You are on hold, please wait.

What does it mean to be on hold. I'm not one of those that can ever answer that question. Or I should say I wasn't one of those. For me being on hold was not an option, you did what you felt like, when you felt like it. If it is important to you, you will find a way to do it why should something hold you back.
But being on hold becomes part of your life when you become a cancer parent. You know in India when you would call a government office you would get a  recording that would say, you are in queue please wait. Yup that is how life is for a parent with a child fighting a life threatening disease.
You are given a timeline and you dash to make it through, rushing for the finish line. You put your entire life on hold to make the deadline. When you get to the finish line, suddenly you find out that there is more, the race is not over yet. You pack-up your sandwiches, put on your running shoes and get on track, again. In the meantime life has passed you by. More than half of your child's life has gone by.
You look for the silver lining. The brighter side of life. The meaning beneath all of this. The underlying message.
Funny thing is, this staying on hold business can become part of your life. You can get good at it. You can suddenly carve out a niche by figuring out how to make something out of nothing. You can become a queen at making the most of cancelled plans. You can carve out some memories from nothing. You learn to make the most of rainy days.
Being on hold becomes an alternative lifestyle. You know, like being a hippy. No cares, no time lines, nowhere to go. Just love and your, forever on hold, lifestyle.

Where are we

We are here, trudging along. When the treatment slows down the anxiety amps up. You don't need to be hospitalized, don't need to see the doctors that often, don't have many alarm bells ringing either. BUT restless nights and scary dreams set in.
It is too quiet, is everything all right. Should we be doing more. Should we be checking for relapse markers. Crazy thoughts that should not really be entertained just come in, uninvited.
Amaey is at school now except for the once every month chemo which knocks him out for a few days. Arjun is in 6th grade still playing his tabla and now guitar as well. He is taking a break from 3 times a week of swimming and is trying out fencing and he really likes it.
Apurva is busy with wrapping up Cars2 and having fun with his iPad.
I got to focus on Kids & Art and we did an Art Walk in December 2010. It was a wonderful event. We had almost 60-80 pieces of art displayed at 6 local businesses. It was phenomenal to pull an event of this kind. What amazes me is that we human beings have the power to do whatever we put our hearts and minds on. I don't know how things happen but they do and when you look back on them, it feels like an out of body experience.
I'm also back to teaching and taught 2 sessions last semester and will do the same in the spring session. Sometimes I feel like I should not be working at all and should instead focus 100% on Amaey's health. So these 3 weeks that college is out is a good trial for that and I have to say that I cannot do that. I just can't. I'm driving myself crazy with anxiety. A dear friend just got diagnosed with cancer and it has brought the worst memories back from our first year of treatment. I had thought that I had moved on and forgotten all of that but it's not true. If I did not work and keep myself busy I would become a nutcase.

His Holiness

Today Amaey and got to and meet Dalai Lama at the Ronald McDonald House.

Amaey is on a 4 week chemo cycle and is hit quite hard because of it. This was his third week and his counts were low and he is neutropenic so they could not give him all the chemo he needed to get.
He had to stay home from school and I cancelled all his extra curricular activities for the week.
However getting the blessings of Dalai Lama does not happen everyday so we really wanted Amaey to attend this event.
His Holiness is in town for a conference on Compassion through Stanford and the Compassion Project. One of the donors arranged for him to stop by at the house and one of the LPCH social workers asked us if we would like to go and I jumped on it.

It was a mixed experience, on one side Amaey was neutropenic and I had him in a room full of people. We were supposed to see him at 2pm but he did not show up until 3:45. I could see Amaey fading and I was feeling really guilty. However when he walked in, he quietly went to the kids, held their hand, kissed their foreheads, hugged them and then he stood quietly for a few minutes just looking at everyone. I felt so emotional that I started crying. There was something in the room, there was this warmth on his face, there was this purity in his look. It was beautiful.

When he finally started talking he said, I know what you all are going through is really sad. He said that there are only two things that can happen, either your child can get better or not, the most common feeling during such a time is worry and sadness. However he sad, if we spend all the time worrying and being sad we are losing focus of the one thing we should be doing, giving love and affection to the child.
Sometimes sadness can takeover life and then we have space for nothing else. He talked about how fortunate we were in this country to have all the facilities and care compared to many other nations where children would have died from sicknesses that he felt around the room.
There was a 3 year old boy who was getting a kidney transplant tomorrow and his holiness blessed him with a warm hug.

