Wednesday, January 30, 2013

I spoke

Last night was a thank you dinner from Light The Night for all the top tier fundraisers. Amaey was the 2012 Memorial Honoree for San Mateo so they asked if I would like to come and say a few words.

I wasn't sure at all if I wanted to do it. But the recent events in life have made me question a lot of things about Amaey's treatment. I was talking about that with my sister and she said that I should talk about it and write about it if it is that important to me.
So I said yes, I accepted to talk at the event. I'm very grateful to Davina for being there with me. I'm not sure that I would have had the strength to stay through the entire program if I were by myself. I think I would have left...

My goal was to let people know the facts from a child's perspective and a parents view. I sensed the room getting darker and quieter as I started talking. I was shivering but I did not fall apart. I think Amaey was giving me the strength to tell his story.

This is what I feel and that is exactly what I said--

I have trained through TNT and done 3 half marathons. I have walked and participated in Light The Night, I have been nominated for the Woman of The year campaign through LLS and won, and during all those times I have come up to the podium and talked about hope and felt proud that my contribution, however insignificant, was going to help find a cure for my son who had ALL.

My son Amaey, was a man of science. He believed that science will cure him. He believed that he was going to kick cancer in the butt. He believed in everything his doctors made him go through. Amaey was diagnosed with ALL in 2005, when he was 3. He walked in the poking lab innumerable times, had countless blood transfusions, had many rounds of chemo, lost his hair, gained it all back, lost it again. He would get completely PMS on me when he was on steroids. He would be in and out of the hospital, had to miss school and playdates, and birthday parties. BUT, that was fine, because he believed in science and he was certain that this was but an inconvenience and it will all be in the past. 

In 2008, a month after his end of treatment, when we went in for a routine follow-up we found out that he had relapsed. This time we were told that it was because he is a boy. We see this kind of testicular relapse in boys. The cancer seems to find a hiding place in the testicles.

Fast forward to April 2011, a month before Amaey was to end his second round of treatment, we had to take him in to the hospital because he had a fever. Later that day my husband called me from the hospital to tell me that Amaey had relapsed, again, but this time it was with a chemo induced cancer called AML. A very aggressive kind of cancer and he might need a bone marrow transplant.

Being an ethnic child his chances of a match were negligent and yet Amaey found a 10-10 donor. In July 2011 Amaey underwent his bone marrow transplant and his hospital stay of 55 days in quarantine facility is what I want to talk about today. How do you lock a 9year old up in a room for 55 days? A hospital stay that started as a 30 day stay and kept extending until day 55 definitely did one thing to Amaey, he lost his faith in science. And worst still his spirit died. In those 55 days, he was undergoing intense radiation and was constantly hooked to medication and morphine.

A child that loved to talk, play with his brother and friends, a child who loved his piano so much that we got him a keyboard in his hospital room. That child lost his spirit. His spirit to live. It is all wonderful that we are raising funds to find the cure. But we all need to take a step back and look at the cost at which this cure is coming to these kids.

I don't think the doctors know what they are doing when it comes to the top tier critical cases. At that point it is a crap shoot. Let's tweak this medicine, oh that's messing with the kidney's OK let's add these 2 medicines, oh now the kidneys are fine but the liver is hit hard. All this tweaking and testing is happening on a live patient. A young body, a young living life. All the doctors are focused on is to treat that disease while they need to take a step back and look at the whole child. Look at the child's genetic make up. Look at what a 55 days stay in the hospital is doing to the child holistically and spiritually. You might end up removing the cancer from the child's body but are you hollowing them up and also wiping their spirit clean? Are you striking a balance?

When my son Amaey was diagnosed with ALL in 2005, A team of doctors sat us down to tell us what it meant. Looking at my stunned and worried look one of the doctors said, Mrs. Shah, let me tell you that if you were in the market to shop for cancer, this is the best kind you could buy. It has 85% survival rate. Your son is in good hands at this hospital.

Today in 2013, I do not have my son anymore. I'm standing here as a bereaved parent, a grieving mother.
In the year and 4 months since Amaey passed away, we have lost 3 other children. All undergoing bone marrow transplant. Their cancer was gone, technically their transplant was a success but they all died from an organ or internal system failure. These kids were ages 16, 9, and 12.

