I'm so MAD

I'm so mad... finally I'm MAD. Not something we bargained for when we got into this. When I read the blue bar of this blog that says that what Amaey initially had was the best kind of cancer I could have shopped for... it seems like a sick joke. Feel somebody has been incompetent... is it the doctors, the protocol makers, the drugs, or god himself.

I just had a consult with one of Amaey's docs and we were going over the next phase of possible treatments based on what comes out from his day 22 results. When he mentioned giving Amaey Etoposide again, I really flipped. I think my calm left the doorway and the mad mom came in me. Wasn't this drug the cause of his secondary relapse? So how come you are willing to give it to him again? There is no plan B?

I'm told that they are not worried because their goal is to completely wipe out his marrow with chemo, radiation, and more chemo so when he gets a stem cell transplant there should be no problem. BUT he is in the 3% people to get this kind of relapse. This is RARE. And I have heard that a person can relapse even after a transplant so how can you tell me with a straight face that that won't happen to Amaey. This drug might be fine for some patients but it is clearly not for Amaey so why are you blindly following the protocol and not looking for an alternative?

All of this sucks... I hate not being in control of all these decisions. I hate feeling so helpless.  We don't understand the meds that well so we have to follow the trials and the paths they have tried but what happens when the paths they have taken have not always proved to be successful?

At home

This week on Monday Amaey needed a blood transfusion, on Wednesday we had a nice surprise and he came home right after his labs, he did not need any transfusions. His WBC went up from .1 to .2 also. And today, Friday, he needed a platelet transfusion so he hung on to his hemoglobin which is wonderful. His WBC is up to .6 today.

For us the fact that he comes home is more important then anything else. Because every time one of us takes him we know in our mind that we might have to stay back.

Curcumin

As we embark on a more holistic approach to Amaey's relapse we are learning about many supplements. One that stands out most is called Curcumin, it is derived from Turmeric.

There is some fascinating research done on this-
http://nccam.nih.gov/health/turmeric/ataglance.htm#cautions

http://www.wtsp.com/news/local/story.aspx?storyid=117578

http://www.healthyindiandiet.com/dr-aggarwal.html

http://www.curcumin.co.nz/introduction-to-curcumin.htm

Friends

Apurva and I are overwhelmed with the way our friends have taken over the entire marrow drive. We had no idea about the drive until yesterday and it already has so much momentum. With friends like ours, we have to succeed. We have to get through this.

We know that our families are trying several drives in So. Cal, NJ, and London too. Amaey is truly blessed.

Thank you everyone for your support.

Status

We have to take Amaey to the hospital on M-W-F so that they can check his levels and labs. I took him on Wednesday and they needed to do a platelet transfusion and today Apurva took him in. He needed a blood transfusion but otherwise his numbers are stable, they are low but stable and that is good.

We had a nutritionist stop by and she cooked some very healthy meals for us. She is trained under Rebecca Katz and I really like her book Cancer fighting Kitchen.

My parents are visiting just for fun but seems to be here at the most crucial time for us. However they will be leaving on the 19th. We haven't really sat down and charted out a plan for summer yet. We were planning to travel this summer so we did not sign Arjun for any camps. Apurva and I have decided to keep it that way, we think it will be great for us to spend time together even if we are in the hospital sibling is allowed so that should work out.

Apurva has taken time off work right now and just goes in when he can. My teaching semester ends in 2 weeks so I will be completely free too.

Amaey is making me an avid Star Wars 3 player on the PS3. Whenever he wants to get more studs he asks me to play... he is really proud of me, he told Arjun that I haven't died in the game and in fact I win lots of studs. Brownie points for mom!

Thank You

We want to thank all our family and friends for their love and positive wishes. We know that there are so many of them thinking and praying for Amaey. We know that everyone is sending healthy wishes our way.

Thank you for stopping by, calling, emailing. Thank you for reaching out. Thank you for being there. We can't do this without all of you.

I remember telling my sister that I have lost my faith after this. But with each passing day I realize that I can't loose my faith, faith is all I have to hang on to. My faith in myself, my family, my friends, is all I have. I truly believe that there is a higher power somewhere, I don't know what games get played and why some people have to suffer so much but I do hope that with the challenges that are thrown our way we will also be shown paths to overcome them.

When we had our first meeting with the transplant team I was left feeling like I was in a Harry Potter like maze game, whichever path we would choose would have more difficulties at the end of the bend. However, I had a silly sense of calm, a naive hope that we will get through it... how? I have no idea.

Home

We got to come home last night.
Amaey's counts are still low and he will need transfusions soon but he does not have a fever so they wanted him to be home rather than in the hospital and catch something there.

