Hospital Stay

4 years ago on Nov 22 2005 Amaey was diagnosed with ALL. 

It felt really strange to be back in the hospital today still fighting the ALL.

We checked in the new El Camino hospital at 1pm. This round he will get Cyterabine chemo 4 times over the next two days. On the third day he will get Peg which are two shots on his thighs. 

This chemo combo usually gives him high fevers. He is already feeling tired and complaining of a headache. We do hope to go home before Thanksgiving.

My parents

My parents left so this time around the juggling has already begun.

Yesterday, I met a mom in the clinic who has a 7yr old daughter going through treatment and 3 more kids at home. She looked so tired. I asked her how she managed without any extra help... I guess we all manage if we have to.

I must say that my parents came at the right time. They arrived in Summer, and I did not realize how tired I was. I took a nap every day for the first month. I felt like I could keep sleeping forever. Then they left for 2 months to visit my brother and sister. During that time I was already recharged.

When they came back to us in September the longer hospital stays began and my teaching job became busier. Amaey got really sick and we decided to home school him. If it weren't for my parents help making all those transitions while keeping my job and managing the last minute dashes to the hospital would have been really hard.

Hospital Today

We are in the hospital for (non-stay) chemo today.

Apurva and I were worried that Amaey will not make counts. He had dark circles under his eyes and we thought he might need blood or platelet transfusion. But we were proved wrong and that was good.

We are in a room now and after giving him some zofran they will start his chemo. Hopefully we will go home in 3 hrs.

Amaey is busy watching the food network. The Barefoot Contessa is cooking up some classics.

Amaey wants to cook a meal for Thanksgiving. While I'm driving he takes my iphone. I think he is playing games but today I realized he surfs for recipes. He is so cute.

2 of 8 Methotrexate

We are in the hospital.

This is 2nd of 8 hospital stays for this round of treatment. We got to the hospital around 12:30pm. Once we settled down they hooked him up and started hydrating him. At 8pm they will start his chemo. He gets this chemo for 24hrs. After that their goal is to flush the chemo out of his body. They keep hydrating him until the chemo is at 0.1 level. This process can take 3-4 days. So we will definitely be here until Thursday.

We are at the El Camino Hospital so it is a bit farther away from home. At the moment they do not allow anyone under the age of 19 so Arjun or his friends cannot stop by to visit him.

We have officially started his home schooling. The school district sends a tutor for 5hrs a week. We are really blessed to have his teacher from school as his home school teacher. She is here at the hospital and working with Amaey. I just heard him pick on his teachers handwriting. Only Amaey would do that, tell as it is...

We watched Jurassic Park at night, it was really fun.

Day 2 was fine. 

The hospital is moving to a new location this weekend so the entire floor was deserted. They had already packed up the play room, no books, and not much else to do. They wheeled the gamecube to his room. Which helped distract him now and then. around 1pm Calvin the hospitals teacher dropped by and we all walked Amey to the school which is on the same floor. I took my computer there and worked. The two of them finished all the homework and spent almost an hour playing math games on the computer. By the time we went back to the room it was 4. Amaey was really happy. The two of us read, played sequence (I lost all the games.) Apurva came to the hospital around 8:30. After all the change of duty hand offs I went home.

Day 3, the two boys spent the day together. 

Apurva took the day off since it was Veterans day and Arjun was home. Apurva said that Amaey had a busy day between Mrs G tutoring him and Renu-Sunil stopping by (with his penne pasta). This time around Amaey did not want to look at the hospital food. Even the smell grossed him out. We took all his meals from home. He asked for milkshake, quesedilla, linguine in red sauce, corn, sliced apple, different types of snacks. It was a great idea because this is the first time he ate well. 

At night they watched Pink Panther and around 10:30pm I got a call from them saying he was going to come back home. This was real good news because he never comes home within 3 days. This chemo always takes 4-5 days.

It was so wonderful to see him all happy. It was wonderful to have everyone back home.

Friday CBC

We went in on Friday for his routine bloodwork. 

