Saturday, July 30, 2011

Day 4

Lot more pain today. It's hard for him at night and they had to increase his pain meds dose.
This morning when I came in he was quite blah. A shower helped. However they needed to change his dressing and he does not like that. They also benadryled him for Platelet transfusion so he was out of it. After all that activity he fell asleep so that might help him.

Apurva had a brilliant idea of putting up 1 crane for each day post transplant, by day 100 our room is going to look beautiful.

Arjun has company at home now with my sister Mona her son Akhil and apurva's sister Swati. They went to see cowboy v/s aliens last night and today he has an event at his music school. Someone usually brings him here in the evening but today Amaey did not want anyone to stop by because he finds Arjun too energetic at the moment.

Friday, July 29, 2011

Day 3

Over the last 3 days Amaey is holding up well. He is developing mucositis which is something they had warned us about. Mucositis lines the gastrointestinal area so from his mouth, tongue, throat, the food pipe, and the intestines, all get flared up and it makes it very uncomfortable to swallow.

They give the patients a buzzer to manage their own pain. They can press the buzzer and a small dose of pain medicine is released. Right now he is only using it before eating. However, last night he needed it at 4am because his mouth and legs were hurting.

Otherwise, he is in good spirits and enjoying his new toy... slr camera. He has been trigger happy and shooting everyone that walks through the door and everything in his room. I think he will become a good photographer by the time he is out of here.

Tuesday, July 26, 2011

Day 0

Amaey had his transplant at 11:30am!!

Apurva and I were in the room along with 2 doctors and 3 nurses.

They drained down every bit of the stem cells. As soon as the stem cells were draining out of the bag the room got really quiet and suddenly Amaey started clapping as he saw the last drop emptying out of the tube and heading towards him and then disappearing inside him. That was a really good ice breaker. The whole room started applauding. In a few minutes though he started getting a headache and then the headache became more painful and his blood pressure went up. The blood pressure kept rising and all of a sudden he was in excruciating pain and started screaming. We tried cold and hot compress, pressing his head, singing to him, chanting in peace but his pain was very high, they got him morphine, still no effect, they got him hi-blood pressure medicine and he threw up. After what seemed like an eternity but lasted 30 mins, and more morphine later, he slowed down and rested.

Swati and Arjun were here and Amaey hugged and kissed Arjun when he was feeling better.

Since 3pm he is doing fine, sitting up and sipping some lemon Ginger tea.

Our O positive child will slowly B positive because the donor is B+ blood type.

Thank you donor for your generosity! We are truly indebted to you young man, whoever you are and wherever you are.

As Amaey and Arjun's Yoda would say, beginning this is just, my young Jedi!

Monday, July 25, 2011


Today was rest day.
No chemo, radiation, nothing.
Amaey made the most of it. At 11 when the doctors came for their rounds he played his piano for them. Later his 2 nurses got a performance too. Arjun and Swati came in the evening and he built his Lego heroes, played playstation, and had fun.

He wanted food from Daphne's so we got all him that. Apurva said he enjoyed the day and was content.

What is BMT

Bone Marrow transplant day is the most anti-climatic day, so say the doctors and nurses.

The donor marrow has already been harvested and ready to go. On the 26th he will get the marrow through an ivy just like a blood transfusion. It usually lasts 2+ hours based on the body weight.

A lot of activity will go on with doctors and nurses coming in and monitoring him. Everyone will have to start wearing a gown and mask and cover their shoes with booties before entering his room.

At this moment we feel like we are at the edge of the cliff and are about to fall off into the abyss. When you are doing your 2 min scrub before entering the stem cell unit you tend to meet parents from the unit and get some good advice too. From everything we hear it seems like we are in for a hell of a  rollercoaster ride.
Amaey told me tonight that he is nervous and anxious about his transplant. He said the word transplant is very strange. I asked him to tell me more but he just said that it makes him nervous that's all. He is counting days to his transplant. I wonder what else is going in his head. Wonder what he is thinking.

Sunday, July 24, 2011

Day -3 and 2

Amaey got hi-dose chemo for these two days and a lot of hydration to go with it. He seemed to have tolerated it fine. Lot more nausea and tiredness but he managed to play on his keyboard and read, and see some friends.

His appetite is low and we are trying hard to make him what he desires. He will go on a very strict food regiment after transplant so we are trying to get him food from all his favorite restaurants.

With all the metal taste in his mouth he is not really finding anything appetizing but he is trying.

He is sleeping now and had a big smile on his face when he said goodnight.

Some photos

The boys

Photo of the radiation booth from the monitoring room.

