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.

This week

After the Monday chemo, we did not have to go in to the hospital at all. They decided to give him a break from blood test as well. We have had a really wonderful week. This weekend is lock down since Amaey has to go in for ARC from Tuesday.

This is the evil one but if we look at the bright side... this is the last evil one.

I will take him in on Monday for labs and I will start his oral premeds. If his labs look good we will go in on Tuesday whenever they have a bed for us.

We also found out that they have lifted the H1 N1 flu curfew which means that Arjun will be able to go and see Amaey.

Etoposide

We went in for Amaey's day chemo. Since he had a reaction with it last time they had planned to give him premeds.

They decided to give him extra hydration as well since he had vasovagal and had fainted.

It made it a longer day but it worked like a charm. As soon as they gave him his ivy benadryl he was instantly drowsy. He slept through all of his chemo. He woke up 15 minutes before leaving.

The minute they said he was done and ok to leave we literally ran out of there. I just did not want for anything to happen. I wanted us to be home.

Need blood

Amaey's numbers look great .011 but his hemoglobin is low so they will transfuse him tonight. Once that is done and everything is OK we will leave in the morning. He was slow and complaining of headaches so it all makes sense.

This is better than taking him tomorrow or Friday for an emergency transfusion. He has outpatient chemo on Monday so we need him to be strong and ready for it.

Doing fine

Amaey is doing fine. He is a little slow today which is natural but his levels are coming down. He is at 2.4 and as usual once we are at .02 or less they will let us go home.

Today Aditi spent the afternoon with him and that was wonderful. He was really sad when she left. He is really close to her and I can understand that it will be a big loss for him now that she is moving to NYC.

However, he is equally excited because he will get to go to NYC and spend time with her. We have told him that when he is OK to fly we will take him there.

One of the Kids&Art artists

Sanjay Patel, one of our Kids&Art artists who worked with Amaey and other kids, has come up with his second book. This is quiet an amazing looking book. I absolutely want my hands on it. His website Ghee Happy also talks about his first book.

At El Camino

We had a really wonderful and much needed week off.

Arjun had the Presidents week off from school and Amaey was home feeling himself. It was really restful and peaceful.

Over the weekend we went to Napa to celebrate Pratish's b'day and to toast to Aditi's move to NYC. I did not realize that we took a day off like this after almost 4 months. It was so refreshing.

Sunday was another wonderful day. We went to Draeger's in San Mateo to meet the author of 'The Cancer Fighting Kitchen', Rebecca Katz . I had to meet the person that created such a tremendous book that can make Amaey eat Kale and Swiss chard. Amaey and Arjun helped her cook Quinoa at the event. We got to try lots of gluten free foods and I got to meet some more alternative healers. All in all it was a fun outing for the 3 of us.

Today we drove to El Camino after getting Amaey's labs drawn at LPCH. He was good to go so they have started his second-last Methotrexate. Usually this is an uneventful stay and we hope it stays that way.

We are FREE

We just got the OK to go home.

Amaey's ANC is up and they are happy with the way he looks.

He is craving food from a persian restaurant in Campbell so our plan is to pick-up food from there and take it home for dinner.

Status

It's Tuesday, same status quo. He seems to get a fever infrequently so we do not know if something is going to grow in his cultures. But until he has a fever and he is neutropenic we are here. He does have a little energy so he went to the playroom for an hour. I will see how he does after all that excitement.

He took a long nap after coming back from the playroom. We decided that I will stay tonight so that Apurva can work with Arjun on his finals revision. Apurva has taken the day off tomorrow so I will go home and work and pick-up Arjun from school.

Today was one of those days you know will happen but are glad it hasn't. The cleaning lady locked the house real well before she left and Arjun and Vicky could not get in the house after school(Vicky only had the one lock key and not the deadbolt etc etc). I asked them to go to the library so that Arjun could finish his homework. Apurva went home early and picked-up Arjun from the library and went home. Oh Well...

Just checked Amaey's temperature and unfortunately he has spiked one again Arg!! which means 48 more hours over hear.

We are zen.... we will get through this.

Checked into our hotel

Amaey spiked a fever yesterday so Apurva took him to ER around 3:30pm.

