May 30

Today is a better day. It looks bright and sunny outside, I will wake Amaey up so that he can have his breakfast and then make the most of the sun. We will go by the fountain and do a project and wait for Apurva and Arjun.


Apurva and Arjun brought a wonderful lunch and we sat outside by the fountain and ate beans on toast, salad, chips. Now Amaey is tired so he is reading in his bed. Arjun is doing his homework with Apurva and then we will change guards, Apurva will stay and I will leave to go home with Arjun.


In the evening, Arjun and I walked down to Davina's  house. I am trying to take a walk with Arjun after I come home from the hospital. I have all these expectations that we will talk, and he will tell me what is going on in his life and I will feel like I can catch-up with him but I now understand that he is growing up. He likes to talk at his pace and in his own way. Just because I'm home and now I'm focusing on him does not really mean he looks at it that way too. I was so frustrated after our last walk and I got really upset at him for not wanting to talk. Yesterday I decided to not ask him anything, instead I just started doing my fast paced walk and challenged him to keep up with me. He was playing on his iTouch so he kept slowing down and I kept getting ahead of him, and then he would run and catch-up. We did that all the way back to the house and when we got home he said he had a good time. 


I felt so good. I guess, for him going for a walk does not mean he has the need to talk. All he wants to do or is looking forward to is to be with me. Maybe that is enough. I should learn to take his cue and be happy with that. 

All I need is a friend

Amaey has been really down. His mood swings from getting comfortable to not trying to get too comfortable to just get me out of here. Especially when the weekend is around and if it is long weekend then it is even harder.

Apurva thought that it might be ok for Amaey to see his buddies for a short visit. Lots of doctors and nurses keep coming in the room, the food people, the cleaning crew, playroom staff, library volunteer... all these people come in and out so since he is not in isolation maybe he can see his friends.
Christopher stopped by on Saturday. They were so cute together. Amaey showed him the bed, the fancy bed that can go quite high up, the headrest and legs can change to different angles too. Amaey bought a new game on his iTouch so they played with that. It was beautiful outside so Apurva took the boys by the fountain and that was really the icing on the cake.

On Sunday Gabriel stopped by, Amaey had just woken up from his nap and he was a bit slow but seeing his friend brought a big smile on his face. The two of them played with different things, tried to build an erector set, kaboodle puzzles, iTouch, and chatted the whole time. It was really cute to hear them talk. At home when they have a playdate these kids talk like old men... yaketying away non-stop and it is really cute to just listen to that chatter.

Last night before he went to sleep, Amaey told me what he planned to do the next morning after he woke up. Wow, that has not happened in a while. I was so happy to see that he was looking forward to the next day. We think these little moments of friendship are really important for Amaey. That is his connection to his real world. These little faces and voices are his world, he belongs there and if he his not in isolation and his friends are not sick I'm sure we will arrange some playtime for him whenever possible.

Prayers

I was making tea in the hospital kitchen and said hello to a dad who was warming up something in the microwave. We exchanged greetings and he told me that they have been in here for 4.5months at a stretch. My heart just sank. Their 17 year old son was diagnosed with AML but they can't find a donor match because his wife is asian. His wife has not left the hospital at all.

Being a parent is a challenge but putting parents up to this kind of a test is not fair. Science is amazing that we can do something called a bone marrow transplant. Can you imagine what it must have been before BMT? We are all at the mercy of these good samaritan donors, if it weren't for them... I can't really imagine the situation.

I just pray that some new scientific advances are made. Sometimes science can cause miracles and that is what we all need at times like these... miracles.

Meet Dauno and Ida

Day 22 was fine. They did a bone marrow aspirate, an LP and a bone marrow biopsy on Amaey because his counts were really low and they were worried that they would not get good marrow just from the aspirate.
He recovered fine and luckily did not get a  fever after the procedures.
Amaey is in partial remission so they started his 2nd induction on Friday as planned. For this round, he will get 3 days of oral meds and 8 days of chemo. His count will be wiped out so he won't be able to go home until he recovers.

