Oh The Places We've Been

Last night, Dr. Lara called our room and gave Tim an offer we just could not refuse. He was going to be administering Steve-O's PETRIFIED little girl a double dose of stem cells on Thursday so she would not have to return Friday. Were we interested in the same deal? I could barely make out the conversation and still I was signing an emphatic HELL YEAH!!!!!! from bed.

Not wanting to jump the gun, Tim asked if he and I could discuss the proposal first and give ICM an answer in the morning. Dr. L agreed that would be okay. Right away I informed Tim that my opinion did not count because my mind was clouded by the idea that if we finished the treatment on Thursday morning we could enter the pool a whole 24 hours earlier.

Doubling up on the regular stem cell dosage has already been done with some patients, and since J.R. had no adverse reaction to the first two injections, Dr. Lara thought it would be perfectly fine to combine days 3 & 4's doses. Tim and I feel the entire process is a complete leap of faith anyway, so we said "what the heck, let's do it." We were over the moon.

Besides J.R. having a bit of difficulty sitting DOUBLE the amount of time, the treatment went well. To be honest even though the injections couldn't possibly be causing J.R. any pain, I was done seeing him become upset. And after all was said and done J.R. high-fived the nurse, Steve-O, Steve-O's mom, and confidently walked right outside into the van telling everyone in his path that "it did not hurt"! The rest of the day's events involved tons of sunscreen, chlorine, and cokes.

J.R.'s favorite book (this month) is Dr. Seuss' Oh The Places You'll Go. Most of the time he reads at night with his dad, so I had really only mindlessly read him a few pages here and there. Ironically last night J.R. asked mommy to read. I had to hold back tears at its poignancy, encountered especially in these lines:

You can get so confused
that you'll start in to race
down long wiggle roads at a break-necking pace
and grind on for miles across weirdish wild space
headed, I fear, toward a most useless place.

The Waiting Place...

Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants,
or a wig with curls, or Another Chance.
Everyone is just waiting.

Parents who seek stem cell treatment say the hardest part is the waiting. Waiting for something to click. We hear it can be downright maddening, yet J.R.'s affection for this book has brought us some peace.

J.R. is always saying "NO! That's not for you," and now we know why. We thought he was just reminding himself out loud to not touch or do certain things. He's actually reciting the words that come next in the rhyme. They are:

NO!
That's not for you!
Somehow you'll escape
all that waiting and staying
You'll find the bright places
where Boom Bands are playing...

We can only pray that waiting will NOT be for him, and that he will be one of the lucky ones who will, according to Dr. Seuss, "succeed...98 and 3/4 percent guaranteed."

Tim and I have tried a lot of different types of interventions with J.R. as any parents would. Some will say that people like Dr. Lara and his staff have no more business practicing what they do than Dr. Seuss. Our solace lies in these lines (which just so happen to be J.R.'s favorite):

...be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!