As soon as we were in the car driving to pick-up Arjun from school I got a call that they needed him back, his blood was low and he needed a transfusion. Since kids are not allowed in the hospital we first had to go home and drop Arjun and then we drove back to the hospital. They had the blood ready for him and gave it to him over 3hrs. He did fine with the transfusion. We got back home at 7:30pm. 

IT

Amaey had his IT today (Intrathecal). He has to fast for it and take a bath with anti-bacterial soap. He is given anesthesia for this procedure. They take him to the operating room and put the sleeping medicine in a tube which comes out of a mask. He usually likes to count something while he falls asleep. He starts planning what he will do in the procedure room while we are driving to the hospital. He will also plan the flavor of his sleeping medicine.

Will it be bubble gum or strawberry. Hmmm how about grape today.

Today he couldn't decide between atoms and planets. So finally he did say the planets. By the time he said his 5th planet he was fast asleep and then they asked me to leave the room.

After an hour when he was in the recovery room they called me. He was still fast asleep when I went to him. The minute he heard my voice he jumped and tried to get up but he was still very drowsy from the medicine. 

It was 12:30pm and he was really hungry by then. All he could think of was to get out of there and get home to his leftover chinese food. Which is exactly what we did.

He was really tired after e got home and took a long nap. He was quite refreshed after and has had a wonderful day.

Home School

We have decided to home school Amaey until the end of winter. The H1N1 is rampant and his immunity is going to be compromised with this intense round of treatment. We haven't ironed out all the details yet but as a first step we have talked with the school district so we will take one step at a time. 

When we told Amaey about our decision he had 1 condition, provided we give him 2 playdates a week with his best buddies.

So now I will add, amaey's social planner, in my job title as well.

I don't think we can avoid germs and life from happening around him but we can definitely limit the exposure and help him stay healthy through the worst months of the season.

Amaey is home

We got the green light to bring Amaey home today. His counts are up. Ofcourse if you see him today you couldn't tell that this kid went through so much suffering. Kids are just amazing. I do not know how they do this. 

Arjun does not have fever either so it was really nice to come back home and have a happy healthy family to be with.

I must say that we haven't quite figured the coming back home day very well. We somehow have the energy while we are in the hospital but when we come home Apurva and I suddenly feel so tired and then we have Arjun who wants all the attention because he hasn't seen the family in a while and Amaey wants to be the king of the house because he is the one coming home and by the end of the day we just feel so incapable of managing everyones expectations.

Well, I can't think right now but this back home day definitely needs a little fine tuning.

Guess who ate today

I went home last night to find a really slow Arjun. He had been waiting for me and fell asleep on the sofa in the living room. He seemed warm to me at night so when he woke up in the morning I took his temperature and sure enough he had fever. Poor baby was feeling really sick today. I stayed with him the whole day. His fever kept coming and going. He has been quite a trooper and he ate some dinner before I left for the hospital.

While at the hospital Amaey's fever had not returned so at least that was a relief.

Apurva is home with Arjun now and Amaey and I are in the hospital watching Looney Tunes. Amaey had a food request so I made him corn soup and cheese quesedilla and apple cider bread. It was wonderful to watch him enjoy his meal.

We are still waiting on Amaey's culture but we do know that his flu swab and chest xray were negative. He is still neutropenic so they will not let us go home until his numbers come up to a safe place. Right now with Arjun sick we would rather have Amaey in the hospital so that both get to recover and not catch each others germs.

That's All Folks!

Family and Friends

We know that everyone is concerned about Amaey and our family. Lot of friends and family have called to ask how they can help. We just want to say that we are touched by your love and support. Right now we have my parents so support, food and Arjun are taken care off. Other than that there is not much to do. Apurva or I prefer to be by Amaey's side when he is in the hospital. If he is not in the isolation room as he is this time, we love to have friends stop by. Amaey likes company too.

Once my parents leave we will reach out for help. Until then just send good positive thoughts our way. Amaey is a special child and he has a lot to offer to this world. We want to see him grow up and put this all behind him. 

