No hair but still gorgeous

Amaey is in the last week of his delayed intensification phase.
He seems to be doing well. He does not have an appetitie at all but other then that he seems to be holding up real well. He had started losing chunks of hair and that was it... I went and got it shaved off so that we do not despair everytime we see his pillow or clothes full of hair.
I think he likes the look too.

This week

We had a break in treatment this week and that was good. All of us got a little breather before the next 2 intense weeks. Amaey was all smiles all the time. It was beautiful to see how happy he was. The end is in sight now. After his next 2 weeks of intense chemo he is off the hook... we will begin maintenance.

He smiles

This thursday was a break in Amaey's chemo and it is amazing how it shows. He can't stop smiling... you can see that he is feeling good. He is slow but not cranky and that is wonderful.

We have noticed that his hair is falling like crazy. If I run my hand in his hair chunk of hair will casually fall off. But he thinks it's funny when I say he is going to have a really cute bald head. He thinks it's really silly of me. He says.... Ma you are really silly billy.

My day with Amaey- by Arjun

Amaey isn't feeling that good and he cries a lot now. This makes me feel sad.
Amaey I hope you get very better soon and get very happy.

Today I went to his hospital and I saw everything. It was very nice. I liked going there. He was so strong when he did his bloodwork. And I was making him breath. I was very impressed.
Then we went to the clinic. We had to wait a lot there. I played games and it was very fun. I liked doing that. Then we went in the room where I met his doctor. His doctor was really nice. When the doctor was with amaey I made 2 nice nice drawings and I read a very long book to Amaey.

Then we went to lunch. And then we went to get cars our hotwheel cars. It was a special day with me and Amaey.

It is hard

Today is day 21 of the Intense Dexamethasone phase. We survived it but it was hard. Really really hard.

Amaey had 3 weeks of Vincristine and methatrexate and Peg and Dexa... you name it and he got it in the past 3 weeks. He started out really well. The first week he was great I also took him to his music class. Second week he was slowing down but he was still in good spirits. His eating habits were crazy as we had expected but he wasn't really eating much. And he did not wake up at night for food. Yes he did ask for milk and He would get wet with perspiration (due to the meds) so he would come and sleep with us.

This time he seemd put off with food. He would ask us to cook up cuisines but he would look at it and smell it and be totally off. He would just stay in his chair and put his head down and rest. When he would eat it would be for the entire day with some sleep breaks in between. But 1 or 2 bites of every food, that's all.

from March 29 to April 4 Arjun was down with fever. 102-104 temp. non-stop. And that was the week my parents left to go back to India. I must admit it has been an emotional roller coaster for me. It took all of Apurva's and my strength to not loose it on the kids. They were so needy, so insecure. We were on 24/7.

Luckily Arjun is much better now and with spring break he has got his needed rest and back to normal. And that is great because he is my best helper. Such a wonderful brother.
This morning he sat down in the TV room to watch a show with Amaey and Amaey made him leave. Arjun went to take a nap in the bed with Amaey and Amaey kicked him out of bed. Arjun was really hurt. He came out crying. I could see that he was genuinely hurt. I sat down with him and had a really long chat. I explained what Amaey was going through. Reminded him how he felt when he was sick and just imagine feeling infinity times more bad... I think that helped him because after that chat Arjun made sure his brother had everything he needed.

To add to his mood bouts, uncontrollable crying moments... Amaey has developed mouth sores. They started out lite and in 3 days took over his entire mouth. It has been particularly hard for him. He cannot eat, does not feel like drinking and sometimes can't gulp. He wakes up crying and he can keep crying for hours because he can't stop himself. He is really slow and cranky. Sometimes I feel like there is another person in his body.

He is a kid that likes routine. He has to take 5 tablets twice a day. Fine now that it is routine he can do that without a fight. Now I add magic mouthwash and warm water gargle and no solid foods... that's it all hell has broken loose. He wants waffles and toast even though he cannot swallow. How do I explain to him that soup and juice and warm drinks are best for him.
However, since this evening I think he gets it. He gets it that I'm working for his good. That yogurt or hot choclate might be better than bread. Oh good.... I'm so glad he gets it because I was about to breakdown.

