Thursday, June 30, 2011

Remission Baby!

Yes we did get an email late last night saying Amaey's MRD showed signs of remission. But we were not ready to accept the news after our consultation meeting in the afternoon. We wanted to make sure we understood what it meant. We met with his team again today and they confirmed that amaey is in remission and this is a window where he should be undergoing his transplant. The only workup left is MRI/CT/Xrays and that will happen tomorrow at 6:30am. Our BMT consult is at 1:15pm and that is when we sign all the paperwork. This will officially put Amaey on their calendar and if all goes as planned he will be admitted to the hospital on July 11 in the stem cell unit.

But life is not that simple is it...

As I had mentioned before his HLA typing is very common but unique as well and yesterday when the St. Jude's doctor looked at it again they want Apurva and me tested in detail because they think that we could be possible donors too. This is very unheard off. This has thrown the entire team in a loop. Their goal and our goal is to do all the research and legwork upfront.

So they are entertaining all these possibilities. We won't know until Tuesday about the final decision. There are lots of factors at play here. If they take us then there is no graft versus host but they do want some graft versus host disease to happen in his body. There are a lot of tests that they will do on our blood work and on Amaey's and then decide if it is better to go with us or an unrelated donor.

Regardless, we are happy that he is in remission. We are hopeful that he will stay healthy and the maintenance chemo they will give him in the interim will hold him up until transplant.

Madame Atoms

Ms Leslie stopped by today and that made both the boys really happy. Madame Atoms, that is her science club name. Amaey loves science. When he is prepped for his anesthesia he tests everyone on their atoms, planets, and such. Ms Leslie brought with he a wonderful book, a game, and a movie on germs, and the cells and how they interact in the body. I had told her that Amaey and Arjun need to get really serious about germs and hygiene. We know that if Amaey learns about this from a scientific angle he will retain it more then if it is required by mom. Oh that pesky, pushy mom.

On Saturday, Leslie stopped by with a very special guest, Brain Day from NASA. You should have seen the boys and their excitement. He talked about the Moon and Mars and water on moon. He brought a few posters along and alked about ways Amaey can help while he is in the hospital. We were also sad to find out that Brian was recently diagnosed with cancer too. They were bonding on the regimen of radiation that each will have to go through.

They have made many plans to go to Nasa, Foothill college observatory, and few other excursions once they were both done with their treatment. Amaey was like a sponge soaking in everything. He really misses his karate and science club and seeing Leslie and Brian Day must have felt really good.

Wednesday, June 29, 2011

No news

No news yet on the results. We did go in for our meeting but the MRD results were not back from St. Judes. We did start talking about all the options that lay ahead for us incase Amaey is not in remission. It was not a fun conversation because there were lots of ifs and buts and in the end we decided to wait for the results. They will have the results tomorrow and we do have an appointment with Radiation so we are hoping to get to know more.

Tuesday, June 28, 2011

Bone marrow

Amaey had his bone marrow procedure on Monday. Wednesday we have a consultation with his oncology team and they will discuss the results.

We are a bit nervous, he could be in remission and then suddenly things will move fast towards his transplant or they might have to discuss plan B. Plan B could be more chemo and/or go to St. jude's for NK cell transfer. We frankly have no idea and we are trying not to think about it but we both have the silent treatment with long sighs going on so I know what we are thinking.

We don't really know what to wish for other then the best possible outcome for him.

Friday, June 24, 2011


Waiting for Amaey to be done with his neuro psych appt. They have been working for 3hrs now. He did come out couple of ties a d got a break but this is long. They do an IQ test, verbal, visual, cognitive tests. Math, reading, writing, how he holds his pencil, what he has to say about himself, what is lacking, what has changed, what are his good qualities.... They are charting out who Amaey is as a person.

Next we take a lunch break. Apiece and Arjun will come here with lunch and then after lunch I will take Arjun home and source will take Amaey to his pulmonary Fu croon test. He does not need a transfusion today (yeah) so then the boys will come home.