His fever came down with tylenol. The CBC came back with low WBC. Neutropenic and fever so they started the ivy antibiotics right away. They did not have a room available until midnight so the two hungry and tired boys had a tough night.

Apparently they transfused him for hemoglobin overnight since it was low. He spiked another fever at 4am and since then he has been sleeping. Apurva is at work, Arjun at school and I'm at the hospital working on my class and waiting for him to wake up.

Transfusion

In the hospital for platelets transfusion. Amaey's counts are low so the choice was to wait until Monday or transfuse today. We really don't need an ER trip this weekend so we went ahead with the transfusion.

They also did an xray on his right foot. Yesterday Amaey slipped while playing and he woke up in the middle of the night with pain and he was limping today. Since chemo can affect the bones they just wanted to be on the safe side rule out a fracture. Luckily it's not. He just needs to put his feet up rest for a few days.

Rest will be good for him because he is really wiped out at the moment.

A scare

We did get to go home from the hospital on Monday evening. Amaey looked ready to go. He was slow but he was fever and pain free for 24hrs so that was good.

Tuesday morning Amaey was slow. He woke up had some milk and went back to sleep and finally at 11am he rolled out of bed. He looked happy and hungry. He was craving pancakes. So the two of us ate a pancakes and eggs lunch and at around 12:30 the two of us started looking for recipes on food network.

Suddenly Amaey complains of a stomach pain and feels like throwing up. We rush to the bathroom and right in front of my eyes, he just sways and loosens up and faints. I tried to hold him but he was so limp that he slipped from my hand and fell on the floor. I picked him up and moved him to the sofa, he was sweating. He gained consciousness and asked for a blanket. He was really low. So I called the hospital and they called us in right away.

I drove like a maniac. Funny thing was, when I put him in the car and started driving, he was fine like nothing really happened. He was reading and alert. It was so freaky.

I put him in a wheelchair and rushed him to the clinic. They were so prompt. They wheeled us in a room and accessed him and took his blood and hooked him to the monitor all within 15 minutes.

Long story short, after an EKG and lots of other doctor tests around 6pm they told us that everything looked good. They said he had something called the vasovagal response. He had a stomach cramp, his blood pressure went down and that caused the dizziness and fainting spell.

We were so glad that was all it was. He is slow and resting today. He is borderline neutropenic, which is expected after his chemo. But he is his witty, comic self.

Wishful thinking

Nope we did not go home on Saturday. We are still in the hospital hopefully we will go home today.

On Saturday after Amaey got his Peg at noon, he was fine. He was in pain because Peg are 2 injections given at the same time on each thigh. Amaey says it hurts a lot. Apurva and I exchanged our shifts and around 6pm Amaey started complaining of eye pain. Severe headache and eye pain. When I touched his forehead to press it I realized he had temperature as well. Amaey's tolerance for pain is pretty high, when you see him crying out of pain you know it is severe. They gave him tylenol and his last dose of Benadryl. I was hoping that would help him. But he was really restless. Finally after an hour of cold water compress and sheer tiredness he fell asleep. The nurse checked his temp and it as still high 39.5. After 4 hours on the mark his temp that had gone down to 38.6 was back up to 39.5. This carried on throughout the evening and night. At midnight his eye pain was severe again and they suggested morphine. I could not consider morphine... it felt too much. I asked for a resident consul and she assured me that morphine dose for kids was not severe. It would help with the pain though.

At 4am he was tossing and turning and exhausted with pain and a sleepless body. I made him sleep with me hoping that would help but finally at 5am I asked for morphine. His pain was unbearable. Finally, the two of us slept soundly until 8:30am when the nurse had to take his vitals. He looked much better I could see that he wasn't clenching as much. However, he needed tylenol again at 9am and then when the doctors came in for their rounds at noon, Amaey had a major meltdown. His intense pain was back. The doctors needed eye drops in his eyes and they were stinging him. He started getting upset with me. I finally had to call the doctor back in the room and have her give Amaey a talk. She was really nice. She stayed until I administered the drops and finally prescribed morphine one more time. She could see that the pain was very high and she really needed him to relax and rest.

The reason I was giving him the eye drops was a decision Apurva and I had made. Apparently Cyterabine can give a form of conjunctivitis thus they put eye-drops for the 2 days of administering the chemo. So either, Amaey wipes his eyes before the drops really go in his eye or the drops do not always go in his eye, whatever the reason, Amaey ended up with the eye pain. So we came up with a plan to administer the drops ourselves just to have more control over the situation.