After he was done talking he placed a white silk scarf around each child's neck. I felt sad that I did not get a one-on-one experience with him but then I realized that I had already felt touched by his presence, I really did not need a physical confirmation. I was there in that small room very close to his Holiness and I felt his intense presence.

When I asked Amaey about his experience, he was so untouched by the whole thing. He said he was bored and really wanted to get out of there and that his holiness used the word sad too many times. I was amazed at his words and his honesty... I'm sure some day he will make his own connection and feel his own tug. When that happens I'm sure he will feel elated and fortunate.

Chemo and all

Amaey has a new protocol where he goes in the hospital once a week for 4 weeks to get his chemo. It takes us  5 to 7 hours on those days. These are long days but the highlight is... we come home. Today is the 3rd week so after the 4th cycle he will be on his honeymoon week again where he goes in once a week for 6 weeks for labs and then take his oral chemo pills.

Grandparents are in town and it has been wonderful. We took a holiday and went to kauai for a week. We had Amaey and Apurva's dad to worry about. Luckily everyone came back home unharmed and we did not need to pay a visit at the local hospital. However, we did locate it and made a mental note of the distance from the hotel and such.

So far Amaey has done a Lego camp and half of Marine Science camp. The week he started his Marine camp they called and told me he was neutropenic so I had to pull him out and keep him home. He was quite bummed. Frankly so was I. I was looking forward to a week of exercise, some time to work, and some time to myself. So when I had to keep him home Wednesday onwards I was really upset too.

Amaey's long hospital days are almost sanctuary for me now. I have a day where I'm not running around. I can catch up on work, calls, and anything else that needs attention, like cutting my nails. Yup I do have a nail cutter and filer in my purse. On the other hand the hospital days almost worry me because any amount of exercise I might have done will go undone in one day because I will end up eating out, snacking on a cookie with my coffee and will probably be sitting on my butt for the 5-7 hours because I don't like to leave him alone. So weird that I think about all this but then this is my life now... so what do I do? I can't shove these thoughts, these selfish, worldly thought from my mind. They are just a fact of my life.

First week of summer break

The weather can get hot or cold and windy sometimes but the shah family is cruising along. Kids have been up at 9 and 10am, Have been catching up with their friends, long extended play dates, fun movies at home, burnt food from mom.

Today is fathers day and after a late slow start they are quite excited to celebrate it.

To dexamethasone and beyond!

Amaey's 7 day dexa pills in May became the busiest time for me. I went to Trader Joes or Safeway every other day. Not kidding about it. I could not believe it that my cart would be full everytime I went to the grocery store. Amaey was so frustrated that all he could think about was food. He would sleep with a big menu planned for breakfast, he would plan his lunch menu before getting up from the breakfast table, and scan the freezer and fridge for all his snacks.

He did try to go to school some of those days but it was hard for him. One day I went to pick him up at 10:30 after Apurva had just dropped him off at 8:45. He was curled on the floor of his class. He could not stand because he was starving.

Well, we are so glad that that is all behind us. Amaey had a procedure on May 25th and that marked the beginning of his maintenance treatment. Now he only has to go in the clinic for blood tests and not even stay for the results. we call it the in and out burger days. The hospital calls us with his lab results and then we can give him his oral chemo pills. This is a 5 week honeymoon period.

The icing on the cake was, Amaey got to attend the last 2 weeks of school. He got to participate in the art and science day that he absolutely loves about his school, he got to participate in all the end of the year festivities, he also got to go for a classmates b'day!! How normal is that? We were so happy for him. Bookending the school experience with homeschooling in the middle. He does not remember not being in school anymore. For him, he was at school the entire year. I love this short term memory children possess. I wish we had that too. I wish I could forget all that he went through this school year.

The last 2 weeks of Amaey being in school were wonderful for me. I was like a bird out of her cage. I caught up on life's finer moments and practical things. Got my car serviced. Got a haircut. Made a visit to the dentist. Bought gifts for all the events that happened in the year, like our neighbors newborn who is already 1, my friend Renata's 2nd baby gift, and I haven't even seen the baby yet, mailed gifts to my dear Carmen and her twins. I still have a long list.... The best was, walking into a spa first thing in the morning and getting a massage, extremely impromptu. They happened to have an opening and I jumped on it. Thanks to my sister who sent me a spa certificate I indulged. I caught up on work for Kids & Art, had lunch and dinner dates with friends and colleagues I so wanted to reconnect with.

