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.

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.

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 http://www.herbal-home-remedies.com/index.html 
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.

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.

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.

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.

Neuro

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.

Future

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.

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!

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.

Today

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.

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...

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.

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.

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.

Family

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.

May 30

Today is a better day. It looks bright and sunny outside, I will wake Amaey up so that he can have his breakfast and then make the most of the sun. We will go by the fountain and do a project and wait for Apurva and Arjun.


Apurva and Arjun brought a wonderful lunch and we sat outside by the fountain and ate beans on toast, salad, chips. Now Amaey is tired so he is reading in his bed. Arjun is doing his homework with Apurva and then we will change guards, Apurva will stay and I will leave to go home with Arjun.


In the evening, Arjun and I walked down to Davina's  house. I am trying to take a walk with Arjun after I come home from the hospital. I have all these expectations that we will talk, and he will tell me what is going on in his life and I will feel like I can catch-up with him but I now understand that he is growing up. He likes to talk at his pace and in his own way. Just because I'm home and now I'm focusing on him does not really mean he looks at it that way too. I was so frustrated after our last walk and I got really upset at him for not wanting to talk. Yesterday I decided to not ask him anything, instead I just started doing my fast paced walk and challenged him to keep up with me. He was playing on his iTouch so he kept slowing down and I kept getting ahead of him, and then he would run and catch-up. We did that all the way back to the house and when we got home he said he had a good time. 


I felt so good. I guess, for him going for a walk does not mean he has the need to talk. All he wants to do or is looking forward to is to be with me. Maybe that is enough. I should learn to take his cue and be happy with that. 

All I need is a friend

Amaey has been really down. His mood swings from getting comfortable to not trying to get too comfortable to just get me out of here. Especially when the weekend is around and if it is long weekend then it is even harder.

Apurva thought that it might be ok for Amaey to see his buddies for a short visit. Lots of doctors and nurses keep coming in the room, the food people, the cleaning crew, playroom staff, library volunteer... all these people come in and out so since he is not in isolation maybe he can see his friends.
Christopher stopped by on Saturday. They were so cute together. Amaey showed him the bed, the fancy bed that can go quite high up, the headrest and legs can change to different angles too. Amaey bought a new game on his iTouch so they played with that. It was beautiful outside so Apurva took the boys by the fountain and that was really the icing on the cake.

On Sunday Gabriel stopped by, Amaey had just woken up from his nap and he was a bit slow but seeing his friend brought a big smile on his face. The two of them played with different things, tried to build an erector set, kaboodle puzzles, iTouch, and chatted the whole time. It was really cute to hear them talk. At home when they have a playdate these kids talk like old men... yaketying away non-stop and it is really cute to just listen to that chatter.

Last night before he went to sleep, Amaey told me what he planned to do the next morning after he woke up. Wow, that has not happened in a while. I was so happy to see that he was looking forward to the next day. We think these little moments of friendship are really important for Amaey. That is his connection to his real world. These little faces and voices are his world, he belongs there and if he his not in isolation and his friends are not sick I'm sure we will arrange some playtime for him whenever possible.

Prayers

I was making tea in the hospital kitchen and said hello to a dad who was warming up something in the microwave. We exchanged greetings and he told me that they have been in here for 4.5months at a stretch. My heart just sank. Their 17 year old son was diagnosed with AML but they can't find a donor match because his wife is asian. His wife has not left the hospital at all.

Being a parent is a challenge but putting parents up to this kind of a test is not fair. Science is amazing that we can do something called a bone marrow transplant. Can you imagine what it must have been before BMT? We are all at the mercy of these good samaritan donors, if it weren't for them... I can't really imagine the situation.

I just pray that some new scientific advances are made. Sometimes science can cause miracles and that is what we all need at times like these... miracles.

Meet Dauno and Ida

Day 22 was fine. They did a bone marrow aspirate, an LP and a bone marrow biopsy on Amaey because his counts were really low and they were worried that they would not get good marrow just from the aspirate.
He recovered fine and luckily did not get a  fever after the procedures.
Amaey is in partial remission so they started his 2nd induction on Friday as planned. For this round, he will get 3 days of oral meds and 8 days of chemo. His count will be wiped out so he won't be able to go home until he recovers.