Thursday, June 23, 2011


Today Apurva and I went for a nice walk before dinner. It is funny that I was feeling happy just for the mere reason that we came back home after the appt. So strange isn't it, life is so tentative for us, when we take him in we really never know if we will be able to bring him back home with us.

This is a fear that has set in for me now. When he goes in for his BMT we really do not know if he will come back. Apurva and I talk about this, sometimes he feels down and other times it is me feeling withdrawn about it. Underlying, we both have faith that he will be fine and this will be a new life for Amaey. It's a second chance.

I'm taking little movies of the boys everyday. Capture each precious moment.

We are staying very positive but sometimes it does get hard. Most of the time we just have to look at him and his amazing spirit and that completely lifts us up and makes us forget everything.

Tomorrow will be a new day. Yesterday will be a past. Today is all we have and we are making the most of it.

Kids & Art

The hospital stopped by at our kids & Art office to take a look at all the art. They picked 25 pieces some paintings, photography, and two masks. They will be displaying our art in a display case near the cafeteria. This is really wonderful news because most of the kids and families that participate in Kids & Art are from the hospital.

I can see Amaey excited to hear from his doctors and nurses when they see his art. They will get to see another side of these kids, the creative side. The non slow and grouchy side. instead the bright and cheerful side.

All these years walking around the hospital and seeing art on the wall I have always wanted to see the kids art on those walls. I finally get to get their art displayed and the hospital art buying committie might buy some pieces as well.

Sunday, June 19, 2011

Happy Fathers Day

To all the special dads who take the time to be themselves, share their love and knowledge with their kids, laugh and joke with them, teach them to respect who they are.... Happy Fathers Day!

One dad that deserves a shout out is Apurva. We all go through journeys in our lives but what we learn and become after each journey is for future to tell. When we heard about Amaey's relapse I didn't think I could have kept going. I did not have any energy left in me. I had taken the job of the primary caregiver but I felt like I had used myself up. Apurva on the other hand was just there, he was there 100% as a dad, as a cook, as a coach, as a teacher, as a joker, and as a worrier. He evolved into this person, a dad with his head tight over his shoulders.

Happy Fathers Day to all dads!

Saturday, June 18, 2011

Vampire strikes

We came in to the day hospital at 8am this morning. This was a scheduled transfusion. We did not want Amaey to get both platelets and blood on the same day. If that is what caused a fever last time it wasn't worth putting him through it again.

The hospital complied and let us divide the transfusions. Amaey is benadryled out and sleeping. They are watching his blood pressure because it is low and monitoring him for fevers.

Apurva and Arjun are on the plane to LA. They will be attending the Cars 2 premiere. I'm so glad that they could go. We did not book their tkts until yesterday afternoon. It is hard to plan so we don't. If it happens it happens. I was scrambling to find decent clothes for Arjun yesterday. His jacket was small on him and all his shirts felt snug. My friends were all looking into their kids closets to save me a trip to the mall but finally at 7:45 pm we did end up at the mall. Arjun has a style now. I was impressed, this kid knows what he will wear and absolutely not look at. No tie or shirt for me, I will wear a nice design t-shirt with my jacket and jeans. OK, I can live with that. Can we go get a haircut? No, I like it long and I'm going to wear it.... And he shows it to me, but it won't stay that way the whole time because I really don't like all this hair on my forehead. WOW, this child is almost a teenager, when did that happen?
I feel like every time we are busy with Amaey, Arjun regresses or grows, oscillating between independence and his need to be babied at the same time.

Parenting is quite amazing. I catch myself shaking my head when I'm alone, can't believe how much can happen in one lifetime. Who says life is short? I think life is long enough to live many lives, be many people, make many mistakes, find new meaning, and then start all over again.