This thursday we have a break from his treatment. So hopefully his body and mind will get a break before his next 3 week intense phase begins.

Race for Life

My 11 year old niece and my sister in London are walking in a marathon called Race for Life. The money that will be collected will go towards cancer research in UK.
http://www.raceforlifesponsorme.org/forthosewelove

Anokhi and Mona... it is wonderful that you are participating in this event. Cancer is such a broad term that I never thought about the intensity, the age range that is affected and the lives of the families before. This was something we talked about
and then moved on.

When my mother-in-law was diagnosed with Ovarian Cancer I had just moved from NYC to SFO. Still looking for a job after my masters which meant I was a dependant and that word hurt me a bit. Having worked to pay for my very expensive art school in NYC and having left a really good job there my new life in SFO felt a little strange. I realized the frustration of all the HI-B's (dependant spouses) if you do not work you do not have friends, maybe do not have a car which means you are completley dependant and add a new place to the mix.
Around that time we found out that my mother-in-law had cancer and we went to India. On the day I was leaving for India I got a job offer. They needed me to start work in 10 days... I was so torn between my daughter-in-law duties and my much needed independance and ego boost. I had to come back in 10 days and that fact bothered me actually up until yesterday. i.e for 10 years.

Yesterday I was thinking about this and I realized that circumstances pull people in different directions. As a newly wed and a recent grad my entire lifes focus was in proving to myself that I was capable of getting a job and becoming independant and doing what I really enjoyed. We were still in our Honeymoon phase so the insecurity of a total life shift was scary. For so many years everything else was on hold since I was a starving student. A sudden turn of events was totally not a matter of discussion.
In comparison to 10 years back, when Amaey was diagnosed I took -2 seconds to tell Apurva that I was quitting. A job that I so loved. I was more stable in my life. We as a family were more solid and grounded. Our priorities were in order and we respected each other.

Circumstances can definitely test people and relationships.
Looking around me I feel completely blessed that we have such a strong family and wonderful friends that have looked out for us, been there with us. I have known of people that loose friends and family with each test that life puts on them... I'm thankful that we have created more bonds with each difficulty that life has showered on us.

Anokhi and Mona, we wish you two a good walk and I hope you collect the money for your charity. Thanks for walking even though you should medically not be doing so.

Day Hospital

It's been 4 months since Amaey's diagnoses and Day 5 of his delayed intensification. I had to take him to the day hospital since he was to get another chemo today. I told Amaey in the morning that we need to go again but not for blood test or at the clinic but to the room with the big TV and he looks at me with his gorgeous eyes and says, "where I got my platlets?" I just stared at him in shock... "how do you remember that" I really do not know how that boy remembers all this.
Maybe he feels in control when he knows what is going on.

He has slowed down with all the new chemo drugs and steroids. All day long we hear him say he is tired and he has a headache or bodyache. But he can't seem to stop himself... he keeps running after Arjun and suddenly pants and slows down.
He is also going into this phase a really strong boy compared to when we started the treatment in November. We are lot more educated about the phase and side effects as well. Regardless, he seems to be in great spirits so that really helps.

Chicken Pox

On Thursday March 23rd Amaey started his delayed intensification phase.
At 8:15am just as they were taking him into the room for a procedure I got a call from my friend, her 2 children were spending the evening with Amaey and Arjun the night before. She thought her daughter had just developed Chicken pox.

My heart stopped beating. I suddenly felt like a big killer bug on the Pediatric Procedure Unit. All these immuno supressed kids around me... I went and told one of the nurses... after closing the window on me she came back and assured me after consulting with a few more people that I was not contagious. If It was between day 7 and 12... they would have shooed me out of the hospital before i could have blinked.

Now I'm worried about Amaey. He was going to start intense doses of chemo. I called my friend and every hour I tried to get a better idea of the symptoms... their pediatrician could not say for sure if it was chicken pox. We needed to wait 24hrs before we would find out.

When we get home I made the mistake of looking online about chicken pox in leukemia. I tell you that was the dumbest thing I have ever done. This was the first time I realized that I had the capacity to worry to such an extent. Next day morning we still do not know. It's friday morning and I really want to get a sense before the weekend. Finally at 11:30am My friend calls and we find out that it is not chicken pox. phew!!!