Zen Amaey ready to take off in his radiation harness.

Amaey drawing with a volunteer in is room.

Friday, July 22, 2011

Saturday July 16

Amaey's b'day is as such on august 4th but we had a feeling that he might be in the hospital around that time. Since 18th was the deciding day we decided to celebrate his b'day on the 16th.

All he wanted was a BBQ by Apurva, his two buddies- Gabriel and Christopher (we couldn't have invited more kids because of the upcoming hospital stay), a strawberry cake from whole foods and decorations with balloons.
I really wanted artist Morris to work with the boys as a memory of that day. Davina and Maureen handled everything because it was a very last minute party. I decided at 11pm on Friday once Amaey was home from the hospital and safely in bed. I knew he would be home with us the next day.

Morris Came up with an amazing project, 4 puzzle pieces that each kid could create in their own way and then it could all be put together as one. How ingenious is that.
It was really wonderful to see Amaey happy and enjoying himself.

On Sunday we had artist Neta over, she brought a big canvas for the 4 of us as a family to work on. We all painted our own colors to fill up the canvas and then we colored our own images and did some collage. It looked beautiful. Neta is an amazing artist, she is so calm, so artistic, had a lot of positive energy. The two hours we spent as a family creating our masterpiece was super special.

We still have all the decorations up in the house, Arjun won't let us take them down, he says it reminds him of Amaey.

Day -4

This morning was a hustle, amaey wanted butternut squash soup for lunch and informed me about that at 10pm. I was quite tired so i did not feel like going grocery shopping. Hit trader joes at 9am and whipped up the soup while Swati took his breakfast, dropped arjun to planet granite and drove to the hospital.

Last day of radiation (xrt). Apurva took him at 7:30am and I made it here in time for the finale at 11:30. Rudolfo, the xrt tech had another rap ready for Amaey. Once Amaey changed into his gown, put on the harness, stood in the xrt booth, and they placed his lung protector plates, we all left the room.

There is a tv screen where we can see him and a two way transmitter for communication. Rudolfo started his rap and it was so good that he had to do it again. 3 mins were left and then I just chatted with Amaey and we counted down the last 22 seconds.

There is construction at the hospital so we have to wheel him via the courtyard and he really wanted to spend a few minutes outside. So we cheated and stayed out for a bit.

Back in the room he had a sponge bath, ate his lunch and finished reading his last Fablehaven book. He was planning to nap when a volunteer stopped by. Amaey and she did some art, playdoh, and piano. He was so happy and tired when she left. He is napping and has planned to do some spin art when he wakes up.

Amaey woke up a bit sad, he kept asking for Arjun, when is he coming, why is he not hear. I tried to do some sand art with him but he wasn't into it. He is on dexamethasone so he was really hungry and moody. He tried to watch a movie, switched to tv show, back to movie, and then he went and cuddled his bunny in bed. He was just blah.

I was really proud of him though because he tried to get out of his funk and asked me to do some work on the NASA site. When Brian Day from NASA had stopped by he had told Amaey about and, here you can be a citizen scientist, he worked on that a bit and then luckily Arjun was here.... Then I was no longer needed.
Both the boys are playing a new game on the PS3 and after dinner, Arjun gets to go back with Swati and watch captain America. Apurva is taking a break today.

Rudolfo's rap

Go Amaey go amae it's your b'day it's your b'day
We gonna show them how we do it our way
Keep still like a statue please don't move
It's only seven minutes in that booth
I'm rapping for you in this groove
What's 9 times 9 I think its 81
Six more minutes and then we are done
I know I can't sing but I can rap
Right now it's the front side and then the back
A few more minutes and then it's a wrap
So don't move stay still let's chill I said please
You're on the camera so smile and say cheese
There's plenty of fish in the sea and you're the only one we catch and see
After this is done we can rest and go to sleep
Close our eyes and count some sheep
I know you are tired and so are we
Then when this is all done nap time please
Achoo excuse me but I did not sneeze
I'm tired of this I want my PS3
What's your game anything will do
Let's play some games me and you
We can watch a movie on the iPad
Don't get mad get glad
Or play some apps that nobody has
We are all so happy all of us hear
To help you Amaey have no fear

Thursday, July 21, 2011

Day -5

Radiation 3 times and today we decided to make the 7 mins fly by. We decided to sing to Amaey while he was being beamed. The transport nurse that walked us there was Mary so we had her sing first and she was such a sport, she sang Mary had a little lamb. Swati hummed some awesome tunes, and we sang Christmas carols, yup Christmas in July. Before we knew his 7 mins were up.
He wore his mask, hoped on his ivy pole and zoomed his way back to his room.

