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.

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. 

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.

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.

A nine year old's musical journey

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

6 years old. Playing party.

7 years old, first performance.

8 year old performance with his music school.

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.

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         

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.

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.

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.

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.

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.

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.

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....

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.

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.

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.

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.

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. 

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.

love these photos

I really like the colors and composition in these photos Amaey took from his new camera-

Day 26

WBC at 1.2 and some show by ANC and he made some of his own platelets.

Couple days ago, Apurva and I decided we are not going to look at the numbers instead we will look at Amaey and decide how things are. Few days ago the nurse brought in the paper and I was going to garbage it but Amaey grabbed it from my hand and when he saw no numbers near his ANC he was really sad. It just was so not worth it. When the doctors came in I had them explain the whole process to Amaey, I think that helped him a bit.

What is good is Apurva is less stressed out. He would look at the numbers and worry about the .1 up or downward trend. I think he feels he has to analyze the numbers eventhough he knows nothing good comes out of it. I'm so glad he is more relaxed now.

Today, I brought Arjun with me. He had to finish school reading and writing in his journal regarding Hobit so we did not get to the hospital until 1pm. But since then the boys have been plenty busy. They watched Scooby-Do, played Lego Universe, Amaey rested for a bit and while he was resting Arjun went over and played with his friend next door. They built legos and played with the nerf gun.
When Amaey woke up Arjun came back and we played Doodle Dice, the boys played the Pirates theme song on their guitar and piano and now they are playing Swords and Soldiers on the PS3. I think Amaey will sleep well tonight.

When Apurva comes to pick-up Arjun I want to go for a walk, looks nice outside. It does feel nice to have both the boys together, feels so normal.

Friendly gestures

This morning Gabriel called Amaey and played his Clarinet over the phone. How wonderful is that. Gabbu and Ezra made some movies to update Amaey about their chinchila, their cat, and things they have been doing. The fact that they cannot see each other has not really affected them. Christopher plays lego universe with him, sends him hand drawn mazes, Gabbu tries facetime but the connection is bad here so it does not work that well. Some of his friends have been texting him and others connect via email. Amaey is enjoying the whole texting business, I just had to upgrade our phones and add unlimmited texting for all of us.

Some of my friends have stopped by just to give me a hug... I get a call in the room and when I go out near the entrance it is such a sweet surprise to see a familiar face when you are least expecting it.

Love these news reports sent by the Moussa boys-

Day 25

What a completely different day. Amaey woke up so happy, big smile on his face. He was up, showered and sitting by the window when the docs came in for their rounds. They were surprised to see him awake and asking questions.

Amaey has downloaded Ninja on the ipad and he loves playing it. Got me addicted too. But the game that I spend most time on is Art Puzzles and the new game Arjun has downloaded, iSlash. Fun, fun. Well, Apurva came with Arjun at 11am and that was really fun for the boys. They played with their lego Heros and Lego Universe until Arjun had to leave for tabla. I got to take him to tabla and that was nice. I got to go for a nice walk and catch up with friends on the phone.

We went back to the hospital in the evening too. Apurva and I played Rummikub while the boys were playing their lego universe. Amaey was so happy and content when we left for the night.

Day 23-24

WBC is still the same. they do not want it to go up to fast so I guess it is good.

Amaey is still complaining of stomache pain and is low and feverish. We worry about him but realize that we have to stop that. Apurva and I came to the conclusion that we are not going to ask for the lab results every morning. We will just let the docs tell us what they see during their rounds. We are driving ourselves up the wall with these numbers and it is not helping. We are stressed and we cannot afford to fall sick. This is just the beginning, we have a long ways to go before he is considered recovered.

It will be what it will be.

On the other hand, Amaey is just so Meh and blah. He feels cooped up and bored (his words). I had a big talk with him about starting a schedule and following it regardless of how he is feeling. Wake-up, shower, play the piano, read, nap, do some activity, wait for brother to come over, day is over.
Easy said then done. I know that. Hopefully he will find the motivation.

