Monday, December 26, 2011

3 months

Time seems to be taking it's own sweet time... It feels like a lifetime but it's only been three months. 
Being here in India right now is very helpful. Nobody here knows what Amaey has been through, nobody has an idea about our last 6 years or about our intense last five months. 

Life and death has a very different meaning here. It's all gods will. Maybe it was his time, maybe that was all the time he was given, maybe his journey with us was only for so long. The thinking is so simple. (it does sound much beter and philosophical when heard in Gujarati or Hindi) God plays such a big part of life here. Nothing is done without god being involved in it. 

Is this blind devotion or way of life? I believed in god too. In my own way I prayed, went to temples, churches, or any dwelling that gave me the peace I needed. Something my sister Dipti said is still stuck in my mind, "When I got Amaey's shocking news I was in the temple as it was Monday and i go to temple before going to the office. I asked the question why? I kept on asking this question and I got the same answer that you always prayed to get him well and let him be out of pains. I think lord only heard the second part."

I still do believe in god but the connection I felt is lost. When I see any god I just have one question, why? And then I start crying. I don't have anything to say or ask I just want to understand the why. I'm searching for that answer everywhere. When I'm driving, walking, talking, or just drifting... There is a spiritual channel on TV here and I find myself flipping channels and landing on that channel in hopes that I will hear the answer to my why.

It's still hard for me to accept gods verdict. 

Saturday, December 24, 2011

The Arabian Sea


On Dec 10 we had all of Amaey's best friends over. It was very touching to see the love in that room. We each lit a candle and then some of the kids played an instrument and then I played Amaey's last concert performance.
All the kids sat in a circle and each of them told us what Amaey meant to them and what reminded them of him.
Some of the children had already written a note for him and the remaining sat and wrote and drew something for him.


Yesterday, December 24 we went to Hajiali, a very well known and auspisious mosque in Mumbai and made boats out of all the notes and set them free in the Arabian sea. This mosque is in the middle of the sea with a path that is only accessible during low tide. The waves of the sea crash onto the rocks and steps surrounding the mosque. Apurva's sister Swati, her husband Ashish, and daughter Meera were with us too. Of course Sir Hoppy Bun Bunz was with us too. Amaey's favorite didi is in Mumbai too, Aditi didi and we were supposed to call her before we left early at 8am but none of us remembered. I think we were all grieving in our head in our own ways and just could not think about anything. We are still here for a few more days and we hope to go and do something special with her for Amaey.



Releasing these boats with messages to Amaey makes us feel close to him and makes us feel like he is reading all the special messages we send him. I love to see birds take off and the waves crash at us when we are thinking of him. I feel like he is there... I can feel him.

Saturday, December 17, 2011

SFO to Mumbai

The flight from San Francisco to Mumbai was hard. I could see Amaey everytime I closed my eyes. Our flight to Tel Aviv came vividly back to me. I kept seeing him sleeping and an internal tension brewing inside me. I did not think that a journey we had embarked on would be cut so short.

I did not know what a panic attack felt like, what anxiety attack meant. I have never felt claustrophobic before. All I wanted was for the plane to land in Mumbai. All I wanted was for this journey to end, the plane to stop and to run away as far as I could. I just wanted to go home. I had such a headache and could not shake it off. I was bad company for Arjun. He kept asking if I was fine and I kept hoping it will get fine but 16hrs later it still wasn't. I use to love going on journeys, longer the better. I loved the freedom I felt from being in the sky, seeing the different formations of the clouds, catching a rare glimpse of a sunset and a sunrise. Being able to get the most beautiful view of the world below, dazzling lights of a fleeting city in the night sky, and sometimes, just vast expanses of nothingness.

But not this time. This time I was hugging sir hoppy bun bunz and thinking about the various flights we had taken as a family.

I will have to find a way to get over this fear of flying because Amaey's bucket list is long and exotic - LegoLand, New York, Greece, Egypt... to name a few.

Tuesday, December 06, 2011

Perhaps...

When I wrote about the family of 4... no 3, I received a few emails and insights and they made me realize that loss comes in many ways. Death is not the only way to loose someone or something.

I took permission from my sister to share this on my blog.


If i said that i can feel how you feel then it will not be true because only a parent/parents who have lost their child who is their heart/soul/life would feel it but I could say that I honestly can understand your pain. I don't know if it is right or wrong for what I am going to say but when I say i understand your pain what I mean is when I read your mail where you had written family of 4 and not 3 I could not stop myself from thinking about myself. Yes by the grace of GOD my beloved SON is healthy and happy and I always pray every night to god that may he always be healthy and happy but it has been 16 months since I last spoke to him and 14 months since I have seen him and I also feel my family is of 3 and not 4 and beleive me it is killing. The pain is such that you cannot show it but you feel it and it is there with every breath you take. Yes you do not stop living but that does not mean you stop thinking and loving the person any less. 
One thing I make sure I do is if I want to cry i do cry. On Fridays when I am at home I have a good cry and for a while it feels good. Maybe for me my pain is a bit different because for the past 2 and a half years my son was making me feel like a failure and that was killing me. But one day I was sitting and don't know what it was but I said to mysellf that I was being very harsh and unfair to myself. I know I am not the best parent and never have said so but I have tried to be a good parent and have done my best to raise my children as good human beings and I should not be too harsh to myself. 
The way things are I have convinced myself that as far as I am alive my son is never going to want to know me and I also know for a fact that I am not going to get the chance till I am alive to see his child/ren and believe me it has not been easy to do this but if I am suppose to live for whatever years I have to then I have to stop living on hope and face the facts.

Loss is universal, no one owns it. Everyone feels it in their own ways for different things. What might seem trivial to one might be a huge loss for someone else... the emptiness, the huge gaping hole, can be made by anything. I wish the living would not hurt each other in such a way. I wish the living would slow down and stop hurting the people they love most.

Monday, December 05, 2011

Sharing the smile and the wit

This is Amaey in true sense. Every day and everything he did was with the same love and intensity... didn't matter if he was in the hospital room waiting to be wheeled for a procedure or make custom music for his brothers lego movie.

video

Here are some links of the boys jamming
http://www.youtube.com/watch?v=TXTpJ7O_U84&feature=related

Here Arjun was the director and knew exactly what he was looking for and Amaey knew exactly how to create what his brother wanted. Amaey made the original music played in this movie.
http://www.youtube.com/watch?v=2x6exXwKU50&feature=related

Sunday, December 04, 2011

The Warriors

When you become pregnant you start noticing pregnant women... Everywhere. Seems like it is an epidemic.

When you become a cancer family, you start hearing about people diagnosed with cancer. People come up and talk with you about tales of friends, family, distant relatives. Their cancer, their journey, their magic potions that miraculously cured them.
You are enlisted in an 'invited' only list.

When you loose a child, you become a part of yet another group. You suddenly hear about families who have lost the battle. About freak accidents, about tragedies beyond words. About loss that is so deep that suddenly your loss is made to feel weak.

But what is worse than death of a child? Whether it is a known cause, an accident, an illness, birth, genetic, or what have you. What really can be worse than loosing your child. Even in grief we human beings want to one up each other. My story is worse than yours or more tragic than yours... Really can one put a ratio or percentage on tragedy and loss? Can I not own the sole proprietorship on the loss of my child? Can I not make myself feel like I don't need to compare and made to feel better like the doctor once told me that if you were out shopping for cancer, the one Amaey had was the best one we could have selected?

We human beings are cowards as such. We always look for the bright side in everything. At least it's ALL, it could have been worse. When it got worse, we say at least he is back home from the hospital and does not have to be bed ridden like many other kids. At least he can go to school few days a week. You hear of a family breaking up and you go, at least we made it through all of this intact. Suddenly you hear about a parent loosing a child and you go at least they have few other kids in the family. You meet a family who has only one child and they say to you, at least you have another healthy child with you. You loose your only child and in a few months your life partner.... What do you say? At least I'm alive and able to keep living?

The only lesson I remember from Darwin if of survival of the fittest and I have used it on my kids several times... But now when I look around, see some dear friends walking boldly through life with a ghost following them everywhere, I wonder WTF survival of the fittest really means?