When I left the hospital at 1pm he was fever free and the morphine had kicked in so I could see that he was more relaxed. Apurva said that the last time they had to give him tylenol was Sunday around 5pm and he was fever free the entire night. He slept well and when I cam in this morning he had a big smile on his face. He is himself today so i dropped him off to school upstairs. If his counts are stable they will definitely let us go home today.

2nd last Cyterabine

We started pre-meds on Wednesday and checked-in to the hospital on Thursday for Amaey's ARC and Peg chemo. Technically we should be home by Saturday but so far that has never happened.

This time around they are continuing his pre-meds round the clock which means he is very sleepy because of ivy benadryl. However, he still went to the playroom yesterday and this afternoon. He is doing well. They just started the 3rd round of the chemo and the last round will be at 5am tomorrow. Around 10am he should get his Peg and then go home by 1pm.

We have a Kids & Art event at my house this Saturday. We have a wonderful artist working with 6 adults. This is art therapy for parents of kids with cancer. We plan to do similar art therapy events every month.

Meds at home

When Amaey came home with the ivy antibiotics, it was a great idea. He could continue his meds without being in the hospital. He was in the comfort of his environment, had all his playdates, got to be with Arjun and sleep in his own bed.

However, I was on the edge. I can only speak for myself... Amaey needed his meds at 8:30 and 11pm and then at 7am and 3pm. We had to take his meds out of the fridge 30mins ahead of time. I seriously could not sleep for those days. Being responsible for your child in this way is hard. I was a nurse, sanitizing everything, flushing him and pushing meds through his port. I kept worrying that if I do something wrong he could get an infection. The night I gave him his last dose, I slept like a baby. It wasn't a hard thing to do but for some weird reason there was so much anxiety.

Back home

We got home yesterday. Amaey's counts were fine and he did not have a fever or anything. He does need to continue his ivy antibiotics so a nurse stopped by yesterday and showed us the drill. Now, I'm a nurse too. I have supplies to open up a small practice of my own.

Restaurants

I was cleaning my wallet and one after another I took out receipts for CPK, Panda Express, Chevy's ...

I started thinking about all the restaurants we have eaten at thanks to Amaey's cravings. I wish I had saved all the receipts, I could have made a nice collage or even a book. I was really curious so I started writing down all the restaurant names and this is what I got-- (the first 7 were absolute cravings from his meds)

- Pasta Pomodoro

- CPK

- Annapoorna

- Fresh Choice

- Chevy's

- Shiki's

- Panda Express

- La Cumbre

- Red Brick Pizza

- Sino

- Sweet Breams

- Yogurtouille

- China Kitchen

- King Yuan

- University Cafe

- Zao's

- Pasta Primevera

- Mr Pickles

- Quiznos

- Amici's

- Shabuway

- Elephant Bar & Grill

There are many more that I can't remember full names of. I remember the time I was at Panda Express 3 to 4 times a week. Amaey would wake up dreaming of the penne in alfredo sauce. Then he moved to the Hillsdale Mall Food Court. I tried everything there while he settled with Panda. At some point I would shrink at the site of the food court. For the longest time CPK was top of the charts. And then he was in a phase where he had to try different cuisine each time we went out.

Quite a wild culinary ride that is still evolving. With his love for science and food I wonder if he will become a food scientist in life.

Still here

Nothing has grown in the cultures so that is real good news. No fever. No chills. But we still do not know what caused these things in the first place so we need to continue the 7 day dose of ivy antibiotics.

The hospital is trying to work with our insurance to see if they can send us home today and they can send a nurse home with the infusion system and the nurse will teach us to administer his meds. We are absolutely fine doing that if it means he can go home. He is doing fine so he might as well be home in his environment.

Jan 19

We came in for Amaey's Etoposide and Cyclophosphamide. The rains made today feel kinda dreary and cynical.

We dropped Arjun to school and drove to the hospital. After the blood test we had to wait for an hour for the results. Results were good and he was good for chemo. Around 11:30am they started his chemo and around 2pm after completing both the chemos they started a 1hr flush. Suddenly Amaey had the chills so I went and call the nurses and then there seemed like an emergency in our room. All hands on deck, Amaey shivering like crazy and a weird sinking feeling.

