Saturday, December 31, 2005

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.

Wednesday, December 28, 2005

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.

Monday, December 26, 2005

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!!

Sunday, December 18, 2005

Amaey's cytogenetic test

We got the results from Amaey's genetic test and they look positive. He is lot more happy nowadays and that really makes a huge difference. He wants to participate in things, walk around a little more. However I do find him on the floor quiet a few times either because he could not manage his weight or he just got tired and decided to just sit wherever he was.

And Renata Amaey's new food craving is rice and lentils with lots of ghee (indian butter). Macaroni and cheese is hitting the charts as well. He is not supposed to have too much salt so he sometimes cheats and indulges in 2 pretzels, 3 cashews and 2 chips. Ah! he is such a darling.

This saturday we went to Pasta Pomodoro as well. I heard him talking in his sleep that he was going to eat up all his penne in white sauce so we knew that we had to do our Pasta weekend again. We are trying to brainwash him to crave for another restaurant next week, we will see if we succeded.

Thursday, December 15, 2005


Our favorite thing in the entire world right now is reading books. Oh yes this comes second to eating. We have read so many books and so many beautiful books over and over again that I have decided to make a list of them here--

If anyone has any suggestions please pass them along. Since Apurva and I have nearly memorized all the books now...

Yo! Yes? Chris Raschka
Strega Nona Tomie de Paola
The Stray Dog Marc Simont
Officer Buckle and Gloria Peggy Rathmann
David goes to school David Shannon
A chair for my mother Vera Williams
Sally Sheeps's New Nibbles Curious George H.A.Rey
I know my ABC Stuart Trotter
Firefighter Frank Monica Wellington
Bany Einstein Language Nursery
Swimmy Leo Lionni and all other Leo lionni books
All Maisy books
The feelings book and It's OK to be different by Todd Parr
Baby Einstein See and Spy Counting
My First Phonics Board Book
When Sophie gets angry- really, really angry... Molly Bang
The Red Book

Taxi driver

Yesterday Amaey tells me he wants to be a taxi driver. Sure I was surprised so I asked him why a taxi driver? So that I can drive my sister Aditi/Adidi (apurva's niece) to the airport when she needs to go to Michigan.
Amaey loves his cousin sister a lot. It is an amazing bond he has with her. The minute she comes home he asks her to get her computer out and go to and They can play for hours. He also loves her cell phone ringtone. Everytime it rings you can see his eyes sparkle and he will start dancing.

Yesterday Mr Phillips and Ms Christie from his montessori stopped by with a box of treasures and a beautiful book signed by all the teachers.
I was in deep sleep due to my vallium and ibuprofen but my sister told me that Amaey ran to the door and was delighted to see them. All the children from his montessori have made him cards and placed them in a box decorated by them as well.

December 15, 2005

Today is day 22 for Amaey's treatment. Amaey had is Chemo day at the hospital.

Since I could not sit for too long Apurva and my sister took Amaey at 10:30am. Today was a usual day, change his ivy dressing, get his vincristine via his ivy, some bloodwork to see if he needed more transfusion or platelets.

He has had some spots on his tummy so we were concerned about that and he has had a runny nose. The doctor asked us to be careful and not take him out to places filled with people. Pasta Pomodoro early on saturday was OK. (which Amaey is craving like crazy. I call his this phase in life AFB acute food binging)
After staying there for 2 hours Apurva called me at home to let me know that Amaey does not need platelets or transfusion today YOHOOOOO!. This is good atleast he is a bit stable.

Next thursday, which will be day 29, will be a big day for him. He will undergo a procedure under anesthesia. They will remove the pickline ivy from his arm and implant a port in his chest. This is considered a better solution for longterm treatment. He will also get Methatrexate and a bone maroow aspiration. On this day they will do an important test called MRD. This will help the doctors decide on Amaey's longterm prognosis.

My parents will be here from India on the 20th the same day as my sister leaves to go back to London.

The Butterfly Effect

Or should I call it the domino effect.

Amaey has been getting very heavy since he is on steroids. I'm very careful about bending my knees when I pick him up. Well on Dec 12 we were taking Arjun to Kumon and I was washing Amaey's hands. He slipped from my hand and I tried to grab him. With all the meds he puts all his weight on the person carrying him. He cannot really feel his limbs.