Right now he is getting a massage from his favorite masseuse. Hopefully he will feel zen after that.

Day 22

0.7 baby!! and some ANC showing up.

Now comes the worry... we hope there are no leukemia cells in his new marrow. Gosh it's a neverending battle. We do hope the transplant will put an end to it. But we all know how agressive cancer is so we do have to keep a very consistent eye on all is numbers.

However, he has been very slow today. It almost feels like he is bearing the burden of all the work going on inside his body. He said he wanted to be anti-social and not talk with anyone or do anything and that is fine. He did not sleep in the afternoon and read a book instead. When he was done he got out of bed and felt excruciating stinging pain on both ankles and feet. I oil massaged them and the docs came to check it out. No rash or reaction to meds, they think it is side-effects of radiation. They are also watching out for graft versus host and keeping a very close eye on him.

The nurse was explaing to me that they are being over cautious and watching him like a hawk because they don't want the cells to come too soon and take over his body and create a havoc. It needs to be a slow and calculated process. This is when the donor cells are engrafting and the new blood he is making is going towards healing the areas that were hit most.

He has been borderline feverish the whole day and they said he might spike a fever or not. He is also looking puffy but no weight gain so we don't know if he is leaking fluids anywhere.

He is fast asleep and it is only 6:30pm so I don't know if he is done for the day or if he might wake up and suddenly feel like partying in the middle of the night. 

Sisters

I had such a wonderful time with my sister and nephew. It was so peaceful and lovely to have them over. It felt warm to go home to a happy and cheerful house. I have to say that my mom has rubbed off on my sister because she has become an amazing cook. Maybe she always was... but she was whipping out all of her recipes like a pro. She was busy filling up my freezer.

The two of us had a chance to go for a massage one of the days and that was really relaxing. It was really cute to see her getting excited about camping. She went and spent couple days at Gandhi camp and she had to be impromptu and sleep in a tent. It was wonderfult o see her prepare for it.

I'm also glad we had a chance to out out for lunch. A strawberry mojito over lunch does sound like a celebration huh! We laughed and cried over lunch. We have grown so much over the years and yet felt like little teenagers sipping from the same glass.

She is one of those sisters that knows what I'm thinking even when I don't say anything. She can sense it in my voice, doesn't matter that she is all the way in London. I'm so grateful that she just dropped everything and came here to be with us.

Spending time with Akhil was good bonding for Arjun. The boys spent hours playing with nerf guns, chatting in their bunk beds, listening to music, watching silly youtube videos. The camp was icing on the cake. The two of them really enjoyed each day and all the community service hours they spent there.

Day 21

Three weeks since transplant and WBC is 0.4.

There is definitely movement in his body and the doctors and we were happy to see that. Amaey woke up peppy. He said, it's day 21 isn't it doesn't it mean I should start feeling better? I asked him do you feel better? and he started singing and dancing, it was super cute. He quickly brushed, showered and then we started to build his hex bug world.

Apurva came around that time so I left them. When I talked with him later he said that they built the entire hex bug town with its two floors and various twists and turns. His talking doctor stopped by and the massage therapist stopped by. Amaey did not nap instead read and watched some shows Apurva had downloaded on his iPad.

In the evening he was busy playing lego universe with Christopher. We called from home and then Arjun and Amaey spent a long time texting each other. Apurva and my phones look like they were abducted by emoticons...

At home Arjun and I went for a nice walk. Later he downloaded iSlash on my iPad and that is one addictive game, the two of us spent an hour playing that game it was so much fun. We completed our puzzle we have been working on and watched the Italian Job.

It felt nice to spend alone time with Arjun and to know that Amaey was feeling fine too.

Day 20

4 weeks since we have been in the hospital.

