Thursday, November 26, 2009

Moved down to 1 North


Apurva helped move Amaey out of ICU and down to the Oncology unit yesterday around 1pm.
When I came in at 3:30 his heart rate was between 80-90 and had no fever since 10am when they gave him tylenol. He looked much better.

He kept complaining of pains in his abdomen and it was hard for him to take a deep breathe.
After Apurva left, the two of us settled down but both of us were in a funk and not in a mood to do much. Finally around 7pm he tried to eat dinner but the smell of the food made him gag. So I did not force him. He changed and had some pediasure and the two of sat and watched The throwdown on Food Network and then MythBusters and called it a night around 10pm.

He wanted me to sleep with him in his bed until he fell asleep and that really felt good to me. That meant he was feeling better and was aware of his environment.

Since he is connected to the monitor the night was hard because every time he would move the monitor would beep. His oxygen band connected to his finger kept coming off so the monitor was pretty unhappy. Finally at 6am the nurse put a more stable band on his finger and the two of us finally slept until 8am.

This morning was quite a wonderful treat. Amaey woke up a happy bunny. He was his usually chatterbox and all smiles. He brushed, changed and ate some cheerios. Yipee!

Wednesday, November 25, 2009

Amaey in ICU


The fever didn't let down yesterday. Once it reached 105.4 the nurse was worried. His heart rate jumped to 148-150. They hooked him up to all the machines and kept a constant eye on him. Suddenly he started shivering.
That is when the nurse came in to tell me that they would like to move Amaey to LPCH and an ambulance was on it's way. I was really mad. When the doctor called me from LPCH to get consent I yelled at him, why did you send us to El Camino if you could not handle such emergencies. He had a fever last time too...

It took 2 hours for the transport to come to us. Those 2 hours felt really long because Amaey kept going in and out of deep drowsiness. Different doctors kept coming in to make sure he was still sane and wasn't in some state of shock due to the high fevers and chills.
Finally around 12:15 the crew walked in, asked lots of questions about Amaey's current state, past history etc. As they were talking with me outside the room Apurva walked in. I could see the shock on his face to see all this fuss outside Amaey's room. They put him on their stretcher and I insisted to stay in the ambulance with him and Apurva brought all the luggage and drove to LPCH on his own.

We took few pictures in the ambulance, Amaey wanted to know what the drivers seat looked like, we couldn't get a good shot but we tried. They were trying to constantly chat with him I wasn't sure why but I think they wanted to make sure he was aware of what was going on. I think that was their way of keeping an eye on his condition. At some point, while Amaey was talking about science and all his favorite things in life we noticed that he was having a hard time breathing and couldn't talk without feeling tired, they decided to give him an oxygen mask. Luckily the nurse had warned me of all of this so I wasn't panicking. On our final lap towards the hospital they decided that Amaey needed to be in ICU instead of the Oncology unit. His breathing was getting erratic and his cough was sounding wet, they were worried that the extra fluid they were giving him might have caused a pulmonary edema. They did not want to take any chances if there was fluid in his lungs.

At this point I was in De-Ja-Vu mode. Thanksgiving, a glass ICU room, doctors, fellows, nurses, coming in the room and going out, Beeps everywhere, Amaey is listless and completely quiet. Doctor after doctor examining him and talking with us. Information is exchanged between everyone and finally Dr Wei shows up, looking 4 years older and then I realize it is all happening all over again. Yes we were given masks to wear as well. I made my statement I had been waiting to make as soon as I saw Dr Wei and Jen Moon, I HATE THANKSGIVING. I absolutely hate it. I wish I could skip that week and erase it out of our calendar for life.

Around 3:30pm after Amaey was given several antibiotics, a chest xray and tylenol, his heart rate came down from 167 to 140 and his temperature was around 103. I crashed on his bed.
I woke up to find an Amaey sitting up and looking a little like himself. Which was really a treat. I changed him and Apurva went to get some food for him and a coffee and then around 6:15 pm I left the hospital once Amaey seemed stable.

At home Arjun had 99.2 fever but he looked and felt great. We lit the fire in the fireplace and sat and chatted for a while with Aditi's mom Kirtiben, who had come to take care of Arjun.
Later around 10pm we got a call from Aditi... Ashray proposed to her with a ring in the mint box!!! What... you are engaged!! Oh I have to tell Amaey it will brighten his night. And when I called and gave him the news, Apurva said that he was wearing the biggest smile possible.

Tuesday, November 24, 2009

High fevers

Apurva called me yesterday and told me that Arjun had fever. So he has taken the day off today. He will come to the hospital later in the afternoon and we will change guards and I will go home and stay with Arjun.

