Friday, February 5, 2010

The Return from NYC

Bundled up and ready for adventure!


We're back (again) from another exploratory trip to find a cure for Bella. This time, we were in New York City. Columbia University is hosting a "reduced intensity" Bone Marrow Transplant Clinical Trial. What exactly does that mean? Good question. That is the crux of the biscuit. We'll get to that.

Anyhow, Bella, Angelique, and I fly JetBlue from Long Beach to JFK on Tuesday. It was awesome! What service! They gave us each our own ROW in the back of the plane. We sat across the aisle from each other and enjoyed a total of 6 seats between the three of us!

It got even better as we went outside to get a cab, and what rolls up? A Toyota Sienna! That's what we drive! So I got to put Bella in her car seat just like how she rides around at home and there was plenty of room for all our stuff, and all our bodies! I had this vision of an old crown victoria or chevy caprice picking us up and us having to all squeeze into the back. Not so!

Then, we roll up to the Sheraton Manhattan just north of Times Square. The service was amazing! We went upstairs, got settled in, then headed out for a trip into Times Square and some Famous Ray's pizza.
Turns out, the nearest Ray's is one block away, and it's the SAME Ray's we went to back in '02 when we visited NY. We walk in, and there's a young couple with a young daughter with a similarly cute hat on as Bella's. So, being the shy one I am, I walk right up and start talking to them and complimenting the hat. The couple remarks, "Well we're not actually from here, we're from Minnesota..."

(All you who are experienced Providence readers already know where this is going...)

"Really?" I reply, "We were just in Minnesota at U of M last month for our daughter."

The mom looks down at the bandages on Bella's hands. (I can barely write this I'm so covered in goosebumps)

She says, "Oh, was she there for the skin study?"

I look at her, then the dad, and the dad says, "My wife is a teacher in U of M's Nursing School."

I say, "Do you know Dr. Wagner?"

She says, "Yeah, I know of him. In fact, I attended a lecture of his last week!"

Then, dad says, "We're here because I go to Sloan-Kettering (Cancer Center) for ongoing chemotherapy once a month."

I say, "Here's my card. I work in oncology using music therapy to increase the effectiveness of chemotherapy. I'll hook you up with lots of ways to take charge of your treatment and improve your own outcomes if you contact me."

Two young families.
A long way from home.
Grabbing pizza on a Tuesday night in TIMES SQAURE.

At first, by a couple of cute little hats their little girls are wearing.
Within minutes, by the very battles both families are facing.
Each suddenly finds themselves a resource for the other.

I ask you, are we not all connected as God's children?
If we but take a minute to look and see how.
We will always find it.

The Connection.

The two families... check out the hats!

(That was just day one.)

DAY 2: The Consultation

Up the subway to Columbia University.
Lost in the maze of hospital buildings.
Snow blankets the ground all around.
Already Derailed and Annoyed.

Daddy phoning in to Elana for directions into the office...

The Beacon: Elana, the clinical coordinator
Gets us back on track with a smile.
A left and another left into the room.
We're ready to get this going!

But first, an interruption.
"We need to draw some blood first" a nurse says
7 giant viles line the table
"This was not part of the plan" I say
"You can take it up with the Doctor" she says
She obviously doesn't work for JetBlue

1 stick of the needle
Tears and cries fill the room,
but no blood fills the viles.

A second stick in the other arm
more tears, more screams
but no more blood.

The 7 viles lay thirsty and empty,
waiting for their fresh sample
"That's ENOUGH!" we say.
They'll just have to lay and wait.

They enter
The posse
The entourage
The team
The ego

There are now 7 in the room
Four over there, three over here
divided, poised, and ready.
for consultation? or Confrontation?

I fire first. They didn't know what we know.
They didn't know THAT we know what we know.
They shift and squirm as I lay it all out.
U of M, Dr. Wagner, the families, the parents, the children
We know them all.

The tension builds as I continue to talk
Who now is being interviewed today?
Ah, not the Ringgolds.
Seems that wasn't their plan.

He attempts to impress us,
to establish " a connection."
It comes right out of a handbook
and lands flat on the floor

Then, she speaks.

The Source. Dr. Christiano.
She found it so long ago.
The EB gene. Hiding. Deceiving.
She was the first to crack the code.
The one we really came to see.

Unfortunately, not the one in charge.
Just the data collector, and informer of EB.
"Not a real Doctor" as she humbly offers.
Stunned by this, we turn to see the "real doctors"
smiling and nodding at we.

Conservative in approach
on paper and in the clinic
not interested in being first to cure
more interested in being last to offend
safe and secure
within a concrete fortress and palace
not willing to share
in the name of "good science."

Unfortunately, we're not mice in a lab
we're fellow humans with a heart
treated politely as the former in NY
Treated respectfully as the latter in MN

I put Dr. Chairo on the stand
and begin my cross exam
I fire from a long list
of questions with two intentions

1, gather information
to decide from and share
2, make the man uncomfortable
to see if he can
keep his story straight and polite
when the man across from him
is ready to fight

fight for my daughter
fight for her life
fight through the bullshit
that sits in plain sight.

A fine facility
A hospital room
that looks like a suite
fit for a honeymoon

but a wall of silence
about patient 1 and patient 2
not willing to say more than
day +20 and +80,
and they're both under 2

"We're pleased" with a smile
that says, "that's all I'm gonna say"
is the carrot he offers
hoping I'll just go away

Kind of hard to attract patients
for a non malignant disease
if your best strategy
is to push away with such ease.