When I look around our room I can tell we have been here a while. It's grown, it's become Amaey. The little origami cranes are taking over and it looks beautiful. I came in late today. My sister needed to pack and I wanted to spend a little time with her. Akhil, Mona, and I went tot he hospital after lunch at 1:30pm. Apurva had told us that Amaey had an easy and restful night and had woken up happy by 9am. WBC at 0.2 but his Bilirubin was much lower. He needed a blood transfusion and other then that all looked good.

When we got to him he was getting ready for a nap. He did perk up when he saw his cousin and masi. They chatted for a while and caught up on akhil's camp experience. After they left Amaey felt really sad.

He sees all of us coming and going but he is constant here. Cannot leave the room, let alone walk out the door and see anyone other then those that enter his room. He brokedown and started crying, he misses home. He just wants to be home. He fell asleep though.

While he was sleeping, I stopped by to say hello to a friend who got admitted in the stem cell unit today. Their son will undergo a cord blood transfer next Wednesday.

After Amaey woke up he was still sad, because of Arjun's sniffles we can't let him come to the hospital so that has added to that. He was feeling nauseated and threw up and then after some meds settled down and started reading. I think it is going to be a somber night. I know he will get out of his funk but until then I know that it will be really quiet in the room. The trick is to get him to skype with Arjun... I'm sure that will do the trick.

Day 19

No WBC did not go up and they had warned us about that. They said it will work in spurts with some down and and some upward movement along with some not fun days involved in the mix.
His day was very simple. Since it was Sunday there were no hospital activites. I spent the afternoon with my sister, shopping and finishing up last minute things with her. In the evening she and I went to see Amaey. We decided to leave the older boys at home because they still had the sniffles and we could not take any chances.

Amaey was in a great mood when we got there. We played a few rounds of Uno and he won all of them... except the last round, Apurva won that and ther was a huge song and dance. It was too cute. He got a little tired so we decided to leave after Apurva had his dinner and Amaey had a shower and we tucked him in bed with his book.

He is really enjoying the Rangers Apprentice series, How to Train a Dragon series, The Secret Zoo,  The search for Wondla. 

Day 18 part 2

After his nap, Amaey wanted to be up and ready for his brothers. Also, after almost 10 days he had bowel movements... Huge deal! I'm telling you it's like having a new baby.

When the boys came in you should have been here to see and feel the love. Hugs and hugs and more hugs. Amaey loves Arjun's soft hair, Arjun loves Amaey's baldy taklu. Since it was raksha bandhan and the boys had received a few rakhdi's Mona tied raked to Apurva, Arjun, Amaey, and I tied it to Akhil. The boys played some Lego universe and as I was settling Amaey in his bed I could see him shivering. The shivering got worst so the family left. Amaey was feeling sick and you could see it. Even though everyone had showered and were wearing masks we were still worried about infections. They left right away. Amaey's shivering got worst. After a while when the nurse came to do his vitals he showed signs of a fever. He had to take one of his oral meds and he threw up. Oh god what is happening. I kept telling myself, let this be good. Let this mean only one thing that his WBC is actually coming in. Please let there be some gain from this pain.

We started watching knight rider but Amaey was feeling too tired so we turned in for the night. Amaey was really restless so the nurse got him a warm pack. From 9:30 to 11 he kept tossing and turning, he wanted to sleep but couldn't. So I sang, Gujarati lullabies, nursery rhymes, gayatri mantra... Everything that I could. Finally at 11:30 he was fast asleep. I couldn't wait for the morning 6am blood draw so that I could get the results. Finally i did and his WBC was .3 oh yes! Small move up but we haven't seen that number in a month... Hopefully it will keep going up.

Day 18

This morning I came early because Apurva had to drive to Olema to pick up the rest of the family. Today the kids do a performance for the parents. Something they work on over the week. Arjun's camp director called to let us know that Arjun has been playing his tabla and charming everyone. They have an event at the India Community Center on Sunday and they wanted Arjun to come and play tabla for the show. We are so happy that he has been having a good time. He so deserves it.