If all you, supporters,  that are raising funds are doing so to eradicate cancer, you need to make sure you ask for more. You need to make sure that you ask for your money to go towards a more holistic treatment that is based on genetic testing so that we don't end up telling another parent that they have shopped for the best kind of cancer and 6 years down the line they are making funeral arrangements.

Thursday, January 24, 2013

Does it get better?

Life has a strange way of making connections. Some people have come in our lives by accident, some were meant to.

We met this family at a Kids & Art art creation day at Pixar, almost 4 years ago. And it so happens that the dad and Apurva went to college together in India... small world right?

We stayed in touch with the family over the years while their son and Amaey went in and out of treatments and relapse. In April 2011, when we found out that Amaey needed a bone marrow transplant apparently so did the other child. When our friends were hosting Bone Marrow camps they were looking for donors for both the boys.

Amaey found a 10-10 match and had his transplant in July and the other child had a double cord blood transplant in August. Amaey's cancer never left him, it came back after his transplant and he passed away September 2011, the other child got discharged from the hospital and his cancer was gone!

I kept in touch with the mom. Kept checking in once in a while. I can see that she must have felt odd to contact me more often because of my loss but she still did check-in to see how I was doing.

We met her at a restaurant few months ago and she said that he was in and out of the hospital with GVHD but we took it as, it's been a year since his transplant, he is out of the woods.

On Jan 10th as I was driving Apurva to the airport I saw her name on my cell... I would not have picked it up because I was driving and I was getting late for the airport but something made me... I picked up the phone and she said Purvi.... and my heart stopped. I asked her if everything was ok. NO IT WASN'T. Her son passed away the night before in the hospital from GVHD complications. I couldn't see the road anymore. I screamed so loud... I was so upset. WHY WHY WHY.

When I went to meet her the next day she asked me a question... does it get better? I did not know how to answer that question. I did not say anything.

Now that I have had a chance to think about that question this is what I have to say-
Dear friend and fellow mother, the first of everything will be hard. First year in itself is very hard, each month when that date rolls in, it will be very hard but something changes after the first anniversary. The loss, the missing, the grieving becomes more part of you. Now you are not grieving with the world but grieving inside, by yourself. Because everyone else has moved on and they are not sure if they should bring the topic out and if they do will it hurt you.

Yes you are able to breathe a little better and you might not end up crying at everything but you still won't know why you suddenly teared up.

Does it get any easier? I can't honestly say yes, yet. Because I miss him so much of late. When I light his candle every morning, yes we still do that, I seem to be having much longer conversations. I miss him because I will soon be giving out the 2nd Amaey Shah Passion for Science Award. I miss him because I'm preparing for a middle school graduation when I should have also be planning a 5th grade graduation. I miss him because I gave away the red sofa where I snuggled with him. I miss him because... I just miss him.

Does it get any easier? In some ways, yes. I can see his friends and feel love and not pain. I can spend time doing things that he used to like. I can cook things that he loved. I'm willing to pick myself up and ask, why am I here.. what should I be doing next.

Tuesday, January 15, 2013


Today on my way to work I was listening to Adele singing Skyfall. It was so mesmerizing. I kept hitting play and rewind until I got to work.
This was the first time I heard it in the intimate setting of my car. It sounded amazing in the movie but today, in my car, it felt like a special performance for me. As soon as I heard the piano playing my eyes teared up, I could see Amaey sitting in the back, looking out the window with one ear listening to the tune and the other taking it in so that he could play it at home.
I wondered if he would like it. If he would like her voice, or the tune, or the piano rhythm better.

I liked it all. I haven't touched the piano since summer. I stopped my lessons because my teacher went on maternity leave. I know she comes back in Feb, will I go back?

I know Amaey would have been preparing for his January performance. Wonder if he would have picked this tune to play? Arjun is performing, he will perform on his electric guitar for the very first time.

I can't get the Skyfall tune out of my head. I find myself swaying and I do see a smile on Amaey's face and I see the gears turning in his head as he sits on the piano... wondering how he will play the tune.

Wednesday, January 09, 2013

The Runaway Bunny

I wonder how many times we have read the Runaway Bunny to our kids... I can't really count it. Maybe not as many times as The Goodnight Moon but it's still innumerable.

Whenever Arjun has time off from school, we run away. It is hard for us to be home during holidays and breaks. As soon as we are back from a getaway, we plan for our next escape.