All this time we were so cautious about cleanliness, washing hands, our social engagements... and now just a day before his intense phase was to begin I had invited 2 lovely children home and had no idea that it might be fatal for Amaey.
Thank god it was just a scare.
But that did get me thinking that we cannot control life. We cannot control destiny.
This does not mean I will let loose and let my guard down...
I could here it in my parents and my sister and my sister-in-laws voice... How could I let this happen. All I can say is that, I cannot control everything. know I'm doing my best... and that thought has relieved me of the constant guilt...

UC Berkeley survey

Today a lady from UC stopped by. We are participating in the research for the cause of childhood leukemia. The interview took 2 hours. She asked me questions on my life, eating, drinking, recreational habits starting from 3 months before pregnancy until Amaey was 3 years of age.

She had food portion sizes, drinking glass sizes. I did not have answers to all the questions and some of them might not have been super accurate because I do not remember if I drank 2 glasses of wine or 5 glasses of wine 3 months prior to getting pregnant. And I definitely do not know how many servings of fruit Apurva consumed in his life up until now.

This survey did feel like a needle in a haystack.

My question to her was... I keep hearing environmental causes. I said, I come from India and in my 22 years that I was there I must have heard of 2 cases of childhood leukemia... In a country that is over populated, there are no smog tests. Sure cases might not be diagnosed or there might be many other reasons... but still what could be so wrong witht he environment here?
She did not have an answer.

March 5 2006

Amaey is doing really well at the moment.
We go to his music class every tuesday and school whenever weather permits.
His next phase called Delayed Intensification starts end of March and will last for 8 weeks. The doctor has warned us to brace ourselves for that phase since they will be giving him dexamethasone for 21 days and he will get 2 new drugs. We feel we are less anxious and better prepared now so it should be OK.

My parents will leave by end of March so it will be the 4 of us for the first time since Amaey's diagnoses. In a way we are looking forward to that. As a family the four of us need to chill and bond.

We do feel really blessed to have such a wonderful family who came to our support when we were in need.

I'm settling into motherhood as well. I'm quite enjoying it. I'm involving myslef more in Arjun's school and have finally taken up the much needed home decoration projects. I cannot get over the irony of life though... when one is making money one does not have time to spend it and when one has all the time in the world to spend because they are not working anymore... they need to tighten up.

My parents say this is part of life. They went through such phases much earlier in life when they had to move from the village to the city and then put kids through school, take care of relatives, family, parents and the ever needy neighbors and distant relatives. They say that our responsibilites, nowadays, are shrinking thus whenever something comes up it is magnified.

Amaey's Montessori

This morning Amaey woke up really happy because he was going to his montessori. I asked him if he was really excited and he says in a very Amaey way, "I'm medium excited". When we got there he was glued to my feet. Luckily we got there early so it was not busy and overwhelming. I got him started on his blocks table and told him I will be close by and will come and pick him up before he got tired. His teachers warmly told me not to worry, they will make it a special day for him.
I slipped out when he was engrossed in his work. I had my cell phone glued to me, kept adjusting my ringer my ringtone. Every 20mins I wondered if I had any missed calls but there was nothing. Amaey was OK afterall.

I went to pick him up at 11am and all his teachers said he was absolutely fine. Amaey's big smile told me he was very very happy. As we walked to the car I asked him if he had a medium kind of day and he said, "No it was not medium it was really good".

I must credit the Montessori, it's director and staff for our willingness to send Amaey back to school so soon. They have been the most amazing people I have come across. We will send him based on his energy level and the weather. Definitely two days a week for now and if he is really holding up maybe 3 days.

Today was a big turning point in Amaey's treatment. The fact that we sent him to school, we let him be out in the world... alone... He must be doing better.

8 weeks of honeymoon

Amaey started his Consolidated maintenance on thursday. The next 8 weeks are going to be easy. Next 4 weeks we do not have any procedures and we only need to go back to the hospital for bloodwork.
He had 3 questions for the doctor when we went in on the 26th--
- when can i start going to school
- when can i go to disneyland
- can i go to coyote point museum?