So as I'm making sure that I do not drop him and land him safely on the ground I hear a twist in my back. I try to stand back up and scream. As if whatever is going on is not enough... I seem to have twisted my back. The pain is excruciating. I can't sit nor stand. Two of our close friends had stopped by and they tried to massage my back, hot packs, tylenols... all the fuss for the wrong person. Amaey and Arjun are looking at me all worried. Nothing ever happens to ma. Why is she lying on the bed? I could see that in their eyes.

Up until that moment Amaey would not eat with anyone, nobody could read him a book and nobody could take him to bed. No one except dad, ofcourse. But what do I see... Amaey is sitting by me and says,' ma it's OK I will eat with masi" I'm in tears. How can this little boy be so understanding? Arjun tries to give me a massage to make me feel better.
When it is time to sleep Amaey starts to cry uncontrollably he wants ma. I'm crying because I can't pick him up and I feel so bad. Our dear friend gets a book and just starts reading with so much emotion and fun... Amaey suddenly stops crying. We all hold our breath. After two books are done papa Apurva is home and all is taken care off.

My pain gets worse. Everytime I try to get up I faint. A nerve was getting pressed. Everytime I would make an attempt to sit I would faint. One of my fainiting moments was almost filmi. I could here faint voices in slow motion and then it's quiet for the longest time and then I hear the voices again many voices but distant.

We went to ER the next day because the pain was killing me and I really wanted to get back on my feet there was too much going on in the house... I did not want anyone fussing over me while Amaey and Arjun needed all the care. Apurva and our wonderful friend who took a day off just to be with us were by my side at the hospital. Amaey stayed home with my sister, for the first time. What a star.

I'm doing much much better now. Still cannot lift or walk too much. So at 1:00 am on Dec 15 when Amaey woke up to go to the bathroom I went to him and said, "babe I can't pick you up will you walk?" At 1:00 am he gives me his most intoxicating smile and says "It's OK I can walk". Then we go to the kitchen and make scrambelled egg and dinosaur chicken nuggets. Our little midnight snack.


On Nov 22 when we took Amaey to ER the first person we called is our angel, Apurva's sister. She and her husband are doctors. We have called her up at the strangest hours.
She is one of those people that is so busy and engrossed in her work, her daughter and her life. When we leave casual messages we might never hear back from her. BUT, if you call her with any medical need she will call ASAP regardless of the time of the day. She gives us hope and just listening to her calm voice gives us support.

As soon as she got tickets she flew to SFO and was at the hospital with us. She makes doctor language so normal and easy to understand. We bounce off all the treatment talks with her so that we know we have a second opinion and if she sees a red flag she will alert us.

Just after she went back home my eldest sister flew in. She has been the mother figure for me since she is the oldest and I'm the youngest. Her mere presence gave me peace. Apurva and I were in the hospital while my entire family talked and decided who was going to be here with us to help us for the first 4 months of the treatment. None of them asked us and booked their tickets just to help us with the house and Arjun.

With Amaey on steroids our kitchen is on 24/7. No kidding. Which means our kitchen sink and our dishwasher is full all the time. All these normal day-to-day things of life would have got to our nerves if it weren't for the family help. My sister and Arjun could be seen playing scrabble for hours. He taught her to play UNO and they would finish-up homework. She is an amazing cook and evertime she would make something that Amaey liked he would compliment her.

My sister from London overlapped her visit before my elder sister left. This sister is a teacher so Arjun has had a great time doing homework and other math games with her. They play chutes and ladder, scrabble, puzzles... you name it. Today she has gone to the hospital with Apurva and Amaey since it is day22 of Amaey's treatment. Do you know what Amaey said..."am I getting platelets today?"


Renata, you had an excellent point.
With Amaey's treatment our life has changed completely and with that has changed our small daily rituals. For one I do not work anymore and am 100% on Amaey's care. Arjun on the other hand has been just amazing. Our wonderful friends have offered to take him for playdates, to the park, for sleepovers, but Arjun just wants to stay home with us.

I think that is his way of controling all the changes. And we are really proud of him for that. For a 6yr old all these changes can be quite frightening. He could have opted to go away out of the house and not participate in the happenings in the house. That can be considered normal because he is just a child. Instead he just wants to stay close.

One of the nights Amaey slept early and we had a movie night. All of us watched The Polar Express. We also had the fireplace on and Arjun and I snuggled up in a blanket near the fireplace and talked and talked for hours. He is a chatterbox I'm sure everyone knows that.He can forget to eat lunch at school because he is busy talking with a friend.