Friday, June 17, 2011


Apurva took Amaey for his Nuro Psych appointment in the morning. It was 3 hours long and Amaey said he had a huge headache after. What is democracy. Can you arrange all these white and red blocks in a certain order using only 9 blocks. Amaey would not tell us more but looking at all the forms we have to fill, I'm sure it was a lot of work. Apurva was so mad (in a funny way), the doctor is greedy... 3hrs, what is she going to ask an 8 year old for 3hrs?

They came home for an hour, we had lunch and then I took him back to the hospital for a platelet transfusion. They gave him benadryl so he is fast asleep. Tomorrow at 8am we have to come back to the day hospital for a blood transfusion.

Last time he had a fever after he got both back-to-back so this time I insisted on breaking them up over two days. We don't mind driving him around if that will help him tolerate all of this better.

Amaey in photos

Amaey opening some gifts 

Amaey playing starwar madlibs with Christopher via skype

Aloha! and yes the little figurine next to Amaey is... you guessed it Gabriele:)

Since Amaey did not get to attend the screening of Cars 2, they sent him the screening at the hospital. Here, Apurva, Amaey, and Arjun enjoying Cars 2 in his hospital room.

BMT work-up

The Bone Marrow Transplant (BMT) team has started their work-up on Amaey. This means they are starting all the prep. He needs to be evaluated by every department to do a baseline test. They want to mark where Amaey is right now and this will be their reference for after BMT to get him back to his pre-BMT levels.

Here is what is involved-
June 15 Audiology
June 16 Nuclear Med (kidney function)
June 17 Neuro Psych evaluation
June 21 Opthalmology
June 23 EKG/ECG
June 24 Neuro Psych part 2 and PFT(pulmonary function)
June 29 Radiation consult
A dentist will evaluate him too.

Sounds intense and it is but the funny thing is we are happy that we can take him home each day. His hair is starting to fall like crazy. We were teasing him today that he is shedding like a cat and we need to vacuum after him. He really wants to go for a haircut so that he can cur his hair really short. I would like that too because right now he has a full head of hair and I don't like seeing those bald patches on him, I'd rather he have a shaved hair and then if it is all gone then it is not a huge drastic change.

June 13

On Tuesday we were supposed to have a consult with Amaey's main doctor. So early in the morning Amaey wanted to shower and eat his breakfast and be ready. He had a whole speech ready for the doctors, reasons why they should send him home.
So he decided to act it out and be prepared. He asked me to be the doctor and he was - Amaey. It was really funny but he was prepared.
finally when the doctors did show up he was tongue tied. Once he was prompted he was on a roll.
1) I have not had a fever since I got here. I'm fine and bored.
2) My cultures are negative
3) There is construction starting in the hospital which means I can't leave my room at all. I will be better off at my house and more happy too.

The doctors agreed to all his points but insisted that for an AML patient they really do not advise to leave the hospital until the counts are up.
Amaey promised that at the slightest sight of fever or problems he will work with us and come to the hospital. They made his do a pinky promise and told us that this was our one and only escape from the hospital pass. Next time we will not be able to leave until they think he can. We greed to all of that and finally at 6:30 after all the meds and paperwork was complete we came home.

It was really nice because my sister was leaving for Florida and she got to spend a few hours with Amaey before leaving.

Sunday, June 12, 2011

Staying here forever...

Yesterday the doctors came in for their rounds and informed us that they would like to have Amaey stay here until he is handed off to the transplant team. You should have seen the disbelief in Amaey and my face. We felt so cheated. Amaey pointed out that he has not had a fever since he came in here, he is feeling great, he has no other symptoms and why would they make him stay here.

They have put us in a Hepa filtered room, this room has a double door and is very secure. They are trying to keep him as safe as possible. However we know that if he is in the hospital the chances of him catching something are much higher. They listened to everything we had to say but seemed pretty set in their plan.