We were more then happy to leave. We were told to sit tight for a month so this came as a huge surprise. Today has been wonderful. Just so nice to see Amaey happy in his own house. Sitting and reading on the sofa, spending hours on the kitchen table with his comics and nursing his food. Playing his piano, watching TV, chatting with everyone on the phone, fighting with his brother over everything, doing normal things that one wouldn't think too much about but we know that they are very precious.

Tomorrow he has to go to the clinic for labs and check-up. They want to see him 3 times in the week.

My brother was talking with Amaey over the phone and after his conversation he said we all have to learn something from him, he sounds like nothing has happened, he is so content and happy, in his place we would have curled up in bed and wallowed in our misery. Being a child is so very precious they have a narrow vision of their world nothing else really matters. It is truly beautiful.

When I went to pick-up Arjun from school his first question was, where is Amaey? When I said that he was at home I could see the big smile on his face that was so pure that for a second I felt that everything will be alright.

Resources

We know that everyone is worried about the transplant process and about the relapse. Here are a few links that have more info if anyone is curious-

AML
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Leukaemiaacutemyeloid/AML.aspx

Bone Marrow
http://www.bmtinfonet.org/

Happy Mothers Day

Amaey had a good couple days.

He seems to be himself, accepting, listening, questioning, and contributing.
Tomorrow we meet with the transplant team and get the lay of what is ahead. This is first of many meetings we will have. Tomorrows meeting is focused on the search for donors and how we go about it.

Tonight is day 5 of his chemo. This is the last dose for his 1st induction phase. Now they watch out for side effects like mouth ulcers and watch his kidney and liver function very closely.

If he is stable they might let him go home for a few days. They are always worried about kids staying here too long and then catching something here. If they do let us go it will be on very strict terms of isolation within the house and coming in to clinic every other day. We don't know when or if this will really happen.

Amaey got to chat with one of his buddy's over skype and his other friend briefly stopped by. He was so happy for that. The pain and trauma from the initial news seems to have worn off him and he seems happier.

My sister-in-law left today. She was great moral support for us. Just knowing that she was looking over his protocol and being a sounding board was enough.

Arjun has been coming and spending time too. They built legos and played PS3 games in the room. One of their cousins dropped off their PS3 at the hospital and that has been a life save for Amaey.

Day 3

Amaey was randomized to Clofarabine and Cytarabine and they started his chemo on Tuesday night. He will get these 2 drugs once a day for 5 days and the chemo will last 2hrs each. They started the 1st chemo at 11:30pm and the 2nd at 1:30am. As soon as the chemo started going in I could see that he was restless. He was sleeping and suddenly woke up feeling sweaty. Tried to fall asleep and then started complaining of neck pain which became a shooting back pain added chest pain to that. We asked for tylenol for the pain. I rubbed his back, did some breathing technique and just sat there with him. He suddenly wanted to walk, and then he would sit on the bed and stare. We played with his plasma ball and listened to his musical snow globe and red Ripley's believe it or not at 2:30am.
They finally brought tylenol in and after trying different angles of the bed he finally fell asleep more because he was exhausted.

Next morning however he woke up with a bright smile and ate up the wonderful pecan pancakes with sausages that Apurva and Swati brought from home. Apurva had also bought a new wireless card so that Amaey can play multiplayer games without the hospital's firewall. This made Amaey so happy and connected.

I left to go home and around 2pm they did a procedure on him to place a pic line in his hand and I heard from Apurva that it was a little painful because something was obstructing the tube. They had to have radiology involved and finally they got the line in. They need two access points in his body because his port is used for round the clock hydration while the other line will be used for transfusions and secondary aid. Apurva said the night was relatively easy and they both slept, which is wonderful.

This morning however when I came to the hospital Amaey was very grumpy. The chemo had knocked down all his counts and his hemoglobin was nil and his arm with the pic line was hurting bad on top of that his lego universe game wasn't working.... he was just having a bad bad morning. He cried a lot because he was feeling frustrated and all he wanted to do was go home. He was entangled in lots of wires and probes, nurses kept going in and out, Swati came in from home and after 2 minutes Raj stopped by and Amaey got really mad that everyone was coming in at the same time. He was feeling very overwhelmed. So everyone left the room and stayed outside in the lounge area.

We let the nurse come in after 10 minutes since she had to start his blood transfusion and we made the room dark and comfortable and he finally fell asleep. It took 3 hrs for him to settle down. But when he woke up he had a smile and he asked for food.