Apurva took Amaey for the 3:30 xrt and told me that one of the xrt techs made a rap for Amaey, he has taped it and I will post it when I have some time.

Gabriel stopped by with Davina and Arjun, Swati, and I took a break. We went to the Lego store and then to chevy's for dinner.
Apurva said that Amaey had a blast with Gabe and when I called at 10, he was fast asleep.

Wednesday, July 20, 2011

No title

This morning I got a call from a mom I got to know through Kids&Art. Her son participated in the Pixar art workshop. He is an amazing artist and a really good photographer. It was so nice to see him take his own time and work with artist Rinat. Later we stayed in touch. I really wanted to do an exhibit of his photographs. He told me that he would like Kids&Art to get all his work so that we can auction it off.

Just few weeks ago I met him at the hospital and when he found out that Amaey was a BMT candidate he said, from his wheelchair, please let me know if I can do anything for him, talk with him, share, encourage, this was the hardest thing I went through in my life. I was so touched, here is a teenager, so week and feeling sick but so big hearted to help another child going through a journey like his.

This morning I found out that he had passed away in the ICU on Monday. It was hard. It was really hard. I cannot imagine what a parent goes through and I just could not get myself together. His funeral was today at 1:30 and I really wanted to be there. I haven't had the courage to go to any of the funerals thus far. I couldn't look myself in the eye of the parent, but today I had to go and hug her.

When I saw her she said that he was working on a painting of a sunset and then he started a painting of a broken heart... As if he was expressing his feelings. She thanked K&A for getting him started with his art. Just 2 weeks ago he set up his website because the artist Rinat had encouraged him to.

His mom said he was very peaceful and as per his wishes they will take his ashes and spread them over the Colorado mountains since he was from Denver.

Day -6

Today's radiation schedule was the same. We just got done and are back in the room. Amaey is watching I-Carly and laughing away. I brought his keyboard from home and he played some music for the PT. He likes her, he showed her some of his karate moves and such.

Seems like fatigue is already setting in. He is feeling tired and slow as the day goes on. We played some frisbee and table tennis on the iPad and made a few art puzzles. This seems to have made him a bit happy. Now he is just waiting for Arjun... I can tell.

Family will come in the evening with dinner and that will cheer him up.

Day -7

Tuesday was considered first day of the BMT process.
Amaey had radiation at 7:30am, 11:30am, and then at 3:30 pm.
Later his talking doctor stopped by, nutritionist chatted with Apurva, and his physical therapist stopped by but he had a huge headache at that time so she left. Swati, Arjun, and I stopped by at 7pm with dinner and then we left at 9pm.

All in all a good day.

Tuesday, July 19, 2011

Trying to understand the meaning of life

I have been craving spiritual guidance since Amaey's recent relapse. I feel used and wiped clean of thinking and planning and doing anything. I have been craving some spiritual guidance. I downloaded the Bhagwad Gita on my iPad. This is an excerpt version of the big book but it is just the right amount of words for me right now.

Something I read today is what I need to keep telling myself--
"You have a right to perform your prescribed duty, but you are not entitled to the fruits of action. Never consider yourself the cause of the results of your activities, and never be attached to not doing your duty."

As a parent, especially a mom, I have wondered what I might have done wrong to have my child suffer in this way. I wondered where I failed as a mom. The Gita is teaching me to perform my duty as a mom and not do it for the outcome. This is hard because the outcome is what keeps you going. The hope that Amaey will get out of this vicious cycle, the hope of getting cured, the hope for a better life. How does one selflessly parent without hoping for the best for the child?

Monday, July 18, 2011

This is it!

Amaey had his CT done this morning and the doctors confirmed that it looked good and have okayed him for his transplant. We have checked into our final destination, the Stem cell unit.
Tomorrow Amaey starts full body radiation starting at 7:30am.
We will know more details soon.

We are scrubbing down everything that comes in this room. We have to wear booties and do a detailed hand scrub before entering the unit.

There is a really nice big window and the sun is pouring in and beaming the entire room with warm light. We will be spending 6-8weeks in here. They gave me a 30day parking pass... This must really be it huh?

This is it.... Wish us luck.

Thursday, July 07, 2011

Do you really want to know

Another crazy day at the hospital. Another plan of action. Wow, when will this stop?

Today Amaey had another CT for his sinus and chest and then we went for labs after which was his procedure at 12:30, they finally took him in at 2:30. They took out his port and picc line and placed a new line called hickman, this is what they need before going in for BMT.
They also did a bronchoscopy to flush the spot in his lung. They will do a culture and the results take 7-10 days if there is soethi g brewing. He did not come into the recovery room until 6:00. He is home now, very groggy and slow and in pain from the various procedures but relaxed to be back.

