Future

Today Apurva and I went for a nice walk before dinner. It is funny that I was feeling happy just for the mere reason that we came back home after the appt. So strange isn't it, life is so tentative for us, when we take him in we really never know if we will be able to bring him back home with us.

This is a fear that has set in for me now. When he goes in for his BMT we really do not know if he will come back. Apurva and I talk about this, sometimes he feels down and other times it is me feeling withdrawn about it. Underlying, we both have faith that he will be fine and this will be a new life for Amaey. It's a second chance.

I'm taking little movies of the boys everyday. Capture each precious moment.

We are staying very positive but sometimes it does get hard. Most of the time we just have to look at him and his amazing spirit and that completely lifts us up and makes us forget everything.

Tomorrow will be a new day. Yesterday will be a past. Today is all we have and we are making the most of it.

Kids & Art

The hospital stopped by at our kids & Art office to take a look at all the art. They picked 25 pieces some paintings, photography, and two masks. They will be displaying our art in a display case near the cafeteria. This is really wonderful news because most of the kids and families that participate in Kids & Art are from the hospital.

I can see Amaey excited to hear from his doctors and nurses when they see his art. They will get to see another side of these kids, the creative side. The non slow and grouchy side. instead the bright and cheerful side.

All these years walking around the hospital and seeing art on the wall I have always wanted to see the kids art on those walls. I finally get to get their art displayed and the hospital art buying committie might buy some pieces as well.

Happy Fathers Day

To all the special dads who take the time to be themselves, share their love and knowledge with their kids, laugh and joke with them, teach them to respect who they are.... Happy Fathers Day!

One dad that deserves a shout out is Apurva. We all go through journeys in our lives but what we learn and become after each journey is for future to tell. When we heard about Amaey's relapse I didn't think I could have kept going. I did not have any energy left in me. I had taken the job of the primary caregiver but I felt like I had used myself up. Apurva on the other hand was just there, he was there 100% as a dad, as a cook, as a coach, as a teacher, as a joker, and as a worrier. He evolved into this person, a dad with his head tight over his shoulders.

Happy Fathers Day to all dads!

Vampire strikes

We came in to the day hospital at 8am this morning. This was a scheduled transfusion. We did not want Amaey to get both platelets and blood on the same day. If that is what caused a fever last time it wasn't worth putting him through it again.

The hospital complied and let us divide the transfusions. Amaey is benadryled out and sleeping. They are watching his blood pressure because it is low and monitoring him for fevers.

Apurva and Arjun are on the plane to LA. They will be attending the Cars 2 premiere. I'm so glad that they could go. We did not book their tkts until yesterday afternoon. It is hard to plan so we don't. If it happens it happens. I was scrambling to find decent clothes for Arjun yesterday. His jacket was small on him and all his shirts felt snug. My friends were all looking into their kids closets to save me a trip to the mall but finally at 7:45 pm we did end up at the mall. Arjun has a style now. I was impressed, this kid knows what he will wear and absolutely not look at. No tie or shirt for me, I will wear a nice design t-shirt with my jacket and jeans. OK, I can live with that. Can we go get a haircut? No, I like it long and I'm going to wear it.... And he shows it to me, but it won't stay that way the whole time because I really don't like all this hair on my forehead. WOW, this child is almost a teenager, when did that happen?
I feel like every time we are busy with Amaey, Arjun regresses or grows, oscillating between independence and his need to be babied at the same time.

Parenting is quite amazing. I catch myself shaking my head when I'm alone, can't believe how much can happen in one lifetime. Who says life is short? I think life is long enough to live many lives, be many people, make many mistakes, find new meaning, and then start all over again.

Today

Apurva took Amaey for his Nuro Psych appointment in the morning. It was 3 hours long and Amaey said he had a huge headache after. What is democracy. Can you arrange all these white and red blocks in a certain order using only 9 blocks. Amaey would not tell us more but looking at all the forms we have to fill, I'm sure it was a lot of work. Apurva was so mad (in a funny way), the doctor is greedy... 3hrs, what is she going to ask an 8 year old for 3hrs?

They came home for an hour, we had lunch and then I took him back to the hospital for a platelet transfusion. They gave him benadryl so he is fast asleep. Tomorrow at 8am we have to come back to the day hospital for a blood transfusion.

Last time he had a fever after he got both back-to-back so this time I insisted on breaking them up over two days. We don't mind driving him around if that will help him tolerate all of this better.

Amaey in photos

Amaey opening some gifts 

Amaey playing starwar madlibs with Christopher via skype

Aloha! and yes the little figurine next to Amaey is... you guessed it Gabriele:)

   

Since Amaey did not get to attend the screening of Cars 2, they sent him the screening at the hospital. Here, Apurva, Amaey, and Arjun enjoying Cars 2 in his hospital room.

BMT work-up

The Bone Marrow Transplant (BMT) team has started their work-up on Amaey. This means they are starting all the prep. He needs to be evaluated by every department to do a baseline test. They want to mark where Amaey is right now and this will be their reference for after BMT to get him back to his pre-BMT levels.