They need us to stay for 48hrs in the hospital. They need to do cultures and start him on antibiotics to rule out infections. They want to see what is causing this because this chemo would not give such a reaction. Also the reaction started an hour after the main chemo was given.

Amaey is knocked out from Benadryl right now and as soon as they have a room we will move in.

Coasting

On Monday Amaey was supposed to get his outpatient chemo but his counts were low so we came home. He is Neutropenic at the moment we will go back on Thursday.

Thursday was pretty much the same, his counts went up just a little so they could not give him his chemo. However, his hemoglobin did go up from 8 to 9.3 and I want to give the food all the credit. The cookbook has special food for anemia and we cooked most of it and Amaey religiously ate all of it.

Now we get the entire long weekend off and then go in on Tuesday.

Home

We got to go home late last night and that was quite a surprise. The last two Methotrexate stays, Amaey has made it home in 3 days and that is really great. This time around the hospital stay was relatively painless.

I picked up a book at the hospital called The Memory Keeper's Daughter. it was an amazing read. I could not keep it down. I finished it by the time Amaey was back home. I highly recommend it but bear in mind it is an emotional book.

Amaey did like his healing tea. I don't know if there is a relation but since we have started making this special food for Amaey he has been able to release the chemo from his body much faster. I think all this food interacts with the body and helps dilute the chemo faster. This only works with the Methotrexate stays unfortunately I have not found a magic solution for his painful ARC stay.

I cannot believe it... we only have 3 more hospital stays and then Amaey's intensification phase is done.

Food

A friend of mine gave me this amazing book called, The Cancer Fighting Kitchen by Rebecca Katz. For the first month the book just sat in the kitchen. I did not want to open it or indulge in it. Then on a whim I leafed through it and was surprised at the amount of information that was in the book.

The book talks about foods for 2 days before chemo, week of chemo, in between chemo. When one has mouth sores, nausea, upset stomach and such side effects of chemo. It also talks about foods for neutropenia, anemia, and such.

Preparing for Amaey's hospital stay I decided to make the Magic broth. When Amaey was in the hospital few weeks ago I took it for him with no expectation that he will ask for it. To my surprise he drank it up and asked for more the second day. Apurva and I were so surprised. This boy never eats anything when he is on chemo. He is constantly hydrated and the smell of the food in the hospital grosses him out so put those two together and he has no real appetite.

Now that the Magic Broth worked I started reading the book closely. When Amaey was at home during the winter break I made a Chocolate Banana smoothie, Mango Coconut Smoothie and Triple Berry Smoothie. He had them all with great taste. The Chocolate Banana Smoothie has almond butter in it and he did not complain... wow heaven.

Next I went to the soups and made spicy sweet potato soup, carrot, fennel and orange soup, and watercress orange soup. He slurped them up. You have no idea what this means. Apurva just called from the hospital to tell me that Amaey ate up all the carrot fennel orange soup and would like some more for tomorrow. I'm really ecstatic.

For tomorrow I have made him a Healing tea. It has cinnamon, cardamon, coriander, and ginger in it. When he is ready to drink it I will mix in almond milk, maple syrup and a hint of vanilla essence. Not sure if he will like it... I'm really curious.

Happy New Year!

Wishing everyone a Heathy and Happy New Year.

We have not started the year with any profound resolutions. We did not even talk about what we wish for. All we want is to take each day as it comes and we will give it our best.

We are in the hospital for Amaey's Methotrexate stay. We are in El Camino and we will be here until Thursday. Amaey is in really good spirits and that is wonderful to see.

We had a good restful and much needed break.

Going home

Amaey did not have a fever since the one in ER on Saturday and his WBC looks good so we are going home. Yeah!

Back in

When I took Amaey for his CBC on Thursday we found out that he was neutropenic. So we started taking all the precautions. I did let him go to his science and piano class just because they had 3 to 4 kids max in the class. Also, these are 2 things Amaey literally looks forward to. It's almost like taking food away from him if he cannot attend them.

Now I wish I hadn't taken him anywhere because I had to bring him into ER this afternoon because he had a fever.

