Friday, July 31, 2009

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
- 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.

Thursday, July 30, 2009

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.

Sunday, July 26, 2009

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.

Thursday, July 23, 2009

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.

Sunday, July 19, 2009

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.