Here is what is involved-
June 15 Audiology
June 16 Nuclear Med (kidney function)
June 17 Neuro Psych evaluation
June 21 Opthalmology
June 23 EKG/ECG
June 24 Neuro Psych part 2 and PFT(pulmonary function)
June 29 Radiation consult
A dentist will evaluate him too.

Sounds intense and it is but the funny thing is we are happy that we can take him home each day. His hair is starting to fall like crazy. We were teasing him today that he is shedding like a cat and we need to vacuum after him. He really wants to go for a haircut so that he can cur his hair really short. I would like that too because right now he has a full head of hair and I don't like seeing those bald patches on him, I'd rather he have a shaved hair and then if it is all gone then it is not a huge drastic change.

June 13

On Tuesday we were supposed to have a consult with Amaey's main doctor. So early in the morning Amaey wanted to shower and eat his breakfast and be ready. He had a whole speech ready for the doctors, reasons why they should send him home.
So he decided to act it out and be prepared. He asked me to be the doctor and he was - Amaey. It was really funny but he was prepared.
finally when the doctors did show up he was tongue tied. Once he was prompted he was on a roll.
1) I have not had a fever since I got here. I'm fine and bored.
2) My cultures are negative
3) There is construction starting in the hospital which means I can't leave my room at all. I will be better off at my house and more happy too.

The doctors agreed to all his points but insisted that for an AML patient they really do not advise to leave the hospital until the counts are up.
Amaey promised that at the slightest sight of fever or problems he will work with us and come to the hospital. They made his do a pinky promise and told us that this was our one and only escape from the hospital pass. Next time we will not be able to leave until they think he can. We greed to all of that and finally at 6:30 after all the meds and paperwork was complete we came home.

It was really nice because my sister was leaving for Florida and she got to spend a few hours with Amaey before leaving.

Staying here forever...

Yesterday the doctors came in for their rounds and informed us that they would like to have Amaey stay here until he is handed off to the transplant team. You should have seen the disbelief in Amaey and my face. We felt so cheated. Amaey pointed out that he has not had a fever since he came in here, he is feeling great, he has no other symptoms and why would they make him stay here.

They have put us in a Hepa filtered room, this room has a double door and is very secure. They are trying to keep him as safe as possible. However we know that if he is in the hospital the chances of him catching something are much higher. They listened to everything we had to say but seemed pretty set in their plan.

This morning Amaey's cultures came back negative and the doctors said that they will talk with his team and then decide what to do. We have stopped fighting at this point.
In the meantime we are making him very comfortable here. This afternoon, Amaey and I enjoyed our lunch by the fountain. It was nice and sunny. We are back in the room and Amaey is watching food network. I'm sure he will find a recipe that he will make me quickly write down and then call Apurva to cook it for dinner tonight.

Yesterday we were watching diners, drive-ins, and dives and he looked up at me and said, doesn't Rita aunty make really good french toast? He takes my phone and calls her. Rita aunty can you bring me some french toast for breakfast.... and guess what Rita aunty falls for his whims. He gets yummy french toast, strawberries and syrup... he is in food heaven.

For him food is his only connection to the outside world. He has everything else here but the fact that that he can plan his meals and get them delivered fresh makes a world of a difference to him.

Anything to keep him happy...

No fever

We checked in this morning but Amaey has not had fever which is really good. All the doctors come in and wonder why he is here because he looks really good. We think he spiked a fever from the transfusion but we won't know until his cultures come back on Sunday.

Today was the first time Amaey had a meltdown. He was really upset when we had to leave for the hospital this morning. He had literally just got home after 2 weeks in the hospital, he was so looking forward to spending time with Arjun on the weekend. He just hugged me and cried so much. I told him it was ok to cry, instead it was ok if he wanted to scream. It wasn't fair at all and it really sucked. We just sat in the kitchen and let him cry. Once he was quiet I asked him if he was ready to leave and he was.
He gave the doctors and nurses a real hard time too. He kept asking them why he had to be there when he had just left. Why he had to stay when he did not have a fever anymore. He was upset at Apurva and me for calling the on call oncologist when he spiked a fever. He kept asking the RN when he was going home, she kept avoiding the answer and he kept getting back to the question until she finally said that they needed to watch him for couple of hours but most probably he had to stay for couple days until the culture results were back.

She was a new RN, not used to Amaey's direct assault and questioning tactics. He can advocate for himself and she was quite surprised. Some of the other nurses that know him well were taking their time to explain things in detail to him. It is amazing to watch him take over when he is in the hospital. He knows the place and the people, he knows the ways and what is expected off him. He has spent 5.5 years of his 8.5 years here, I'm glad he is in charge, I'm really glad he can advocate for himself.

Home, hospital, home and back again

Amaey was discharged on Tuesday. He was so happy to be able to go home and do things at his own pace. Wednesday was hard to contain him. He would not sit in one place at all, he composed some wonderful tunes on the piano and as soon as Arjun was back from school the two of them were off. I haven't heard so much chatter in my house in a while. They had so much to talk about, so much to share, so much to show each other.

