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 instructed. 
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.

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.

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. 

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!!

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. 

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.

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.