They moved us from ER back to 1 North and in our old room. Amaey is back on broad spectrum antibiotics. The good thing is that his WBC is up from 100 to 500. If his cultures are negative and if his fever doesn't spike high we will go home before christmas otherwise we will be celebrating the holidays in here. Oh Joy!

The hospital white board

We always draw on the whiteboard... This time the little animals won our heart.

Surprise

What a surprise, we got to go home on Sunday night. I did see a beautiful rainbow on my way home from the hospital... sound silly but I believe in it.

Saturday night

Amaey was homesick in the afternoon (2.5 out of 5 days are down). He was glump and did not feel like doing anything. He had to finish up his homework, maybe that made him feel more bored.

So I took his homework away and brought a sand art project for him to do. He was not cooperating at first. He found it boring and it did not really look that cool. When I peeled the first layer of paper off and asked Amaey to pour all the sand and spread it and mess it up he sat upright. Now we were talking.

The first layer was dark blue and it was half of the design so it really looked very impressive. He was so happy to see the design transform in front of his eyes that he wanted more. Little by little we peeled each an every layers off and when he filled in the white clouds last he was beaming (he picked his own colors).

He wanted to go out and show it to the nurses. So we took his pole and I dressed up in my gown and shoe coverings (we are in the stem cell unit so anytime an adult steps out of the room they need to wear the protective garb) and walked to the nurse station. H was so happy showing his design off and then he started floor skating in his socks. He danced up and down the long corridor but the tubing wouldn't let him go to far. So finally he got tired and we went back in the room.

They have free on demand movies for families and we picked Fly me to the moon. We had dinner and watched the movie. (we always do dinner and movie on Saturdays at home so we had to follow the tradition. Around 10:30 the nurse came to unhook him from the ivy just for couple of hours. Oh Boy! you should have seen Amaey, I'm FREE!!! He jumped out of his bed and ran outside the room. Now there was no stopping the dance monster. All the other nurses had heard about his performance earlier so they all gathered up and Amaey gave quite a performance. Then we walked outside the stem cell area and danced all the corridors and finally settled near the family lounge and played with a contraption. I do not know what it is called but it was cool. We played for a long time and finally went back to our room since Amaey was tired.

He was so happy when he was falling asleep. The party animal is still sleeping.

Arjun paid a visit

On Friday night we did our usual parental/child swap.

Apurva brought Arjun over and since Amaey was not in isolation anymore he got to go out to the entrance and see his brother. They were so cute.

Amaey has been asking for Arjun for many days now, however now that Arjun was there all he wanted was to get away from his hugs.

I know when I drove home with Arjun he was truly happy to have seen Amaey. On Saturday morning when I went to do the swap again Arjun was in the car with me and he said, ma when Amaey goes to the hospital I like it for a few days because I get to be by myself but when he has to stay for so many days I start missing him. I loved that honesty. I truly envied his honesty.

5 more days

Yup the verdict is 5 more days or a rise in his levels.

We are bummed, feeling claustrophobic at the moment in this room. I get to go home and take a break and come back again, Amaey doesn't. I can totally understand how he feels. All he keeps saying is he wants Arjun.

This morning he was picking a fight with me and I said Amaey I think the two of us need a break from each other and he said yes I need Arjun to fight with. I thought that was so cute. He loves his brother but if someone asks him about his brother all he says is, he is always mean to me and fights with me... while Amaey instigates most of that.

Now all we can hope is that his WBC goes up and we can go home.

Friday

Yesterday Amaey's CBC came back and he was neutropenic so they started his antibiotics right away. Now I have no idea what the plan is and how long we will be in the hospital.

The good news is, he had no fever since 7:30pm yesterday.

I know Amaey wanted to celebrate Hanukah with his Gabbu. Not sure if we will be home for that. It will be great if we can go home tonight. It is nice to be home with the family on the weekend. It helps to unwind and then get ready for the week.

Borderline neutropenic ughhhh

Today has been a really busy day for us.

As per protocol he was supposed to be discharged after getting his last chemo at noon so after watching him for couple of hours we would have gone home.

But they really want to watch him overnight. Give him his last pre-meds cocktail at 6pm, see how his body would react once he has no medicines inside him and if a fever does not spike, get a chest x-ray, start his blood transfusion and then discharge us.