What was best was the next morning when Arjun woke up and came to my room he said, "ma I really enjoyed spending time with you near the fireplace". That sure was very very special for me.

Arjun has been making cards for Amaey. Get well soon cards. Since he had a cold we could not let him sleep in the same room or be near Amaey but he always gives him a kiss on his forhead. I don't think they show their emotions like 2 girls might have shown. But I can see that if Arjun is not in the house Amaey misses him a lot. He waits for him to come back from school to just watch him play. Amaey being a 3yr old grandpa will say things like, Arjun is so silly. Or he will check on Arjun when he is doing is homework and come back to me and tell me, "Arjun is doing a good job on his homework"

As for Arjun, he will always take two things when offered. 1 for him and the other for his brother. When we were in the hospital for 6 days it was a little hard for him to not see Amaey around. Whenever Amaey is sad he will go to Arjun and say, "can you make me happy?" and Arjun will start his silly singing and dancing and acting like a clown. In no time Amaey will be giggling all over.

How wonderful a bond. And here I was debating whether I should have 2 kids.

December 11, 2005

I was at the gym and CNN had a special- Then and Now showing on the TV screen. They showed the story of the miners that were trapped in the mine, the brave fire fighters from 9/11, and a family of survivors of 9/11.
Here I was trying to take my mind off all the things at home and instead I was face-to-face with the realities of the world. There is pain and sufferring everywhere. Self inflicted, nature transpired... you name it. The bravery is in looking ahead with your head on your shoulder and being positive.

December 10, 2005

This weekend was wonderful for Amaey. He was the happiest ever. He went for a walk for the first time in 2 weeks and he was all smiles and kisses for everyone. It’s funny how happy the whole house was. We don’t want to be tied with his emotions but I guess one can’t help it.

Amaey did get to go to Pasta Pomodoro. He orderd for all of us. He wanted to eat a little from everyone so he made sure we got different things. And lets not forget that apple juice that comes in his kids meal. He was sooo happy that we could not contain oursleves. We come home after our early lunch and guess what he says... I want it to be saturday tomorrow and I will go to Pasta Pomodoro again and I will eat my penne in creme sauce and apple juice. Oh that boy scares us sometimes. He is so sure of what he wants in life, so focused. It's beautiful to watch him.

We have explained to him that he has a bubu and he needs to take some medicines to get better. Most of the time he does not fight it. He aslo needs to flush his 2 ivy's everyday and if we forget he reminds us. He helps us push the fluids and clean the ivy. Is this really a 3 year old?

Friday, December 09, 2005

It's all relative

December 9, 2005
While we were at the hospital yesterday, there was another little girl sharing the room with her parents. She was getting blood transfusion as well. After Amaey went through his bouts of crying and being grumpy for not getting his boiled egg and onion rings (which mind you he has never eaten before) The dad of the little girl asked, "is he on dexamethosone?" yup I say. Both parents nodded and smilled a very familiar smile, like we've been through this... we sympathize.

I told him that it was Day 15 for us and they were in their 6mth mark. Then suddenly dad said something, "well, it's good they are little it is much easier". I'm too civil so I just nod in agreement but inside I'm screaming, "NO, it's not easy, he is only 3yrs old. He cannot differentiate between nausea and hunger, stomach pain and bone pain. All he can do is cry".
But then it's all realtive right... they have reached the 6mth mark they have dealt with this longer.

Another comment he made was truly amazing. He said, " girls take much less time in recovery compared to boys. So is your roadmap for 3yrs or 3.5yrs?" At that point I just look at him in amazement. He is so happy to be able to compare his child with mine and know that she is much better off than Amaey. It could be much worse, right?
I really did not want to say anything that would take him away from his comfort zone. From his few minutes of peace that he made with himself.

I live each moment as it comes. I totally know what is going in that dad's mind, what guilt demons he must have fought and how he must have come to terms. It's all relative from where I'm sitting and viewing the world.


December 9, 2005

Yesterday, Dec 8 was day 15 for Amaey's treatment. His masi(my sister) and I took him to the hospital at 12:30pm.
Amaey had 3 important question he wanted to ask the doctor
1) can I go to pasta pomodoro
2) can I have gummy vitamins
3) can I eat chips
Well we did ask the questions and the doctor said yes to all 3 but in moderation so Amaey was super thrilled.

