Day 19

Saturday, June 23, 2012

Everyone passes the time differently while in the hospital.  One mom on our hall eats a Hungry Man beef pot pie every hour.  Some folks read or watch movies.  Others go to the gym across the street.  I research the disease, talk to the nurses, and blog (and procrastinate writing thank you notes).  Matt reads every article our doctors have ever written (and then asks them questions about them), works from the window bench (we gotta pay the mortgage somehow), and he spends a lot of time playing on the Ipad.

I am not sure what people did before these little portable devices were available to provide distractions for parents and of course patients.  Over the last week, while Ari was at the "nadir" of his treatment (tired/grumpy/in bed all day), the Ipad was a one stop shop for movies, games, and arts and crafts.  When he would refuse to do anything else, Ari would always watch music videos on the small screen. 

And Matt has been diligent when it comes to finding new and exciting apps to keep him and Ari amused.  Since Matt and I share an Apple ID, every new app appears on my Iphone.  In the past week, he's added a bunch of fun stuff for Ari - like Zoo animals, Magic piano, and Xylophone.  And he's downloaded a few cancer specific apps - like D-Oncology and LMT Hem.  And then a bunch of stuff for himself...Air Hockey, Hangman, F18 Landing... and... Atomic Fart, Fart Cushion, and Hide the Fart. 

For blogging research purposes, I experimented with these 3 applications.  Fart Cushion was my fave.  The other two fell flatulent.

(Matt is definitely my soul mate.)
Daily update:

Counts are still on the up and up.  Blast count this morning remained at zero, and Ari's white blood cell and ANC count are slowly increasing as is to be expected when his body begins to make good cells again. (Yay)

And Ari must be feeling better and a little more feisty since he yanked his feeding tube out this morning.  Oops.  They will replace it on Monday during his next (and hopefully last) lumbar puncture (well, last during this phase...but they continue for the next 2 years. bah humbug), but now that he knows how to take it out, I don't know how he will keep it in.  That said, over the last two days, he did eat 4 avocados, 2 slices of Upper Crust pizza, a bunch of spoonfuls of hummus, a bag of bamba, two cups of spaghettio's, a bunch of pretzel rods, two containers of chop suey, and some other random nibbles.  Oh, and about 60 ounces of whole milk.  He gained about a pound since yesterday.  Here's hoping his cellulite returns soon!  (It's not fair if I'm the only one with it in the family.) 

We've had an eventful 24 hours (unfortunately) due to a little mishap with a blood transfusion (long story) and a scare with a decreased heart rate (which meant a visit from cardiologists at 2:30am) but everything turned out fine and the doctors were just doing due diligence to ensure Ari was healthy (umm you know what I mean).

I've received a few questions about remission and specifically, why Ari needs treatment if he is in remission (fingers crossed 2 weeks from now).  The answer is that leukemia is a cancer of the blood, not an organ, and the cells grows ridiculously fast.  The docs can almost guarantee there will be cancer cells hiding and if they don't do the 2 year protocol, the cancer will come back very quickly.

Ok, wanna see something cool?  This is Ari's chest x-ray from Monday June 4th compared to Monday June 18 (18th on the left).  I'm no radiologist, but what you're looking at is one perfectly beautiful chest (on the left...the thing that looks like a boob is his heart...and the other fuzz is normal) and one huge cancerous mass and a bunch of fluid in the pic on the right.  2 weeks!  Crazy...


Phyllis Sommer June 24, 2012 at 12:10 AM  

There are cancer APPs!? I'm clearly not doing enough research. Sending hugs across the miles...

Liam Green June 20, 2023 at 3:06 PM  

Thanks for wwriting this

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