Over here in the hospital Amaey had high fever last night and the fever has continued this morning too. This chemo completely knocked him out last time and we were hoping that it wouldn't be as bad this time but that's not the case.
His hemoglobin is low so they are considering a transfusion tonight. He has a runny nose and has started coughing so now they have put him in isolation. He cannot get out of his room. 

Yesterday the two of us went down to the new atrium by the cafe and played with his new lego racer car. I wheeled him down with his ivy pole. We had such a wonderful time playing for almost an hour. Then he needed to go back to his room because Mrs G was to pay a visit. The two of them worked together for an hour and a half. Amaey was getting really tired by the time Mrs G left. By 7pm he had changed and was fast asleep. 

Today our goal is to keep him entertained and happy. 

Monday, November 23, 2009

Hospital Stay

4 years ago on Nov 22 2005 Amaey was diagnosed with ALL. 
It felt really strange to be back in the hospital today still fighting the ALL.

We checked in the new El Camino hospital at 1pm. This round he will get Cyterabine chemo 4 times over the next two days. On the third day he will get Peg which are two shots on his thighs. 

This chemo combo usually gives him high fevers. He is already feeling tired and complaining of a headache. We do hope to go home before Thanksgiving.

My parents

My parents left so this time around the juggling has already begun.
Yesterday, I met a mom in the clinic who has a 7yr old daughter going through treatment and 3 more kids at home. She looked so tired. I asked her how she managed without any extra help... I guess we all manage if we have to.
I must say that my parents came at the right time. They arrived in Summer, and I did not realize how tired I was. I took a nap every day for the first month. I felt like I could keep sleeping forever. Then they left for 2 months to visit my brother and sister. During that time I was already recharged.
When they came back to us in September the longer hospital stays began and my teaching job became busier. Amaey got really sick and we decided to home school him. If it weren't for my parents help making all those transitions while keeping my job and managing the last minute dashes to the hospital would have been really hard.

Monday, November 16, 2009

Hospital Today

We are in the hospital for (non-stay) chemo today.
Apurva and I were worried that Amaey will not make counts. He had dark circles under his eyes and we thought he might need blood or platelet transfusion. But we were proved wrong and that was good.
We are in a room now and after giving him some zofran they will start his chemo. Hopefully we will go home in 3 hrs.

Amaey is busy watching the food network. The Barefoot Contessa is cooking up some classics.

Amaey wants to cook a meal for Thanksgiving. While I'm driving he takes my iphone. I think he is playing games but today I realized he surfs for recipes. He is so cute.

Monday, November 09, 2009

2 of 8 Methotrexate

We are in the hospital.
This is 2nd of 8 hospital stays for this round of treatment. We got to the hospital around 12:30pm. Once we settled down they hooked him up and started hydrating him. At 8pm they will start his chemo. He gets this chemo for 24hrs. After that their goal is to flush the chemo out of his body. They keep hydrating him until the chemo is at 0.1 level. This process can take 3-4 days. So we will definitely be here until Thursday.

We are at the El Camino Hospital so it is a bit farther away from home. At the moment they do not allow anyone under the age of 19 so Arjun or his friends cannot stop by to visit him.

We have officially started his home schooling. The school district sends a tutor for 5hrs a week. We are really blessed to have his teacher from school as his home school teacher. She is here at the hospital and working with Amaey. I just heard him pick on his teachers handwriting. Only Amaey would do that, tell as it is...
We watched Jurassic Park at night, it was really fun.

Day 2 was fine. 
The hospital is moving to a new location this weekend so the entire floor was deserted. They had already packed up the play room, no books, and not much else to do. They wheeled the gamecube to his room. Which helped distract him now and then. around 1pm Calvin the hospitals teacher dropped by and we all walked Amey to the school which is on the same floor. I took my computer there and worked. The two of them finished all the homework and spent almost an hour playing math games on the computer. By the time we went back to the room it was 4. Amaey was really happy. The two of us read, played sequence (I lost all the games.) Apurva came to the hospital around 8:30. After all the change of duty hand offs I went home.

Day 3, the two boys spent the day together. 
Apurva took the day off since it was Veterans day and Arjun was home. Apurva said that Amaey had a busy day between Mrs G tutoring him and Renu-Sunil stopping by (with his penne pasta). This time around Amaey did not want to look at the hospital food. Even the smell grossed him out. We took all his meals from home. He asked for milkshake, quesedilla, linguine in red sauce, corn, sliced apple, different types of snacks. It was a great idea because this is the first time he ate well. 
At night they watched Pink Panther and around 10:30pm I got a call from them saying he was going to come back home. This was real good news because he never comes home within 3 days. This chemo always takes 4-5 days.
It was so wonderful to see him all happy. It was wonderful to have everyone back home.