Friday was the craziest day in the hospital, as I was giving Amaey a shower Dr. Dahl stopped by and told me that there was a slight kink, the drug Daunorubicin that Amaey was supposed to start getting was unavailable. I was like, what do you mean unavailable? What does that mean? How is that possible? He said there was nothing to worry about, they are thinking about giving him an alternative drug Idarubicin. As soon as Amaey was dressed, I started researching for these two drugs to find out if Ida was as good as Dauno. I called my sister-in-law right away, called Davina to look into these two drugs. I saw that he would be more immunosuppressed with this drug otherwise it wasn't very different form Dauno. In fact Dauno was harder on the heart.
While I'm still researching all this, another attending stopped by to ask me to sign that we were ok with Amaey getting Ida instead of Dauno. I hadn't done all my research and hadn't heard back from everyone so I asked to sit on it for a while.

Then Amaey's doctor Dr. Wei stopped by to talk about all this and while we were talking he told me that if Amaey got Ida he would potentially drop out of the protocol. I think my tiger mom instincts were flared at that. I couldn't believe it that the previous two doctors failed to tell me about this main fact. I couldn't believe that after making such a big deal about Etoposide and how we needed to give that if we wanted to continue on the protocol and all that nonsense.
I asked Dr. Wei, why they did not save this drug for Amaey if he is so high risk and they new 3 weeks ago that he was supposed to get it.
Long story short, within 2 hrs of time a huge web was cast from the hospital room to Sunnyvale, Detroit, New York, and Canada. People were frantically looking for this medicine because we said that either an amendment needs to be made in the protocol or we need to get this drug.
While we are going through this search it was so exhausting. Not something a parent should be worrying about. My sister-in-law found 2 hospitals that had the drug, we passed the info to Dr. Wei. Saturday around 2:30pm we finally get an email from Dr. Wei that the drug has been shipped to out hospital from Children's hospital in Boston.

I felt so relaxed suddenly, did not realize how tensed and upset I was. The big deal about staying on the protocol is the option to get something called a NK cell transfer for Amaey. For this procedure they take the worst of the parents blood match and then do the BMT.
All of this is a trial, what Amaey has is very rare but if there is anything out there that can help his chances, we will do it all.

Checked into our hotel

Amaey and I came in on Monday for his routine labs and possible transfusion but Amaey spiked a fever so they admitted him.  He was in isolation but his tests for infection came back negative so he was really happy to sit by the fountain when Apurva and Arjun stopped by. His fever comes and goes but he is really happy today. His appetite is not back but he seems content.

My parents left for India today, did not want to tell them about Amaey's fever. They are feeling really bad that they could not stay longer and be more helpful. Last time he was in the hospital I did not realize much because when we would go home food was always ready. Dishes were loaded in the dishwasher, laundry done and folded. Late last night when I went home it felt too quiet.

When they were around I would keep fighting with them because they did too much, they never sat down and never let me do anything. Felt a bit much. But I so appreciate everything they do.
Next week my sister from Orlando will be with us for 2 weeks. We might be in the hospital around that time for Amaey's second induction so it will be very helpful for us. Arjun will also have finals, talent show, and graduation around that time so extra hands and feet will be great.

My friend dropped off color explosion 3D for Amaey and he loves it. He really gets into it and it makes him really happy. Today we spent a lot of time looking for piano music on amazon. I heard a snippet of Omar Sossa's new CD and I wanted Amaey to hear it, it was fun to see his expressions.

Tomorrow is day 22 and he has a procedure. The results will dictate the next step in his treatment. They do not expect for him to be in remission but we do hope he is. If he is not in remission they will start his 2nd induction chemo right away. Otherwise he will get a week off and then they will start the chemo at a much smaller dose. They plan to take him first thing in the morning. The procedure tires him out and it is painful too so he does spike a fever so I have a feeling we will be here for a while. Well... we knew it wasn't going to be easy.