It is amazing how much his mood and well being affects us. When he is feeling so low we feel sad that we can't really do anything to help. He is growing up too. When he was little we could distract him with tv, or singing, or some crazy antics but now it is not so easy. It really has to come from him otherwise the change does not take place. Tonight is day 3 of the 5 days of chemo... 

New day New plan

Amaey starts his new chemo treatment today. They have sent his bone marrow and blood samples to St. Jude and once they do a randomization test on him we will have a final protocol to follow.

Whatever is picked, he will be on those very aggressive drugs for 7 days. They have already started pre-medicating him and will continue for 18 hrs straight.

After the 7 days chemo they wait until day 22 and do another bone marrow to check on the blasts.

Based on the results they will either have to give more chemo or if they have a donor he will go for a transplant.

Some hard news

Amaey has relapsed yet again. They call this a chemo induced relapse. His original diagnosis was for ALL but now his relapse is for AML.

The journey ahead is going to be a really hard one. He will have to undergo a marrow transplant too.

He is doing fine and that is a good sign. We are doing fine for the moment too. Arjun is really upset and we have asked the hospital counselor to be involved with him.

There will be lot more hospital stays with this treatment upto 30 days at a stretch sometimes so he will have to stop his school and activities again. We have decided to involve Arjun lot more because he is the only kid that will be allowed in his room at the hospital. 

They consider this a 9 mth to 1 yr long treatment. We don't have more details yet. 

Today they did an EKG  and tomorrow he has to undergo another bone marrow procedure and a cardiogram to check all his baseline levels before starting treatment again.

I just wish there was a hole we could hide in. Take him away somewhere so that none of this really matters. What if we don't go ahead with this treatment? What if we just act like this never happened? 

Amaey has so much to offer to the world, a young scientist, an inventor, a chef... these are his dreams and aspirations. We pray and hope that he can fulfill them someday. We pray that he will come out of this ready to take on the world.

A strange week

Amaey has been a little slow for the past 3 weeks. He has had a cough and cold and he has been a bit tired. None of this stopped him from going to school karate, sleepovers. However, he would need a nap everyday and that was odd. Usually he naps only if he is really wiped out.

They stopped his oral chemo and meds because his platelets were on the low side. We did a chest x-ray to make sure he did not have any lung infection, luckily it was all clear. He had his 5 day challenge and it knocked him down completely. We had not seen him so out of it in a long time. He was miserable, restless, and blah all over. He could not go to school during those days either.

5 day challenge was done with and on Monday we went in for his regular cbc. Usually a nurse calls and gives us his lab results but today I get a call from his doctor and that does not feel good. Amaey's platelets were still low and all the other numbers were petering down too. His doctor told me that he would like to check his bone marrow to rule out a relapse. Since there was no space in the unit the procedure was scheduled for Friday but I insisted and trying to do it sooner if possible. Usually the platelets and the marrow are connected. Apurva and I were very anxious by the news. My parents are with me but I could not tell them anything, did not want them to worry and we did not want the boys to overhear. We definitely did not want Arjun to know. We know he would be worried.

Tuesday night Amaey had a nose bleed and when he went to school the next day his teacher called me and to say that he had another nose bleed, I knew something was wrong. I called the clinic right away and they called me back in a few minutes and asked us to come in for a platelet transfusion.

I was cringing at the thought of being in that hospital room for 3hrs. They did another cbc and this time all his counts were really low.Not feeling good at all at the sight of those numbers. They decide to draw more blood from him to do a chemistry. We were at the hospital from 1:30 and at 6pm his doctor stopped by to talk with me. They had managed to do his procedure on Thursday at 1:45pm. His doctor looked worried but when he looked at the chemistry and the cbc results again he told me that there was a soft hope that all was fine. His Red blood was high and his uric acid had come back normal. He said those were good signs but he really wanted to see his marrow. He also wanted to do a lumbar puncture and look at his spinal fluid incase there was something in there.

Amaey has to fast for these procedures and it is amazing how he does not complain at all. Apurva and I both went for the procedure. We waited in the waiting room while they did his procedure and later took him to the recovery room. It felt like a long wait because we were talking about all the possibilities that lay ahead of us. When they finally called us in the recovery room, Amaey was still sleeping from the anesthesia. His doctor had told us that he will give us preliminary results in an hour after the procedure so when they called us at 5pm we were really panicking. As soon as the doctor walked in the room he has it's all good... it's all good... we were in a shock... we hugged him, which we never do. we were all so relived. When we talked more the doctor told us that he was really worried and had already started looking at relapse protocols. However, he has sent the marrow for few more tests to get a definitive study back but when he looked at the marrow it looked good and he saw some new cells which was positive.

