Days 33-35

Monday, July 9, 2012

A note from Ari:

Weekends at the hospital are so boring.  There aren't many doctors roaming the halls, the activities aren't nearly as fun as on weekdays, and most of the other kids aren't here (well, the kids on my floor are always here).  I complained to my parents on Saturday morning and begged them to arrange something fun to make the time pass quickly.  And guess what?  Because they're the coolest folks in the world, they ordered trucks and dirt and diggers and workmen and even a fire engine to entertain me all weekend long!  (And I thought everything my mom ordered was from Amazon.)

A few photos from Saturday and Sunday:

Here are some workmen digging up the road and making huge piles of dirt.  I'm trying to feed them pretzels but it wasn't time for their break:

They made a gigantic hole and filled it with dirt and cement:

Then the fire department came because one of the workmen caused a little leak.  And they let me drive the firetruck!

Then the leak created a huge puddle so I jumped in it over and over and then got so excited I put my hands and tush in it (Mom didn't get a picture because she was too worried about my IV line getting wet so she rushed in and made me get out...what a buzzkill).

So as you can see, the weekend was awesome.  (Plus we had a bunch of fun visitors and good food!)  But I need you to make me a promise...please don't tell your friends about my little adventure or else my parents will get in trouble.  If anyone asks, we were in the hospital garden the whole time, ok?

Love, Ari
3 day update:

Please don't be mad at me, but I kept a little news from you at the end of last week.  As we were patiently waiting for Ari's blood counts to rise to normal numbers, our doctors decided we should test Ari's bone marrow again to see if the cancer was growing.  As you may remember from last week, the last biopsy was clear (there's a bit more to under the microscope, they couldn't see any cancer, but when they performed a FISH test, they could detect very teeny tiny residual amounts of cancer cells, which worried us because they weren't starting phase 2 of treatment right away and we would have to test again to see if these little bits became bigger bits.) 

So the test was scheduled for this morning.  Over the last week, Ari's counts did nothing dramatic.  We were so nervous and so anxious that I just couldn't have everyone else nervous and anxious at the same time.  But, we heard late this afternoon that they once again saw no cancer under the microscope, and those teeny tiny bits became even teenier and tinier and are barely even there.  The docs can make no promises, but we feel pretty good with this news.  And again, these are just the preliminary results.

However, we need Ari's counts to go up!  If his blood counts were at normal levels now, he would be in "remission" and we could move on with treatment.  Instead, we just wait and wait (and my armpits sweat) and wait.  If the final bone marrow results confirm today's findings, they will start Ari on a drug that boosts production of cells.  They don't know the exact reasons Ari's counts aren't yet up, but they think it's a combination of the 2 infections, the multiple spinal taps, and Ari's marrow acting a little stubborn (this trait runs in the family).  They also assured us that whether it takes 4 weeks or 6 weeks to achieve remission, it has no effect on prognosis.  We just gotta get there.

Last night, we all did the bone marrow dance.  And it worked.  So, for the next few nights, I'm asking all of you to do the white blood cell dance.  Just bop up and down and do a little shimmy for Ari.  He likes when there's a lot of tushie shaking involved. 

Feel free to send videos...


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