I'm so MAD

I'm so mad... finally I'm MAD. Not something we bargained for when we got into this. When I read the blue bar of this blog that says that what Amaey initially had was the best kind of cancer I could have shopped for... it seems like a sick joke. Feel somebody has been incompetent... is it the doctors, the protocol makers, the drugs, or god himself.

I just had a consult with one of Amaey's docs and we were going over the next phase of possible treatments based on what comes out from his day 22 results. When he mentioned giving Amaey Etoposide again, I really flipped. I think my calm left the doorway and the mad mom came in me. Wasn't this drug the cause of his secondary relapse? So how come you are willing to give it to him again? There is no plan B?

I'm told that they are not worried because their goal is to completely wipe out his marrow with chemo, radiation, and more chemo so when he gets a stem cell transplant there should be no problem. BUT he is in the 3% people to get this kind of relapse. This is RARE. And I have heard that a person can relapse even after a transplant so how can you tell me with a straight face that that won't happen to Amaey. This drug might be fine for some patients but it is clearly not for Amaey so why are you blindly following the protocol and not looking for an alternative?

All of this sucks... I hate not being in control of all these decisions. I hate feeling so helpless.  We don't understand the meds that well so we have to follow the trials and the paths they have tried but what happens when the paths they have taken have not always proved to be successful?

At home

This week on Monday Amaey needed a blood transfusion, on Wednesday we had a nice surprise and he came home right after his labs, he did not need any transfusions. His WBC went up from .1 to .2 also. And today, Friday, he needed a platelet transfusion so he hung on to his hemoglobin which is wonderful. His WBC is up to .6 today.

For us the fact that he comes home is more important then anything else. Because every time one of us takes him we know in our mind that we might have to stay back.

Curcumin

As we embark on a more holistic approach to Amaey's relapse we are learning about many supplements. One that stands out most is called Curcumin, it is derived from Turmeric.

There is some fascinating research done on this-
http://nccam.nih.gov/health/turmeric/ataglance.htm#cautions

http://www.wtsp.com/news/local/story.aspx?storyid=117578

http://www.healthyindiandiet.com/dr-aggarwal.html

http://www.curcumin.co.nz/introduction-to-curcumin.htm

Friends

Apurva and I are overwhelmed with the way our friends have taken over the entire marrow drive. We had no idea about the drive until yesterday and it already has so much momentum. With friends like ours, we have to succeed. We have to get through this.

We know that our families are trying several drives in So. Cal, NJ, and London too. Amaey is truly blessed.

Thank you everyone for your support.

Status

We have to take Amaey to the hospital on M-W-F so that they can check his levels and labs. I took him on Wednesday and they needed to do a platelet transfusion and today Apurva took him in. He needed a blood transfusion but otherwise his numbers are stable, they are low but stable and that is good.

We had a nutritionist stop by and she cooked some very healthy meals for us. She is trained under Rebecca Katz and I really like her book Cancer fighting Kitchen.

My parents are visiting just for fun but seems to be here at the most crucial time for us. However they will be leaving on the 19th. We haven't really sat down and charted out a plan for summer yet. We were planning to travel this summer so we did not sign Arjun for any camps. Apurva and I have decided to keep it that way, we think it will be great for us to spend time together even if we are in the hospital sibling is allowed so that should work out.

Apurva has taken time off work right now and just goes in when he can. My teaching semester ends in 2 weeks so I will be completely free too.

Amaey is making me an avid Star Wars 3 player on the PS3. Whenever he wants to get more studs he asks me to play... he is really proud of me, he told Arjun that I haven't died in the game and in fact I win lots of studs. Brownie points for mom!

Thank You

We want to thank all our family and friends for their love and positive wishes. We know that there are so many of them thinking and praying for Amaey. We know that everyone is sending healthy wishes our way.

Thank you for stopping by, calling, emailing. Thank you for reaching out. Thank you for being there. We can't do this without all of you.

I remember telling my sister that I have lost my faith after this. But with each passing day I realize that I can't loose my faith, faith is all I have to hang on to. My faith in myself, my family, my friends, is all I have. I truly believe that there is a higher power somewhere, I don't know what games get played and why some people have to suffer so much but I do hope that with the challenges that are thrown our way we will also be shown paths to overcome them.