A friend lost her daughter 3 years ago, my dear dear friend lost her son 2 years ago, another friend lost her daughter a year ago. All of these friends have shared words of reason and reached out to me and I'm so grateful to them. I call them warriors. Warriors who have seen more in life, beyond their young years. I call them Warriors who are part of the human survival of the fittest experiment. I call them Warriors grieving and healing and picking up and moving on in their way. Am I honored to be invited in this esteemed Warriors club? I wish I didn't have to be but now that I'm a part of this club I will respect their loss and many more losses to come and pray that each loss is given the dignity it deserves. Every child leaves a mark on your life. You don't have an eraser strong enough to erase it or a whiteout that can cover it. The mark is made for a purpose, to teach us to live our fullest and enjoy what we have, when we have it. Because once it is gone, it is gone forever.

Thursday, December 01, 2011

Quiet

I had planned to run away to my friends house in Massachusetts as soon as my parents left for the east coast on the 30th. But I should have known that things don't work that way... I did not want to be alone after my parents left. They were here in my house before we got back from Israel. They have been here for us during the hardest times of our life these past 2 months.
We did not really do much but just their presence was enough. Having somebody other then the 3 of us had different energy in the house.
My parents are amazing. They are so alive and full of life. My mom loves to cook, did I say LOVES to cook! That is her passion and she keeps her self busy in that. Cooking food immersed in her love helping us heal little at a time.
My dad is just a naturally friendly person. He has so many friends. He is on the phone all the time. Calling friends and relatives all around the world. Catching up with all his kids every day.
My dad and mom would have little fights, and fun and crazy arguments.

So once they would leave I would be by myself in the house with Apurva at work and Arjun at school so I thought about going away for 5 days. But Apurva had to leave for India and now my parents are gone too and I'm still here... in the house.

Yesterday I was out the entire day, did not come home until Arjun was back. I went to Skylawn and spent some time where Amaey had his funeral 2 months ago. I sat on the rocks and looked out where you can see the ocean. There were some beautiful schools of birds in various transformations.
But today, I'm enjoying my alone time. I really needed it. I really needed this quietness. At lunch I found myself sitting in that one spot Amaey would... by the window where the sun would streak in. The only spot in the whole living room where he would be able to soak up all the sun. I happened to find just that spot and did not realize what I was doing until I sat on the floor and then had to close my eyes because the sun was too strong, I suddenly started smiling.

I really need this alone time to just take in everything... I know each day is different and will bring different feelings, but I'm not scared of that. I feel like a big experiment of human survival. I want to see how I get out of this strong and happy. I want to remember Amaey with a smile on my face. I want to think about him and feel warmth and happiness. 

Tuesday, November 29, 2011

Kauai

When we had to prepone the ash scattering service from 25th to 22nd, I was really mad. Really mad. I haven't been mad in a while. I felt cheated of my days with my baby. I had to give him up sooner than I would have liked.

Now in hindsight, I'm happy we did it when we did, it gave me more time to process while I was still there in Kauai. I did not end up bringing all my anxieties and questions back with me. I do not feel like I deserted my child.

The day of November 22 was dark and rainy. The only day it really rained while we were there. On one hand we were worried about Apurva's dad. On the other hand, I just received an email from a friend who lost her husband just 3 months after the passing of her son. I was in a state of shock. Unbelievable, aren't these things only for movies and high melodrama soaps?

As we made our way to Poipu to pick up flowers and sign all the waivers, the sun was coming out. By the time we got to the dock it had completely cleared out into a beautiful island day. The captain asked us where we wanted to go and Apurva asked to go out in the open ocean somewhere where we could find Honu's. The captain knew just the place and off we went with Amaey on my lap. When we moored we were totally surprised to see Honu's all around us. We could see them swimming and disappearing. As we started to put some petals in the water a baby Honu came swimming towards our boat. It was this beautiful turtle, not afraid of coming close. Then we scattered Amaey's ashes and the ocean seemed to open up to take him in. One by one we placed all our paper boats with messages. More petals and.... He was one with the ocean.
The sun was slowly setting and we sat down at the open deck and watched the sun set in the horizon with Omar Sossa's Sunrise and Sunset piano performance from his CD Calma. This was Amaey's favorite CD. http://omarsosa.com/discog.php

I felt like he was leaving me. I cried and cried. All of us did. Arjun, Apurva, my parents and I were just touching each other in silence, reveling at nature, the world around us, what we had just done and witnessed.

When we finally got ready to go back to the harbor we saw more honu's and realized that we were right opposite the hotel we had stayed at with Amaey on our last few trips there. I guess certain things are just meant to be...

This was such an emotional experience. So beautiful, so real, so heart wrenching.

Tuesday, November 22, 2011

One with the ocean

Kauai, the garden isle. Kauai the most beautiful place to be. Amaey wanted his ashes scattered here.
Today we will go on a boat, out to sea and send him off on his last journey.
Initially our plan was to do the service on the 25th on his 2mth anniversary but apurva's dad is in the ICU in India...

Our baby will swim with his honus and dolphins...

Thursday, November 10, 2011

Family of 4 no 3

We miss him, we miss him so very much.

The balance of our family is completely gone. It was never supposed to be a family of 3, no it was always supposed to be the 4 of us. We are so incomplete without Amaey. Cooking is too easy, there is no complaining. Arjun is an angel, he always was the easy going one, anything flies. He will let us know if he does not like what is for dinner but he will still eat it and enjoy it. That would have never been the case with Amaey, why are we eating indian food every single day? so what if grandparents are here why do I have to eat this every day? 

Ok, what do you want to eat today... and suddenly he will be off on my iphone checking the allrecipes.com app or the food network. Amaey it is already 5:30 and I have had a busy day and I really don't want to be making something from scratch. In one ear, out the other... how about linguine in pesto sauce with grilled shrimp, he would look up with his glasses sitting on his nose and the wide smirk on his face and the cute dimples on his cheek. How could anyone say no to that face.

That is what we miss, the troublemaker, the one that questioned our authority, the one that got lots of nuggies from his brother, got chased around with a sword, the one that was the cause of endless hours of screaming and negotiating in the house. The one that ruffled his brother and then started shouting not fair when he was being pestered.

Should we have another child? Sure we are still young. There are plenty families that have kids at our age. Or should we adopt? Or should we get a dog?

How does one move on, how does one keep living with this huge gapping hole in the core of your life. You can't replace this loss. Nothing can really fit in those shoes. So how do you find meaning?

Everyone keeps telling me to go back to work. Find a job, go do what you use to do before. You were so good at what you did before, we are sure you will get right into it. Really? Do you know that I quit my high powered creative director job in 2005? Whatever I did before was 6 years ago not yesterday. and now it's not even been 2 months since my life has changed, once again and everyone expects that I will walk into an ad agency or a media firm and get the creative directors job because I was so good at it. I know everyone has really good intentions when they say  that to me. I know they all mean well and they really know that if I don't find something to do I will go crazy. But it all just sucks.

You know what I want to do? I want to get to gether with my close friends and talk about Amaey. I want to remember him. I want to cry. Why are people so scared to do that. Why are they always asking if we have moved on, if we are putting our lives back together. What is the hurry? Will we ever move on? Will our lives ever be together? I sure do hope so. I do want to move on, I sure do want to keep myself busy and find something meaningful and useful to do with my life. I do want to pick up the pieces and stitch the life back but I haven't found all the pieces yet. I haven't found the pieces to patch the hole yet.

Thursday, November 03, 2011

My friend

My friend told me that she admired my being so open on my final personal moments with Amaey. That really got me thinking...

I have never seen death so close ever in my life before. I haven't even been remotely interested in knowing or finding out even if someone had ever talked about it. Having been with Amaey as he was leaving us was almost like having a conversation with your child when he is ready to leave for college or with your daughter before she walks down the aisle.

It was a very personal moment but a very troubling and heartbreaking one at the same time. I could not get it out of my head. I could not believe that I had really gone through this in my lifetime. I did not know what I was writing when I sat down to write and when the words came pouring out I realized that I was writing for Amaey. I wanted to let him know what happend. I wanted to let him know that we were there, with him, the whole time.

