue to bring awareness to pediatric cancers like DIPG, irrespective of our geographic location. Here’s to hoping Zoey’s brothers love and thrive in India, just the way we did in our childhood. Yes I wish my baby girl was still by my side. But that’s not my destiny. Oh I know she would enjoy living in India immensely. She did get to visit it a couple of times during her short stay with us. I am sure my baby girl is all aware of this transition and is helping us in her own special way. I feel her presence and see the signs she sends wherever we go. … She is amazing, now need I say that. Anyhow my baby girl, love you to the moon and back. Your brother calls it “the moony” these days ( just like dada called you his “moony”). We send flying kisses to you and the moon every evening as we return from the park. Now you already know that, don’t you ??

Cutie in red
Your mama forever

What do you do with ALL the pink.

Zoey loved the colors pink, purple and red. So when she passed away so suddenly ( though we knew the nature of tumor, but it was still all so sudden), we were left with a wardrobe filled with all her beautiful clothes, tutus, frills and fancies handpicked by me, her dad and in some instances Zoey herself. Yes she had very specific likes and dislikes and this child was picking her clothes every morning from the time she was about 2 years old.

After Zoey’s demise we kept all her toys and books ( about 200 books) for her baby brother, who was just 25 days old at the time. However all her clothes …what does one do with all that pink ? We donated quite of a few of them to charity hoping some girl Zoey’s age would use it and be happy. We kept a few of her special items like her baby onesies , her blankets , her ballet tutus, special occasion clothes , slippers etc…… We just couldn’t part with them. However soon I realized that we had kept them locked in a trunk too long and if we did not do anything about it it would stay in there forever. So we decided to use most of the remaining clothes to make 2 quilts, one for her dada and the other for me. Yes 2 beautiful quilts made by a local quilter here with all her special clothes.
While absolutely nothing will bring back my Zoey, having all her special items in one place , and being able to snuggle in it whenever we want, helps us keep her memories alive.

Quilt for dada

Quilt for dada

Quilt for mama

Quilt for mama

I also love the fact that karthik’s quilt is pinker than mine. Daddy’s girl alright 🙂

Zoey, I hope you loved these quilts as much as your dada and I. Love you to the moon and back baby girl.

Your mama

Another birthday without the birthday girl

I remember the night from 7 years ago like it was yesterday. The night that changed my life forever. That Monday night when Zoey decided to make her appearance, with her head full of thick black hair and sparkling big brown eyes. One look at her and I was in love like never before.

Had cancer not intervened, Zoey would have been 7 years old today. She would have just finished first grade and would have been looking forward to a summer filled with fun and laughter. She would have insisted on being girly and geeky at the time.She would have insisted on some fun themed birthday party with her school friends. She would have picked her own party favors and would have hand written all the thank you notes herself. She would have insisted on only eating the frosting of the cake, while leaving the rest of the cake for me or her Dada to finish later. Karthik and I would have taken her out for her celebratory birthday dinner and she would have ordered her favorite buttered penne pasta, especially mentioning the cheese on the side. The dinner would have been followed by a trip to her favorite ice cream shop. She would have had so much fun with her baby brother Anay. Anay would have been her tail running after her, calling her “Zo Akka”. Every morning he wakes up and blows flying kisses to his one and only one “Zo Akka”.

God knows what else she would have done in the last 18 months that she hasn’t been with us. God only knows what kind of experiences and opportunities we missed since her life was cut short so cruelly. Thanks to cancer she will forever be 5 years old.

However today is not about cancer. I will not focus on the monster that took her away. I will not focus on the poor funding for childhood cancer or request you to donate towards pediatric cancer research. I will not focus on the fact that 7 kids die of cancer everyday. Instead I will cherish the memories I have of her. I’ll reflect on all the birthdays we were blessed to have her with us. I’ll eat her favorite candy, I’ll lick the frosting on the cake, and talk about her to her baby brothers, Anay and Hari. Karthik and I are also going to honor her by distributing her favorite books and cupcakes at the pediatric oncology floor where she spent the last few days of her short life.

Zoey, my baby, I wish you were here and I wish you never had to leave. I wish I could celebrate all your birthdays all over again… I wish I never had to write this blog post. .. Happy birthday my love. Love you and miss you as always.
Your mom forever

Zoey on her birthday over the years:
Zoey the day she was born:
Zoey on the day she was born

Zoey on her first birthday:
1st birthday

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Zoey on her 2nd birthday:
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Zoey on her 3rd birthday:
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Zoey on her 4th birthday: with her very own bike.
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Zoey on her 5th birthday: ( last one we were blessed with)
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New Year’s Eve 2013

We have survived over 13 months without our sweet Zoey. Karthik and I have survived her 6th birthday, her brother’s first birthday, our first Diwali without her, our first Thanksgiving without her, two Christmases and including tonight, two New Years without her. Yes life goes on and we go through it’s motions everyday missing our sweet baby with all our heart. So tonight we welcome 2014, hoping and trying to keep the faith, braced for whatever life has to offer in the new year.
As we enter 2014, I’d like to reflect on the lessons I learnt from my baby girl’s sweet but extremely short life. Moreover these are lessons for my son as he lives his life without his Zoey Akka’s physical presence by his side. ( I say her physical presence because I am convinced without any doubt, that her spirit is always, always and ALWAYS by his side.)

