Amaey, our Darling Amaey

9 year old Junior Scientist

The periodic table was his bible

Kept his 12 yr old brother in check. Advised him on what to buy, how to play his stakes on lego universe. Scolded him for spending too much money. Loved and idolized him more than anything. Arjun was the only person that could put a smile on his face when he was down.

Pa had the best ears, was the best cook, best at Math. But no dancing please, he had to draw a line there.

Teachers, his agents W, Q and C were his lifeline. He looked forward to them with the need of an addict.

Books, we couldnt keep up with him. We should have moved the bookstore in our garage. His books took him places he'd rather be at.

Music, oh music was his soul. He could groove and move. His piano took him on musical journeys, the melody fed his soul.

His friends, how loyal he was to them. They were his soulmates, his brothers in arms.

His home was his safety. The sofas for cuddling with us, and concocting mischievous plans with his brother. The fireplace for reading next to. The backyard, his kingdom for sword fights and decadent BBQ's. His room was his palace where he loved sleeping with Sir Hoppy Bun Bunz and chuppering with his brother until they were scolded.

His kitchen, where he spent most of his waking hours was where he called all the shots. Arjun called him a cow, he could chew on a bite long enough to finish his Calvin & Hobbs. Arjun called him the king of change minds - I want shrimp, no quessedilla, no pasta - ofcourse he would say this after the meal was ready.

His Ma was his driver, cook, nurse, compaion, Cruella, and someone with whom he could be himself.

Our darling Amaey passed away on September 25 at 9:50pm.

His Memorial Service is on October 1, 4:00-7pm at Hakone Estate and Gardens

HAKONE ESTATE AND GARDENS
http://www.hakone.com/main.html
Hakone Gardens                                                       
21000 Big Basin Way        
Saratoga CA 95070      

408 741-4994         

Home atlas!

Amaey got to go home today, home being Home and not Ronald McDonald House or Palo Alto appt. We had a busy day with doc meetings, pharmacy meds pick-up, and biggest of all... Clean-up. 2months in the hospital meant we had moved part of our house here.
He was okayed to leave at 3pm but they added a blood transfusion so we had to stay until 7pm. Amaey was really upset but in the big scheme of things he was super happy.

We were counting and it was 48 days after transplant and 58 days total in the hospital. Wow, no wonder we are feeling so exhausted.

The best part of this was the big ear-to-ear smile on Amaey's face. Apurva had to leave to pick Arjun from school and Pratish came to help us out so he drove us home. Amaey was enjoying the view outside the window, enjoying the sunset on 280. As we were getting to the house we saw apurva waiting outside and arjun and vicky coming out to receive Amaey. As soon as he got out of the car he ran to Arjun and gave him the biggest hug ever.

Amaey went straight to his room and happily walked around the whole house.

Today was a momentous day, coming home after transplant is a huge milestone, one we will cherish.

Sept 10

No results yet from the tests. Hopefully next week we will have a better idea. Until then we are here. His itching has stopped, if his fevers stop we can go home, he still has tummy pain so he gets adavan as needed. Otherwise, we had a good time with Kaki, Amaey asked her to stay longer and she extended and spent the day with him which was sweet.
We are hangin in there, enjoying the weekend.

Sept 8

Maureen stoped by in the morning and that was really nice. We chatted about kids school and different things, Amaey was itchy but participated and that felt nice. For a change we were not just talking about him or obsessing over him, I think he liked that too.
The docs stopped by and felt that Amaey was looking better. No fevers yet so we are all crossing fingers, toes etc and hoping that it won't come back. No results yet, they think something should show up to tomorrow.

Amaey did resume taking in some fluids and sat by the window, watched his Scooby-Doo, ate some corn, took a walk... He has promised to playbhis piano and go for 2 more walks before the end of the day. He is napping right now, for the first time I'm not hearing any rustling in those sheets, looks like the sleep has taken over the itchy bitchy monster.