Saturday, November 07, 2009

Friday CBC

We went in on Friday for his routine bloodwork. 
As soon as we were in the car driving to pick-up Arjun from school I got a call that they needed him back, his blood was low and he needed a transfusion. Since kids are not allowed in the hospital we first had to go home and drop Arjun and then we drove back to the hospital. They had the blood ready for him and gave it to him over 3hrs. He did fine with the transfusion. We got back home at 7:30pm. 

Monday, November 02, 2009

IT

Amaey had his IT today (Intrathecal). He has to fast for it and take a bath with anti-bacterial soap. He is given anesthesia for this procedure. They take him to the operating room and put the sleeping medicine in a tube which comes out of a mask. He usually likes to count something while he falls asleep. He starts planning what he will do in the procedure room while we are driving to the hospital. He will also plan the flavor of his sleeping medicine.
Will it be bubble gum or strawberry. Hmmm how about grape today.
Today he couldn't decide between atoms and planets. So finally he did say the planets. By the time he said his 5th planet he was fast asleep and then they asked me to leave the room.
After an hour when he was in the recovery room they called me. He was still fast asleep when I went to him. The minute he heard my voice he jumped and tried to get up but he was still very drowsy from the medicine. 
It was 12:30pm and he was really hungry by then. All he could think of was to get out of there and get home to his leftover chinese food. Which is exactly what we did.

He was really tired after e got home and took a long nap. He was quite refreshed after and has had a wonderful day.

Monday, October 26, 2009

Home School

We have decided to home school Amaey until the end of winter. The H1N1 is rampant and his immunity is going to be compromised with this intense round of treatment. We haven't ironed out all the details yet but as a first step we have talked with the school district so we will take one step at a time. 
When we told Amaey about our decision he had 1 condition, provided we give him 2 playdates a week with his best buddies.
So now I will add, amaey's social planner, in my job title as well.
I don't think we can avoid germs and life from happening around him but we can definitely limit the exposure and help him stay healthy through the worst months of the season.

Amaey is home

We got the green light to bring Amaey home today. His counts are up. Ofcourse if you see him today you couldn't tell that this kid went through so much suffering. Kids are just amazing. I do not know how they do this. 
Arjun does not have fever either so it was really nice to come back home and have a happy healthy family to be with.
I must say that we haven't quite figured the coming back home day very well. We somehow have the energy while we are in the hospital but when we come home Apurva and I suddenly feel so tired and then we have Arjun who wants all the attention because he hasn't seen the family in a while and Amaey wants to be the king of the house because he is the one coming home and by the end of the day we just feel so incapable of managing everyones expectations.
Well, I can't think right now but this back home day definitely needs a little fine tuning.

Saturday, October 24, 2009

Guess who ate today

I went home last night to find a really slow Arjun. He had been waiting for me and fell asleep on the sofa in the living room. He seemed warm to me at night so when he woke up in the morning I took his temperature and sure enough he had fever. Poor baby was feeling really sick today. I stayed with him the whole day. His fever kept coming and going. He has been quite a trooper and he ate some dinner before I left for the hospital.
While at the hospital Amaey's fever had not returned so at least that was a relief.
Apurva is home with Arjun now and Amaey and I are in the hospital watching Looney Tunes. Amaey had a food request so I made him corn soup and cheese quesedilla and apple cider bread. It was wonderful to watch him enjoy his meal.

We are still waiting on Amaey's culture but we do know that his flu swab and chest xray were negative. He is still neutropenic so they will not let us go home until his numbers come up to a safe place. Right now with Arjun sick we would rather have Amaey in the hospital so that both get to recover and not catch each others germs.
That's All Folks!

Family and Friends

We know that everyone is concerned about Amaey and our family. Lot of friends and family have called to ask how they can help. We just want to say that we are touched by your love and support. Right now we have my parents so support, food and Arjun are taken care off. Other than that there is not much to do. Apurva or I prefer to be by Amaey's side when he is in the hospital. If he is not in the isolation room as he is this time, we love to have friends stop by. Amaey likes company too.

Once my parents leave we will reach out for help. Until then just send good positive thoughts our way. Amaey is a special child and he has a lot to offer to this world. We want to see him grow up and put this all behind him. 

No fever

Apurva is in the hospital with Amaey today. Amaey picked up the phone and talked with me. Wow, he sounded much better. Apurva said he ate a little which is wonderful compared to yesterday. He did not get a fever last night and we hope that it stays that way.
He is getting 3 kinds of antibiotics and to be safe they are also giving him flu medication. One of the antibiotics gave him an allergy so he also gets benadryl.

When I took him in on Thursday he was so weak. He did not move for the entire day and slept the whole of Friday. I could not motivate him to move, smile or do anything. It was really sad to watch him feel so bad. That is not Amaey, he will always make an effort but when he is so low it means he cannot take it anymore. Finally around 7pm I did force him to watch Project Runway with me and then he asked to change to his favorite Food Network. Slyly my plan worked and I was happy to get him out of his funk. When I left the hospital he was eating his banana and dhokla that Ba had sent for him from home. 