1. Have FAITH ( This one is a struggle for me everyday. But I am trying my best to keep my faith going)
Have faith in yourself and in others. Faith will carry you when reason fails you. Find something to have faith in, it may be in your GOD or it may the goodness and kindness in people around you. But always keep that faith.

2. Enjoy the little things in life
I have learnt this entirely from my baby girl. Being a busy working parent and always juggling between several chores, we sometimes forget to stop, take a moment and just be with our kids. We forget to enjoy the little things. We are always waiting for the next activity, the next chore that is … We forget the joy of watching a 5-year-old snuggle and talk to her soft toy in her sleep with wide smile on her face, or the joy of watching a 1-year-old play with his toy again and again as if he were seeing it for the very first time. I remember my Zoey telling me to slow down, how I was not to hurry her royal highness 🙂 . It’s these little moments that matter most in life.

3. Family is the most important thing in life.
Your parents will always be with you no matter what you do in life. Your siblings have grown up with you and know you like no one else would ever know. Time may create distances in your relationship but at the end of the day, you can always , always count on them. For Zoey till the end, it was about her Dada, her Mama, her baby brother ( also called as soccer ball) , her Ajja and Domi (my parents) , her Thatha and Pita (karthik’s parents), her aunts, uncles and cousins. She insisted that each and every one come and sit with her, play with her and spend time with her during her last week here on earth.

4. Try not to be bitter ( learn to let go)
(This one is really hard for me. I struggle with it everyday , sometimes several times a day). Learn to let go off your expectations from others around you. Try not to assume and judge someone for their behavior. You don’t know what the other person is going through at the time.

5. Embrace life and death.
After seeing your child take her last breath in your arms, you have new-found appreciation for both life and death. You realize death is inevitable and there is no reason to fear or worry about it. In fact after the initial shock and despair wears off, you begin to embrace death in a new way. I will always be in awe of my baby girl as she embraced her final journey to eternity with such poise and grace. I can only strive to be half as graceful as she was when it’s my time to go. I know my girl braved to go someplace all by herself, fully aware there her Mama and Dada wouldn’t be able to join her. If a 5-year-old could embrace life and death in its entirety, why can’t we ?

The next time I post, it will be 2014. I’d like to thank everyone that joined our fight against childhood cancer and hope that in 2014, we will reach our goal for Zoey’s DIPG Research Fund at Stanford. I’d also like to thank everyone for reading about my Zoey’s life and following my journey as her grieving mom. I am truly honored and touched. A BIG HEARTFELT THANK YOU to all of you.
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That trip to the grocery store

Zoey and I loved shopping for groceries. I’d pick her up from daycare and head straight to Whole Foods next door. We would spend time exploring the various aisles selecting fresh fruits, veggies etc. and then head straight to the gelato bar. Here Zoey would relish her orange and vanilla gelato and I would get a cup of coffee to go.

So when she passed away last year I couldn’t bring myself to go grocery shopping at Whole Foods. We found another local grocery store near our place and started going there for most things we needed. We did this for nearly 6 months. I did miss the freshness of vegetables and fruits that were offered at Whole Foods, but really, who cared about what food we ate during those days. My son was just 25 days old when his sister passed away and all he needed for nutrition was mothers milk or formula.
But now he is year old and has started having table food. So a few months back, I did feel the need to venture out of my comfort zone. I typically pick a time when I know it will not be crowded , so the chance of meeting someone I know out there is minimal. I typically make it quick and just stick to my list of items to be bought. I don’t explore the store like I used to with my Zoey.
So the other day I had just finished shopping and was heading straight to checkout. I noticed someone who’s son went to same school as Zoey. As luck would have it, she was right behind me in the checkout line. She saw Anay and congratulated me on his arrival. I suppose she did not know about Zoey, so she innocently asked me which school my girl was going to. I had dreaded this question and was trying to answer without breaking down. I told her and saw her go pale with shock. She did say she was so sorry and how life was so unpredictable. Then she went on to add that how life seems unfair and how her older child was diagnosed with type 1 diabetes at age 3. She probably did not remember it, but I already knew this about her son. I really don’t know why she brought that up with me. I am not sure how she could compare her child’s health condition to me losing my child permanently. Maybe she was so shocked that she did not what else to say to me ? Anyhow ….I tried to smile and look straight ahead to pay for my stuff. I know that seeing your child suffer with juvenile diabetes is very hard for a parent. However I still wonder why she told me that again ? There have several times in the past 11 months, when I have met people who just don’t know what to say to me when they meet me.