In the afternoon he had a visitor he hasn't seen in a very long time, Antonio from school and Patricia stopped by. Amaey stayed in bed for most of it but got alert and started interacting and showing him his nerf gun and Lego universe and chatting about things. When Antonio was leaving Amaey took his walk to the main door of the unit. I had a great time catching up with patricia too. It was really wonderful of them to stop by.
I had such a treat, two friends in one day to chat with. BUT wait there is more, Kaki is in town and she called me after work and stopped by in the evening. It was so wonderful to see her. I really miss her. What was wonderful was to see Amaey laugh out loud, he was so happy, participating in all the conversations, listening to kaki's stories about kaka and the twins... It was warm and amazing.

Contrast from the other day, a beautiful contrast.

Day 44

Amaey's day started with the itch and we acted fast and brought him benadrly, it helped calm him a bit. When the docs came to see him we were talking about GVHD and fungal infections. Test results are not back yet so we will just have to wait.
After I left, Apurva said the day was relatively better, no fevers! The itch was there but it was tolerable. He had his endoscopy at 1:30 and he did well. The photos the GI docs shared of his upper and lower gut looked pretty clean but we will get more detailed info once their biopsy is back. Arjun and I went back with dinner and Amaey had been resting and reading his book.... Lego universe was being initiated so that when brother arrives they can play...

Wow that felt nice to see a Amaey with his book.

He started getting tired and restless and after we left he slept. Apurva said he had a good night and fever free.

What a day!

I'm so tired that I can't write about the day because the thought of everything that kept happening is making me tired again.
When I got here Amaey wasn't his usual, I want to get in the bath, person. He just stayed in bed slightly itchy. I finally made him get up so that he could be up and awake for the doc rounds. A long oat shower, I thought, might soothe and relieve him but not really. He was quite itchy even after the shower. An oil massage did not help either. He wanted to be stripped of clothes and get back in bed with his shorts and a light bed sheet. He was very itchy by now, I tried rubbing his back and followed his itch, put some calendula too.

When the docs came he was really flared up. He did not feel like getting ou of his bed. He finally settled after his 2pm benadryl.

Amaey had to stay hungry incase he got a slot for his endoscopy however they did not have space so they confirmed for sept 7. However the derm people were planning to do his skin biopsy today. Amaey had a bad memory from his previous derm biopsy. Since it was urgent at that time they did not sedate him and he got stitches and he felt it all. So I was sure not to put him through that without sedation.

At 2:30 they told us that the derm folks and will come and do the procedure in his room at 5:30-6:00. Amaey could not eat or drink and refused to get out of bed. At 5:30 3 nurses, derm doctor, BMT doc, and a hospitalist show up.

They sedate him and when they are ready to inject the numbing med in his skin. I'm standing by him and he squeezes my hand really tight. That tells me it must really hurt. But what comes next completely takes me by surprise, the doc brings a devise that looks like a pumpkin carving took, something you would use when you want to make a perfect circle and remove the pulp out of the fruit... Right in front of my eyes he pushes it inside his skin and takes out a perfect circle from his body, blood starts oozing out, I cannot believe my eyes, he is so fast and good though that before any blood is lost he already stitches him up. Oh my god! You got to be kidding me... The thought that Amaey had to go through this twice without pain killer or sedation kills me, the fact that Apurva had to watch him and must have had to hold him tight and tell him to be brave, really kills me.

Procedure done, everyone except one nurse stays behind to monitor him since he had his procedures and loopy drugs. He sure was loopy and suddenly very very itchy. Apparently he had a reaction to one of the loopy drugs. GREAT!! This is at 6:30pm and he is going crazy until 10pm. They give him multiple drugs to help him and he does get a little relief around midnight but nowhere near to calm him down. I ask for the hospitalist and she calls the doctor and they finally listen to our request of stopping vanco and they move him to another drug.
After several rounds of ice packs on his body and more benadryl and adavan and no more vanco he settles around midnight, or maybe he was exhausted. He doesn't sleep though, not a deep sleep, I know because he was rustling and moving the entire night. I fell asleep at a point but when I suddenly woke up to check on him he sure was squirming around, however the itchiness had finally moved down to a level 2 from level 10.

Nights over, it's a new day and he is due for his endoscopy today. Will we know the cause of his fevers? Still a question looming at large.

7 weeks since transplant and counting

Nope we are not leaving the hospital just yet. Amaey still keeps spiking fevers so they did a full body scan yesterday and the results were negative. This is great news that all is well in there but it also means we still have no idea what is causing the fevers.