Friday, October 23, 2009

Amaey in the hospital

I had stopped contributing to the blog because, a) I felt tired writing 
about what we are going through b) things are as per protocol 
c) life is just plain busy. However, I have a lot of friends calling and 
emailing and then family all around the world wonder about him.

The last 2 weeks have been particularly hard for him. He started 
his delayed intensification on Oct 12. The 3 days in the hospital 
with chemo completely knocked him down this time. He had high 
fever the entire time and came home with it as well. After a few 
days of rest he was feeling better yet not his best. On 19th we went 
in for his routine blood test and later that day they told us Amaey 
was neutropenic and needed a transfusion. So on 20th I took him 
for that. He usually perks up after a transfusion but this time around 
he did not. He was still dragging his feet around the house and not 
really eating anything. On 22nd he threw up in the shower, I got 
worried so I emailed his doctors. I wanted them to take a look at 
him when i brought him in for his routine blood test.

They decided to admit him based on the symptoms. He had a high 
fever too so now he is in for at least 3 days. They are trying to rule 
out the flu or H1N1 or any other infections. I have never seen Amaey 
so sad and that really breaks my heart. He is such an upbeat child, 
looks at the positive side and takes everything in his stride. Right now 
he is being pumped with so much more medication. I don't know how 
a little body can take all this toxicity. 
I believe in silver lining but I really do not see one with all of this pain 
and suffering.

Friday, July 31, 2009

Uncle Jed’s Once-Daily Power Green Shake

Raj sent this recipe to me  couple months ago. I try and make this shake as often as possible. Amaey is not a fan of it so it makes it a little hard to make it everyday. However, everyone in the family drinks it now and that is a really good thing. Amaey watches everyone gulp it down so he cannot really complain.


Recipe makes 2 full glasses of Power Green Shake


Handful of Raw Spinach leaves with its stems cut off

Half a handful (a cat’s mouthful) of Fresh Wheatgrass

One Fuji Apple cored and sliced (leave skin on)

One Cup of Filtered Water

Quarter Cup of Fresh Apple Juice

One full scoop (2 tablespoons) of Vanilla flavored Whey Protein Powder (with no

dairy or sugar)

One Tablespoon of Greens Powder (with MSM)

Half an Avocado


Put the above ingredients in a Blender and liquefy it. The more liquefied the better. I sieve half of the shake so that it goes down Amaey's throat easy. He tends to gag easily. Sometimes I also add more apple juice for him.

Pooja's juice

A mom contacted my via one of the blogs. Her daughter has ALL as well.
She sent me this recipe for a fresh juice-
- carrots
- brocolli
- spinach
- apple
- orange
- fresh turmeric
kiwi
- celery
- red grapes
Add nothing to the juice, just all the fruits and veggies.

I think this sounds wonderful. Turmeric is a natural antiseptic so I like that. I will definitely add it to our daily regimen.

Day 3 in the hospital

Day 1 goes fast because we check-in and we are fresh. He can still move around since he is not hooked up with an ivy right away. For the first 6 hours he just gets hydration and after that is over they start his chemo.

Day 2 is relatively fun. Chemo is still going through the body. It hasn't suppressed his appetite just yet. The Wii is rolled into the room, there are TV shows to catch-up on. Games to play.

Day 3, is another story. He starts asking to go home. When are we leaving. What are we doing today. I have done everything. I'm bored. He is getting a bit stir crazy. He also slows down by day 3. The chemo has made it's way through the entire body, his appetite is diminishing.

Well, we had a fun time today- 
- Amaey finished up Kumon first so that he could play the entire day
- Rita picked-up Arjun from school and came over with her kids and yummy lunch
- Sid, Arjun, and Amaey played Wii for a while after eating lunch. It was hard for them to leave
- Arjun made some wonderful creations with Legos
- After all that excitement a nap was overdue. 
- We played perfection and got greedy and beat the timer by playing for 30sec and 20 sec instead of 60 sec 

It was a fun day after all.

Thursday, July 30, 2009

Hospital week

This is Amaey's hospital week. 
This is the first hospital stay where we do not have any family back-up. My sister flew in for the first stay. My parents flew-in for the next 3 stays. This week Arjun is in camp only until noon so I was scrambling to find a way to balance Arjun's life while running to the hospital to admit Amaey and get him started on his chemo.

We were trying to prepone his hospital stay so that he is free on his b'day which is next week. Thus the last minute scramble of events.

So far the hospital stay is smooth. Amaey and I made bookmarks yesterday. Today we will do some foam art. And play blokus and math go fish. I'm trying to find 2 art activities to intersperse with his Wii, TV, kumon, and computer time.  