This conversation with her, prompted me to write this post. I typically avoid writing about my negative experiences here because I want this blog to reflect positive attitude and hope that my daughter had till the end. But today I want to take a moment to jot down some dos and don’ts when communicating with a recently bereaved parent. I truly believe that people just don’t know how to deal with someone who has recently lost their child.

I have noticed that people don’t want to mention your child’s name during a conversation. I guess they feel they are protecting you. But most bereaved moms will tell you how they want to hear their child’s name over and over again. Because every time someone says her or his name, it’s like sweet music to our ears. Yes there is a chance we may cry , and crying is the new normal for us. I want to hear Zoey’s name every possible chance I get. If you have a special memory of the child, mention it to the us. If you happen to remember the child’s birthday, send a card or a thoughtful email to the parent. It will only make it so much more special to know that someone else has acknowledged your child’s life.

Do not compare the child’s condition with someone you know who has cancer or some other health condition. Because each cancer is different and especially with pediatric cancer, one is never sure of how a child responds to treatment. Some kids may respond favorably while others may not have that luck.

If you don’t know what to say, just hug. Because sometimes a hug is all it takes. There is typically nothing much left to say to a parent that has lost their child. A hug says you care and you are there for them.

I am going to end this blog post with something positive that happened recently at a good friend’s place. She had invited us for Navratri celebrations ( navratri is a indian festival) and my husband and I were dreading meeting other people there. Nevertheless we went and did have a decent time. She and her husband went out of their way to make us comfortable.
At the end when we were about to leave, she was handing out little favor bags for all the little kids that had come there. I was so surprised to see one for Zoey along with the one for Anay. She truly made my day and if you are reading this, you know who you are. Thank you and always know that we will remember that gesture forever. In the last 11 months a lot of people seemed to have walked out of our life. I am not complaining and I truly have no resentment towards them. It’s not easy to be around us, bereaved parents. I did not know a bereaved parent till I became one last year, so I completely get it.
However my daughter taught me to always look at the positive side of things and so today I will. I am thankful for the few friends and family that have insisted on staying in our lives. I will be thankful for all those complete strangers, acquaintances or long-lost school friends that have constantly checked in with us to see how we are doing. I sincerely thank all of you for your unconditional and unwavering love and support, without which we wouldn’t have made it through this year.

Zoey’s mom forever
Suman

My baby and me

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September: Childhood Cancer Awareness Month

The month of September is here. For most families, September is all about sending their kids back to school, the end of summer and start of a new academic year. It’s about getting back to a routine that will probably last 10 months till it is summer again. It’s about getting the kids ready for school in the mornings, soccer practice after school or ballet or music lessons in the evenings.

But for families affected by pediatric cancer September is known to be the Childhood Cancer Awareness month. What does the term childhood cancer awareness mean to these families? Unfortunately I know exactly what it means….it’s been a year now and I will be aware of it for the rest of my life.

Until last September, I never gave pediatric cancer a second thought. Yes I was aware of pediatric cancer but that awareness seldom resulted in any tangible action…maybe because it did not affect me and my family directly. However all that changed completely on September 1 2012 , when our beautiful 5 year old Zoey was diagnosed with a rare but aggressive brain cancer called Diffuse Intrinsic Pontine Glioma (DIPG).

I still remember that day very clearly. Zoey had an MRI around 3 pm on that Saturday, and we had been waiting for the results to come in. She had been totally normal apart from the double vision and a bit of clumsiness when walking. These symptoms had manifested themselves quite suddenly in a matter of weeks and so we had demanded an MRI at her pediatrician’s office the previous day. The pediatric neuro-oncologist came to see us around 6 pm that evening. He took us to small room and made us take a seat, especially since I was 28 weeks pregnant with our son. He then showed us our daughter’s MRI pictures and told us the worst possible news that any parent could receive. I couldn’t look at the pictures at the time. We were told she has a brain tumor called DIPG and she had about 3 to 6 months without radiation and about 6 to 9 months with radiation. Surgery was out of question and chemo was not known to work on this type of aggressive brain cancer. His words loud and clear ‘take her home and enjoy the remaining time with her’. I couldn’t believe my ears. I was hoping that he would somehow say it was a mistake and he was seeing someone else’s MRI report. But that did not happen. We went back to the hospital room where Zoey was busy chatting away with her grandparents and the nurse. I remember thinking, how could she be so sick and we never knew a thing before. She was a normal 5 year old who was excited about starting kindergarten the following week. How could she have a tumor in her brain?