All in all it felt like a normal life. I wasn't looking at my phone the entire time for emergency calls from the school. I wasn't canceling out from commitments at the last minute. I wasn't on high alert. Well, I was out and about doing things. I was relaxed, happy, myself.

We are looking forward to a good summer. I don't know what mood changes due to the meds will occur after the 5week honeymoon is over but I will think about it when i get there. Until then, bring in one more margarita won't you!

Status

Last few weeks have been quiet, busy, hectic, and restful at the same time.

Amaey has started his intense maintenance phase. We have to take him in every Monday. he gets a lab draw and based on his counts things proceed. Last week was round 1 and he got Vincristine, Peg and 7 days of oral pills of Dexamethasone. Sometimes I feel like we trade one monster for the other. This whole week if you see Amaey it is like you are watching a ghost. He is so tired, moody, and sad.

Luckily next week he only has Vincristine. It is the Dexa that drives him crazy. It is a steroid and chemo.

I finally got to catch-up on work. So much had piled up that I did not know where to begin. So many fires to fend with the students. I'm also re-writing a class and those deadlines had piled up too. 2 weeks of just sitting and working has helped. I'm finally caught up.

Arjun has had some really busy weeks too. He had state testing, Science Fair due, Social Studies paper, swim meet, and tabla concerts. I suddenly went full throttle on his life and I feel a bit caught up with him too.

We had a scare with Arjun, his urologist saw his routine ultrasound and wanted some more tests. He had to undergo a procedure on the 15th. We were really scared of the outcome. On the 27th he had another test and then we got to meet with his Urologist. Long story short, all is fine. He was born with one weak kidney and the doctor thought that the kidney was failing and we might have to remove it. We know that at some point in his life we might have to do this but as a team we were hoping that wasn't going to happen at this stage of his life. Luckily she saw no extra damage.

All I can say is- No one knows what the future can bring. Put your energy into now.

Etoposide

Well, this marks the official end of intensification.

Today we went in for Amaey's Etoposide. We also had a doctor meeting to go over the plan for the next 6 months. They had to hydrate him and give him pre-meds because he had a reaction to this drug. They also decided to administer this medicine at a much slower pace then usual. So our day started at 8:30 in the hospital and we did not get done until 5pm. At some point I had to leave Amaey alone and go pick up Arjun from school and bring him to the hospital.

Arjun was feeling sick, his head was hurting and he threw up as soon as I picked him up. Luckily I knew that he wasn't sick. This is his body's mechanism. If he has a cough or has eaten food that does not agree with him, he can throw up and in few hours he is as good as new. I was sincerely hoping that he was cleansing and not really sick, because he was in the hospital, in Amaey's room while Amaey was getting his chemo.

We finally drive home at 5pm, Arjun fell asleep in the car and when he woke up he was a new person. I was so relieved. I was also happy that Amaey did not get any reactions from the meds and we came home.

Amaey is home

Last hospital stay in the protocol is done!!

We are home and so happy that the stay did not drag more then planned.

I dreamt that Amaey had to stay for 4 more days and I jumped out of bed and touched his forehead to make sure he did not have fever. He was nice and cold and I went back to bed, fell sound asleep. This morning they came in with his levels and said he was good to go, of course it takes hours before they can finally set us free, but we were not complaining... we knew we were homeward bound.

Last night I did go to PF Changs while Amaey was in the playroom. Amaey wanted me to pick-up food for dinner. We watched the Food Network and ate our yummy dinner.

Methotrexate

We are in the hospital for Amaey's last hospital stay. He will get Methotrexate this time.

They are watching him very carefully and checking his sodium levels often.

So far they have started his hydration and around 11pm they will start his chemo which will go on for 24hrs.

Then we just wait for the chemo to clear out of his system before we can go home. Hopefully it is a simple in and out.

Arjun, Hetal, Amaey, and I are in the room watching Cody Banks 2. We are waiting for 6:30pm so that we can go upstairs to the playroom.