Is there an afterlife? Yes I do believe in afterlife, I believe our soul moves on, we are reborn and then the cycle of life starts again. Are we always born as a human? I don't know. But whereever Amaey is, and I think he is already plotting some fun with Steve Jobs, I want him to know that we were there, as he had planned, we were there with him the whole time. I don't have any expectations from him, I want him to be free. 

Tuesday, November 01, 2011

Last Night

Last night as we were getting ready for bed, I received a text. Suddenly I hear a huge sigh from Apurva. I have heard the sigh over the past month and I have sighed the same way so I knew exactly what was going on BUT I did not know what came to his mind.

He told me that the beep from the text brought back memories of those days we spent living close to our phone. Apurva and I alternated staying in the hospital and everynight and first thing in the morning whoever was with Amaey texted a synopsis, the lay of the land as one saw it. Most of the time we left details unsaid. We did not want the person at home to worry. We needed that person to recharge and be ready for the next day.

We texted each other everytime a nurse would bring in new directions, Amaey would sleep, not sleep, a doctor would stop by. At some point we were obsessed with fevers. Does he have a fever? Check it again after 15 minutes. Make sure he is not under double sheets. Is he under double sheets? It's hovering at borderline, oh it's almost 38. Phew it's 37.9.

The bweep of the text was enough for us to drop everything and focus on what might come next.

Wednesday, October 26, 2011

7:50am

In Tel Aviv at 7:50am a little child breathed his last breath.
He looked around the room, looked for all the faces.
He was holding his mothers hand, his mother, gently playing with his fingers, feeling every bit of his warm body.
His mother, trying to feel it all, the beautiful face, the deep cleft in the chin, the rosy red cheeks, the perfect nose.
Running her hands down the fleece polar bear jammies that belonged once to his brother, his big brother, his friend, his buddy, his partner in crime.
Touching his feet, his toes and waiting for him to break out in a giggle.
His brother sitting next to him in the bed, your head resting securely on his shoulder.
Your pa, sitting right there next to you on the bed, trying to relieve your pain.
He took off your mask and let you breath free, free of any help, free of any device.
He wanted to see you as you, pure, intependant, restful.
He wanted to remember you, as you.
You took your last breath. Then suddenly life came back in you and you breathed again.
We were there, talking, talking about the universe, talking about the beautiful sun that had just risen.
Talking about the new day, a new beginning.
We gave you permission to leave, leave and be one with the stars where you really belong.
Leave and be one with the universe that is yours.
Go, be free, free to be what you want to be.
We gave you permission to let go.
Let go of this world, let go of maya. Let go and reach out for your next adventure.
And then suddenly, you closed your eyes,
Those gorgeous eyes that I loved, twinkled with mischief, the ones that had long eyelashes envied by girls and women alike.
Two tears fell from your right eye... pearls, precious pearls. I drank them up.
There you lay, so peaceful. The sound of the oxygen nowhere to be heard, the constant beeping of the monitor, nowhere to be heard.
No wires, no tubes, no attachments, not physical or ethereal.
You silently moved on.
You never gave up hope and never wanted us to live without hope.
It was all planned, now I understand.
You wanted us all to yourself.
You wanted to call the shots,
You were always an old soul... you took us all the way to the old holy city and bid us farewell.
It was all planned, now I understand.


Praying...

My dear friend Maureen sent this to me yesterday and I want to share it. I'm constantly wondering how Amaey's friends are doing? I know Christopher and Amaey spent hours playing Lego Universe. They would skype in the hospital and do mad libs. I know Gabriel and Amaey would meet and talk like two old men that have a lot of life under their belt. I never knew boys could talk so much...


On Praying …
 
Our family says prayers and thank yous before dinner time at our house and everyone gets a chance to say something that they would like to.  Some times we thank god for video games and good food, but most often we say thanks for our family and friends.  In the last few weeks my daughter Taylor who is not yet 6 has on two occaisions asked God to bring Amaey back down to us because his family is very sad without him and Christopher is sad too.  I listen to the innocence in her prayer and listen to how sincerely she is asking for this one thing and it makes me wonder.   I wonder if that is how we as adults sound to God sometimes when we ask for things that we will not get?  When we ask God to help those we love to stay with us longer is it sometimes an impossible request?  As her mom, I know that her request to bring him back to us now is not likely to happen, but she still believe.  
 
We know people everywhere pray for healing and some are healed and others are not… I just don’t think those people who end up healed had more prayers, it just doesn’t make sense?
 
So what is the point in praying?  Sometimes I think it is a therapeutic process for the person praying.  It helps us focus, it helps us feel as though someone is on our side.  Maybe it helps us to keep going, to keep trying when things are more out of our control than in our control.  Is it just to give us something to do?  Maybe some prayers can be answered and some can not… but we just don’t know the difference.  Maybe they get answered with something different than we ask for.  I wish I knew.

Monday, October 24, 2011

What next?

My sister keeps insisting that I write. Write about how I feel write about what is going on, just write.

It has been hard to do so though. I haven't felt like sitting down. I can't make myself sit down and do something at a stretch.

But on NPR I heard Terri Gross's interview with Marie Howe and she read a poem she wrote after her brother passed away, that poem was so simple, so real. It captured something important... I want to share it here-

WHAT THE LIVING DO
by Marie Howe

Johnny, the kitchen sink has been clogged for days, some utensil probably fell down there. 
And the Drano won't work but smells dangerous, and the crusty dishes have piled up waiting for the plumber I still haven't called. 

This is the everyday we spoke of. It's winter again: the sky's a deep, headstrong blue, and the sunlight pours through the open living-room windows because the heat's on too high in here and I can't turn it off. 

For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking, I've been thinking: This is what the living do. 

And yesterday, hurrying along those wobbly bricks in the Cambridge sidewalk, spilling my coffee down my wrist and sleeve, I thought it again, and again later, when buying a hairbrush: 

This is it. Parking. Slamming the car door shut in the cold. What you called that yearning. What you finally gave up. We want the spring to come and the winter to pass. We want whoever to call or not call, a letter, a kiss--we want more and more and then more of it. 

But there are moments, walking, when I catch a glimpse of myself in the window glass, say, the window of the corner video store, and I'm gripped by a cherishing so deep for my own blowing hair, chapped face, and unbuttoned coat that I'm speechless: I am living. I remember you. 

Monday, October 17, 2011

Sept 21-23

It has been hard to go down memory lane and think about the last few days with Amaey. I have heard of slow motion but not of the opposite.

On Sept 21 Wednesday, Amaey was supposed to be admitted int he hospital for his 60 day bone marrow test and a biopsy that was due early on the 22nd. They wanted him in because he needed IVIG and platelets before the procedure. Since they did not have a bed we came home after his radiation, the two of us were very happy about that. We took a nap and later we enjoyed chai. Amaey loved my chai. He had promised to learn to make chai so that he could make it for me. Since Amaey did not really have an appetite and we were really trying to help him get off the TPN, I had started mushing all his foods into baby food consistency. Vicki helped me mush some beets, cataloupe for dessert, and my butternut sqaush soup. We were getting everything ready incase we had to leave for the hospital and have dinner there. At 5:30 they called and told me they had a bed. Amaey and I packed up and got to the hospital at 6:30. We had to go to the BMT area. Pratish and Bharvi came to spend the evening with him. They watched some TV, played on the ipad, itouch, giggled like crazy. Best of all was when they watched  Big Bang Theory, Amaey could not stop laughing. I fed Amaey food and he had quite an appetite today. I was so thrilled.

After they left, we settled and the nurses started his infusions. Amaey wanted to sleep with me and we chuppered for the longest time and then fell asleep. He was my normal Amaey, happy, content, and with me.