When the doctors did their rounds after apurva left, we had one worrying question... Where is the WBC? It should have started showing up. But the doctors said we just have to be patient. It takes 21-28 days sometimes. They were hoping to start seeing some upward movement too by the weekend but they think that since his mucositis is completely healed the WBC might have gotten used for that. No explanation makes sense, just wait and watch seems the right thing to do. Each body is different and we are praying and hoping that slow and steady will win the race. He is otherwise looking good and for me, that is good enough at the moment. I will take that over all the fevers and pains he has just been through.

Day 17

Morning was slow, really slow. After his usual shower he was really blah. His nose was bleeding because of low platelet count, he was bored, did not feel like doing a thing and missed Arjun... And then he started crying a bit. Apurva showed up just as all this was taking place. We tried to cheer him up but did not work. He went back to bed and watched a scooby doo show Apurva had just downloaded on iTunes.

In the afternoon I had some good R&R. Ate lunch, went for my haircut, went to TJ's and did groceries, cleaned the house, and left for the hospital, wow that felt like a normal day! Between Swati, Vicky, and Mona, I haven't done groceries in the last few weeks. Maybe run in for emergencies but a whole hour of walking around the store, looking at labels, smelling fresh flowers.... that was really nice. Hmmm, how can a mundane thing like grocery shopping feel so good?

When I went to the hospital, the boys were in for a real shock, I had been talking about cutting my hair real short, pre kids time. But wasn't sure if I was going to do it. I told Apurva I will see how I feel when I sit on that chair. Apurva was all for it... In fact he was like, just go do it... Do what makes you happy and even if the high lasts for 2hrs, do it. So when I walk in the room, Apurva loved it, Amaey on the other end.... would not acknowledge it, it was too different for him. BUT, he was smiling, sitting up by the big window and reading. What a huge shift from the morning. As soon as he completed his book we played UNO. Amaey won 2 games, I came second in 2, Apurva lost in 2 and then came the fun...Amaey and Apurva played swords and soldiers on PS3 and Apurva lost both times... We gave him such a hard time. Amaey being Amaey said, Pa... You need to go for a walk and redeem yourself. Ha, ha.

I left after Apurva came back from his walk. It was so nice to see Amaey happy. I don't know how he does it but I have told him that only he can make it happen, we can't make him change his mood or attitude unless he wants it changed. He is one tough cookie.

At night I got a text that Arjun had called and Amaey was tucked in bed with a big smile on his face.

Day 15-16

The occupational therapist and physical therapists stoped by. One day they spent time playing darts and another day they played golf. They used cups and bowls as holes and hazards.

On day 16 he was really really low. I think he is getting bored now and with Arjun not around that's amplified. I was with him the whole day but could not get him to do anything. He also started complaining of headache and hip pain. The doctors explained that that was because of new marrow coming in. Which sounds wonderful but scary because his WBC is still 0.1.

Mona did not come with me because she had to pack for her camping trip to Olema. She was driving with a family to Gandhi camp to attend their picnic.

In the evening when Apurva and she came over she tried to get Amaey out of his funk but it did not work. Apurva and I did go for a long walk and that was nice.

Arjun

Arjun is away at camp and Amaey is really missing him now.

Previously, while we were planning Amaey's transplant stay we had decided that Arjun would not come to the hospital in the first 2weeks... What were we thinking? That visit after his nap time is Amaey's drug. He looks forward to the wild and unexpected. I'm so glad that we got to our senses and saw what Amaey needed most and involved Arjun throughout the process.

Arjun has been calling the hospital at night to say hi to Amaey, and it brings a big warm smile in Amaey's heart. Last night he called and apologized for not being able to call the last two days. He asked Amaey about the new Lego universe download and Amaey just could not be stopped, he wanted to give all the details to Arjun but it was really noisy on Arjun's side so he asked to have a longer conversation on his return.

