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.

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.

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.

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.

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.

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.

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.

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.