So Friday, we are all happy and getting packed for a very special weekend away. We were invited to go to Skywalker Ranch as a thank you for few families of the Cars 2 team. Until yesterday we had not even thought about this weekend because we had no idea what life had in store for us. We were so glad to be able to go away and celebrate. We had an amazing dinner there and were put up in a wonderfully appointed 2 bedroom villa at the inn. Amaey seemed slow, and had started coughing a lot. After dinner he was very tired so he went back to the room and we stayed behind and mingled with everyone while Arjun was busy with some kids too. Next morning we all enjoyed a lazy start and a wonderful breakfast with all the families. Everyone was meeting back at 11am to go on a hike around the property so we went back to the room to get ready. Amaey looked really slow now so Apurva took his temperature and it was 101.5.  Not good. Usually anything above 101 means emergency. We decided to wait an hour so that things could settle. I took his temp again and it was 102.5. I called the hospital and they asked us to come as soon as we could.

We are in the hospital now and will be here for a few days. Amaey is neutropenic and still coughing a lot. His fever is under control but they need to wait for the cultures to come back and for his numbers to go back up. They have started him on ivy antibiotics too. I'm staying tonight and then Apurva will come tomorrow.

The day away to Skywalker Ranch was magical. We felt like we were gone away for a long time, in a different world where time stops and the world moves slowly. We are so glad that we all got a day of pure relaxation, now at the hospital I'm not as stressed as I would have usually been. Hopefully all will be fine and we will be home in a few days.

Relationships

Amaey was diagnosed in November of 2005, this is 2011. Time does fly, we are in the 6th year of his treatment.
I have seen so many families at the hospital over these years. Some families come in with both sets of parents, grandparents, all kids. Some families come as a single unit. Some come in as a happy family and by the time they are in the thick of it all they have no family left.

Apurva and I have done relatively ok over all these years. After each major setback that Amaey has faced we have reevaluated our relationship and felt happy that we are still stable. It has been really hard but we have managed to keep our ship afloat but the costs have been high.

I was talking with a mom in the hospital whose child relapsed while they were on holiday in the US from India. They could not go back, they had to start from scratch over here. I see her at the hospital all the time and I asked her, do you resent your husband? I said, do you ever feel that your husband just continued his work, luckily he could get a transfer from his work and his life stayed quite stable while you are here in this foreign land adjusting to a whole new reality?
She said, I'm really surprised that you ask this question so honestly, I was resentful when my son was initially diagnosed, felt like nothing changed in my husbands life. He could wake up every morning and leave the house.
I said, it is normal to feel that way, I feel that many times.  However, there is a choice we made as a family for 1 to be a caregiver and the other to earn a living and continue to maintain the insurance and stability.

I have thought about this conversation over and over in my head. I wonder what the main caregiver and the secondary caregiver think about? I wonder what experiences each goes through. I wonder how these experiences shape them as a person. I wonder if their roads meet every now and then or do they trudge along a parallel path over time without really knowing that. Two people with one story that binds them but two completely different goals in life...

3 weeks of hell

3 weeks ago we found out that a stray blast was found in Amaey's spinal tap. It could mean nothing, a fluke, completely random occurrence, OR it could mean a relapse. We had to wait 3 weeks to repeat the test.


The first week went in denial. We did not want to talk about it. We did not want to even entertain the if.
Second week however was hard, Amaey's counts were low, he was neutropenic and the panic set in. He was home the entire week because of his low counts. Seeing him home was a constant reminder of things gone wrong. My stress level went up and I pulled a muscle at the gym and was in bed for 2 days. I understand depression. I understand what people that are depressed feel and go through. I can see how hard it can be to get out of bed, to move and find a reason to wake up and do something with your life. It is a spiral effect, you can just get sucked deeper and deeper into it if you do not have a really strong will power. A strong family and a strong network of friends. Apurva and I decided to go away for the weekend to Sonoma and we came back recharged to take whatever might come our way.
The calm of the weekend lasted for a few days until Friday when Amaey started looking tired. We spent the entire weekend just staring at his face, obsessing about his skin color, the color under his eyes, his energy level, how much food he had eaten or not eaten. By Sunday we felt that something was up...


Today, Monday,  he went in for his spinal tap and we just got the preliminary results, and they were negative. The CSF cell counts for Amaey were normal, with <1 WBC and <1 RBC per high-powered microscope field (normal is between 0-5). 


He is fine. The stray blast was just stray and that is all. This just shows how vulnerable our life is. Any negative test can drive us up the wall. A tiny stray blast has the power to stop us on our tracks. This was so stressful. I hope no one has to go through this in their life.

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.