Since coming home Apurva and I had started talking about Dr. Slavin. We wanted to do some background check on him, find out from some of his patients, find out about his reputation and work in Israel, and finally, talk with him and see what he thought would be a good course of action if Amaey were to have a full relapse. We did a conference call with him on the 20th. We informed him of the fact that Amaey's counts were doubling ever day. He really did not care about the counts, all he asked was that the patient be in good clinical condition. Amaey was weak but in good clinical condition.
Who is Dr. Slavin... actually he is called Prof. Slavin in Israel. Before Amaey's transplant, we had a conference call with a doctor Renneker who is based out of SF. Our friend Rita had made the introductions. He mentioned Prof. Slavin was doing some out of the box treatment to treat cancer patients. But by this time Amaey was already on a transplant path. Miraculously he also had a 10-10 donor just in 2 weeks of looking for one. This is usually unheard off for ethnic and minority patients. So we had Slavin at the back of our mind but never thought we would be reaching out to him.

Apurva was also very busy calling doctors in Seattle, Minnesota, Germany, and France. He had sent Amaey's file to Sloane Kettering in NY as well and St. Judes. We were trying to figure out about DLI (donor lymphocyte infusion), NK cell transplant, and Haplo identical transplant. While Apurva was talking with all these centers and some of the best doctors, they all said that the counts doubling is worrisome but he still had time so a DLI or Plan B was definitely in the books. They thought that radiation in the meantime was a good idea too.

Armed with all this information we made sure that Amaey's team initated NMDP to contact the Donor for DLI. We were really upset that the doctors did not start the process earlier. This is where we have a huge problem with the BMT team, we felt that they were very by the books and not open to out of the box solutions. They should have started the DLI process the minute they found out about his skin relapse. On the flip side, they knew more then we did.... or did they?

At home Apurva had talked with Prof. Slavin and he said that if Amaey's WBC was doubling he wanted us to come as soon as we could. OK, today is Wednesday and we discover that Arjun's passport has expired. Apurva is trying to buy tkts to Israel to leave on Saturday. We are looking for direct flights from SFO but there aren't any on Saturday. We are also looking for angel flights to get us to our domestic destination. Between Pratish, Bharvi, Davina, Maureen, Renu, Helen, Rita, Marcela, and Carmen  there is a fire of activity. I know a lot more friends were involved in looking for angel flights and getting us bags.
I don't have bags, we need flight tkts, we are still lookin for an angel flight, a place to stay in Israel, someone to pick us up, but above all, A passport for Arjun.

Next day, Thursday Sept 22, I want to forget this day completely... it was a strange day very strange day. Yes we had had many strange days in the last few days but this one had a heaviness to it that I cannot describe. Heaviness of doom and gloom.
Early in the morning when the urologist stopped by to get my consent for the biopsy I went outside the room to talk with her. I did not like the conversation one bit. Everything she was informing me about seemed like I was putting Amaey in the a difficult situation and in the harms way. The complications she mentioned sounded grim. I could not sign the consent. I told her I needed to think and get back to her. By this time I had Amaey's counts from the early morning and yes, they had doubled again. Thi was not good. Amaey's ONC doctor stopped by to see how things were. We talked about Amaey's counts and what all this meant. He said that it was not good that they had doubled again. He was worried that when we would do his bone marrow test the cancer might have spread inhis marrow. However, all his other numbers regarding neutrophils and ANC were more stable compared to his overwhelming WBC.

Around 10:30am Apurva, Pratish, and Arjun come to the hospital. Apurva took Arjun to the passport office in the city. Maureen had found some info on expediting the passport. Davina had sent a notary to my house the day before and had my signature on everything because I was going to be at the hospital with Amaey.  I tell Apurva about my worry with the biopsy, he sees Amaey's latest counts and we both decide that this is it. Everything has to stop, we are not putting him through no more procedures, we are taking him home and leaving for Israel tomorrow instead of Saturday.

I call Arjun's school, Pratish takes Arjun to pick-up his books. Apurva and I meet with his ONC doctor and have a very frank talk with him. We tell him that we are leaving for Israel tomorrow (we do not have tkts yet) and we don't want to do no more procedures. His doctor, who has been with Amaey for 6 years now since the day he was diagnosed in the ER on Nov 2005, says, he does not recommend it but he understands where we are coming from. On his side there is nothing he and the BMT team can do. All they could offer was to keep him comfortable and help with his quality of life at home. He said that Amaey looks good and is definitely fit to fly and in good clinical condition. However he would like to give him one more round of platelets to help him with his flight.

We then go and meet with the BMT team, the social worker, and ONC doc. They tell us how sorry they are that they don't have anything more to offer and understand that we plan to take Amaey to Israel.
Apurva said something that I will never forget, we have had 9 amazing years with Amaey, all these years we have worked hard and he has gotten better because of hope. We told Amaey that his team has given up on him but there is a doctor in Israel who has an option that might work and Amaey has picked hope over sitting and doing nothing so we will take our chances.
I went home since it was 3pm. If we were leaving the next day there was a lot to be done.

Pratish, Arjun and I went home. Once I got home the frenzy of events that took place were...  Brian came home with Arjun's expedited passport. Davina had booked a hotel for us, Carmen had contacted her friends in Israel that we knew as well and they were planning to pick us up and they would bring food for us. Swati was flying with us and was meeting us in Philadelphia from where we were to fly direct 16hrs to Tel Aviv.
Korine a mom from Arjun's school found a private jet for us. Yes, this amazingly generous person, Mark Benioff, sent us NetJets. Suddenly I'm talking with his assistant and planning our flight from SFO to Philadelphia on Friday September 23 at 9:30am.
Apurva had managed to cancel our Saturday tkts and found business class tkts on US Air from Phili to Tel Aviv. We had to fly business class to keep Amaey comfortable and confined in a smaller area.

I don't remember if my friends were already home when I got there or if they came in one at a time... but all I remember is a room full of bags, hand bags, carry on bags, almost 10 people packing us. We were packing for an infinite time... I did not know when Amaey and I would come back. The plan was for Arjuna nd Apurva to return home in 2 weeks once Amaey had started his treatment. I had called my parents and told them to get ready to come to Israel if I was to be there for a very long time. I knew I would need help.

When Amaey came back from the hospital something was off. He seemed much slower then when I left him at 3pm. We still don't know if it was the 2nd platelet infusion that knocked him down. I wasn't happy that he was getting a second infusion because he got a fever or some infection from the transfusions if they were back-to-back. But by that time... there was too much else going on and it seemed like the best thing for him so that he could be strong on the flight.

Apurva and I are still trying to figure out if it was the transfusion or that fever they could not pinpoint on when they sent us home along with his counts doubling up each day that caused him to catch an infection because when he got onto the tel Aviv flight he did look sick and around hour 10 into the flight he had a slight fever.

Tuesday, October 11, 2011

Filling the gaps

What happened between Amaey's coming home and then suddenly leaving us all for his next journey? We never had a chance to talk about this with our family and friends. Things just transpired so fast that now that I look back I have to say that those were the longest two weeks of our lives, it felt like we were treading on quicksand and trying to stay afloat.

When they did his biopsy on the chest on Sept 7, they came back on the 9th with the results and they told us that his skin biopsy showed leukemic cells. His radiation doctor came to meet us right away and a plan was set to start skin radiation again 4 days a week for 3 weeks. We met with his entire BMT and ONC team and also decided to start him on a very low dose chemo.

His counts looked fine but we were really worried. It felt like deja vu, it felt like we were sitting in the meeting room 2 months ago with this same game plan pre-BMT. What happened? We are having this same conversation after 2 months of intense chemo, radiation, and a bone marrow transplant? The 2 months were a complete waste is that it?

We did not loose hope though, Amaey had beat this before, our family had worked through so much before, we knew we could beat this and move on. Everytime the chemo and hospitalization set him behind and we took him home and nurtured his soul and spirit and with good nutrition, exercise, a healthy dose of childhood happiness, and a lot of family love always brought him back to his normal happy and halthy self. We could beat this and move on. We truly believed that. We really did.

Over the weekend it was planned that they will let Amaey go home if he did not spike a fever, he had been warm for a few weeks now but the doctors really had no idea why and they started him on full spectrum antibiotics again. At this point the doctors understood that home was a better place than an apartment close to the hospital or the RM House. They were thinking of quality of life and home was where his life was.
On Monday, Sept 12 we got to come home and it was decided that Amaey would go home on antibiotics and TPN at night since he wasn't eating a lot. He still had low grade fever but we were really happy that we were going home, finally!