As of today his BMT schedule has changed, he will get admitted tomorrow for some medications and radiation and if he tolerates that well they will let him continue as out patient for the next 2 weeks. Transplant will not take place until they do another CT after 2 weeks and check his lungs again. They need the spot to remain the same or get smaller before they can proceed. They need to rule out a fungal infection. Because that is life threatening after BMT.

So more waiting and uncertainty but some movement to help him with his skin rash and possible lung infection.

Wednesday, July 06, 2011

Moving forward

We know that everyone is waiting anxiously to know whether Amaey has found a donor match, we just got final confirmation that they have found a match for Amaey and they will be going ahead with an unrelated donor instead of Apurva or myself. The donor is a young male from the US, that is all the info they can share with us. After a year if the donor initiates it we can meet but until then it will be a secret to us.

We are really thankful to everyone for helping with the donor drives and adding to the pool of donors. We would really like to thank Davina, Maureen, Helen, Purvi-Samir and Renu-Sunil for helping with the drives. I know there were many people involved and all the names are not coming to me at the moment. A special thank you to Ezra for sending Amaey a video a day. These videos mean a lot to us, for Amaey he does not understand what the fuss is about and we do not plan to explain.

We cannot thank Magda enough, thanks to her all the drives were expedited and who knows, Amaey's donor might be from one of those drives. We really cannot thank everyone enough. Without disturbing us and respecting eveeything we were going through, our friends took on this momentous task and spent several days and weeks in putting all the drives together.

Thank you to everyone for calling and stopping by and reaching out to us in several ways. We are going to get really busy now. I know we have not been talking and sharing a lot but let me be honest, it is really hard to do so. Over the past 2 months since Amaey relapsed, we have gone through an eternity of information and many life changing decisions, these are very hard to express and very hard to talk over the phone or skype. We are so tired sometimes that having a conversation or explaing what is going on feels like a chore.

If everything goes as planned, he will be admitted to the hospital on July 11 and will undergo his transplant on the 18th. He will have 4 days of radiation then 2 days of chemo and 1 day of rest followed by transplant.

The path ahead is long, hard, complicated, and full of risks but this is Amaey's only chance. This is the chance for a second life, for a fresh start. We don't know what lays ahead but we do know that we will never forget where we are coming from. It's been 6 years since Amaey was first diagnosed and he has been through many rounds of chemo, transfusions, procedures, and ICU visits.

The BMT journey is new and unlike anything he has gone through, we know he is a tough child and a fighter. We will be with him all the way, all the time and we will be waiting for him at the end of the tunnel and we pray that he will make it through.

Monday, July 04, 2011

The best B'day

I could not have wished for a better birthday present for me. Amaey was feeling well, he was so happy and engaged. He had the energy to talk and run around and be himself.
Apurva made an amazing breakfast and later we had a picnic lunch in our backyard with fajitas and mango salsa courtesy of chef Apurva. It was so calm and quiet in the yard, it almost felt normal. The four of us by ourselves, not taking about Amaey, listening to the kids chatter, having a normal family conversation, reveling in the beauty of the big trees and the shade that kept us cozy and the amazing lunch that made us all sleepy.
A wonderful nap and then surprise visit from Rita and Sid. Amaey was so happy to see Sid, he hadn't seen him in almost 2 months and that is the longest ever. We always try and get together but with life so busy and our germ radar so amped up we have tried to not have guests over especially kids because germs and infections are the biggest risks for Amaey. Kids are kids, they touch everything, their clothes have been everywhere, and they will not think twice before fist fighting, or arm wrestling with Amaey. So getting to see Sid and play with him was icing on the cake for Amaey's normal day.

Top the day with Pratish, Bharvi, Ashish, and Aditi stopping by and we had the making of a next to normal day.
We did start panicking when everyone started overlapping though. We have tried to limit 1 guest at a time and suddenly we had all these people... I could see Apurva getting very nervous. We were fine if everyone stayed away from Amaey so we all moved to the yard and enjoyed some fun times there. It got really sad when Amey realized that there were so many people outside and that little Adi and Raj uncle were out there playing as well. Amaey loves Adi and he was about to dash out the door to go hug him and we had to pull the plug. It was heartbreaking because Amaey was really sad and started crying. That was a wake-up call that things are not that normal, we can't let our guards down. We have been so careful and it would be such a shame if he caught an infection during his most critical week.