Arjun is on Spring break so it should be nice for Amaey.

School

Amaey went to his schools open house on April Fools day. He was so excited to be there. He had a big plan and this is what it looked like-

- Ma, drop us at school and look for parking

- Didi and I will first go meet My 3 K/1 teachers

- Then we will walk up to my class

- Go down to Gabriel's class

- Then walk over to Christopher and Elias's class

- Go to the art show

So I asked, how will I find you... no answer.

Finally, we did decide to meet at his class before he went galavanting around the school. It was really nice to see some of his assignments on display. What was most touching was to learn that every morning they still include Amaey in the roll call protocol. How amazing is that?

Also, they had a project called the missing person and the class got together and created a profile to fit Amaey. He is really lucky to have such amazing teachers.

Looking good

We went in for Amaey's CBC today and everything looks good. Now we just wait for them to call us on Monday to admit him for his Methotrexate.

This time his doctor does not want us to go to El Camino instead we will be at LPCH. They still haven't figured out why he got so sick last time so they want him under close surveillance and monitoring.

My niece is visiting from Florida so at the moment we are all looking forward to a good weekend.

Quiet

We have had some nice quiet days. We managed to avoid the ER or hospital run due to fever. This week we also got a break and have to go to the clinic only once for CBC.

We also went to celebrate Holi at Stanford. We did not go last year because we were not up to it. But this year, the weather was perfect, Amaey was feeling good and it just felt right.

The biggest news is that Amaey went to school on Monday after 5 months. It was very emotional. It was a short day at school and he managed it fine.

Happy

Amaey's counts are up and he is not neutropenic anymore!!

He was so happy when the nurse brought his lab results. Before she could say anything he was already asking to go out to eat, go to Adi's b'day, have a playdate, go watch a movie... I couldn't contain him. So he did get to eat at Pasta Pomodoro. He was craving ravioli in creme sauce.

Tonight he gets to go and watch "How to train a Dragon" with Apurva, Arjun, and Amol.

Feel trapped

So Amaey did have a drop in his counts. He is very neutropenic and he needed a platelet transfusion.

We came home after 7hrs at the hospital. Both Amaey and I were feeling very humpoof (Amaey's word for blah). It is Amaey's buddy's b'day party today and he is going to miss it. I can sense how bad he feels. He was really sad at night and I told him I felt the same way. He wanted a head massage to help him fall asleep and he was so cute, he started giving me a massage too. He said because I was humpoof I needed a massage too. He is just so precious.

This morning he woke up feeling blah and I told him to change his day cycle. I asked him to pick whatever he would like to do first thing, even before brushing and he ran off to play his new game on the playstation... I know that will make him feel special.

We started lockdown a week before his chemo. Then we were in the hospital for a week. We come back and we are in lockdown for another week to help him regain his strength and now we need to be in lockdown for another week so that we can avoid the fever and hospital stay. I know he feels trapped. I feel that sometimes. The routine of all of this kills me sometimes. I can't be impulsive and jump out of bed and say today I'm going to do something different.

This whole cycle is so weird. You feel guilty for not being there and you feel guilty for being there too much and wanting some space. I'm just scared of the weekend, that's what it is. I know Apurva and I are constantly going to stare at his face, look for signs check his temperature... it's almost psychotic in a way.

CBC today

Amaey is slowly regaining his strength. He is slow and does not eat much but his spirits are high. He is happy to be home but sad that he cannot see any of his friends or go outside and do anything. However, he understands the meaning of lockdown.

We have his labs today and lets see what they says. This is the week when his counts spiral down and weekend is when we have usually taken him in for a fever. We are really hoping to avoid that.

Amaey is home

Apurva just came home with Amaey. He is so so so happy. He has a smile that looks bigger than his tiny face.

So where are we?

It has been long 4 days and they are not over yet.

I don't know where to begin from since a lot has happened since we got admitted on Tuesday.

Tuesday day was fine until 6pm when the 1st does of chemo was making it's way in Amaey's body. He slowed down and got really cranky and tired. He slept early that night but was up the entire night because he had intense diarrhea. In between nurse check-ins and meds and waking up to go to the bathroom the entire night went in a state of frenzy.