This time around he is at a different hospital a little farther south so his friends cannot come and visit him either. However today we have a surprise planned for him. After I pick-up Arjun from camp we will go to CPK and get Amaey his favorite food and take it to the hospital. We will all eat at the hospital and Arjun will get to spend time with Amaey which should be fun.

Amaey's new treatment plan

The treatment plan with Amaey's relapse is pretty intense.
He has to undergo chemo in the hospital so every 3 weeks he is admitted in the hospital for 3-5 days. He also underwent 12 consecutive days of radiation.
He has 1 more round of hospital stay for this round. Then for the next 4 weeks he is off the hook. He will get his chemo as outpatient. But starting end of September he will undergo an intense phase of treatment with hospital stays again for 6 cycles which will take us until March of 2010. 

This is all truly unconceivable. 

We are taking each day at a time. It is really hard to think of after the treatment at this point. We are scared to think about that. A relapse can shake the ground you are standing on. All those positive beliefs, the silver lining... everything evaporates in thin air.

Sunday, July 26, 2009

Waiting room

You are sitting, waiting, in a big waiting room
waiting for them to call your child in
Or, waiting for your child to be out of a procedure
You look around at shuffling faces, lost in their thoughts
Some sitting uncomfortably, fidgeting with their iPhones, getting up everytime a staff looks at them
I want to go and make a conversation
But what do I say?
What do I ask?
What can I offer in terms of solace?
What do I share from my experience?
This is one socially awkward place where familiarity doesn't pay, experience doesn't bode well, words of encouragement and hope feel pretentious
How do I strike a conversation?
Do I want to let them know that I have been there and done that just to find out that their pain is greater than mine?
Do I really want to know?
Do they really want to hear what I have to say?
I think I will just stay put, and let them figure it out themselves.

Thursday, July 23, 2009

At the clinic

A child walks in -
hunched up, dragging her feet.
Parent follows, overburdened with bags.
A pillar of strength, both- in their own right,
join the families, waiting, waiting for their turn
for their turn to join the elite group of strength & perseverance.
To add one more visit, 
one more poke, one more check-up,
to their long list of achievements.
They walk around the clinic, some like ninjas,
some on their wheelchairs, some wheeled in their radio flyers, 
some kicking & screaming and dragging their feet - 
mad at their caregivers, mad at their families,
mad at everything that lays eyes and hands on them.
A child walks in, sometimes it's an in and out, or a few hours. 
Sometimes it might take an entire day, or more.


Sunday, July 19, 2009

January is gone and June is here

It's been 5 months since I have returned to the blog and I must say these were the busiest 5 months I have had in a long time. Busiest, life changing and heartbreaking.

After enjoying a month of cancer free Amaey we got the news we were really not hoping for... "a relapse". On March 23 Amaey had a relapse of ALL. We started treatment right away. Now he is on an intense 2 year plan. 3.5 + 2 = 5.5 years.

Monday, February 02, 2009

Time to celebrate. Come one. Come all!



January 31, was our party for
Amaey's end of treatment.
We asked
Amaey if he had any special requests for the party, if he would like a theme, a clown, a mad science lady.... He said, I want lots of food, music, and all my friends.
So we did exactly as we were i
nstructed. 
It was a simple, fun party with a small band, hot
quesedillas, sangria, and many more things to eat. A beautiful cake from Masae Bakery in Berkley. Beads to make take home gifts. Lots of love and laughter.

Tuesday, January 27, 2009

End of Treatment!!

January 26 2009, Amaey is finally done with his treatment for ALL
!! Arjun did not go to school, Apurva and I took the day off and the 4 of us went to the hospital for Amaey's last treatment. We took pictures of everything Amaey did... I wanted to document it all.
Later we went to the Sharma house to celebrate with Izzy and then to Sino for a celebratory dinner. Finally around 9pm I took Amaey to the Moussa residence. From there I took Gabriel and Amaey for ice-cream. This was a plan concocted by Amaey. The last day of treatment was carefully choreographed by Amaey  and we had to make sure we did everything. Frankly, we would do anything to make this all happen. This was a special day for Amaey and he deserved to get what he wanted.

Wednesday, January 21, 2009

Last Chemo

Jan 20 was a historic day in the life of America. We swore in the first African American President. 

Jan 20 was also a historic day in the Shah household, it was Amaey's last chemo day. We are getting there for sure. 1 more week and on Jan 26 after his procedure they will stop all his meds.

On another note, today Kids and Art got nominated, along with several other individuals, to participate in the Man and Women of the Year campaign organized by the Leukemia Lymphoma Society. 

Tuesday, January 06, 2009

Happy New year!

Might sound music to your ears but it is true. we are finally in the home stretch.

Amaey's 3.5 year treatment will be over soon.

Here is to Hope, Good Health and New Beginnings. May this year bring the needed stability.