It was supposed to be a routine chemo and blood work. But his blood work results showed that he was very neutropenic so they decided to give him some platelets and blood transfusion. It's 5pm and we are still waiting on the platelts.
We had been given a room in the day hospital and it's going to be a long evening so I asked Amaey if he was hungry.... BAD, BAD question. He breaks down and just wants to go home. He refuses to eat anything until he reaches home. 6pm we are worried that the cafeteria's in the hospital will close so I ask him if he has changed his mind.So he asks for boiled egg and onion rings.
Easy, I think, I have seen those in the cafe my sister goes down but comes back with burger and fries instead becasue they don't have what he wants. Terror is unleashed in the hospital room. Our little Amaey is worse than a pregnant woman with cravings right now. WHY? well it's the prednisone and the steroids he is getting.

Yesterday morning at 8am as he is waking up he says, "today i want to eat some Manchega cheese". Sounds simple but just day before yesterday he had told me he does not want me to buy any Manchega. Now I'm looking at the clock waiting for it to turn 9 so that Trader Joes will open it's doors and I will buy Manchega.

Couple days earlier around 6pm Amaey declares that he wants dinosaur chicken nuggets. I look through my overly full freezer but find none. So we pack everyone in the car and off we go to Costco (because that is the only place to find them). I leave the car heater and CD on for him, his brother and aunty since he cannot come to the store with us.
It's Christmas time and I'm at Costoc at 7pm... By the time I'm make my way out after a long serpentine check-out line it's nearly 8pm.
Amaey sees the yellow Dinosaur Nuggets box and is all smiles. I start my car but it refuses to start.
Oh No the battery is down!!
Now I have 2 hungry kids in the car, it's raining and cold and my car won't start. I call Apurva to rescue us. He comes in his car, we shamelessly take his car and come home while he fixes my car.

Let's see am I forgetting any other craving moments...
Oh yes, On the 7th he was reminiscing the stone soup party in his montessori. He gave me a list of things to buy because he wanted to have a stone soup party in the evening. We called up Apurva and asked him to come home early because Amaey really wanted to have the whole family for the party. He also wanted banilla(he calls vanilla- banilla) milkshake, and icecream soda for the party.
So off we go to safeway beacuse stone soup it will be for dinner today. However as the day progressesd he had changed his mind and decided he did not want the party after all and he'd rather eat scrambelled egg and yellow rice.

These are the little humorous moments that add to the mix of our several meds and treatments and procedures.

Saturday, December 03, 2005

November 22, 2005

It was Tuesday evening. I came back from work to take the boys swimming. Amaey was lying down looking rather yellow and slow. I started changing him into his swiming trunks and noticed that his belly was bloated and hard. The first thought that came to my mind was... gosh Amaey has what Arjun had, it was 5:30pm and his pediatrician was closed and I did not want to wait until the next day so I took him to urgent care. The holiday weekend was coming up and I just wanted to rest assure that all was fine.

The Urgent care doctor checked Amaey and asked us to go to ER at Stanford to get some blood drawn and a chest x-ray done. I took Amaey to Stanford and called Apurva who was in the city teaching his class.
Apurva and I both reached at the same time. ER took us in after an hour and did some bloodwork. Next thing we know a doctor calls us out and tells us that Amaey has Leukemia. He was not sure of the type and the risk. They would do more tests to get that information. They moved us to ICU, gave us some masks to wear and one after another more doctors came to see Amaey.

Around midnight they moved us to a room in the LPCH. The doctors told us that Amaey was extremely anemic and needed blood transfusion- now. Our little baby was hooked up with two ivy's and several monitors. The night felt really long. His breathing was so randomn that the monitor kept beeping throughout the night. It was so alarming evertime it would beep. The doctors came in but I had crashed in the chair. I could not take any more information.
Apurva was super strong through the whole night.

Next morning the doctor came in and both Apurva and I were really hoping this was all a bad joke and we would go home. However, that was not the case. They were certain with their initial diagnosis but could not confirm yet.
The day felt drawn out because the blood results that were supposed to be out at noon were confirmed at 11pm on Nov 23.
The doctor sat down and told us that Amaey has Type B Acute Lymphocytic Leukemia. The next hour and half was the strangest. We were talking about starting his chemo the very next day at 8am and we were talking about a 2.5yr treatment roadmap.