My friend Annada whose son had a cord blood transplant said something eye opening, the stage at which our boys have reached we are going to hear, 'we don't know what is going on' lot more from the doctors.
It's true that they are among the elite few that are experiencing science at it's best. Stem cell transplant was so controversial in the Bush era, he stopped funding for the same. Scientists and doctors are still figuring out how all of this works but they won't know more until more people have been experimented on. They need data and facts but they don't have a lot of data. And frankly each body is so unique. Someone that has a mis-match donor might sail through recovery while a 10-10 match might still be in the hospital with undetectable symptoms. It truly is a miracle to have such a transplant available but it is very frustrating when you are on the receiving end when the cause of fever is perplexing.

I do understand the depth of intricacies involved, his symptoms could be GVHD or viral. If it is GVHD then they can start treating it with steroids however steroids mask fever so if it is viral the fevers will be gone and the viral will still be looming at large. So they cannot treat him as GVHD as yet until they have conclusive results.

Since the scans were -ve, tomorrow they will do an endoscopy of his upper and lower gut. They also need to do a biopsy of the bump on his chest but dermatology is not available so now they are trying to nail them down. Hopefully they will have completed all tests on him by tomorrow and get results by Friday which means we are definitely here until next Monday.

Mary Claire stopped by with her two boys, Apurva said Amaey was really itchy but playing the PS3 with Raffi and Gabe was a great distraction. He said having them over brought about a little change in the rooms atmosphere and anything that could distract Amaey from the itch was awesome.

Tough jobs (by Apurva)

My son, Arjun, is twelve. Although he is a wonderful and loveable boy some teenage behavior is slowly and surely starting to become evident.

This morning I asked him to take the clothes out of the dryer and fold them. Much to my surprise he started crying – large teardrops rolling down his cheek. I didn’t make the request in a loud voice or harsh tone, it was just matter of fact and yet his reaction really took me by surprise. I asked Arjun why he had such a strong reaction to my request and he responded that he “hated” doing “laundry”. I tried to probe further and asked him why. “I hate it! I just do!” I knew better than to keep pushing him on this and so we swapped assignments. He emptied the dishwasher instead.

I couldn’t quite get our conversation out of my head and later that morning I started thinking about why we all have jobs or tasks that we really don’t want to do or to put it more forcefully, downright hate. I came up with three main reasons:

-       Mindless activities that just give us no satisfaction

-       Tasks that are really hard

-       Jobs that are overwhelming or endless

I feel that each of these tasks pose a different hurdle and can be overcome in different ways.

Mindless activities are things like laundry or dishes that don’t stimulate our mind and as a result provide very little mental satisfaction. I find that the best way to get through these tasks is to pair them with another activity that is fun and engaging. For example, watching TV while folding the clothes or listening to music while emptying the dishwasher. Even if it’s not possible to engage the other sense we can always let our mind work for example when we are stuck in traffic.

I am not very handy and so jobs around the house like leaking faucets or broken doors always push up my blood pressure. We all have our buttons – dealing with computers, doing accounts, working out. Surprisingly for every challenging job we hate, there is someone else out there who actually loves it. So difficult jobs are really those that don’t match our innate abilities and interests. I find that the best way to get through these assignments is to get them out of the way first and reward myself when I am done. For example, why not reward yourself to a movie or an ice cream next time you have to snake a toilet? Another option would be to trade tasks with others. For example, I would happily take care of your computer problems if you are willing to paint my shed.

Some jobs just feel overwhelming or endless. The best way to deal with these is to break them down into smaller, more manageable chunks. Look for the small victories rather than trying to get the whole thing done. Having enough breaks in between is really important since the longer you persist at the task beyond your comfort zone the more tired and frustrated you get and the more likely you are to resist that task in the future. Another solution is to share the burden so rather than doing the job all by yourself split the work up among multiple people. Even the very act of doing the task with others makes it more palatable. Our younger son, Amaey, has been in the hospital for almost two months and we don’t even know exactly when he will be discharged. If my wife, Purvi, or I tried to take this on all by our selves it would be far too overwhelming. Instead we split the task up by alternating who sleeps at the hospital. Also, we have tried really hard to compartmentalize so that if we are at the hospital we are fully devoted to Amaey’s care, however, when we are away we try our best to get on with the rest of our lives. When Arjun or other friends come by, it also gives us an opportunity to take a quick break, maybe go for a walk.

