Wednesday, October 13, 2010

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.

Monday, July 26, 2010

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.

Sunday, June 20, 2010

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.

Sunday, June 13, 2010

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!

Thursday, April 29, 2010


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.

Tuesday, April 20, 2010


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.

Wednesday, April 07, 2010

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.

Monday, April 05, 2010


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.

Friday, April 02, 2010


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.

Thursday, April 01, 2010

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.

Wednesday, March 31, 2010


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.

Tuesday, March 23, 2010


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.

Friday, March 19, 2010

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.

Thursday, March 18, 2010

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.

Saturday, March 13, 2010

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.

Friday, March 12, 2010

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.

Tuesday, March 09, 2010

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.

Monday, March 08, 2010

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.

Saturday, March 06, 2010

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.

Monday, March 01, 2010


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.

Wednesday, February 24, 2010

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.

Tuesday, February 23, 2010

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.

Monday, February 22, 2010

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.

Friday, February 12, 2010

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.

Tuesday, February 09, 2010


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.

Monday, February 08, 2010

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.

Thursday, February 04, 2010


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.

Wednesday, February 03, 2010

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.

Monday, February 01, 2010

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.

Friday, January 29, 2010

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.

Wednesday, January 27, 2010

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.

Friday, January 22, 2010

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.

Thursday, January 21, 2010


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
- 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.

Tuesday, January 19, 2010

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.

Wednesday, January 13, 2010


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.

Thursday, January 07, 2010


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.

Tuesday, January 05, 2010


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.

Monday, January 04, 2010

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.