Friday was the craziest day in the hospital, as I was giving Amaey a shower Dr. Dahl stopped by and told me that there was a slight kink, the drug Daunorubicin that Amaey was supposed to start getting was unavailable. I was like, what do you mean unavailable? What does that mean? How is that possible? He said there was nothing to worry about, they are thinking about giving him an alternative drug Idarubicin. As soon as Amaey was dressed, I started researching for these two drugs to find out if Ida was as good as Dauno. I called my sister-in-law right away, called Davina to look into these two drugs. I saw that he would be more immunosuppressed with this drug otherwise it wasn't very different form Dauno. In fact Dauno was harder on the heart.
While I'm still researching all this, another attending stopped by to ask me to sign that we were ok with Amaey getting Ida instead of Dauno. I hadn't done all my research and hadn't heard back from everyone so I asked to sit on it for a while.

Then Amaey's doctor Dr. Wei stopped by to talk about all this and while we were talking he told me that if Amaey got Ida he would potentially drop out of the protocol. I think my tiger mom instincts were flared at that. I couldn't believe it that the previous two doctors failed to tell me about this main fact. I couldn't believe that after making such a big deal about Etoposide and how we needed to give that if we wanted to continue on the protocol and all that nonsense.
I asked Dr. Wei, why they did not save this drug for Amaey if he is so high risk and they new 3 weeks ago that he was supposed to get it.
Long story short, within 2 hrs of time a huge web was cast from the hospital room to Sunnyvale, Detroit, New York, and Canada. People were frantically looking for this medicine because we said that either an amendment needs to be made in the protocol or we need to get this drug.
While we are going through this search it was so exhausting. Not something a parent should be worrying about. My sister-in-law found 2 hospitals that had the drug, we passed the info to Dr. Wei. Saturday around 2:30pm we finally get an email from Dr. Wei that the drug has been shipped to out hospital from Children's hospital in Boston.

I felt so relaxed suddenly, did not realize how tensed and upset I was. The big deal about staying on the protocol is the option to get something called a NK cell transfer for Amaey. For this procedure they take the worst of the parents blood match and then do the BMT.
All of this is a trial, what Amaey has is very rare but if there is anything out there that can help his chances, we will do it all.

Checked into our hotel

Amaey and I came in on Monday for his routine labs and possible transfusion but Amaey spiked a fever so they admitted him.  He was in isolation but his tests for infection came back negative so he was really happy to sit by the fountain when Apurva and Arjun stopped by. His fever comes and goes but he is really happy today. His appetite is not back but he seems content.

My parents left for India today, did not want to tell them about Amaey's fever. They are feeling really bad that they could not stay longer and be more helpful. Last time he was in the hospital I did not realize much because when we would go home food was always ready. Dishes were loaded in the dishwasher, laundry done and folded. Late last night when I went home it felt too quiet.

When they were around I would keep fighting with them because they did too much, they never sat down and never let me do anything. Felt a bit much. But I so appreciate everything they do.
Next week my sister from Orlando will be with us for 2 weeks. We might be in the hospital around that time for Amaey's second induction so it will be very helpful for us. Arjun will also have finals, talent show, and graduation around that time so extra hands and feet will be great.

My friend dropped off color explosion 3D for Amaey and he loves it. He really gets into it and it makes him really happy. Today we spent a lot of time looking for piano music on amazon. I heard a snippet of Omar Sossa's new CD and I wanted Amaey to hear it, it was fun to see his expressions.

Tomorrow is day 22 and he has a procedure. The results will dictate the next step in his treatment. They do not expect for him to be in remission but we do hope he is. If he is not in remission they will start his 2nd induction chemo right away. Otherwise he will get a week off and then they will start the chemo at a much smaller dose. They plan to take him first thing in the morning. The procedure tires him out and it is painful too so he does spike a fever so I have a feeling we will be here for a while. Well... we knew it wasn't going to be easy.

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.