This morning Amaey's cultures came back negative and the doctors said that they will talk with his team and then decide what to do. We have stopped fighting at this point.
In the meantime we are making him very comfortable here. This afternoon, Amaey and I enjoyed our lunch by the fountain. It was nice and sunny. We are back in the room and Amaey is watching food network. I'm sure he will find a recipe that he will make me quickly write down and then call Apurva to cook it for dinner tonight.

Yesterday we were watching diners, drive-ins, and dives and he looked up at me and said, doesn't Rita aunty make really good french toast? He takes my phone and calls her. Rita aunty can you bring me some french toast for breakfast.... and guess what Rita aunty falls for his whims. He gets yummy french toast, strawberries and syrup... he is in food heaven.

For him food is his only connection to the outside world. He has everything else here but the fact that that he can plan his meals and get them delivered fresh makes a world of a difference to him.

Anything to keep him happy...

Friday, June 10, 2011

No fever

We checked in this morning but Amaey has not had fever which is really good. All the doctors come in and wonder why he is here because he looks really good. We think he spiked a fever from the transfusion but we won't know until his cultures come back on Sunday.

Today was the first time Amaey had a meltdown. He was really upset when we had to leave for the hospital this morning. He had literally just got home after 2 weeks in the hospital, he was so looking forward to spending time with Arjun on the weekend. He just hugged me and cried so much. I told him it was ok to cry, instead it was ok if he wanted to scream. It wasn't fair at all and it really sucked. We just sat in the kitchen and let him cry. Once he was quiet I asked him if he was ready to leave and he was.
He gave the doctors and nurses a real hard time too. He kept asking them why he had to be there when he had just left. Why he had to stay when he did not have a fever anymore. He was upset at Apurva and me for calling the on call oncologist when he spiked a fever. He kept asking the RN when he was going home, she kept avoiding the answer and he kept getting back to the question until she finally said that they needed to watch him for couple of hours but most probably he had to stay for couple days until the culture results were back.

She was a new RN, not used to Amaey's direct assault and questioning tactics. He can advocate for himself and she was quite surprised. Some of the other nurses that know him well were taking their time to explain things in detail to him. It is amazing to watch him take over when he is in the hospital. He knows the place and the people, he knows the ways and what is expected off him. He has spent 5.5 years of his 8.5 years here, I'm glad he is in charge, I'm really glad he can advocate for himself.

Home, hospital, home and back again

Amaey was discharged on Tuesday. He was so happy to be able to go home and do things at his own pace. Wednesday was hard to contain him. He would not sit in one place at all, he composed some wonderful tunes on the piano and as soon as Arjun was back from school the two of them were off. I haven't heard so much chatter in my house in a while. They had so much to talk about, so much to share, so much to show each other.

They also had two very special visitors. Ashish stopped by and then Flavio stayed over. We hadn't seen Flavio in almost 4 years, it was a special treat. However we were worried because we haven't allowed visitors in the house. His counts were fine so we knew it was ok but we usually try and avoid having too many people over.

Thursday, Amaey had to go back to the clinic for a check-up and they ended up staying for the whole day. His platelets had dropped to 3... that is a dangerously low number. He got a platelet and blood transfusion. Arjun had graduation and dance at school so my sister and I were with him. When we got home at 10:30pm Apurva said Amaey had a fever, this meant taking him to ER. We waited however and kept checking his temperature and it went down so we decided to wait until the morning.

This morning I brought Amaey to the day hospital. Since he had a fever and his counts have gone down very low they need to do cultures and have started antibiotics on him. He gets benadryl because he is allergic to one of the drugs and he is falling asleep now. They don't have a room for us in 1 North so I have a feeling we will be in the day hospital for a while. They are saying that we will be here for 2 days for observation, I have no idea what their real plan is. He hasn't spiked a fever since last night but the chemo he just got is very strong so they are expecting his counts to sink low even furthermore.

I already came prepared with bags so we are ready for our stay.