When we had our first meeting with the transplant team I was left feeling like I was in a Harry Potter like maze game, whichever path we would choose would have more difficulties at the end of the bend. However, I had a silly sense of calm, a naive hope that we will get through it... how? I have no idea.

Home

We got to come home last night.
Amaey's counts are still low and he will need transfusions soon but he does not have a fever so they wanted him to be home rather than in the hospital and catch something there.

We were more then happy to leave. We were told to sit tight for a month so this came as a huge surprise. Today has been wonderful. Just so nice to see Amaey happy in his own house. Sitting and reading on the sofa, spending hours on the kitchen table with his comics and nursing his food. Playing his piano, watching TV, chatting with everyone on the phone, fighting with his brother over everything, doing normal things that one wouldn't think too much about but we know that they are very precious.

Tomorrow he has to go to the clinic for labs and check-up. They want to see him 3 times in the week.

My brother was talking with Amaey over the phone and after his conversation he said we all have to learn something from him, he sounds like nothing has happened, he is so content and happy, in his place we would have curled up in bed and wallowed in our misery. Being a child is so very precious they have a narrow vision of their world nothing else really matters. It is truly beautiful.

When I went to pick-up Arjun from school his first question was, where is Amaey? When I said that he was at home I could see the big smile on his face that was so pure that for a second I felt that everything will be alright.

Resources

We know that everyone is worried about the transplant process and about the relapse. Here are a few links that have more info if anyone is curious-

AML
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Leukaemiaacutemyeloid/AML.aspx

Bone Marrow
http://www.bmtinfonet.org/

Happy Mothers Day

Amaey had a good couple days.

He seems to be himself, accepting, listening, questioning, and contributing.
Tomorrow we meet with the transplant team and get the lay of what is ahead. This is first of many meetings we will have. Tomorrows meeting is focused on the search for donors and how we go about it.

Tonight is day 5 of his chemo. This is the last dose for his 1st induction phase. Now they watch out for side effects like mouth ulcers and watch his kidney and liver function very closely.

If he is stable they might let him go home for a few days. They are always worried about kids staying here too long and then catching something here. If they do let us go it will be on very strict terms of isolation within the house and coming in to clinic every other day. We don't know when or if this will really happen.

Amaey got to chat with one of his buddy's over skype and his other friend briefly stopped by. He was so happy for that. The pain and trauma from the initial news seems to have worn off him and he seems happier.

My sister-in-law left today. She was great moral support for us. Just knowing that she was looking over his protocol and being a sounding board was enough.

Arjun has been coming and spending time too. They built legos and played PS3 games in the room. One of their cousins dropped off their PS3 at the hospital and that has been a life save for Amaey.

Day 3

Amaey was randomized to Clofarabine and Cytarabine and they started his chemo on Tuesday night. He will get these 2 drugs once a day for 5 days and the chemo will last 2hrs each. They started the 1st chemo at 11:30pm and the 2nd at 1:30am. As soon as the chemo started going in I could see that he was restless. He was sleeping and suddenly woke up feeling sweaty. Tried to fall asleep and then started complaining of neck pain which became a shooting back pain added chest pain to that. We asked for tylenol for the pain. I rubbed his back, did some breathing technique and just sat there with him. He suddenly wanted to walk, and then he would sit on the bed and stare. We played with his plasma ball and listened to his musical snow globe and red Ripley's believe it or not at 2:30am.
They finally brought tylenol in and after trying different angles of the bed he finally fell asleep more because he was exhausted.

Next morning however he woke up with a bright smile and ate up the wonderful pecan pancakes with sausages that Apurva and Swati brought from home. Apurva had also bought a new wireless card so that Amaey can play multiplayer games without the hospital's firewall. This made Amaey so happy and connected.

I left to go home and around 2pm they did a procedure on him to place a pic line in his hand and I heard from Apurva that it was a little painful because something was obstructing the tube. They had to have radiology involved and finally they got the line in. They need two access points in his body because his port is used for round the clock hydration while the other line will be used for transfusions and secondary aid. Apurva said the night was relatively easy and they both slept, which is wonderful.