On Sept 13 was Arjun's b'day so it was very special that the house was full, Amaey was home which meant we were all under the same roof after a really long time. It was a lowkey b'day but it was very special. While Amaey was int he hospital he had sat down with me and ordered 2 special books for Arjun for his b'day. Luckily Arjun received them on the 13th, The Lego Ideabook and Lego Cool Cars book. Arjun was so genuinely happy, he said they were the best gifts he had received.

September 14, 15, 16 we would go back to the hospital everyday, do radiation, chemo and leave. It was so nice to drive home with Amaey in the backseat. However, I hated with all my heart and detested taking him to the hospital. I despised driving and completely hated putting him through the radiation again. I had to watch from outside while we made him change 3 poses and each pose took 5mins each. He so did not want to do it. He was promised that it was all over, he was told that once he goes for his BMT he will not need to go through any of this hopefully.

That weekend, we made the most of life. On Saturday 17th, Amaey and I had to go to the hospital for his chemo and Arjun had his b'day party. After Amaey and I came home we did our ritual nap... oh how I miss that.
Gabriel came over to spend time with his buddy. Amaey was so full of energy and so happy to see his friend. They played for a bit doing lots of different things and then they watched a movie and then suddenly Amaey was drained of energy and really tired.

Carmen had bought the boys brand new razors, these were high end scooters. So on Sunday 18th, we decided to take the scooters, helmets, and a picnic lunch and make a day out of it. We had to avoid a crowd so a park was not an option so we went to an office park, Apurva and Arjun scootered first and then Amaey and I scootered. It was such a thrill. He was so firm, and fast. I fumbled couple of times but he was standing tall on his scooter and riding like air. It was so beautiful. After we returned to our starting point we ate our sandwiches, and juice. Amaey was tired and did not say much but he was so happy. He had a lot to say about the noise Hotel Sofitel made, the noise polution it generated, the poop thanks to the geese. He liked sitting on the bench and looking at the man made lagoon. Did not like me taking photos and was bothered by his brother really bothering him. All normal stuff.

Monday 19th, Amaey had his normal BMT clinic appointment and he had to get couple of medicines so we were in the day hospital. On that day I told them that Amaey had been complaining of pain near his testicles. The doctors had no idea what it was. They called a urologist, and then had the ultrasound people come by. The ultrasound went on for a while, no idea what they were looking for, it felt weird to see them proding and poking all over him. After they left, the doctors stopped by and said that they are still waiting to hear back from the techs. Well, in half an hour the ultrasound team was back with the machine and a urologist and did the test again. By this time I should be freaking out but I just had this calm on me, bring it on... just bring it on, tell me what you want to say but give me a plan of how you plan to treat it.

When we finally left on that day we decided on a biopsy and his 60 day bone marrow test. They were supposed to look at the schedule and put us in for thursday. They did blood tests but I did not have the time to ask them the lab results with everything else going on.

Sept 20, Apurva took the day off and took Amaey for his appointments. They had radiation and chemo. I kept talking with Apurva and checking in to see if all was well. At 3:15pm as I was leaving to pick Arjun from school I get a call from Apurva, are you sitting, you should sit down and I start screaming hysterically. I start screaming, no one other then me is in the house, I have my shoes on and the keys in my hand, I'm getting late to pick arjun from school and the floor is slipping from underneath me. Apurva tells me that Amaey's WBC has doubled to 12000. 12000... that is not normal. He said the doctors can't do anything and they think the disease is spreading and he might just have weeks. WEEKS WTF!
I'm crying and in the car, I had to pick Arjun but as I get in the car I start freaking out, I'm crying unconsolably, I call Davina, she was working from home, and drive to her and I have no idea if I made any sense on the phone, all I remember telling her is, Amaey has weeks and I don't understand anything and I have to pick Arjun.

She is outside her house waiting by the curb by the time I get tot her house, she drives me to Arjun's school and then drops me off at the hospital. Arjun is a little surprised to see Davina driving my car, picking him up from school and droping me to the hospital. I could sense his anxiety. But I had to leave him in her safe hands and head to the hospital.

Apurva is in the consulting room with the doctors. They are having a conference with a doctor at St. Judes, nothing makes sense to me.  We are talking about DLI and NK cell transfer. After 15 minutes the meeting is done and we ask to be left alone. We both talk and then go and get Ammu from his day hospital room where he was sleeping. He had no idea what was going on. Nothing at all. He slept through it all. He was so happy when we told him we were ready to go home.

After we got home, Mrs G stopped by and worked with him for an hour, Amaey so wanted her to come, he said he had a lot of homework to catch-up and even though he had spent a whole day at the hospital, the thought of Mrs G was most refreshing. He looked tired and he was slow with the work but the two of them patiently kept going. It was so normal and so Ammu.

Wednesday, October 05, 2011

A nine year old's musical journey

Here are some videos of Amaey's performances and other glimpses into his beautiful life!


video
6 years old. Playing party.

video
7 years old, first performance.

video
8 year old performance with his music school.


video

video
9 yearl old. He could not perform at the venue so we taped him and the music school played these two performances at the event.


Thursday, September 29, 2011

Amaey, our Darling Amaey

9 year old Junior Scientist

The periodic table was his bible

Kept his 12 yr old brother in check. Advised him on what to buy, how to play his stakes on lego universe. Scolded him for spending too much money. Loved and idolized him more than anything. Arjun was the only person that could put a smile on his face when he was down.

Pa had the best ears, was the best cook, best at Math. But no dancing please, he had to draw a line there.

Teachers, his agents W, Q and C were his lifeline. He looked forward to them with the need of an addict.

Books, we couldnt keep up with him. We should have moved the bookstore in our garage. His books took him places he'd rather be at.

Music, oh music was his soul. He could groove and move. His piano took him on musical journeys, the melody fed his soul.

His friends, how loyal he was to them. They were his soulmates, his brothers in arms.

His home was his safety. The sofas for cuddling with us, and concocting mischievous plans with his brother. The fireplace for reading next to. The backyard, his kingdom for sword fights and decadent BBQ's. His room was his palace where he loved sleeping with Sir Hoppy Bun Bunz and chuppering with his brother until they were scolded.

His kitchen, where he spent most of his waking hours was where he called all the shots. Arjun called him a cow, he could chew on a bite long enough to finish his Calvin & Hobbs. Arjun called him the king of change minds - I want shrimp, no quessedilla, no pasta - ofcourse he would say this after the meal was ready.

His Ma was his driver, cook, nurse, compaion, Cruella, and someone with whom he could be himself.

Our darling Amaey passed away on September 25 at 9:50pm.

His Memorial Service is on October 1, 4:00-7pm at Hakone Estate and Gardens

HAKONE ESTATE AND GARDENS
http://www.hakone.com/main.html
Hakone Gardens                                                       
21000 Big Basin Way        
Saratoga CA 95070
      
408 741-4994         

Monday, September 12, 2011

Home atlas!

Amaey got to go home today, home being Home and not Ronald McDonald House or Palo Alto appt. We had a busy day with doc meetings, pharmacy meds pick-up, and biggest of all... Clean-up. 2months in the hospital meant we had moved part of our house here.
He was okayed to leave at 3pm but they added a blood transfusion so we had to stay until 7pm. Amaey was really upset but in the big scheme of things he was super happy.

We were counting and it was 48 days after transplant and 58 days total in the hospital. Wow, no wonder we are feeling so exhausted.

The best part of this was the big ear-to-ear smile on Amaey's face. Apurva had to leave to pick Arjun from school and Pratish came to help us out so he drove us home. Amaey was enjoying the view outside the window, enjoying the sunset on 280. As we were getting to the house we saw apurva waiting outside and arjun and vicky coming out to receive Amaey. As soon as he got out of the car he ran to Arjun and gave him the biggest hug ever.

Amaey went straight to his room and happily walked around the whole house.

Today was a momentous day, coming home after transplant is a huge milestone, one we will cherish.

Saturday, September 10, 2011

Sept 10

No results yet from the tests. Hopefully next week we will have a better idea. Until then we are here. His itching has stopped, if his fevers stop we can go home, he still has tummy pain so he gets adavan as needed. Otherwise, we had a good time with Kaki, Amaey asked her to stay longer and she extended and spent the day with him which was sweet.
We are hangin in there, enjoying the weekend.