As a family, one day we were talking about our travels. We were reminiscing about all the beautiful holidays we took with Amaey. Even when we could not get on a plane we would go to driving distances like Roseville, Sacramento, Santa Barbara, LA, San Diego, Palm Springs. The boys loved being in a hotel room. Their happiest moment was to order food in the room the day we reached. That was a rule, we ordered our first dinner in and watched TV.

When we started talking about life after Sept 25 2011, we really surprised ourselves.
We went to Hawaii in November to scatter Amaey's ashes. In December we went to Mumbai to see Apurva's dad because he wasn't keeping well since he heard about Amaey. During the February ski week we flew to Michigan to be with Apurva's sister and her family. We went skiing with them. For spring break we took off to New York and spent time with family and friends and we did a lot of sightseeing. Come Summer break, we took Arjun off school a day early and left for Rome, Venice, Florence and ended up in London in July where Arjun and I spent 2 more weeks and then cam back home just in time for Amaey's 10th b'day. His first b'day where we were celebrating without him. Come November, Arjun and I were preparing for our trip to Mumbai for cousin Aditi's wedding. We closed the 2012 year with a road trip to Phoenix, Arizona with our dear friends the Moussa's.

What does 2013 have in store for us? My mother-in-law will be spending couple months with us and we are really happy for that. We have a few places in mind for travels in 2013.... I know we will get there one way or the other.

What are we running away from? Or what we running to?
Traveling brings us closer to each other. We love to travel. That is definitely something we have in common. We love to try different places, new food, and sight see. We like exploring new hotels and destinations. We feel like we are doing something Amaey loved to do. Something he looked forward to do. Maybe he was so bound with limitations that going away felt like a wonderful change from his life. We also feel that Amaey is with us.
He does show up in strange places and in strange ways. While we were at the Phoenix Desert Botanical Gardens Luminaria event, we were completely taken by surprise to see 3 beautiful installations of names and messages of people touched by cancer. Apurva picked up a bright colored ribbon and our Amaey's name is floating in that mix now. While we were sitting in the outdoor cafe at the Heard Museum an Indian family sat somewhere around us... the only reason I tried to see who it was was because this kid had his head down and all I could see was the shape of him and his dark black hair and his hairstyle. The structure was exactly like Amaey minus the glasses. His older brother was wearing the glasses. There are many examples... many instances that I should start making a note of.

Does this read like the Runaway Bunny? it sure does to me. But the bunny does come back home. And when I came back home from my Phoenix holiday, the 2 orchid plants that some wonderful friends sent to us during his funeral, were blooming, again.

Sunday, January 06, 2013

Live for the living

When I was sitting by myself while waiting for my lunch in the lobby bar I was thinking that usually I would have craved this alone-me time. But I don't seem to need it as much right now. Because there are times when I can be around people but still be shut off and alone. And after thinking a little more I realized that all 3 of us have been that way since we lost Amaey.

Is this our coping mechanism, is this because we are grieving and still learning to get back to life. I don't know. But I do know that we are all still grieving in our own ways.

For me the hardest part of losing Amaey is that we have lost something that bound us as a family. I think over the years, his illness brought us closer. It made us a stronger family. I would have rather lost the cancer from our family rather then have lost him. But that is not the case, so how do we reconnect? I have been asking myself, how do we find the strength to reconnect and find that love and laughter. I have been asking myself, how can I keep Amaey in my heart and soul and still pick up the pieces and become a family again. I know it is very important for me to become a family again and feel the love and bond again.
While I was thinking about all these things a question came to my mind... what did I look forward to most when I craved to get away by myself? My answer to this question was an eyeopener- I said, that I looked to reevaluate my life and get recharged to take get back to whatever was thrown in my path, with a fresher pair of eyes. The needed rest helped me get back and sit in the hospital, the rest gave me a break from the driving back and forth from the hospital and the running right back for transfusions.

This got me wondering- If I could have that attitude then, then why can't I have that same attitude now? What I had then was so hard on the family too. If I take Arjun's attitude then what I'm mourning is my baby not being here with us, amongst us, but he is free of the disease, he is free to start afresh. If I stop being selfish for a second, then I can say that he is free of the borrowed life he was living to go start a new life of his own.

If I could live the life of constant uncertainty. If I could live a life of pain while watching him suffer on days when he was really suffering. If I could live a life where our family was constantly fragmented with hospital stays and work and school. If I could live a life of guilt and fear. Why can't I, now, live a life where I focus my energy on making some of his dreams come true. Why can't I live a life where I can take what is left and nurture it and honor him by becoming a stronger and loving family.

