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.