These are my words for whoever is up there with a strange sense of humor-- Don't look at me, don't stop by to check on me. You can simply bypass me and I'm sure we will be fine. I don't want a wow, a bang, a breakthrough. I just want to be me. I just want to enjoy my kids as normal healthy kids. I just want to be normal and finally rest my guards.

Have a wonderful 2009!!

Saturday, November 08, 2008

Amaey is 6

We celebrated Amaey's 6th b'day. I couldn't get over the fact that he has spent half his life, exactly half his life in treatment. Crazy huh!
We celebrated it in small bits. Few days before his b'day we surprised him by inviting his special buddy Gabriel and Christopher, Elias, Andrew and of course Arjun to the Lego store. After being totally surprised and thrilled to see all his favorite people at his favorite store they checked out all the new clone wars lego sets, checked out every inch of the store, played with some of the swords, built some lego contraptions and once they were hungry we walked over to CPK and had his favorite pizza dinner.
The night before his b'day, I was working and Amaey comes and sits next to me around 11:30pm. He did not seem sleepy at all so I decided to offer him a midnight snack and keep him up until midnight so that I could sing Happy Birthday to him at midnight.We watched some TV, ate snacks and looked at animated birthday cards online and sang Happy Birthday at midnight (at least 10 times) and then ... On his b'day day we had some of his super special people over for dinner Aditi and Rita, Raj, Sid and Nooni. A special night where he decided the menu (cheese quesedilla, guacamole, chips, spanish rice and black bean soup) and cake.
It's beautiful to see them grow. 

Wednesday, June 27, 2007

Disneyland Summer 07












We went to Disneyland on June 18 on the first day of kids summer break. This summer since Amaey is doing well we decided to hit the jackpot and take all the vacations and family travels.
We drove to LA and spent 1 day at Disneyland and the other at California Adventures. I usually am a snob about going to Disney but this time we planned it such that no one felt burnt out and the kids were so well behaved that it was a wonderful family vacation.

The 3rd day we went to Camarillo. Our family loves the sand and sea and what better place than Camarillo. Seriously... the entire beach was to ourselves, we had a picnic basket full of goodies and lots of sand toys. The boys went walking on the beach and collected a lot of shells and rocks. Arjun, Amaey and Apurva built a beautiful sandcastle, our family tradition.

While Amaey and Apurva took a nap Arjun and I walked the beach and looked for crabs and climbed some rocks. Before we realized we had spent the entire day at the beach and were really satisfied when we hit the road to drive back home.

The most amazing thing-- Amaey jumped the waves. He went all by himself to the water and stayed there. This is unlike him because he used to cry like crazy at the sound of waves crashing the shore and would run as far as possible when the waves would come in.

Update on Amaey


Amaey started the 2007 year really well. However, towards the 2nd week of January the school started calling us to inform about a strep outbreak or potential infection lurking. There were weeks where I would drop him and bring him right back beacuse of some infection or the other. Amaey kept getting colds that he could not shake and would extend into a bad cough.
Around Febuary Amaey got really sick we had to take him to ER. Apurva stayed with him the entire night. The hospital was worried about Pneumonia so they did a lot of tests.

Finally they let him come home around 5am. It was a boderline Pneumonia infection. This is when we decided to take him out of school. We felt that the entire school going experience was being dilluted with all the illnesses and irregular dropoffs.

I signed him up for soccer, mad science, art and music. This helped him meet other children without being in a confined environment for too long. This was definitely the best thing we did for him. He flourished with all the social interaction and became independant as well and is now looking forward to Kindergarten. Yup... Amaey starts KG in September.

He has made some wonderful friends this year. He met Gabrielle at art class and they had an instant connection. They ended up in the same science and soccer class so that was really fun. He also took music with his friend Dylan and has had playdates with Peter. He sure is blessed with a big smile and a warm heart.

Amaey has also become really close to Arjun. They spend every waking hour together and it is really special to see their bond. When Amaey has his 5 day challenge Arjun gets worried and if Amaey cries alot Arjun will start crying because he feels bad.
Amaey has found a new passion for Lego thanks to his brother and he wants us to take him to LegoLand for his birthday instead of a birthday party.

He is becoming an avid listener. If you read books to him he will stay there snuggled up with you for hours. He loves ears... maybe I should say he has a fetish for ears. When he is sleepy he will start playing with his ears however he prefers Apurva's ears the best. But recently their friend Sid took a runners-up place next to Apurva and it is really cute to watch them.

Camp Okizu 07

We went to Camp Okizu again this year. We decided to go early in April which was not perfect timing weather wise - regardless we had a great time. The minute we got there the boys ran off to play with the ball game. They were really comfortable and that was great. We played sorry and chat with other familes. The night was freezing cold. We did not have enough blankets to keep us all warm and next morning it started to rain just as we were making our way to the zipline.