Thursday, September 08, 2011

Sept 8

Maureen stoped by in the morning and that was really nice. We chatted about kids school and different things, Amaey was itchy but participated and that felt nice. For a change we were not just talking about him or obsessing over him, I think he liked that too.
The docs stopped by and felt that Amaey was looking better. No fevers yet so we are all crossing fingers, toes etc and hoping that it won't come back. No results yet, they think something should show up to tomorrow.

Amaey did resume taking in some fluids and sat by the window, watched his Scooby-Doo, ate some corn, took a walk... He has promised to playbhis piano and go for 2 more walks before the end of the day. He is napping right now, for the first time I'm not hearing any rustling in those sheets, looks like the sleep has taken over the itchy bitchy monster.

In the afternoon he had a visitor he hasn't seen in a very long time, Antonio from school and Patricia stopped by. Amaey stayed in bed for most of it but got alert and started interacting and showing him his nerf gun and Lego universe and chatting about things. When Antonio was leaving Amaey took his walk to the main door of the unit. I had a great time catching up with patricia too. It was really wonderful of them to stop by.
I had such a treat, two friends in one day to chat with. BUT wait there is more, Kaki is in town and she called me after work and stopped by in the evening. It was so wonderful to see her. I really miss her. What was wonderful was to see Amaey laugh out loud, he was so happy, participating in all the conversations, listening to kaki's stories about kaka and the twins... It was warm and amazing.

Contrast from the other day, a beautiful contrast.

Day 44

Amaey's day started with the itch and we acted fast and brought him benadrly, it helped calm him a bit. When the docs came to see him we were talking about GVHD and fungal infections. Test results are not back yet so we will just have to wait.
After I left, Apurva said the day was relatively better, no fevers! The itch was there but it was tolerable. He had his endoscopy at 1:30 and he did well. The photos the GI docs shared of his upper and lower gut looked pretty clean but we will get more detailed info once their biopsy is back. Arjun and I went back with dinner and Amaey had been resting and reading his book.... Lego universe was being initiated so that when brother arrives they can play...

Wow that felt nice to see a Amaey with his book.

He started getting tired and restless and after we left he slept. Apurva said he had a good night and fever free.

Wednesday, September 07, 2011

What a day!

I'm so tired that I can't write about the day because the thought of everything that kept happening is making me tired again.
When I got here Amaey wasn't his usual, I want to get in the bath, person. He just stayed in bed slightly itchy. I finally made him get up so that he could be up and awake for the doc rounds. A long oat shower, I thought, might soothe and relieve him but not really. He was quite itchy even after the shower. An oil massage did not help either. He wanted to be stripped of clothes and get back in bed with his shorts and a light bed sheet. He was very itchy by now, I tried rubbing his back and followed his itch, put some calendula too.

When the docs came he was really flared up. He did not feel like getting ou of his bed. He finally settled after his 2pm benadryl.

Amaey had to stay hungry incase he got a slot for his endoscopy however they did not have space so they confirmed for sept 7. However the derm people were planning to do his skin biopsy today. Amaey had a bad memory from his previous derm biopsy. Since it was urgent at that time they did not sedate him and he got stitches and he felt it all. So I was sure not to put him through that without sedation.

At 2:30 they told us that the derm folks and will come and do the procedure in his room at 5:30-6:00. Amaey could not eat or drink and refused to get out of bed. At 5:30 3 nurses, derm doctor, BMT doc, and a hospitalist show up.

They sedate him and when they are ready to inject the numbing med in his skin. I'm standing by him and he squeezes my hand really tight. That tells me it must really hurt. But what comes next completely takes me by surprise, the doc brings a devise that looks like a pumpkin carving took, something you would use when you want to make a perfect circle and remove the pulp out of the fruit... Right in front of my eyes he pushes it inside his skin and takes out a perfect circle from his body, blood starts oozing out, I cannot believe my eyes, he is so fast and good though that before any blood is lost he already stitches him up. Oh my god! You got to be kidding me... The thought that Amaey had to go through this twice without pain killer or sedation kills me, the fact that Apurva had to watch him and must have had to hold him tight and tell him to be brave, really kills me.

Procedure done, everyone except one nurse stays behind to monitor him since he had his procedures and loopy drugs. He sure was loopy and suddenly very very itchy. Apparently he had a reaction to one of the loopy drugs. GREAT!! This is at 6:30pm and he is going crazy until 10pm. They give him multiple drugs to help him and he does get a little relief around midnight but nowhere near to calm him down. I ask for the hospitalist and she calls the doctor and they finally listen to our request of stopping vanco and they move him to another drug.
After several rounds of ice packs on his body and more benadryl and adavan and no more vanco he settles around midnight, or maybe he was exhausted. He doesn't sleep though, not a deep sleep, I know because he was rustling and moving the entire night. I fell asleep at a point but when I suddenly woke up to check on him he sure was squirming around, however the itchiness had finally moved down to a level 2 from level 10.

Nights over, it's a new day and he is due for his endoscopy today. Will we know the cause of his fevers? Still a question looming at large.

Tuesday, September 06, 2011

7 weeks since transplant and counting

Nope we are not leaving the hospital just yet. Amaey still keeps spiking fevers so they did a full body scan yesterday and the results were negative. This is great news that all is well in there but it also means we still have no idea what is causing the fevers.

My friend Annada whose son had a cord blood transplant said something eye opening, the stage at which our boys have reached we are going to hear, 'we don't know what is going on' lot more from the doctors.
It's true that they are among the elite few that are experiencing science at it's best. Stem cell transplant was so controversial in the Bush era, he stopped funding for the same. Scientists and doctors are still figuring out how all of this works but they won't know more until more people have been experimented on. They need data and facts but they don't have a lot of data. And frankly each body is so unique. Someone that has a mis-match donor might sail through recovery while a 10-10 match might still be in the hospital with undetectable symptoms. It truly is a miracle to have such a transplant available but it is very frustrating when you are on the receiving end when the cause of fever is perplexing.

I do understand the depth of intricacies involved, his symptoms could be GVHD or viral. If it is GVHD then they can start treating it with steroids however steroids mask fever so if it is viral the fevers will be gone and the viral will still be looming at large. So they cannot treat him as GVHD as yet until they have conclusive results.

Since the scans were -ve, tomorrow they will do an endoscopy of his upper and lower gut. They also need to do a biopsy of the bump on his chest but dermatology is not available so now they are trying to nail them down. Hopefully they will have completed all tests on him by tomorrow and get results by Friday which means we are definitely here until next Monday.

Mary Claire stopped by with her two boys, Apurva said Amaey was really itchy but playing the PS3 with Raffi and Gabe was a great distraction. He said having them over brought about a little change in the rooms atmosphere and anything that could distract Amaey from the itch was awesome.

Tough jobs (by Apurva)

My son, Arjun, is twelve. Although he is a wonderful and loveable boy some teenage behavior is slowly and surely starting to become evident.

This morning I asked him to take the clothes out of the dryer and fold them. Much to my surprise he started crying – large teardrops rolling down his cheek. I didn’t make the request in a loud voice or harsh tone, it was just matter of fact and yet his reaction really took me by surprise. I asked Arjun why he had such a strong reaction to my request and he responded that he “hated” doing “laundry”. I tried to probe further and asked him why. “I hate it! I just do!” I knew better than to keep pushing him on this and so we swapped assignments. He emptied the dishwasher instead.

I couldn’t quite get our conversation out of my head and later that morning I started thinking about why we all have jobs or tasks that we really don’t want to do or to put it more forcefully, downright hate. I came up with three main reasons:

-       Mindless activities that just give us no satisfaction

-       Tasks that are really hard

-       Jobs that are overwhelming or endless

I feel that each of these tasks pose a different hurdle and can be overcome in different ways.

Mindless activities are things like laundry or dishes that don’t stimulate our mind and as a result provide very little mental satisfaction. I find that the best way to get through these tasks is to pair them with another activity that is fun and engaging. For example, watching TV while folding the clothes or listening to music while emptying the dishwasher. Even if it’s not possible to engage the other sense we can always let our mind work for example when we are stuck in traffic.