Later that afternoon, Arjun and I once again talked about this whole idea of unsavory jobs. After I outlined what I have written above, he not only listened but actually said “Thank you!” He did have a very insightful question. “Some times I just don’t want to do a job at a certain time or feel rushed.” This is another universal problem. I think the whole time aspect is closely linked to planning and is distinct from whether we like or don’t like a task. I will be sure to share my thoughts with Arjun and you once I have had a chance to think about that some more.

Coach Apurva

Apurva starts work on Tuesday and I'm dreading it in many ways. He is so on top of everything at the hospital and at home, I feel so less pressure because of that. He has become a half doctor, an amazing cook he alwasy was, and a coach helping Amaey with his food and drinking. He works so patiently with him and I feel I will slack once he is back at work. He is single minded and when he has a task at hand he can single mindedly focus on it until he has completed the task. Right now his task is to get Amaey to drink more so that they can wean him off the ivy TPN. He has done an amazing job and surely the TPN has been lowered and he gets to be free for 4 hrs in the afternoon.
One of the days that Amaey was feeling better he tells Apurva, Pa you were right, drinking some milk and eating is helping my nausea. I could see Apurva beaming when he told me the story.

Hopefully Amaey will see the benefits of eating and drinking and not fight me much otherwise I will have to put on the coach hat too and I do not like that at all. 

What a nice break

Yesterday Arjun went over to Henry's house for a block party, my day to be home so suddenly I had a lot of time to myself. I had already cooked up a storm so my fridge was full, Vicky made some amazing tamales too so no cooking to do.
So what do I do... loosen up and take it easy.
Marcela came to pick me up and we went for a foot massage, a wonderful dinner after and yogurtuille to end it all. It was so wonderful to chat and drink wine and chat and walk and enjoy ice cream, and dressing up, ofcourse.
Just as Marcela is dropping me home I get a text from Davina and then she and her friend comes to pick me up and we end up at downtown again. By this time I'm totally zen with massage and wine so I just have some decaf coffee and enjoy yet another wonderful time with two wonderful ladies.
By the time I'm home I'm feeling so good and bad, bad because I have done nothing, no laundry dishes nothing. But that's ok it was totally worth goofing off.

In the hospital Amaey spiked a fever this morning so they have scheduled a full body scan. He has been itchy too so we really need to get to the bottom of this. Hopefully we will get some results by tuesday morning. But all of this means that we are not leaving the hospital this coming week.

Last two days Amaey is doing better with his nausea and pain. He hasn't wretched in the morning or needed extra meds. Today when the docs came in for rounds, the only question he had was, when am I going home, I want to go home today. He was talking about scootering around and that was awesome. I'll definitely go and buy him and Arjun new scooters because the ones they have are slightly rusty and we need to have new, clean stuff for Amaey.

The only thing stopping us from leaving is fever. He still spikes a fever and they are not that high but it's still a fever. If the fevers continue they will do a full body scan on him just to make sure all is well inside,

They already came and taught us the home nursing procedures. We got our education on do's and don'ts and discharge list which we will be glued to for the first few weeks. It is always nerve wracking when we have to go home, but going home after two months of being in the hospital will be a change of pace and reality for us. We will be staring at him and watching him like hawks so that we don't miss anything.

We have been spending our last two days looking for apts. I also stopped by Ronald McDonald house and it is final that Arjun cannot stay there. We liked one appt which is 5 min from the hospital and we might have an apt by end of next week.

Arjun started school on Monday, this week feels so long. Yesterday when I went home and I told him I was tired he said, wow pa said that yesterday too, you two are always tired why? And I felt like getting mad at him for being inconsiderate but while I was explaining the reasons I realized that it was not his fault and it was ok to say it as he sees it. Last two days were very busy because of the apt hunting. We haven't really taken on much in a while and now we know why, we are operating on an almost empty fuel tank.

Yesterday was sweet, while we were with the nurse getting our discharge training and education Apurva mentioned that it was our anniversary and the nurse spent a lot of time planning a getaway lunch for us. So we left Amaey with the nurses and walked across the hospital and had lunch and gelato. It was wonderful....