This morning however when I came to the hospital Amaey was very grumpy. The chemo had knocked down all his counts and his hemoglobin was nil and his arm with the pic line was hurting bad on top of that his lego universe game wasn't working.... he was just having a bad bad morning. He cried a lot because he was feeling frustrated and all he wanted to do was go home. He was entangled in lots of wires and probes, nurses kept going in and out, Swati came in from home and after 2 minutes Raj stopped by and Amaey got really mad that everyone was coming in at the same time. He was feeling very overwhelmed. So everyone left the room and stayed outside in the lounge area.

We let the nurse come in after 10 minutes since she had to start his blood transfusion and we made the room dark and comfortable and he finally fell asleep. It took 3 hrs for him to settle down. But when he woke up he had a smile and he asked for food.

It is amazing how much his mood and well being affects us. When he is feeling so low we feel sad that we can't really do anything to help. He is growing up too. When he was little we could distract him with tv, or singing, or some crazy antics but now it is not so easy. It really has to come from him otherwise the change does not take place. Tonight is day 3 of the 5 days of chemo... 

New day New plan

Amaey starts his new chemo treatment today. They have sent his bone marrow and blood samples to St. Jude and once they do a randomization test on him we will have a final protocol to follow.

Whatever is picked, he will be on those very aggressive drugs for 7 days. They have already started pre-medicating him and will continue for 18 hrs straight.

After the 7 days chemo they wait until day 22 and do another bone marrow to check on the blasts.

Based on the results they will either have to give more chemo or if they have a donor he will go for a transplant.

Some hard news

Amaey has relapsed yet again. They call this a chemo induced relapse. His original diagnosis was for ALL but now his relapse is for AML.

The journey ahead is going to be a really hard one. He will have to undergo a marrow transplant too.

He is doing fine and that is a good sign. We are doing fine for the moment too. Arjun is really upset and we have asked the hospital counselor to be involved with him.

There will be lot more hospital stays with this treatment upto 30 days at a stretch sometimes so he will have to stop his school and activities again. We have decided to involve Arjun lot more because he is the only kid that will be allowed in his room at the hospital. 

They consider this a 9 mth to 1 yr long treatment. We don't have more details yet. 

Today they did an EKG  and tomorrow he has to undergo another bone marrow procedure and a cardiogram to check all his baseline levels before starting treatment again.

I just wish there was a hole we could hide in. Take him away somewhere so that none of this really matters. What if we don't go ahead with this treatment? What if we just act like this never happened? 

Amaey has so much to offer to the world, a young scientist, an inventor, a chef... these are his dreams and aspirations. We pray and hope that he can fulfill them someday. We pray that he will come out of this ready to take on the world.

A strange week

Amaey has been a little slow for the past 3 weeks. He has had a cough and cold and he has been a bit tired. None of this stopped him from going to school karate, sleepovers. However, he would need a nap everyday and that was odd. Usually he naps only if he is really wiped out.

They stopped his oral chemo and meds because his platelets were on the low side. We did a chest x-ray to make sure he did not have any lung infection, luckily it was all clear. He had his 5 day challenge and it knocked him down completely. We had not seen him so out of it in a long time. He was miserable, restless, and blah all over. He could not go to school during those days either.

5 day challenge was done with and on Monday we went in for his regular cbc. Usually a nurse calls and gives us his lab results but today I get a call from his doctor and that does not feel good. Amaey's platelets were still low and all the other numbers were petering down too. His doctor told me that he would like to check his bone marrow to rule out a relapse. Since there was no space in the unit the procedure was scheduled for Friday but I insisted and trying to do it sooner if possible. Usually the platelets and the marrow are connected. Apurva and I were very anxious by the news. My parents are with me but I could not tell them anything, did not want them to worry and we did not want the boys to overhear. We definitely did not want Arjun to know. We know he would be worried.

Tuesday night Amaey had a nose bleed and when he went to school the next day his teacher called me and to say that he had another nose bleed, I knew something was wrong. I called the clinic right away and they called me back in a few minutes and asked us to come in for a platelet transfusion.