Once Amaey heard the doctor say that he will have to stay tonight he completely broke down. He cried so much that I suddenly realized that we have had it really easy up until now. If it weren't for his attitude, his smile, his will to keep going we would have gone insane by now. If Amaey had taken his treatment the way he has over the past three days we would have been completely unbearable people to be around. If we are calm and composed it is all because of Amaey. If we can breath and not be at each others throats it is because of Amaey.

This hospital stay has driven him off the wall. It was too soon. He was in the hospital just last week and now he was supposed to be here for 3 days but it might be longer. He just spiked a fever again and we were hoping he wouldn't. If his ANC is 500 or below then he is officially neutropenic which means they will start him on antibiotics which means we are here for 3 more days ugghhh.

I don't know how I will handle him. Usually I can but this time around with the steroids and benadryl creating havoc in his brain I can't reason with him, I can't entertain him, I can't even entice him to watch Bobby Flay on Food Network. I wish they allowed kids to visit him. Seeing Arjun would really help him at this point.

One thing at a time. I'm going to pray hard that he does not spike another fever tonight and he is not neutropenic... then we will get to go home. IF not at least the meds will have worn out of his system and he will smile and see the brighter side of life.

Turtle collection

Amaey's turtle collection is growing steadily.

He bought this green tortoise in Las Vegas and named it Tortellini how cool a name is that for a green tortoise.

One of the play room people had stopped by the room and saw his Tortellini and rewarded Amaey for the ingenious name with yet another tortoise... He named it Ferrari yesterday because he was watching F1 racing with Apurva but today he renamed it Spotty.

Apurva is not too happy about that. I have a feeling the two will go head-to-head about this re-naming once Amaey goes home.

Thursday

Amaey managed to pull it through last night. He had fever and tylenol helped but the fever came right back and kept increasing. However he managed to get the chemo done Yeah!

He is still slow and his ANC is 560 and Hemoglobin is going down so they definitely want to keep him tonight and watch him. Both Apurva and I are more comfortable with that plan.

At noon he will get his Peg, which are two simultaneous shots on the thigh, and after 2pm he will get a transfusion.

After that it is wait and watch.

Amaey really wants to go home so we are not telling him that he has to stay one more night.

In the hospital

On Friday we went in for blood test. Amaey's platelets were low but were on the rise from earlier in the week so they asked us to come in on Monday for another set of CBC and chemistry and possible pre-medication for admission on Tuesday. So on Monday we went to the clinic for Amaey's bloodwork. Everything looked good. His ANC was up at 1400. Based on that they decided to move forward with his chemo on Tuesday. This time around the plan is to pre-medicate him with a cocktail of drugs. We started the pre-medication on Monday at noon.

On Tuesday they called us at 11 to inform us that they have a bed and we should check-in (sounds like a hotel huh). We got there around 12:45pm. Amaey wanted me to make his lunch and dinner so it took me a little while to get packed and ready to go.

Once we got to the hospital and checked us in they told us that they will not start his chemo until 6pm i.e. after 1 more dose of pre-medication. So Amaey and I went to the playroom and had some fun until 4pm. We came down to the room and around 4:30 Mrs G came over. Amaey was really happy to see her. He was a little looney at this point because of all the benadryl he had taken.

He wanted me to pick-up dinner from CPK so I left the tutor and pupil and went to the Stanford mall to pick-up his mac and cheese.

After his tutoring we had dinner and watched several episodes of chopped and you think you can dance and called it a night.

Around 8am on Wednesday he spiked a fever of 102. This time around they were more prepared. The nurse took his blood culture right away and gave him tylenol. When I left the hospital at 11am his fever was subsiding and he was happily playing on Apurva's computer.

Throughout the day I have been checking in and his fever seems to subside with tylenol and comes right back in 4 hours. So far it is all under control. Our hope is that it stays this way. From his last blood test this morning it was determined that his ANC is low but not neutropenic and his hemoglobin is coming down so I have a feeling that they will transfuse him tonight or first thing tomorrow morning.

I sincerely hope the night goes well and without any major changes.

All negative

All the tests that they did on Amaey to figure out why he spiked a fever came negative. So he did not have a viral or bacterial infection.

After consulting with all of doctors in their team they found out that one of the doctors had a similar case many years ago where the child spiked a high fever after getting this chemo and had a low blood pressure as well.