The doctor said school is a great idea and museum is fine as well however we will need to wait on disneland for a while.

I have started a music class with him and i took him for a visit to his school last week. He was really overwhelmed when he went there. All the teachers and children were genuinely happy to see him. I guess he wasn't expecting special attention so he just shyed away and was glued to my feet the entire time.

If anyone saw Amaey right now there is nothing in his persona that would make you feel that he is sick. He is not neutropinic anymore so we can see friends and family and take him places. Act as normal as we can. It's nice to have this respite. However his temperament is something else. I do not know if it is 3.5yr tantrums or the medicines. I'm sure it's a little of both.

Now that things are setteling a bit Arjun is showing signs of adjustment. He gets upset at Amaey, complains that he is not getting enough attention and wants his alone time.

As for myself... I used to get more done when I was working. I'm convinced that it takes a different type of person to be a stay at home mom. Am I that person? I do not think so. Can I be that person? I guess I will just have to learn on the job and find out.

Happy Bunny

Sorry for the long pause.
Arjun's school has started so life got busy again.
Amaey is doing much much better this week. He is lot more energetic. Still gets tired and can't walk for too long but we did our first park outing and he took his tricycle to the Ryder Park.
He is quite moody still. One moment he is happy and the other minute in tears for something unrelated.
Appetite... oh dexamethasone where are you!! never thought I would say that. But ever since they have stopped his steroids he is back to his normal weight(which is good) because Amaey does not feel like eating anything. We had created a menu for him and all the foods that he use to crave he totally dislikes them now so we are working on a new menu now.

That's fine though because hearing him chat like a chatterbox and play like a happy bunny is beautiful.

Happy New Year from ER

Yup we are in ER.

Amaey had fever off and on since late afternoon. At 10pm we called the doctor and they told us to take him to ER.

The four of us decided to stay together and celebrate New Year... wherever it was to be.

They have drawn blood and we will be here for couple of hours until they decide what caused the fever. The new Pediatric ER at Stanford is quite a treat for kids thats for sure. The boys were really busy playing video games and watching movies. Amaey's room is equipped with 2 screens... for the kids it was exciting to be up until midnight and hear the countdown into the new year... who cares if it was in ER.
Well 2006 has rolled in and I must say it is going to be a year of family, togetherness and sharing.

Warm wishes to everyone for 2006. Wish you all a very warm and peaceful year from our family to yours.

December 31, 2005

Waiting for the year to end.

I'm serious, this year has by far been the strangest year yet.
We came back from India in Jan. Then in Feb Apurva's dad got really sick and was hospitalized. Apurva and his sister flew there and stayed still he was stable and out of the hospital. As soon ashe was out of the hospital we found out that his mom had been hospitalized.
In March Apurva and Arjun went to India for spring break. Grandparents really wanted to see Arjun.
April I quit my job at KM after being there for 2.5years.
April, Apurva starts Team Training with Asha to run a marathon end of October.
April to July is a blur due to freelance deadlines, BlogHer Conference and I started working at MZ from 2nd week of July. New place, new responsibilities.
August, Amaey turned 3. We had family with us for the entire month and Apurva and I celebrated our 10th wedding anniversary.
My best friend got married end of August and I was a bridesmaid.
September Arjun started 1st grade. A milestone in our life.
Amaey started his preschool.
September, Arjun underwent a surgery.
September, Arjun turned 6.
October, Apurva is in India for 2 weeks. His fourth visit in 1 year.
October 30 Apurva runs a marathon.
October and November, was the busiest month for me as a fulltime working mom. Juggling responsibilites at work, managing volunteeer hours at Arjun's class, 3 activities each for each child. We have halloween and then our Indian New Year.
We were, as a family, really looking forward to the Thanksgiving break to chillex and regroup as a family.
Well, November Amaey is diagnosed with Leukemia.
December, Apurva's dad is hospitalized again. They do not inform us for almost a week because he was hospitalized the same day as I had to be taken to ER with my back.
December, our first nephew-the first grandchild (on my parents side) is married.
Now it's 1 more day and it will be a whole new year.