I was cringing at the thought of being in that hospital room for 3hrs. They did another cbc and this time all his counts were really low.Not feeling good at all at the sight of those numbers. They decide to draw more blood from him to do a chemistry. We were at the hospital from 1:30 and at 6pm his doctor stopped by to talk with me. They had managed to do his procedure on Thursday at 1:45pm. His doctor looked worried but when he looked at the chemistry and the cbc results again he told me that there was a soft hope that all was fine. His Red blood was high and his uric acid had come back normal. He said those were good signs but he really wanted to see his marrow. He also wanted to do a lumbar puncture and look at his spinal fluid incase there was something in there.

Amaey has to fast for these procedures and it is amazing how he does not complain at all. Apurva and I both went for the procedure. We waited in the waiting room while they did his procedure and later took him to the recovery room. It felt like a long wait because we were talking about all the possibilities that lay ahead of us. When they finally called us in the recovery room, Amaey was still sleeping from the anesthesia. His doctor had told us that he will give us preliminary results in an hour after the procedure so when they called us at 5pm we were really panicking. As soon as the doctor walked in the room he has it's all good... it's all good... we were in a shock... we hugged him, which we never do. we were all so relived. When we talked more the doctor told us that he was really worried and had already started looking at relapse protocols. However, he has sent the marrow for few more tests to get a definitive study back but when he looked at the marrow it looked good and he saw some new cells which was positive.

So Friday, we are all happy and getting packed for a very special weekend away. We were invited to go to Skywalker Ranch as a thank you for few families of the Cars 2 team. Until yesterday we had not even thought about this weekend because we had no idea what life had in store for us. We were so glad to be able to go away and celebrate. We had an amazing dinner there and were put up in a wonderfully appointed 2 bedroom villa at the inn. Amaey seemed slow, and had started coughing a lot. After dinner he was very tired so he went back to the room and we stayed behind and mingled with everyone while Arjun was busy with some kids too. Next morning we all enjoyed a lazy start and a wonderful breakfast with all the families. Everyone was meeting back at 11am to go on a hike around the property so we went back to the room to get ready. Amaey looked really slow now so Apurva took his temperature and it was 101.5.  Not good. Usually anything above 101 means emergency. We decided to wait an hour so that things could settle. I took his temp again and it was 102.5. I called the hospital and they asked us to come as soon as we could.

We are in the hospital now and will be here for a few days. Amaey is neutropenic and still coughing a lot. His fever is under control but they need to wait for the cultures to come back and for his numbers to go back up. They have started him on ivy antibiotics too. I'm staying tonight and then Apurva will come tomorrow.

The day away to Skywalker Ranch was magical. We felt like we were gone away for a long time, in a different world where time stops and the world moves slowly. We are so glad that we all got a day of pure relaxation, now at the hospital I'm not as stressed as I would have usually been. Hopefully all will be fine and we will be home in a few days.

Relationships

Amaey was diagnosed in November of 2005, this is 2011. Time does fly, we are in the 6th year of his treatment.
I have seen so many families at the hospital over these years. Some families come in with both sets of parents, grandparents, all kids. Some families come as a single unit. Some come in as a happy family and by the time they are in the thick of it all they have no family left.

Apurva and I have done relatively ok over all these years. After each major setback that Amaey has faced we have reevaluated our relationship and felt happy that we are still stable. It has been really hard but we have managed to keep our ship afloat but the costs have been high.

I was talking with a mom in the hospital whose child relapsed while they were on holiday in the US from India. They could not go back, they had to start from scratch over here. I see her at the hospital all the time and I asked her, do you resent your husband? I said, do you ever feel that your husband just continued his work, luckily he could get a transfer from his work and his life stayed quite stable while you are here in this foreign land adjusting to a whole new reality?
She said, I'm really surprised that you ask this question so honestly, I was resentful when my son was initially diagnosed, felt like nothing changed in my husbands life. He could wake up every morning and leave the house.
I said, it is normal to feel that way, I feel that many times.  However, there is a choice we made as a family for 1 to be a caregiver and the other to earn a living and continue to maintain the insurance and stability.

I have thought about this conversation over and over in my head. I wonder what the main caregiver and the secondary caregiver think about? I wonder what experiences each goes through. I wonder how these experiences shape them as a person. I wonder if their roads meet every now and then or do they trudge along a parallel path over time without really knowing that. Two people with one story that binds them but two completely different goals in life...