I read this on our trip to Phoenix, it was in the spa-

Walk the path of your destiny with purpose and an open heart.

Happiness comes when your work and words are of benefit to yourself and others.

I believed, after Amaey relapsed the first time that it was my destiny to stay home and take care of him and get him better and help balance life so that Arjun can grow and live a normal life. Apurva and I were going through our own struggles and we did not really have time or energy to dwell on our couple's emotional health.

Until then I was always looking forward for his treatment to end and get back to my life and get a job and do all the normal things that that I did before. But after his relapse, I tried to understand that my destiny was in the here and now. Focus on what I have. Now destiny has changed one more time and I ask, what is my role, what is my destiny now.
If I have survived the loss of my 9 year old and I'm still standing, there must be a reason for me to be in this world.
I had read an article on WSJ called war tragedies strikes family twice and there was something a father wrote after trying to commit suicide after his son passed away in the army, that really made me think--
"You have to make a choice, either I'm going to live for the living or I'm going to stay living for the dead".

Friday, January 04, 2013

Green shake

Today is the first time I made our green shake after almost a year and 3 months.

I make a smoothie almost every single morning. I have some usuals and then I try some new recipes.

I started making the green shake after doing a lot of research on the benefits of wheatgrass. I made it for Amaey and made it every single day. The wheatgrass and spirulina is what I wanted him to get to help him avoid transfusions. Frankly, we did avoid few transfusions and his doctor would ask me when he was bordering low on hemoglobin if I wanted to transfuse him or if I wanted to try my system and then check back in few days.

It helped us too. We all needed to be really strong and avoid colds and illness because Amaey's immunity was so low.

I do not know why I picked today to make it? I know that after Amaey passed, Arjun could not eat or drink anything I use to obsessively make for Amaey. 

Here is the recipe-

Today's green shake had-
2 cups spinach
1 avacado
1 apple peeled
2 cups apple juice
1/2 cup water
1 scoop whey protein
1 sccop wheatgrass (you can use fresh wheatgrass juice too)
1 scoop spirulina

Little things count

We decided to change the color of the walls in our living room. We went from our sunny marigold to a Tea cookie, butter milk. Next, we are donating all our sofas that are in the house. 1 from the TV room and 2 from the living room.

The donation truck will stop by today while I'm at work.

As I left the house this morning, I spent a few minutes at each sofa. I tried to smell Amaey in them. We spent so much time together. He would fit just perfect on the red sofa. His favorite thing was to read and take a nap there. I would put all the pillows and put a nice blanket on him and then he would give me his gorgeous, big, no cares in this world, and warm smile back to me. I would tickle him and kiss him and go lay down on the green sofa which was on the opposite. I would lay there looking at him and enjoy just watching him.

Arjun has used the green sofa as his tent and fortress. He would bring all the pillows from around the house, move the coffee table, bring some blankets and arrange everything in a way that would make it easy for him to wiggle in and then close the doors to the world and open the magical world inside. Both the boys loved to be in that make believe world.

The cushions from the sofas have warmed many butts while sitting by the fireplace and enjoying a cup of hot chocolate or roasting marshmallows.

The black sofa in the TV room has it's own stories to tell. We have spent many wonderful hours watching TV, playing on the play station, playing lego, jumping on it, jumping from it, and many-many hours worrying about when Amaey would have his transplant, which hospital might be better to move him to. Many hours talking with doctors behind closed doors figuring out a plan. Many hours talking with the doctor in Israel and finally deciding to take Amaey there.

Will our life be empty without those sofas? Sure our rooms will. And sure, we will fill them up with some other furniture and in time those sofas will become distant memories and we will start making new ones in the new space.

I guess that is how life goes. Out with the old and in with the new. But what really counts are those little things. Those little things that bind you to your memories. To the big things in life.

Tuesday, January 01, 2013

Good words

I was at a spa in Phoenix and saw these 4 frames. Words that I would like to share -

(Good fortune)
When one's spiritual
needs are met by an
untroubled inner life.
Happiness comes when
your work and words
are of benefit
to yourself and others.

Inner peace
the balance or
"just rightness" of
things in proper

The peace that
comes when energies
are in harmony,
relationships are in

Walk the path
of your destiny
with purpose
and an open