No fever

Apurva is in the hospital with Amaey today. Amaey picked up the phone and talked with me. Wow, he sounded much better. Apurva said he ate a little which is wonderful compared to yesterday. He did not get a fever last night and we hope that it stays that way.

He is getting 3 kinds of antibiotics and to be safe they are also giving him flu medication. One of the antibiotics gave him an allergy so he also gets benadryl.

When I took him in on Thursday he was so weak. He did not move for the entire day and slept the whole of Friday. I could not motivate him to move, smile or do anything. It was really sad to watch him feel so bad. That is not Amaey, he will always make an effort but when he is so low it means he cannot take it anymore. Finally around 7pm I did force him to watch Project Runway with me and then he asked to change to his favorite Food Network. Slyly my plan worked and I was happy to get him out of his funk. When I left the hospital he was eating his banana and dhokla that Ba had sent for him from home. 

Amaey in the hospital

I had stopped contributing to the blog because, a) I felt tired writing 

about what we are going through b) things are as per protocol 

c) life is just plain busy. However, I have a lot of friends calling and 

emailing and then family all around the world wonder about him.

The last 2 weeks have been particularly hard for him. He started 

his delayed intensification on Oct 12. The 3 days in the hospital 

with chemo completely knocked him down this time. He had high 

fever the entire time and came home with it as well. After a few 

days of rest he was feeling better yet not his best. On 19th we went 

in for his routine blood test and later that day they told us Amaey 

was neutropenic and needed a transfusion. So on 20th I took him 

for that. He usually perks up after a transfusion but this time around 

he did not. He was still dragging his feet around the house and not 

really eating anything. On 22nd he threw up in the shower, I got 

worried so I emailed his doctors. I wanted them to take a look at 

him when i brought him in for his routine blood test.

They decided to admit him based on the symptoms. He had a high 

fever too so now he is in for at least 3 days. They are trying to rule 

out the flu or H1N1 or any other infections. I have never seen Amaey 

so sad and that really breaks my heart. He is such an upbeat child, 

looks at the positive side and takes everything in his stride. Right now 

he is being pumped with so much more medication. I don't know how 

a little body can take all this toxicity. 

I believe in silver lining but I really do not see one with all of this pain 

and suffering.

Uncle Jed’s Once-Daily Power Green Shake

Raj sent this recipe to me  couple months ago. I try and make this shake as often as possible. Amaey is not a fan of it so it makes it a little hard to make it everyday. However, everyone in the family drinks it now and that is a really good thing. Amaey watches everyone gulp it down so he cannot really complain.

Recipe makes 2 full glasses of Power Green Shake

Handful of Raw Spinach leaves with its stems cut off

Half a handful (a cat’s mouthful) of Fresh Wheatgrass

One Fuji Apple cored and sliced (leave skin on)

One Cup of Filtered Water

Quarter Cup of Fresh Apple Juice

One full scoop (2 tablespoons) of Vanilla flavored Whey Protein Powder (with no

dairy or sugar)

One Tablespoon of Greens Powder (with MSM)

Half an Avocado

Put the above ingredients in a Blender and liquefy it. The more liquefied the better. I sieve half of the shake so that it goes down Amaey's throat easy. He tends to gag easily. Sometimes I also add more apple juice for him.

Pooja's juice

A mom contacted my via one of the blogs. Her daughter has ALL as well.

She sent me this recipe for a fresh juice-

- carrots

- brocolli

- spinach

- apple

- orange

- fresh turmeric

- kiwi

- celery

- red grapes

Add nothing to the juice, just all the fruits and veggies.

I think this sounds wonderful. Turmeric is a natural antiseptic so I like that. I will definitely add it to our daily regimen.

Day 3 in the hospital

Day 1 goes fast because we check-in and we are fresh. He can still move around since he is not hooked up with an ivy right away. For the first 6 hours he just gets hydration and after that is over they start his chemo.

Day 2 is relatively fun. Chemo is still going through the body. It hasn't suppressed his appetite just yet. The Wii is rolled into the room, there are TV shows to catch-up on. Games to play.