3 weeks of hell

3 weeks ago we found out that a stray blast was found in Amaey's spinal tap. It could mean nothing, a fluke, completely random occurrence, OR it could mean a relapse. We had to wait 3 weeks to repeat the test.


The first week went in denial. We did not want to talk about it. We did not want to even entertain the if.
Second week however was hard, Amaey's counts were low, he was neutropenic and the panic set in. He was home the entire week because of his low counts. Seeing him home was a constant reminder of things gone wrong. My stress level went up and I pulled a muscle at the gym and was in bed for 2 days. I understand depression. I understand what people that are depressed feel and go through. I can see how hard it can be to get out of bed, to move and find a reason to wake up and do something with your life. It is a spiral effect, you can just get sucked deeper and deeper into it if you do not have a really strong will power. A strong family and a strong network of friends. Apurva and I decided to go away for the weekend to Sonoma and we came back recharged to take whatever might come our way.
The calm of the weekend lasted for a few days until Friday when Amaey started looking tired. We spent the entire weekend just staring at his face, obsessing about his skin color, the color under his eyes, his energy level, how much food he had eaten or not eaten. By Sunday we felt that something was up...


Today, Monday,  he went in for his spinal tap and we just got the preliminary results, and they were negative. The CSF cell counts for Amaey were normal, with <1 WBC and <1 RBC per high-powered microscope field (normal is between 0-5). 


He is fine. The stray blast was just stray and that is all. This just shows how vulnerable our life is. Any negative test can drive us up the wall. A tiny stray blast has the power to stop us on our tracks. This was so stressful. I hope no one has to go through this in their life.

You are on hold, please wait.

What does it mean to be on hold. I'm not one of those that can ever answer that question. Or I should say I wasn't one of those. For me being on hold was not an option, you did what you felt like, when you felt like it. If it is important to you, you will find a way to do it why should something hold you back.
But being on hold becomes part of your life when you become a cancer parent. You know in India when you would call a government office you would get a  recording that would say, you are in queue please wait. Yup that is how life is for a parent with a child fighting a life threatening disease.
You are given a timeline and you dash to make it through, rushing for the finish line. You put your entire life on hold to make the deadline. When you get to the finish line, suddenly you find out that there is more, the race is not over yet. You pack-up your sandwiches, put on your running shoes and get on track, again. In the meantime life has passed you by. More than half of your child's life has gone by.
You look for the silver lining. The brighter side of life. The meaning beneath all of this. The underlying message.
Funny thing is, this staying on hold business can become part of your life. You can get good at it. You can suddenly carve out a niche by figuring out how to make something out of nothing. You can become a queen at making the most of cancelled plans. You can carve out some memories from nothing. You learn to make the most of rainy days.
Being on hold becomes an alternative lifestyle. You know, like being a hippy. No cares, no time lines, nowhere to go. Just love and your, forever on hold, lifestyle.

Where are we

We are here, trudging along. When the treatment slows down the anxiety amps up. You don't need to be hospitalized, don't need to see the doctors that often, don't have many alarm bells ringing either. BUT restless nights and scary dreams set in.
It is too quiet, is everything all right. Should we be doing more. Should we be checking for relapse markers. Crazy thoughts that should not really be entertained just come in, uninvited.
Amaey is at school now except for the once every month chemo which knocks him out for a few days. Arjun is in 6th grade still playing his tabla and now guitar as well. He is taking a break from 3 times a week of swimming and is trying out fencing and he really likes it.
Apurva is busy with wrapping up Cars2 and having fun with his iPad.
I got to focus on Kids & Art and we did an Art Walk in December 2010. It was a wonderful event. We had almost 60-80 pieces of art displayed at 6 local businesses. It was phenomenal to pull an event of this kind. What amazes me is that we human beings have the power to do whatever we put our hearts and minds on. I don't know how things happen but they do and when you look back on them, it feels like an out of body experience.
I'm also back to teaching and taught 2 sessions last semester and will do the same in the spring session. Sometimes I feel like I should not be working at all and should instead focus 100% on Amaey's health. So these 3 weeks that college is out is a good trial for that and I have to say that I cannot do that. I just can't. I'm driving myself crazy with anxiety. A dear friend just got diagnosed with cancer and it has brought the worst memories back from our first year of treatment. I had thought that I had moved on and forgotten all of that but it's not true. If I did not work and keep myself busy I would become a nutcase.