As we stood in line it started pouring-cold rain and we decided... what's the worst that can happen? We all had such an amazing time. Amaey did the zipline all on his own and that was quite an accomplishment. Arjun moved on to being tarzan and climbed a tree and swayed off to other trees while Apurva decided he wanted to cross trees mid air.


We decided to leave that night because it was really pouring and did not seem like it would stop the following day.

We are already looking forward to our next year at camp okizu.

Team in Training

I joined TNT on Feb 07 and trained for the half Marathon. My event was on May 6 at the Avenue of the Giants in Humboldt county. It was a wonderful experience. Both Apurv and I felt that we did not have a choice in inviting ALL into our life but now that it is an integral part we might as well learn more and do whatever we can. The pictures below are from (top to bottom) 15 miles, 12 miles which was our midway madness and Arjun and Amaey gave out medals to everyone. Amaey was also the honoree of the day, 10 miles and 6 miles respectively.
































When I started the training and completed 2 miles the first 2 weeks it felt like a lost cause to try for 13 miles. However, the training was really good and the coaches and mentors and team leaders were all genuinely vested in the event. I finished my event in 3hrs and 5 mins and felt really wonderful to have the 3 boys at the finish line.














I have signed up for the next season and am planning to walk-run the Nike half Marathon on October 14 and Santa Barbara half on Nov 3. Will keep everyone posted.

Tuesday, January 09, 2007

January 9 2007

Happy New Year.

Apurva and I went out for dinner with friends on New Year's Eve and the kids were home with 2 other kids and our nanny. I did not stare at the phone, did not have it on my table while eating dinner. It was cool. I just checked on them once and that was it. Unlike last year when our family celebrated New Years Eve in ER and did the countdown witht he ER docs.

This year tested us as a family. We were stretched in every direction and as life usually goes... nothing else slowed down. Arjun still had school, activites, homework, Apurva still had work, late nights at work and deadlines, sinks filled up, light bulbs blew off, yard needed maintenance. On top of this we seem to have taken the treatment in our stride. It's part of our TO DO list.

Every monday is a busy day, Pick-up the boys, take Amaey swimming, after I change him at the pool I put his Embla cream( a numbing cream) on his arm and drive to the hospital for his blood test. From there we go for Kumon and then we get home. A normal day huh!

No complains, seriously. I would rather have it that way instead of making it a big production everytime we take him to the hospital.

Saturday, December 09, 2006

Nov 22 2006

Wrote this in November but did not have a chance to publish it so here goes...

This Thanksgiving was normal. We did everything as planned. I kept staring at Amaey, checking his forehead for fever, I kept waiting for things to get wrong. But the weekend went beautifully. We had really wonderful family time.

It's been a year since I started this blog. It has been a year since Amaey was diagnosed and is on treatment. It has been a trying path but one that has taught us a lot.

Wednesday, October 04, 2006

School

Amaey is back in school this year. This is really great because it means that he is doing well enough that we do not have to worry about casual sniffles and such.

He has done really well in his first month. He does get chemo once a month and steroids at the same time so that slows him down a bit. But compared to last year where he was happy for 2 days out of 7, now he is happy for 3 weeks out of 4.

His hair is all back and we had to go and get his first haircut as well. He was really thrilled to get his lollipop at the end. Can you imagine not getting a lollipop for almost 9 months??? That's major withdrawl.

Camp Okizu

We went to Camp Okizu on Sept 2-4. This camp is organized for Cancer families. It was a 4.5 hour drive east of Sacramento. We had a wonderful time. They had so much to do for the entire family. We did not have to worry about anything. We had a cabin with a deck, breakfast, lunch and dinner were cooked for us. From 9-12 they had activites for kids based on their age while the adults could chill or participate in group therapy with a doctor.

In the afternoon we did the zip line, Arjun climbed redwood trees. I climbed a tall tree and mid air crossed from one tree to another and belayed down and Apurva was our tarzan jumping from one hoop to the next on top of a tree. Amaey sat and watched his crazy family.

Later the first night they had a camp fire and the kids had a blast singing campy songs and eating smores. Second night they had a dance party. Amaey and Arjun danced till they dropped.

The best part was sleeping outside under the big tall trees. It was beautiful. The weather was perfect...

What amazed us was that this organization runs on volunteers. Except for maybe 2 people that are on a payroll they had 30+ volunteers of all ages. We saw a lot of teenagers. Some were cancer survivors, others siblings off. A few grandparents in the midst as well.

Wednesday, August 16, 2006

Am I going to be blonde

Now that Amaey's hair is coming back he very seriously asked us if he was going to get blonde hair. All of us in the room cracked up hysterically. He did not know what was so funny... he just stared in disbelief.
I don't know what made him think about blonde hair but just visualizing his dark face and features with blonde hair does crack me up... Some day as a teenager I have no idea what this boy will end up doing. But on my watch I'd say the new set of hair looks pretty darn black to me.