What miracle am I expecting for the next year?? Nothing really. All I want is the year to end that's all. Talking with friends and family it seems that this year was really strange for quite a few people. For a few it was a year of new beginnings and some moved on while others had a ton going on as well.

I never start a year with expectations so I do not really have any reason to look forward to the New Year. But I have never also wished for a year to go... vanish in thin air...the way I'm wishing for this year to end.

MRD test

Amaey’s MRD test result has placed him at low risk Leukemia. So from now on they will treat him as a Standard Low Risk case.

Apurva and I were really happy and naively thought that it was all over or atleast the worst was over.
Little did we know because as soon as we were told about his test result the doctor took out a bundle of papers and started talking about Amaey’s phase2 treatment 'Consolidation' which will last 5 months and then Maintenance will last 3 years.

Apart from the little reality bite... this is really good news. Atleast we know where we stand.

Christmas Eve

Amaey gave us the best christmas gift.
He woke up with a big smile on his face. Oh Did I forget to mention that the doctors stopped Amaey's steroids... why is this a highlight of our life right now??
Well we do not have a 'forever hungry' boy anymore.
Last night was the first night that our kitchen was not open. Amaey did not wake up to eat. Apurva and I could not sleep we kept tossing and turning and went to check in Amaey's room to make sure that he wasn't crying or calling us with intense hunger but everytime we would go to his room he was peacefuly sleeping.

Back to christmas eve morning... Amaey asked us if he could go and play in the backyard. The three of us were shocked and happy. It has been 2 months since Amaey has wanted to play. He stayed outside soaking up the sun. His feet did not have the energy to move the pedal so Arjun would push him (bang once in a while). They had a great time.

Amaey has been so happy and his energy seems to be coming back slowly. It's truly beautiful to watch him. Sometimes Apurva and I wonder what he must be thinking? If he has any idea about what is going on in his life? Does he wonder why his hair is falling? Why he cannot go to school and have any outings to his regular places like the bookstore or library or lego store? Does he wonder about any developmental problems that might come up in the future, side effects of all the medications...
Does it affect him as much as the thought really affects us?
Maybe not. He is so happy in the now, the fact that we are all at home and family is visiting... there is so much to learn from children.

Medical twins

This is a story that will stay close to us for a long time.
When we were initially diagnosed and in the Oncology unit one of the nurses told us that there was a little girl on the same floor who was diagnosed with exactly the same thing as Amaey.
On day 15 when Amaey had his procedure and chemo we meet a mom and grandmom of a little girl waiting to go for her procedure. We were chatting and found out that little E is just 3months younger to Amaey and she came in to ER the same day and same time as Amaey and they both are undergoing the exact same treatment. Is that warped or what?
Day 29 we see them again. We were exchanging our late night food craving stories. Later in the recovery room the ICU nurses were talking about the two cases. The anesthesiologists were amazed that two cases back-to-back can be ditto thus they call them the medical twins.

December 22, 2005

It’s 1 month today since Amaey was diagnosed. Feels strange that only 1 month has passed but it seems like the longest month ever.
Today we were scheduled for removing his Pic-lines that are on his right arm, they are also going to place a device in his chest called Port and take a bone marrow sample for a test called MRD and finally give him his chemo.
They had to do all of this under anesthesia so we were glad that our appointment was at 9:30am. He was already getting hungry by the time they took him to the operating room. Apurva and I got a beeper and waited for the procedure to get done. After 2hrs they called us and we got to talk with the surgeon that did the procedure. All was well and Amaey was in the recovery room so we went to see him there.
He was waking up from his anesthesia and was not happy. He hates being hooked up to all the monitors. The biggest thing to watch out for was fever and luckily he was stable so we could take him home after he drank some fluids.
2pm and we were home… it was wonderful to be back home.

December 21, 2005

Amaey and I had a hospital appointment today just for bloodwork and to make sure he was doing Ok since he has a procedure coming up tomorrow.
His routine appointments have not been merely that so I was a bit nervous.
But it was an in and out visit. I was so surprised that I just stayed around waiting for the blood test result to see if we needed to be admitted for transfusion or such. The doctor asked us to go home…cool!!