His Holiness

Today Amaey and got to and meet Dalai Lama at the Ronald McDonald House.

Amaey is on a 4 week chemo cycle and is hit quite hard because of it. This was his third week and his counts were low and he is neutropenic so they could not give him all the chemo he needed to get.
He had to stay home from school and I cancelled all his extra curricular activities for the week.
However getting the blessings of Dalai Lama does not happen everyday so we really wanted Amaey to attend this event.
His Holiness is in town for a conference on Compassion through Stanford and the Compassion Project. One of the donors arranged for him to stop by at the house and one of the LPCH social workers asked us if we would like to go and I jumped on it.

It was a mixed experience, on one side Amaey was neutropenic and I had him in a room full of people. We were supposed to see him at 2pm but he did not show up until 3:45. I could see Amaey fading and I was feeling really guilty. However when he walked in, he quietly went to the kids, held their hand, kissed their foreheads, hugged them and then he stood quietly for a few minutes just looking at everyone. I felt so emotional that I started crying. There was something in the room, there was this warmth on his face, there was this purity in his look. It was beautiful.

When he finally started talking he said, I know what you all are going through is really sad. He said that there are only two things that can happen, either your child can get better or not, the most common feeling during such a time is worry and sadness. However he sad, if we spend all the time worrying and being sad we are losing focus of the one thing we should be doing, giving love and affection to the child.
Sometimes sadness can takeover life and then we have space for nothing else. He talked about how fortunate we were in this country to have all the facilities and care compared to many other nations where children would have died from sicknesses that he felt around the room.
There was a 3 year old boy who was getting a kidney transplant tomorrow and his holiness blessed him with a warm hug.

After he was done talking he placed a white silk scarf around each child's neck. I felt sad that I did not get a one-on-one experience with him but then I realized that I had already felt touched by his presence, I really did not need a physical confirmation. I was there in that small room very close to his Holiness and I felt his intense presence.

When I asked Amaey about his experience, he was so untouched by the whole thing. He said he was bored and really wanted to get out of there and that his holiness used the word sad too many times. I was amazed at his words and his honesty... I'm sure some day he will make his own connection and feel his own tug. When that happens I'm sure he will feel elated and fortunate.

Chemo and all

Amaey has a new protocol where he goes in the hospital once a week for 4 weeks to get his chemo. It takes us  5 to 7 hours on those days. These are long days but the highlight is... we come home. Today is the 3rd week so after the 4th cycle he will be on his honeymoon week again where he goes in once a week for 6 weeks for labs and then take his oral chemo pills.

Grandparents are in town and it has been wonderful. We took a holiday and went to kauai for a week. We had Amaey and Apurva's dad to worry about. Luckily everyone came back home unharmed and we did not need to pay a visit at the local hospital. However, we did locate it and made a mental note of the distance from the hotel and such.

So far Amaey has done a Lego camp and half of Marine Science camp. The week he started his Marine camp they called and told me he was neutropenic so I had to pull him out and keep him home. He was quite bummed. Frankly so was I. I was looking forward to a week of exercise, some time to work, and some time to myself. So when I had to keep him home Wednesday onwards I was really upset too.

Amaey's long hospital days are almost sanctuary for me now. I have a day where I'm not running around. I can catch up on work, calls, and anything else that needs attention, like cutting my nails. Yup I do have a nail cutter and filer in my purse. On the other hand the hospital days almost worry me because any amount of exercise I might have done will go undone in one day because I will end up eating out, snacking on a cookie with my coffee and will probably be sitting on my butt for the 5-7 hours because I don't like to leave him alone. So weird that I think about all this but then this is my life now... so what do I do? I can't shove these thoughts, these selfish, worldly thought from my mind. They are just a fact of my life.