I am not very handy and so jobs around the house like leaking faucets or broken doors always push up my blood pressure. We all have our buttons – dealing with computers, doing accounts, working out. Surprisingly for every challenging job we hate, there is someone else out there who actually loves it. So difficult jobs are really those that don’t match our innate abilities and interests. I find that the best way to get through these assignments is to get them out of the way first and reward myself when I am done. For example, why not reward yourself to a movie or an ice cream next time you have to snake a toilet? Another option would be to trade tasks with others. For example, I would happily take care of your computer problems if you are willing to paint my shed.

Some jobs just feel overwhelming or endless. The best way to deal with these is to break them down into smaller, more manageable chunks. Look for the small victories rather than trying to get the whole thing done. Having enough breaks in between is really important since the longer you persist at the task beyond your comfort zone the more tired and frustrated you get and the more likely you are to resist that task in the future. Another solution is to share the burden so rather than doing the job all by yourself split the work up among multiple people. Even the very act of doing the task with others makes it more palatable. Our younger son, Amaey, has been in the hospital for almost two months and we don’t even know exactly when he will be discharged. If my wife, Purvi, or I tried to take this on all by our selves it would be far too overwhelming. Instead we split the task up by alternating who sleeps at the hospital. Also, we have tried really hard to compartmentalize so that if we are at the hospital we are fully devoted to Amaey’s care, however, when we are away we try our best to get on with the rest of our lives. When Arjun or other friends come by, it also gives us an opportunity to take a quick break, maybe go for a walk.

Later that afternoon, Arjun and I once again talked about this whole idea of unsavory jobs. After I outlined what I have written above, he not only listened but actually said “Thank you!” He did have a very insightful question. “Some times I just don’t want to do a job at a certain time or feel rushed.” This is another universal problem. I think the whole time aspect is closely linked to planning and is distinct from whether we like or don’t like a task. I will be sure to share my thoughts with Arjun and you once I have had a chance to think about that some more.

Sunday, September 04, 2011

Coach Apurva

Apurva starts work on Tuesday and I'm dreading it in many ways. He is so on top of everything at the hospital and at home, I feel so less pressure because of that. He has become a half doctor, an amazing cook he alwasy was, and a coach helping Amaey with his food and drinking. He works so patiently with him and I feel I will slack once he is back at work. He is single minded and when he has a task at hand he can single mindedly focus on it until he has completed the task. Right now his task is to get Amaey to drink more so that they can wean him off the ivy TPN. He has done an amazing job and surely the TPN has been lowered and he gets to be free for 4 hrs in the afternoon.
One of the days that Amaey was feeling better he tells Apurva, Pa you were right, drinking some milk and eating is helping my nausea. I could see Apurva beaming when he told me the story.

Hopefully Amaey will see the benefits of eating and drinking and not fight me much otherwise I will have to put on the coach hat too and I do not like that at all. 

What a nice break

Yesterday Arjun went over to Henry's house for a block party, my day to be home so suddenly I had a lot of time to myself. I had already cooked up a storm so my fridge was full, Vicky made some amazing tamales too so no cooking to do.
So what do I do... loosen up and take it easy.
Marcela came to pick me up and we went for a foot massage, a wonderful dinner after and yogurtuille to end it all. It was so wonderful to chat and drink wine and chat and walk and enjoy ice cream, and dressing up, ofcourse.
Just as Marcela is dropping me home I get a text from Davina and then she and her friend comes to pick me up and we end up at downtown again. By this time I'm totally zen with massage and wine so I just have some decaf coffee and enjoy yet another wonderful time with two wonderful ladies.
By the time I'm home I'm feeling so good and bad, bad because I have done nothing, no laundry dishes nothing. But that's ok it was totally worth goofing off.

In the hospital Amaey spiked a fever this morning so they have scheduled a full body scan. He has been itchy too so we really need to get to the bottom of this. Hopefully we will get some results by tuesday morning. But all of this means that we are not leaving the hospital this coming week.

Friday, September 02, 2011

Last two days Amaey is doing better with his nausea and pain. He hasn't wretched in the morning or needed extra meds. Today when the docs came in for rounds, the only question he had was, when am I going home, I want to go home today. He was talking about scootering around and that was awesome. I'll definitely go and buy him and Arjun new scooters because the ones they have are slightly rusty and we need to have new, clean stuff for Amaey.

The only thing stopping us from leaving is fever. He still spikes a fever and they are not that high but it's still a fever. If the fevers continue they will do a full body scan on him just to make sure all is well inside,

They already came and taught us the home nursing procedures. We got our education on do's and don'ts and discharge list which we will be glued to for the first few weeks. It is always nerve wracking when we have to go home, but going home after two months of being in the hospital will be a change of pace and reality for us. We will be staring at him and watching him like hawks so that we don't miss anything.

We have been spending our last two days looking for apts. I also stopped by Ronald McDonald house and it is final that Arjun cannot stay there. We liked one appt which is 5 min from the hospital and we might have an apt by end of next week.

Arjun started school on Monday, this week feels so long. Yesterday when I went home and I told him I was tired he said, wow pa said that yesterday too, you two are always tired why? And I felt like getting mad at him for being inconsiderate but while I was explaining the reasons I realized that it was not his fault and it was ok to say it as he sees it. Last two days were very busy because of the apt hunting. We haven't really taken on much in a while and now we know why, we are operating on an almost empty fuel tank.

Yesterday was sweet, while we were with the nurse getting our discharge training and education Apurva mentioned that it was our anniversary and the nurse spent a lot of time planning a getaway lunch for us. So we left Amaey with the nurses and walked across the hospital and had lunch and gelato. It was wonderful....

Wednesday, August 31, 2011

Day 36

I have only been here 4hrs and it already feels like a long day.
Amaey seemed warm when I came in. He showered and when he felt a stomach pain brewing we went for a short walk. We noticed that his tubing had moved so we could not let him move around too much until it was fixed. He was feeling pretty miserable this whole time. Shivering and in pain. We got him a warm blanket and I sat on his bed holding him for a while.

Apurva wears the hat of a coach and tries to get Amaey to eat and drink. He got the hemp milk and started working diligently with Amaey. He has many tablets to take since they are trying to convert the ivy meds to oral. Apurva works like a master coach and makes sure Amaey takes all of these. He is usually not a very patient person but he somehow has immense patience when he is working with Amaey on his meds and food. I have to give it to him for that.
The volunteer from the hosptial school stopped by and we were really glad that Amaey was ok with her staying and working with her. He stayed in bed and the two of them did math.

Just then the docs came for rounds so we went out to talk with them. Some good news and some not. We can't go back home because they do need us to be close to the hospital. Once he spiked a fever we knew that would be the answer so we were prepared for that.
They got the engrafting results and he has almost 98% donor marrow!! this is wonderful news.
They do not know if Amaey's fever is because of GVHD, a GI infection, or meds. So we will have to go down the list and rule each one out one at a time. Which also means that he might or might not be discharged on Monday. However it's only Wednesday and they feel that if this is an infection then he will turn around by the weekend.

So now we start researching for apts close to the hospital. I will also go and take a tour of Ronald McDonald House tomorrow after I leave from here. Our goal is to be together as a family so if RM House absolutey cannot have us all there then we will have to work hard ot find a place to stay.

Day 35

5 weeks since transplant. He had a better start. Drank some hemp milk and kept it down... no throwing up other then his usual morning wretching.
The doctors had an emergency so they did not come to the room until much later so I left for home.
Amaey had almost 650ml to drink and that was super. He needed a blood transfusion. The doctors took him off the sleepy nausea medicine and lowered his TPN. Amaey ate a few kernels of boiled corn!! But he also spiked a fever. They had to do cultures and start him on antibiotics.

When Arjun and I came over, he was settled and looking better. He did not have fever at that time. We had dinner and watched Oceans 12. Did not leave until much late. Amaey seemed pretty tired and we knew he would fall asleep.

However he spiked a fever at midnight and Apurva said he neededgot a potassioum infusion at 4. They have done the cultures so we will see if something grows.