Day 3, is another story. He starts asking to go home. When are we leaving. What are we doing today. I have done everything. I'm bored. He is getting a bit stir crazy. He also slows down by day 3. The chemo has made it's way through the entire body, his appetite is diminishing.

Well, we had a fun time today- 

- Amaey finished up Kumon first so that he could play the entire day

- Rita picked-up Arjun from school and came over with her kids and yummy lunch

- Sid, Arjun, and Amaey played Wii for a while after eating lunch. It was hard for them to leave

- Arjun made some wonderful creations with Legos

- After all that excitement a nap was overdue. 

- We played perfection and got greedy and beat the timer by playing for 30sec and 20 sec instead of 60 sec 

It was a fun day after all.

Hospital week

This is Amaey's hospital week. 

This is the first hospital stay where we do not have any family back-up. My sister flew in for the first stay. My parents flew-in for the next 3 stays. This week Arjun is in camp only until noon so I was scrambling to find a way to balance Arjun's life while running to the hospital to admit Amaey and get him started on his chemo.

We were trying to prepone his hospital stay so that he is free on his b'day which is next week. Thus the last minute scramble of events.

So far the hospital stay is smooth. Amaey and I made bookmarks yesterday. Today we will do some foam art. And play blokus and math go fish. I'm trying to find 2 art activities to intersperse with his Wii, TV, kumon, and computer time.  

This time around he is at a different hospital a little farther south so his friends cannot come and visit him either. However today we have a surprise planned for him. After I pick-up Arjun from camp we will go to CPK and get Amaey his favorite food and take it to the hospital. We will all eat at the hospital and Arjun will get to spend time with Amaey which should be fun.

Amaey's new treatment plan

The treatment plan with Amaey's relapse is pretty intense.

He has to undergo chemo in the hospital so every 3 weeks he is admitted in the hospital for 3-5 days. He also underwent 12 consecutive days of radiation.

He has 1 more round of hospital stay for this round. Then for the next 4 weeks he is off the hook. He will get his chemo as outpatient. But starting end of September he will undergo an intense phase of treatment with hospital stays again for 6 cycles which will take us until March of 2010. 

This is all truly unconceivable. 

We are taking each day at a time. It is really hard to think of after the treatment at this point. We are scared to think about that. A relapse can shake the ground you are standing on. All those positive beliefs, the silver lining... everything evaporates in thin air.

Waiting room

You are sitting, waiting, in a big waiting room

waiting for them to call your child in

Or, waiting for your child to be out of a procedure

You look around at shuffling faces, lost in their thoughts

Some sitting uncomfortably, fidgeting with their iPhones, getting up everytime a staff looks at them

I want to go and make a conversation

But what do I say?

What do I ask?

What can I offer in terms of solace?

What do I share from my experience?

This is one socially awkward place where familiarity doesn't pay, experience doesn't bode well, words of encouragement and hope feel pretentious

How do I strike a conversation?

Do I want to let them know that I have been there and done that just to find out that their pain is greater than mine?

Do I really want to know?

Do they really want to hear what I have to say?

I think I will just stay put, and let them figure it out themselves.

At the clinic

A child walks in -

hunched up, dragging her feet.

Parent follows, overburdened with bags.

A pillar of strength, both- in their own right,

join the families, waiting, waiting for their turn

for their turn to join the elite group of strength & perseverance.

To add one more visit, 

one more poke, one more check-up,

to their long list of achievements.

They walk around the clinic, some like ninjas,

some on their wheelchairs, some wheeled in their radio flyers, 

some kicking & screaming and dragging their feet - 

mad at their caregivers, mad at their families,

mad at everything that lays eyes and hands on them.

A child walks in, sometimes it's an in and out, or a few hours. 

Sometimes it might take an entire day, or more.

January is gone and June is here

It's been 5 months since I have returned to the blog and I must say these were the busiest 5 months I have had in a long time. Busiest, life changing and heartbreaking.

After enjoying a month of cancer free Amaey we got the news we were really not hoping for... "a relapse". On March 23 Amaey had a relapse of ALL. We started treatment right away. Now he is on an intense 2 year plan. 3.5 + 2 = 5.5 years.