Having vented all of that
the fact still remains
could their drug cocktail
be the safest to date?

After all, doesn't "reduce intensity"
sound good to YOUR ears?
but how can that be, when they use 6 drugs
to U of M's only 3?

Time to seek counsel
from a new friend of mine
as artists and healers
Our paths intertwine
He runs the Cancer Center
at UC Irvine

With a heart full of gold
a head full of knowledge
He sits with two recipes
only one will we follow

Please help me to learn
To decipher and say
just which of these cocktails
should Bella obey?

Which one is the key
to her skin growing back
which one will give life
without side effects?

Dr. Meyskens the poet,
the teacher, the man
translate if you please

and while you're at it
Alemtuzumab, too
Tacrolimus, Palifermin
Cyclophosphamide, Whew!

The riddle is set
my heart says it knows
my mind needs more answers
before letting go

and letting the brain of my spirit take hold
the place where my mind
is always quiet and peaceful
the place that says "Go north you gopher!"
Go heal that little girl

She has great work to do
She's already given so much
By just being her self
She's blessed us all such
that it's time to decide
what's best for her, not us
if it be New York City
we'll learn the subway and bus
it's all about her
not the doctor
not us.

I'll stand by his side
if that be the case
but don't think that this gets him
at her wedding a place
for he actually told us
one patient loved him so
that he got the next dance
after daddy let go

if that's not the worst
thing I've ever heard
a doctor say to me
at least it's absurd

Now, to make matters further
point straight to the north
we got the green light
from insurance to go forth!

One thing we should know
before making up our mind
is that Blue Cross Blue Shield
treats U of M as divine

The highest standing for BMT
a hospital can get
is the acronym BDCT
Are you tongue-twisted yet?

CU doesn't have it
as good as they are
it gets us free rooms,
free airplanes, free cars

It could all be a test
like a shiny bright hook
to lead us away
from the grittiest truth

that CU might have it
the key to the lock
their style might be lacking
but don't put too much stock

in the ego in the room
if its the one who does the job
that keeps your girl alive
do you care he's a slob?

Now slob might be rough,
I just liked that it rhymed
but seriously folks
for the seventeenth time

It's not about you it's not about me
it's not about Ali, grandma or Nanny
It's only about Bella and which plan does the trick
to give her her skin back so she can survive her own kick

For just Wednesday night
a new hole in her leg
while Ang even held her
she managed to peg

I could rant all the day
till the cows all come home
but really we want
to see this thing gone

For a fortnight or less
we'll talk, read, and pray
that God takes all roadblocks
clean out of our way

Only She knows what's best
for Her little girl
It's our job to listen
when our mind's a swirl

So with that I leave you
to take up with me
in quiet reflection
to see what will be

I offer a prayer,
I said long ago
a statement of hope
that the future may show:

"One day, Bella will be able to look back and say, "Yeah, when I was born I had this rare condition, but when they brought me home from the hospital, it went away."


(I think I read Ali too much Dr. Seuss)


  1. i loved this so much...
    bella is so lucky to have you as parents.
    this could be the children's version of her book!

  2. Great rap, Tim. Whew! I feel like I was right there with you the whole way! Amazing connection you made with the pizza family. Unreal, but even more than REAL. Thanks for the update. Bella is so blessed as are the rest of us ~ Love to you all

  3. Hi Tim & Angelique,
    This is another amazing summary of your beautiful journey! Thank you for sharing! Your strength has brought you to places and people whom you were meant to meet for so many reasons. Your lives are rich with love and prayers. Hugs!
    -Michael and Robin Setto

  4. Thanks for the update. I visit your website every day. May all EB kids find a cure God's speed, Ameen. Lots of Love to Bella.


  5. I laughed at your post...I had the same experience with my son after we visited columbia to find out about that same study. I unexpectedly was asked to draw blood...three sticks...only a drop of blood ...and lots of screaming...I more..we'll try again another time...we are set to visit minnesota shortly..we live in NY minnesota seems miles away..while columbia is in our back door..I don't understand the secrecy of the two transplant patients done. It is one of our main troubles there..why don't they share information with us??? I know the transplant subjects are not from the united states and the second one at least barely speaks english and we were told by the team that neither family wishes to share their story....????? I wonder how minnesota will compare!!?? thanks for sharing your journey with

  6. Beautiful entry Tim. Can't wait to hear you put it to music as well. Sending all my positive vibes your way to help with this important decision. You all have made fantastic decisions so far for Bella, you will make the best one for her, here too.

  7. What an amazing post. So creative, and heartfelt, and informative. I hate doctors who don't have good bedside manner. I wonder why they are so secretive about their treatment? That would make me uncomfortable. It's great news that U of M was approved. I hope you can make a decision and that Bella is on the road to NEW SKIN soon!

  8. In tears reading this amazing post. Yay, Bella! Yay, U of M! Yay!!!!

  9. Thank God Bella was born to the two of you. Future EB babies and parents will draw strength, comfort, and healing form your journey thus far. May God lead you down the right path for Bella's healing. Every Tuesday morning around 6:20am there is a group of about 25 guys praying for all of you.

  10. Man... I have a really hard time understanding this the way it's written. Sigh.

  11. Oh thank goodness Silvia I thought I was the only one!