Monday, August 29, 2011

6 weeks

Yes we have been here for 6 weeks today.
Today we did have the most important talk with the docs... When we get discharged!
His WBC is 4.5 today and all the other numbers look stable too. He will keep needing transfusions for a while but that is expected.
This week they need Amaey to drink and eat a little more. They need to wean him off all the ivy meds and move him to oral. They need to make sure he does well with all those changes. Worst case they might send him with some ivy meds that can be administered overnight.
We made our case about letting us go to our house but if that does not fly because of distance we will have to look for an apt in Palo Alto. They usually send families to the Ronald McDonald House but the problem with that is we have to live as a fragmented family for 2 more months. They would not allow siblings to stay there.
The doctors are going to make a case for us at their meeting today so we will know by tomorrow.

The day did not proceed veey well though, Amaey was feeling sick, slow, tired, and in pain. He was very emotional too. He did not get out of his bed until 3pm. Even when his talking doctor came in he stayed in bed and had a conversation with her. Finally at 3pm I forced him out of the bed. I put on my hat as a motivational speaker, had a very long conversation with him. He opened up to what he was feeling so low about, cried, listened, and finally felt a bit relieved. Then the day progressed slow but a bit on the brighter side.
Apurva and Arjun came with dinner but Amaey did not want to play with Arjun or spend time with him. They left by 9 because it is school night.

Feeling better

Amaey had a wonderful day yesterday.
He took lot of little naps but overall he was happier. In the morning when Arjun came with Apurva, Amaey did not want to do much and that was ok.
Apurva said that Amaey took 3 walks outside his room and met the baseline goal of drinking 500ml fluids in the day.
At night Raj and Sid stopped by, Apurva told me that Sid was amazing with Amaey. He let Amaey take his time and warm up to doing what he felt like. The boys ended up playing PS3 and after they left at 9:30 Amaey slept soundly.

Saturday, August 27, 2011

Today

Amaey went out for his first (forced) walk. The docs would like him to walk a little everyday and be more vertical. He is only allowed to walk out to the nurses station but believe me, that is a lot for him at the moment. He has to wear a mask if he leave the room and also when they come to clean the room.

We had a long talk with the doctors and we all agreed that time and patience is what is needed now. His body is working non-stop in recreating cells and fixing what's broken. It might seem like he is just sleeping all day but his body is working hard. Also the side effects of radiation show up 4-6 weeks later and fatigue, nausea, pain, and sleepiness are common.

Yesterday Gabriel stopped by in the evening, Apurva said the boys chatted a bit but then Amaey felt nausea and intense pain and got morphine and lights were out.

This morning when I came with Arjun, Amaey was in the shower. Once he changed e didn't roll up in bed instead he looked chipper and played Lego Universe with Arjun and fooled around with the docs. After an hour he did slow down and after his short short walk he is taking a nap with a nice warm pack around his belly.

At 5pm Christopher and Maureen stopped by. Amaey had a little tummy ache so he was a bit slow and christopher and he chatted for awhile, then they moved on to Lego universe and PS3. Amaey was free of his ivy for the first time today and went out and walked with his buddy. After they left Amaey took a power nap and later we watched Star Wars and then called it a night.

Friday, August 26, 2011

Amaey

It's hard to celebrate this first milestone when you are in the hospital and Amaey is not feeling up to it. He has been constantly complaining os stomach pain, aches, nausea, he throws up and is generally blah.
Not sure if it is the new marrow coming in that is causing all the pains. Not sure if he has liver GVHD. Not sure if this is his body's way of working inside out. But whatever it is is a bit hard.

Knowing Amaey it will have to come from him. He is the only one that will be able to change his mood and say, ok I'm ready to move on.
We have arranged a special buddy time tonight and tomorrow and we are hoping those will bump his mood numbers up.

We know he wants to get out of here, and he is worried about everyone starting school next week and becoming busy and he will be by himself. He was hugging Arjun and crying his heart out yesterday. I'm glad he cried. He was holding it inside for so long. He really needed to do that. I'm reading a Simple Path by Dalai Lama and he says that, unless you know you're suffering, the desire to be free from it will not arise. Consequently I heard an interview on NPR about a top coach who found out she has alziemars and she said something simple yet profound, it is what it is but it will become what you will make of it.

I think all of us need to let him be and let him come to terms with everything he has been through. Over the last 4 months it has felt like a fast paced run. Now that he is tapering off he and we will feel the pain and fatigue.

Thursday, August 25, 2011

Day 29-30

Day 29
Amaey had his procedure today. It was supposed to be at noon, moved to one and they finally took him at 2:30. After the procedure Apurva called and said all went well. The GI team told him that the upper stomach area looked inflammed but otherwise all looked pretty good.
Amaey's Bone marrow results and MRD results will come on Friday. It was a slow day for him because of the procedure, he was really tired afterwards so Arjun and I did not go to the hospital in the evening. We did back-to-school stuff and checked that off my list.

Day 30
ANC 1500!!
This means that he engrafted on the 23rd. This means that his body accepted the donor marrow, officially. YEAH!!
His hemoglobin is low but they are going to wait and watch. The only thing that they are watching out for are his liver numbers because they are high. They stopped quite a few of his medicines today and he is officially off the strict step 1 diet. He also gets to be free of his big ivy pole for a few hours a day and he can wear his funky mask and walk to the nurses station. HUGE improvement.
Arjun has been trying to keep Amaey busy but Amaey is sad that we keep talking about food and what he needs to drink.
This afternoon, he had a headache which means he is symptomatic and now he definitely needs a blood transfusion. Unfortunately that will mess up his liver numbers lot more. He usually spikes a fever after a transfusion. I do hope it is an easier evening on him.

All of this apart, it is a huge improvement and the doctors are happy with the progress. 

Tuesday, August 23, 2011

Day 27-28

Day 27
5 weeks since weve made the hospital our home.
Arjun came with Apurva and stayed at the hospital. Amaey woke up by 8:30 so he was really tired by the time I left. He was complaining of nausea and stomach pain. Apurva said that a warm pack and ome adavan made him take a peaceful nap. Arjun went to his friends room and they built lego Obi Wan's star fighter.
When I came back tp pick-up Arjun for his guitar lessons the room was a funny site, the boys were playing on the PS3 while the massage lady was working on amaey's legs. A contrast of calm and craze.
The doctors and GI doctors stopped by to talk about his procedure on the 29th. All of Amaey's numbers looked fine. His creatinine and bilirubin are slightly elevated but they are not worried about it. They stopped his vanco which means no benadryl which means a less groggy and sleepy child.
Apurva said they watched some tv St night which says Amaey can tolerate noise in the room.

Day 28
4 weeks since transplant. WBC is 1.5 and ANC is 500+ this is what Apurva wanted as his b'day gift. Happy birthday Apurva!
The docs are happy with the progress. If his ANC is above 500 for 3 consecutive days then the first day is considered the official day of engraftment.
Amaey asked for some broth today so we did a toast and sang happy b'day and all 4 of us had broth... yummy.
Right now Amaey is taking a nap, Arjun is reading ... Trying to complete his school reading before school starts on Monday. Wow who does this boy take after, I wonder:) I'm sure my sisters know the answer.
In the afternoon they tried to give Amaey the mist to inhale again and it was a disaster. He would choke every time they put the mask on him. I went and talked with the docs and we decided that they will try one more time with a diluted dose. 5pm they tried it again, Amaey really tried but just could not make it happen. He was in tears and really upset. The doctors finally decided to give the meds to him via the ivy tomorrow.

In the evening, Apurva came with nice dinner and he got a nice surprise visit from Raj who brought along delicious cupcakes and we had our very first visitor in the room. After a nice meal and some sparkling apple cider the boys left and now Amaey and I are settled down. He is catching up on reading and I might do the same.

Tomorrow is a big day, Amaey has his bone marrow test and GI test. The marrow test will tell us what percent of donor marrow he has and much more. The GI endoscopy will tell us if he has GVHD (graft versus host disease) because he keeps complaining of stomach pain and nausea, however he does not have any skin rash. We won't get results until Friday though.