Wednesday, August 31, 2011

Day 36

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

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

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

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

Day 35

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

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

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

Monday, August 29, 2011

6 weeks

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

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

Feeling better

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

Saturday, August 27, 2011

Today

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

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

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

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

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

Friday, August 26, 2011

Amaey

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

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

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

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

Thursday, August 25, 2011

Day 29-30

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

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

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

Tuesday, August 23, 2011

Day 27-28

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

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

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

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

Monday, August 22, 2011

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.

Sunday, August 21, 2011

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-

video


video

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.

Friday, August 19, 2011

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.

Wednesday, August 17, 2011

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.

Monday, August 15, 2011

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. 

Sunday, August 14, 2011

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.

Saturday, August 13, 2011

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.

Friday, August 12, 2011

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.

Thursday, August 11, 2011

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!!!







Wednesday, August 10, 2011

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.

Saturday, August 06, 2011

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.

Friday, August 05, 2011

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.

Thursday, August 04, 2011

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.

Wednesday, August 03, 2011

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.

Tuesday, August 02, 2011

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.

Monday, August 01, 2011

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.