After 2 mins of his call I got a call from his camp and the person who is in charge asked me if Amaey was feeling much better? He said Arjun was so happy after talking with his brother, he said his brother sounded so much better, he sounded so himself again... I never know what these little minds are capable of thinking, what they keep inside them, and how little moments shape them. Apurva and I are passive onlookers to this special relationship. We cannot partake in their goings about be we can revel in their happiness.

Some photos

When we celebrated Amaey's b'day on July 16 before his transplant, I had a nervousness in me. I had to capture every moment of his life.
At the last minute I called our dear friend and filmmaker Sunil. Without any hesitation he and Renu stopped by to document that beautiful day. Here are some amazing photos from the directors eye (there were so many more but I couldn't upload all).

Thank you Sunil and Renu!!!

Book

I just finished reading a wonderful book, The School of Essential Ingredients http://www.amazon.com/gp/product/B003UHUBLI/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=0399155430&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0APR3NE8GZG2BFQ7RARD

Your experience with the book and it's characters will be based on the kind of baggage you are walking around with. Absolutely worth reading it.

Day 12-14

Amaey had a good day, slow and sleepy day, and busy day. They are watching all his numbers very carefully. They have to fine tune and try a different combination each day. They need to watch his kidneys and liver. His hemoglobin has stabilized since the last episode so that is one less thing to worry about at the moment.
But best of all... He said he was hungry yesterday and that was music to our ears. I gave him a bite of rice cake and he could swallow it but it felt bitter. He asked for cereal and he ate it with a big smile on his face. Apurva walked in as Amaey was eating and you should have seen the surprise on his face. We were jubilant like new parents watching their infant take his first bite.

Mona has been coming to the hospital with me on my days here and we played darts, UNO, rumikub and that has been a good distraction. But last night he was counting down to when Arjun returns.

It's been 2 weeks since his transplant and 3 weeks since we have been in the hospital. Days are blending in and we forget what happened the previous day because each day holds it's own challenge. We feel like gamblers in Vegas betting on a high roller game. The odds different with each strategy.

Day 11

Easy night but lazy morning... which is how a saturday should be.
Amaey's electrolytes are all whaky as they put it so they will be ine tuning all his meds and watching him very closely. His bilirubin is high and they don't like that but it is also caused by all the medications and electrolytes he is on. He also got a blood transfusion and that is a culprit too. Until day 21 his condition is considered critical. Until engraftment takes place and he starts making some counts.

The two blood types are constantly fighting inside his body too so with each blood transfusion they are hoping that the change will happen and then they won't have to worry about it. Right now he still gets his O+.

As one of our friends mom who is an oncologist in France put it, each day away from his transplant day brings him a step closer to a cure. It's a slow road to recovery and painful to watch him at times but it is hope nevertheless.

Day 10

As I walked to his room I saw the doctors coming out with a big smile on thier faces. They said, he was awake and cheerful and they were happy to see that.

He was a little slow though maybe from all the excitement from his b'day. After his shower he just wanted to go back to bed. His occupational therapist and physical therapist stopped by by neither could get him out of bed. He wanted to read his new book. He got 8 books and he can't wait to read them all.

In the afternoon the massage therapist stopped by and Amaey enjoyed that. He needed platelets so they had to give him benadrly, that slowed him a bit. He slept but was very groggy. I set-up his new dart board and once we figured the electronic scoring and all, we had a great time with it. When the boys stopped by later, they played lots of games. The room was bustling with excitement.

Arjun and Akhil leave for Gandhi camp tomorrow, they are gone for 8 days. So there was a lot of hugging and silliness as they were leaving. We will have to find ways to entertain Amaey in the evening and fill his brother and cousins shoes.

Day 9 on his 9th b'day!

Happy 9th Birthday Amaey!!

He is not up yet but when he woke up to get his vitals done he told me that his mouth did not hurt as much. It was still hard to swallow. He had a good night, no fevers, no pain pump at all.

We hope for a happy day filled with smiles and hopefully a sip of water.

Yes, it did turn out to be a wonderful day. He received lots of cards, phone messages, emails, texts and facetime birthday wishes. And drumroll..... 3 sips of water!