Apurva came in to relieve me in the morning. When I left the hospital at 9am Amaey was still weak and in bed and he sounded cranky too. Throughout the day when I would call to check-in he seemed slow and sleepy. He did not have a fever so that was good. Apurva forced him out of bed around 6pm to change and freshen-up and he went back to sleep again. Around 8pm he tried to feed him some broth and called me so that I could sing to him. I did, and all 4 of us were on speaker and Apurva asked Amaey to say a few words to us... nothing. We all tried to get some reaction from him but nothing happened. I thought he was low energy and sleepy so I did not push it and put the phone down.

After My phone call, Amaey threw up. Apurva said he threw up a lot and then he almost became listless. He stared with his eyes but said nothing. He just stared blankly. Apurva got really scared and called the nurse who called the doctor. I got a call from Apurva around 10pm. He said Amaey did not look good and he wanted me to leave and come to the hospital right away. I reached the hospital to find lot of activity outside his room and atleast 8 people around his bed. Everyone was looking at a still, pale, bloated little child. I do not know what they were saying. They were saying a lot of things. Apurva was trying to repeat the same information over and over again to different folks. Next thing we are taking him for a CT scan. I was holding his hand the whole time. Apurva and I were trying to make him talk, move, move his lids, squeeze my hand... nothing. However, I could eel the warmth from his palm and that made me feel like he was there.

After the CT they decided to take him to the ICU. A lot of different things happened in the ICU. He was looked at by lot of people, new meds, ivy and such. He still looked the same. However, I was still holding his palm and I realized that he was grabbing my finger. He would not let go. That was a good sign. Around 4am we saw his eyeballs move very slightly. I do not remember the time but he was suddenly agitated and tugging his pants, they had hooked some bags for him to pee into and he was trying to pull it off. We were so relieved to see him coming back to life.

Long story short, lot of different things happened in the hours we were at the ICU. Finally at 10ish they moved us to a recovery room in the ICU and that felt good. Around 4pm they moved him back to his room.

He is still weak and complaining of aches and pains. BUT he is much better than he was the night before.

Apparently his sodium was very low and his electrolytes were out of whack. They could not give him his last does for ARC which was due at 4am. The oncologists decided that they will not give it to him anymore. He is officially done with this deathly medicine.

He still needs to get 1 more chemo but they are waiting for his lab results before they can do anything. Not sure when we will go home. I would rather he get better before we leave the hospital. This was bloody scary and we don't want to take any chances.

Last ARC

We are in the hospital for the last round of Cyterabine.

They started the chemo at 4 pm. He is still on prednasone so he is still pretty hungry which is good because the chemo will kill his appetite.

We just found out that PF Changs is around the corner from the hospital, we were so shocked that we did not know that. So Amaey already knows what he wants for dinner tomorrow.

So far so good.

Wow I have cooked up a storm

I'm so tired today. I couldn't figure out why until Amaey came in and asked for some Macaroni and cheese.

He started his premeds this morning. 1 med makes him drowsy and the other med makes him hungry.

This morning for breakfast he had pancakes and sausages with a glass of milk.

For seconds I gave him more pancakes and sausages and some raspberries.

Then the drowsiness set in and he slept from 9am to 11:30am.

Then he was hungry so I made mini idlis, edemame beans, raspberries.

I was eating linguine for lunch and he liked the smell so he took over my lunch.

After everything was done he looked up and said, can I have boiled eggs....

When we got in the car for the hospital I gave him a z-bar and later a fruit bar.

We came home and he had cheese pizza for snack and shared some of my tea.

Minestrone soup and bread for dinner.

Just made M&C and before he left the kitchen he said he was still hungry and he will come back for more food.

Wow, I cannot imagine the kind of havoc these meds must create inside him. It always amazes me.

I feel like I was on his meds... had a roller coaster day at work. I'm re-writing a class for next semester and I thought I was done with my work to find out that I need to re-think 80% of the material. As for the 2 classes I'm teaching the students are dragging their feet and submitting their assignments at the last hour. The class ended today and suddenly I have 24 assignments to check in 2 days.

I think I'm just complaining because I'm dreading the hospital stay. Every speck of my body is fighting right now.

But something wonderful happened to bring a warm fuzzy smile at the end of the day- Kids & Art got it's non-profit status. Kids & Art Foundation is a 501(c)3.