Monday, June 06, 2011

Talking doctor

Amaey had a visit from the talking doctor. As soon as she comes in his room and introduces herself he asks if she was writing a biography on him.... it is so amazing how this boy thinks.

She needed to meet with me first and see if I approved of her and then she was supposed to talk with Amaey. By the time she was ready to talk with him he had received his benadryl and he was loopy. I had left them alone and had gone for a walk around the courtyard. By the time I came back he was fast asleep. Later I teased Amaey that he felt asleep on his date and stood her up. He was laughing his head off. He thought I was too crazy for him.

On Tuesday, Apurva, Arjun, and I went to meet a talking doctor too. Our goal was to have Arjun talk with someone along with us so that we could understand how he felt and he could realize that we felt the same way and that he wasn't alone.

She played a card game with us and made all of us very comfortable. When we got home Amaey asked if he liked his talking doctor and Arjun being Arjun just raised his shoulders and said... I guess.

We know how hard this is for us and cannot imagine what Arjun must be thinking or going through. I'm sure he is not thinking about this all the time but when he hears us talking on the phone, or talking amongst ourselves, or discussing with doctors, I'm sure it worries him because he doesn't understand everything.

Sunday, June 05, 2011

June 4

Either Apurva or I are always with Amaey when he is in the hospital. We have had family and friends stop by and spend time with us but one of us is always there.
Yesterday was a different day, it was Cars 2 premiere and cast and crew screening. Apurva has worked really hard on this movie and I so wanted him to be there, this was his big day. He refused to go if I did not go with him. The screening is usually a thank you for the spouse/partner. He really wanted me to be there.

My sister was supposed to stay with Amaey and Arjun was supposed to be gone for an activity and sleepover.
Pratisha nd Bharvi were supposed to come to the hospital later so that there were enough adults with Amaey.
However, Arjun woke up with a headache and sore throat and here I was already uncomfortable going away in the evening. We decided that Arjun had to stay home and rest and my sister had to stay with him.  At the hospital it was a different story, they had a floater nurse and I was getting very uncomfortable with the fact that Amaey was to get chemo and she did not have all the answers for me.
Long story short, I did manage to take care of everything in the hospital and we did make it to the premiere on time and I'm glad we went because the movie was real fun. I'm really proud of Apurva. We had a lot going on while the movie was in production.  It takes so many years to make these movies and when it is all done the hard work shows. It's a fast paced, action packed, racing movie about cars... now what's not to like about that.

We did not stay for the party, I came back to the hospital and stayed the night after the premiere, it almost felt like I was cinderella, whisked off in a limo in a black gown, with a handsome prince amidst the glitz of the Fox Theater and back in my hospital room before the stroke of 10pm in my flannel jammies.

It felt surreal to be there but we were really glad we were able to celebrate the occasion.

Thursday, June 02, 2011


My sister arrived last night from Florida. It was so nice to see her. She has always been the one to remember birthdays, first one to send you a card, first one to call on your anniversary. A great cook. A warm person. She was always like a mom to me when I was growing up. She got married when I was 8yrs old but I spent all my summers at her house. When she had kids, I would take care of them over summer.
She was the one that put make-up on me and dressed me up for all my school plays and dances.

I just feel so relaxed that she is here. Amaey was so happy to see her at the hospital today. When she was leaving he didn't really want her to go. And I know at home Arjun and Apurva are getting spoilt too. She is just such a giving person and she does it all so quietly, I was always amazed by her when I was growing up.

Both the boys got to spend a lot of time with her in Florida when we went for her daughters wedding. They got to see all my siblings. All 6 of us got to be there and connect. So glad Amaey could attend the wedding, meet family, go to Disneyland, visit the new Harry Potter land.

Right now Amaey is being a total techie geek. He is is on skype with Christopher and they are playing Lego Universe together. It's really cute, he is propped up on his bed and lost in his world.