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.