So they are going to tread with caution and give Amaey pre-meds before administering this chemo. They think Amaey has an allergy to the meds.

We are relieved in a way to know that it wasn't any infection. Because we have been very careful with washing hands having people over letting Amaey go anywhere. We just couldn't figure out where he would have caught the infection. Then we thought we should have Arjun stop swimming maybe Arjun is bringing the germs.

It finally hit me

Last week I could not shake off my anger, resentment and feeling of hopelessness. I rarely feel this way. If I do I can make myself get over it. But I couldn't. Also being in the hospital one parent at a time and being available for one child at a time meant Apurva and I never had a chance to talk.

Getting mad at Apurva, fumingly mad. Being upset the entire week. I realized that it had nothing to do with Apurva... I realized that I was finally mad at the relapse. After 8 months of being back in the treatment it finally weighed me down. The long hospital stays, balancing Arjun and life and work, the roller coaster of emotions, the constantly watching out and looking for signs in Amaey's health, all of this finally hit me hard.

Cancer sucks. This relapse sucks. Watching Amaey go through all of this again sucks. What am I going to do about it? Whatever it takes. keep doing what we have been doing because as a family we are a good team and we will keep at it and once in a while we will complain and scream and vent and be thankful for whatever we can.

Home Free

The doctors just came in and told us that Amaey's counts are a little low and his platelets are borderline so they are worried that if they start him on chemo again his body might not be ready for it.

So... they are letting us go home. They feel that too much time has passed between the two doses so they would rather make this round a wash and then have us come back after Amaey's body has recovered fully and start this round again.

All the tests and cultures they have done over the 6 days came back negative so they think that the fever was due to the chemo however they are still perplexed about the low blood pressure.

So we are waiting for them to do all the paperwork and de-access Amaey. We will pack up and go home- for now. It's good time because just early today Amaey had a melt down. He felt frustrated and wanted out. I guess they heard him loud and clear.

Free for a day

Look who is sitting unattached...

Amaey got to be completely free of ivy and monitors. He had no fever the entire day so that doctors wanted to just watch him before starting his chemo again.

Arjun and I bought a few lego gifts and Amaey already built his power

miners truck.

Tomorrow they will give him his 2 remaining doses of Cyterabine and on Sunday he will get his Peg and if he does not get a fever we will get to go home on Sunday.

So mad

I have been brewing anger for a few days and in the hospital today I thought I would explode.

When the doctors told us about Amaey's hospital stay over thanksgiving I had a natural outburst, I did not want us to be in the hospital over this long weekend. i just didn't. Also, I had tickets to Florida for my niece's engagement.

The doctor and Apurva both insisted that we should stick to protocol and if Amaey is doing well we should administer his chemo which was only 2.5 days in the hospital so technically he would be home by Wednesday and I could still fly on Thursday.

I'm mad at Apurva and the doctor for ruining a perfectly calm weekend. Amaey was so looking forward to cooking and celebrating and it would have been a nice catch-up time for the boys.

I was so looking forward to be attending my niece's engagement. I will be honest, I was looking forward to a break. Sleeping in the plane, alone. Just disconnecting and recharging.

I can understand that protocol is important but I wish I was more adamant. I'm so mad at myself too. I wish I had put my foot down a little harder and made a bigger stink. I think if Amaey had had this 1 week off he would have had a chance to relax. He was so upset about being admitted too. On Monday he kept hoping his counts were low so that they would not admit him. After they gave us the green light to get admitted I still had my doubts, he looked slow- that's OK, he has a runny nose- that's Ok. Are you sure he looks Ok for this chemo that really knocks him down?

One part of me wants to understand where Apurva and the doctor were coming from. Let's stay on target. Let's make sure we don't mess the treatment up. Let's not cut any corners and lets dot all the i's and cross all the t's. But on the other hand... I wonder if we could have avoided this stress and pain.

Amaey asked me why I was letting him go through chemo when I believed so much in natural treatments. I had to look straight in his eyes and tell him that I don't have a magic pill. All the natural stuff that I'm doing is just to help him feel better but I do not really have a solution up my sleeve, chemo is the only alternative to what he has.

I felt really sad that I couldn't give him any false hopes.

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!

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.

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. 

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.

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.

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.

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. 

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.

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.

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. 

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.