Port is out

Amaey underwent a little surgery on August 15. They removed the device called Port that the doctor had implanted earlier in his treatment. This little device was in his chest area. They used it to give him is chemo and transfusions and such. Since we use it once a month the doctors felt it was safer to remove it to avoid infections due to infrequent usuage.

He still has stiches and a small bandage. But once that will fall off I'm sure Amaey will feel the difference. Apurva took him for this procedure and he told me that Amaey was amazingly brave and did not cry when he woke up from the sedation. I do not know where he gets his strength from but it sure is wonderful.

Wednesday, August 09, 2006

First vacation

Earlier in the month- Amaey, Arjun and I went to Detroit to visit family. This was our first vacation via plane. I was a little nervous but all went well. It was a great getaway. A much needed change for him. The highlight of the trip was The Henry Ford museum. For a child that lives breathes hotwheels... this was like Mecca for him.

Also spending time with his aunt, uncle and cousin sister was quite a thrill. Houses in Detroit have basements and that was a super novelty for him. We did have to go and get blood test done while we were there but it was relatively painless. Overall he did amazingly well healthwise.

Amaey's Birthday party




We celebrated Amaey's 4th b'day on July 16. It was wonderful to see him enjoy with his friends amidst music, singing and parachutes.
It's really rewarding to see how well he is doing.

He goes to the clinic every week for blood test. After the test results are back the doctor calls and based on his results we give him his oral chemo tablets. Once a month he goes in to the clinic for Vincristine which is a chemo they inject through his port. He also gets his oral tablets and a 5 day dose of steroids. This usually knocks him down for 5 days. He is usually slow, highly emotional, indecisive and low after this. Every 12 weeks he has a spinal tab procedure and for this he has to undergo anesthesia.

I'm sure all of this must sound too much. But, from where we were... this is very easy to handle. Much more manageable and normal.

Graduation

June 7 was Amaey's graduation from his Montessori. The director/founder of the school was retiring so the school closed down after 27 years. This was a special day for us because of everything Amaey had been through.

Here are some pictures from his graduation day.


Friday, May 19, 2006

Over the hump

May 18th we started Amaey's maintenance phase. In this phase Amaey will get chemo every 4 weeks and will undergo procedure with anesthesia every 12 weeks. We will need to go for blood tests every week but that's all.
The conversation with the doctors made it seem that life should be back to some form of normalcy. Amaey can go back to school fulltime, we can start his swimming and soccer... the three things he really loves.
So this made me feel like our summer will be less anxious.

I want to take the wait and see attitude. I'm not running out and screaming with joy and nor am I already thinking about what should I be doing now. I need to see how he does in this new phase over the next few months. Settle into the new schedule and then start him off in preschool and see how he does with a normal life and only then will I start asking what about me...
Because everytime I ask the me quetion and brave myslef to take up projects something brings it to a halt. I'm a bit tired of picking up and starting fresh.

We haven't brought out the champagne and celebrated the new phase yet... but I must say there is a sense of relief and now I will have to learn to loosen up a bit.

Thank you all for staying so close to us and helping us get through our really intense period in life. We appreciate every single gesture, every helping hand and personally I thank everyone that listened... and everyone that simply filled in all the gaps in my day-to-day life.

Monday, May 08, 2006

In the hospital

Amaey had a fever on sat around 8pm and I took him to ER. We got admitted that night and are sill in the hospital. Our doctors had warned us about this. His last round of chemo was really strong and that changed all the numbers in his body.

Since he had a bad cough they were worried about pneumonia but a chest xray rulled that out. They ran a bunch of tests on him to rule out all other infections and luckily all came back negative. I just came back from the hospital and he is looking really good. No fever since yesterdy so that is a good sign.

Once his counts are back up they will let us go home again. The main doctor that has been assigned to Amaey's case looked at me and said... hey we haven't seen you here since his treatment so you are doing really well. Frankly this is routine for his treatment for kids to end up with infections and fevers and then be admitted.

The fact that we are so close to the hospital, have such a good team of doctors and Amaey is really chugging along well is a good sign.

Sunday, April 23, 2006

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.

Wednesday, April 19, 2006

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.

Saturday, April 15, 2006

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.

Thursday, April 13, 2006

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.

Wednesday, April 12, 2006

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.

Wednesday, March 29, 2006

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.

Monday, March 27, 2006

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...

Monday, March 06, 2006

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.

Sunday, March 05, 2006

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.

Monday, February 06, 2006

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.

Saturday, January 28, 2006

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.

Monday, January 09, 2006

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.

Sunday, January 01, 2006

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.