In the evening we came with gifts, cupcakes and cookies for the nurses and the boys decided to be British and have a tea party. Amaey had some tea too. It was beautiful to see him sit and sip tea and chat and smile. He wanted some of the stuffed animals from home so we brought along, freshly laundered, big dog, spotty and sir hoppy bun bunz joined in too.

The doctors came in singing at their rounds and the nurses came in in the evening and sang to him as well, that's when he got completely overwhelmed.

It was a beautiful day. His last single digit birthday, how special is that.

Day 8

Today was a different day. No fever overnight. After his shower he wanted to sit by the window. Can't drink anything yet but he did not need to use his pain pump much.
We started decorating his room. He was really excited about that. While he sat and played on the iPad, I put up little stuff here and there. He looked at it with a big smile. He could smile today and he wanted to talk. He called up his buddy and talked, though it was hard for him he wanted to keep going. The art therapist showed up with a project and Amaey happily worked on that. They had to read a book and then create the island from their imagination.
Just as he was getting ready for a nap after she left, we saw the occupatinal therapist coming into the room. I thought Amaey was going to shoo her off but he got out of bed and inspected the loot she had brought along. The ball she had was a bit heavy for him but the badminton seemed a lot of fun. Badminton in the room? She goes Yeah... big smiles.
Then he showed her his new nerf vortex and they did some target practise and then he was done. Happily done.
It was beautiful to see him smile and chat, two things he loves to do.

Arjun came with Apurva and then I went for a long walk around Stanford. When I came back the boys were in the midst of a PS3 battle.

Each day is so different. The way we look at it, each day that passes will bring his body closer to healing.

Day 7

Hard, hard, hard days, swallowing was particularly hard and his fevers kept going up. He stopped drinking completely and slept most of the day because of pain and fever. He needed blood and platelets and that always causes fevers for him too. Yesterday he could not speak either. His mouh was swollen and you could see pain on his face.

The only question he asked was when he would be able to drink water again. That's all he wants, a sip of water and he wants to enjoy it.

Arjun came on one of these days and Amaey was out of it, we had to leave in an hour and Arjun was really sad. He has taken the role of the jester, the entertainer and he always manages to make Amaey happy and I think he felt bad that he cold not make Amaey happy.

Well what goes up has to come down, we should see some change soon.

Day 6

A nice long bath is Amaey's favorite thing in the morning. So today when I came in he was in pain and looked like he had a low grade fever but the minute I mentioned a warm bath he was ready to wake up and start his day.

After his bath we sat by the big window and he sipped some tea but it was particularly hard today. The nurse came ot do his vitals and he had a fever. He stayed on the sofa and played on his computer for a bit and right now a massage therapist is massaging him. Amaey does not like massages.... seriously he does not like them. so to convince him to move to his bed took work. He gave her a hard time when she wanted to get started but I knew that if she was good she would win him over. And I think she is good because he has let her keep going. But he is too funny, he won't let her touch his head, no creme, no back. But she is so calm and gently working her way. I think he will take a nice long nap.

Day 4 and 5

Amaey spiked a fever on Day 4 and they had to start him on antibiotics and do cultures. Luckily after tylenol he felt better and did sleep through the night. The next day he was fever free. His mucositis is more inflamed so they had to up his pain medication dose.

He has stopped eating completely. The only thing he can do is drink some tea. He sips on tea throughout the day. However it is getting hard from him to sip.

Swati went back to Detroit and the boys were really sad, they wanted her to stay longer. Akhil stopped by and played Doodle Dice with Amaey and really enjoyed the game. Yesterday Arjun came in with a surprise for him. It was a Nerf Vortex blaster. Amaey was in pain, mouth hurt, could not speak but as soon as Arjun opened his surprise we could get him to sit up and interact. He had so much fun with Arjun and the toy, they did target pratice with cups and had a blast.

Apurva stayed over and said that Amaey did not get a fever and he slept well but was in a lot of pain.