However, it was a beautiful day with love and wishes pouring in from everywhere. It was a happy day and now that it is Monday we are hoping we can stretch the long weekend so that we don't have to deal with what the week has to bring.

The best part was that the four of us were home, happy, and relaxed.

Sunday, July 03, 2011

Good, bad and the ugly

Last week has been quite a week for us. Just when you think what can be worse... you end up finding that the bets are higher on everything.
This journey has taught us one thing for sure... do not take anything for granted.

On Friday, Amaey and I went in the hospital at 6:30am for his MRI, CT scan, and x-rays. They wanted the results back before our BMT meeting at 1:15. They also decided to start Amaey on a consolidation chemo to bridge the gap from now until his transplant, so after all the scans we went to the clinic for the chemo. At 12:15 I dropped Amaey home and then Apurva and I left for the hospital for our BMT consent meeting.

Yesterday Sheila had stopped by and while talking with her I realized that we need to be grateful for the fact that one of us could be a potential donor for Amaey. But it is really hard for us to think that way. When you sit through those BMT meetings you come out of there not knowing which way to turn. Our last meeting was a consent meeting, in this meeting they went over all the results for the tests Amaey has been through, they found an infection in his sinus and an infection brewing in his lungs. They started him on antibiotics for both. They will need to repeat his CTscan next Thursday to see if the infection is growing or contained.

He is also allergic to one of the antibiotics he has been getting, Vancomycin. He gets Benadryl with it however we noticed that he had some spots showing up on his body while he was getting vanco at home. We have been watching those spots for a week and on Friday the doctors asked for the dermatologist to see Amaey, while we were at the BMT consult meeting Aditi brought Amaey and Arjun to dermatology. The derms decided to do a biopsy on two of his spots so Apurva left the meeting as soon as it ended and ran over to Amaey across from the hospital. I stayed behind to wrap-up the meeting and sign some research papers. Amaey's oncology doctor stopped by an hour later to see if we were still in the consultation room and I was, I asked him why he decided on the biopsy and he said he is worried that leukemic cells could be showing up in his skin.... WHAT? You really got to be kidding right? If there is no cancer showing in his MRD and he is considered in remission how can there still be leukemic cells?

I just looked at him and said, what if... well we would need to meet and rethink the next steps if that were the case. The biopsy results will be back on Thursday so we will know more then.
I decided to not give it too much thought, take it in our stride and move on with the one day at a time mantra we have been following. Bring it on... seriously, just bring it all on now, so that if and when the BMT happens we will hopefully have thought of everything and will know what to expect in terms of recurrence. We might be living in sunny California but on our house the weather changes every few hours, never know when the calm changes into a storm or a scary tsunami.

Juices for health

Amaey has a sty and I was looking for some home remedies and came across this-

Acidosis: Carrot, beet, cucumber and spinach 
Acne: Carrot, lettuce and spinach 
Allergies: Carrot, lettuce and spinach 
Anemia: Beet, celery, carrot 
Appendicitis: Carrot, beet and spinach 
Arterioscurosis: Carrot, celery, lettuce and spinach 
Vegetable juice and arthritis: Cucumber, beet, celery, carrot and watercress 
Asthma: Carrot, radish and celery 
Bronchitis: Tomato, carrot, onion and spinach 
Colds: Carrot, celery, onion and spinach 
Constipation: Carrot, beet, spinach and watercress 
Colitis: Carrot, beet cucumber and spinach 
Vegetable juice for diabetics: Carrot, celery, lettuce and spinach 
Dyspepsia: Carrot, beet, cucumber and spinach 
Eczema: Carrot, spinach, cucumber and beet 
Epilepsy: Carrot, celery and spinach 
Eye disorder: Tomato, carrot, celery, parsley and spinach 
Fatigue: Carrot, spinach, beet and cucumber 
Gout: Tomato, cucumber, beet, carrot, celery, spinach 
Headache: Carrot, lettuce and spinach 
Heart disease: Carrot, beet, cucumber and spinach 
Hypertension: Carrot, spinach, beet and cucumber 
Influenza: Carrot, onion and spinach 
Insomnia: Lettuce, carrot and celery 
Jaundice: Carrot, celery, spinach, beet and cucumber 
Obesity: Tomato, beet, cabbage, lettuce, spinach and carrot 
Piles: Carrot, spinach, turnip, and watercress 
Sinus problem: Tomato, carrot, onion and spinach 
Tonsillitis: Carrot, spinach, beet and cucumber

I got this info from 
sometimes it is hard to know if the source of info is good so common sense and cross checking helps. I did look up other sites for sty remedy and i'm fine with the tea bags on the eye.... I will do it.