DIPG has a zero percent survival rate. Yes ZERO. It has no known cause and definitely has no cure. And it has been like this for over 50 years. About 200 to 300 children get diagnosed in the US every year and almost all of them pass away anywhere between 2 weeks to 12 months from diagnosis. The reason it has no cure today is primarily due to lack of funding needed for the research. Only 4 percent of total cancer funding goes to pediatric cancer…out of which DIPG gets next to nothing. Pharmaceutical companies do not invest in the development of drugs and research for cancers like DIPG. Why? Because it just isn’t that profitable as compared to investing in drugs for cancers in adults. The numbers don’t make sense to them.

Irrespective of the month of the year, yes, I am well aware of pediatric cancer. I am aware that our girl passed away in our arms, 12 weeks after diagnosis because we couldn’t offer her any treatment. I am aware of the finite number of videos and pictures of my sweet baby girl that I will be watching over and over again, for the rest of my life. I am aware of the sadness and grief that completely takes you over almost every day and sometimes several times a day. I am aware that Zoey’s baby brother will never know his sister that way we did. He will hear about her and we will show him the videos of her singing to him, but it will never ever be the same. So I am well AWARE and hope no other parent has to go through the despair we did last year.

Since September is here and we are talking about pediatric cancer awareness, I urge you to consider doing something more for these little kids. Maybe by making a monetary donation for cancer research/treatment, or palliative care, or by participating in a race…or by sending a card or gift to a child suffering from cancer. Ask these families how you can help. You will be amazed at how your little gesture and show of support will help them survive the nightmare that they have been forced to go through.

Lastly, if you haven’t done it already, please consider giving to DIPG research at Stanford (Zoey’s DIPG research fund) :

https://my.supportlpch.org/fundraise?fcid=448147

Here is a picture of my Zoey just before we became AWARE of pediatric cancer :

Zoey with her new camera at the aquarium

Link to Zoey’s dad’s interview about DIPG.

Pediatric Cancer Awareness

Why is so little being done for childhood cancer ?

On September 1 2012 our world came to a grinding halt. We were told that our beautiful, ever so happy and healthy looking girl had a massive brain tumor in the worst possible location. Because it was embedded right in the centre of her brain stem (pons) we couldn’t go in and take it out. It could cause more harm or even permanent coma or death and no neurosurgeon in his right mind, would be willing to try to remove it.

Just like that our entire world turned upside down. Before that day, I never gave pediatric cancer a second thought. Yes I knew it happens to children, I knew of leukemia happening to children, I knew of a few successful stories of kids that beat leukemia, but was not aware of any child that had died of cancer. And malignant brain tumors , who knew little happy kids could get it and even die from it. A few years ago, I remember watching an advertisement from St Jude’s on TV showing little kids, bald from chemo treatments or radiation. I could not bear to see them and remember feeling very sorry for these kids and their families. Who knew that a few years later my child would be that child with cancer.
Well did I do anything to help out, raise awareness etc after I saw that AD on TV. No I did not. Maybe because subconsciously I thought that my darling girl who always ate organic fruits , vegetables and played outside in fresh air every single day could never get cancer. If I blocked it from my mind, it certainly wouldn’t happen to my child.

Now I am more than aware that pediatric cancer does not discriminate. It can happen to any child and my child was one among several hundred that it picks on every year. Why cancer picked her and our little family is something I will not delve into here…

So why is it that we know so little about childhood cancer.
Is it because we don’t want to know about little innocent kids getting sick and dying WAY before their time. Or is it because it’s just too sad. So why is so little being done for childhood cancer. Aren’t these children our future. Then why has FDA approved only 1 drug for childhood-cancer in last 20 years ? The answer is awareness in general public. Since there is very little awareness , it automatically translates to minimal funding for research. We hear about the Susan g komen Race for the cure for breast cancer awareness every year, year after year. Have you heard about any campaign being done at such a large scale for childhood cancer ? Isn’t it time that changed?

My Zoey passed away , not because of an accident, or negligence, or abuse etc. She passed away because there were no treatment options available. She passed away because she did not have any ammunition to fight the tumor (or boo-boo as she called it) in her brain.

Cancer picked on my girl and our life will never ever be the same. Our family will be doing everything we can to raise awareness and funding for research, that is so desperately needed. Every chance I get, I will share her story and the research fund created in her memory. Because every dollar we receive is a step in the right direction.
We are very grateful for all the support and donations we have already received from friends, family, and complete strangers. Please continue to help us in our fight and share her story with your friends , family etc whenever you possibly can. This means the world to us.

http://give.supportlpch.org/site/TR?pg=fund&fr_id=1040&pxfid=2713

Here is a picture of her all ready to go to her favorite ballet class in fall of 2011. Had cancer not picked her, she would still be enjoying her ballet lessons ….

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Thanks again,
Suman