They also had two very special visitors. Ashish stopped by and then Flavio stayed over. We hadn't seen Flavio in almost 4 years, it was a special treat. However we were worried because we haven't allowed visitors in the house. His counts were fine so we knew it was ok but we usually try and avoid having too many people over.

Thursday, Amaey had to go back to the clinic for a check-up and they ended up staying for the whole day. His platelets had dropped to 3... that is a dangerously low number. He got a platelet and blood transfusion. Arjun had graduation and dance at school so my sister and I were with him. When we got home at 10:30pm Apurva said Amaey had a fever, this meant taking him to ER. We waited however and kept checking his temperature and it went down so we decided to wait until the morning.

This morning I brought Amaey to the day hospital. Since he had a fever and his counts have gone down very low they need to do cultures and have started antibiotics on him. He gets benadryl because he is allergic to one of the drugs and he is falling asleep now. They don't have a room for us in 1 North so I have a feeling we will be in the day hospital for a while. They are saying that we will be here for 2 days for observation, I have no idea what their real plan is. He hasn't spiked a fever since last night but the chemo he just got is very strong so they are expecting his counts to sink low even furthermore.

I already came prepared with bags so we are ready for our stay.

Talking doctor

Amaey had a visit from the talking doctor. As soon as she comes in his room and introduces herself he asks if she was writing a biography on him.... it is so amazing how this boy thinks.

She needed to meet with me first and see if I approved of her and then she was supposed to talk with Amaey. By the time she was ready to talk with him he had received his benadryl and he was loopy. I had left them alone and had gone for a walk around the courtyard. By the time I came back he was fast asleep. Later I teased Amaey that he felt asleep on his date and stood her up. He was laughing his head off. He thought I was too crazy for him.

On Tuesday, Apurva, Arjun, and I went to meet a talking doctor too. Our goal was to have Arjun talk with someone along with us so that we could understand how he felt and he could realize that we felt the same way and that he wasn't alone.

She played a card game with us and made all of us very comfortable. When we got home Amaey asked if he liked his talking doctor and Arjun being Arjun just raised his shoulders and said... I guess.

We know how hard this is for us and cannot imagine what Arjun must be thinking or going through. I'm sure he is not thinking about this all the time but when he hears us talking on the phone, or talking amongst ourselves, or discussing with doctors, I'm sure it worries him because he doesn't understand everything.

June 4

Either Apurva or I are always with Amaey when he is in the hospital. We have had family and friends stop by and spend time with us but one of us is always there.
Yesterday was a different day, it was Cars 2 premiere and cast and crew screening. Apurva has worked really hard on this movie and I so wanted him to be there, this was his big day. He refused to go if I did not go with him. The screening is usually a thank you for the spouse/partner. He really wanted me to be there.

My sister was supposed to stay with Amaey and Arjun was supposed to be gone for an activity and sleepover.
Pratisha nd Bharvi were supposed to come to the hospital later so that there were enough adults with Amaey.
However, Arjun woke up with a headache and sore throat and here I was already uncomfortable going away in the evening. We decided that Arjun had to stay home and rest and my sister had to stay with him.  At the hospital it was a different story, they had a floater nurse and I was getting very uncomfortable with the fact that Amaey was to get chemo and she did not have all the answers for me.
Long story short, I did manage to take care of everything in the hospital and we did make it to the premiere on time and I'm glad we went because the movie was real fun. I'm really proud of Apurva. We had a lot going on while the movie was in production.  It takes so many years to make these movies and when it is all done the hard work shows. It's a fast paced, action packed, racing movie about cars... now what's not to like about that.

We did not stay for the party, I came back to the hospital and stayed the night after the premiere, it almost felt like I was cinderella, whisked off in a limo in a black gown, with a handsome prince amidst the glitz of the Fox Theater and back in my hospital room before the stroke of 10pm in my flannel jammies.

It felt surreal to be there but we were really glad we were able to celebrate the occasion.

Family

My sister arrived last night from Florida. It was so nice to see her. She has always been the one to remember birthdays, first one to send you a card, first one to call on your anniversary. A great cook. A warm person. She was always like a mom to me when I was growing up. She got married when I was 8yrs old but I spent all my summers at her house. When she had kids, I would take care of them over summer.
She was the one that put make-up on me and dressed me up for all my school plays and dances.

I just feel so relaxed that she is here. Amaey was so happy to see her at the hospital today. When she was leaving he didn't really want her to go. And I know at home Arjun and Apurva are getting spoilt too. She is just such a giving person and she does it all so quietly, I was always amazed by her when I was growing up.

Both the boys got to spend a lot of time with her in Florida when we went for her daughters wedding. They got to see all my siblings. All 6 of us got to be there and connect. So glad Amaey could attend the wedding, meet family, go to Disneyland, visit the new Harry Potter land.

Right now Amaey is being a total techie geek. He is is on skype with Christopher and they are playing Lego Universe together. It's really cute, he is propped up on his bed and lost in his world.

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?