Time To Get Ready

(Go watch new video "Bella Bouncing outta her Bouncy seat" for a laugh before you start reading)

I had one of those rare, authentic, unplanned conversations this morning that I'm going to start with to get this update going.

I visited a wonderful store/studio today called Soul At Home (www.soulathome.com) on the way back from my second trip to daycare. I say second, because I had to return with the forgotten pieces of Bella's feeding apperati. We were rushing to get out, Bella was having a meltdown... I'm sure all you parents can relate. In fact, WHEN you comment (wink wink) on this post, share THE ITEM you once forgot that first comes to mind. could have been yesterday, could have been in 1975. It'll make us all feel better. Just say the name of the item, not the whole story why; it'll be MUCH funnier that way!

Anyway, I've been driving past this place for years, and I always thought it probably was a cool furniture/knick-knack store that was too pricey for me to walk into.

Recently, my colleague Chelsea Davis told me about this great facility in Tustin that provides yoga, massage, concerts... all kinds of cool events. Its name? Soul at Home.

?

I thought is was a furniture store!

So, I needed to go to CVS to pick Ali up some toothpaste, so I pulled in just for fun to check it out. I left an hour later with 3 business cards of various staff, healers, and program directors that I ended meeting and connecting with while inside.

The place was amazing. If they sold coffee and had wi-fi, I'd make it my new home-office. (They're probably cool precisely because they don't have wi-fi, and give away healthy tea in real cups for you to enjoy.)

Anyhow, while there a couple of things surfaced inside some really profound and powerful conversations.

To summarize, we have been consciously "fattening up" Bella to prepare her for transplant and to prepare her body in case of infection or absorption issues. We know we need to stay ahead on the calories with EB, and we've done a good job with that. What was revealed to me today was how much time I spent building up Bella with music pre and postnatally, and what a miraculous difference that made at that crucial time, AND how I once again have the opportunity to build her mind and spirit as well before the journey through transplantation.

Not only that, but I have the opportunity to build my own body, mind, and spirit as well as mommy's and Ali's.

We will all be walking through the valley of BMT together, each with our own view, but all on the same path.

Check this out:

Our targeted landing date in MN currently is June 10.

Between travel, settling in, work-up tests/procedures, the clinical trial itself, and heading home, we're gonna be looking at around 107-114 days in MN.

Distance to June 10?

113 days.

Weeks we prepared for Bella's arrival? 39

Weeks she's been with us? 38

We are standing on the side of a mathematical coin right now.

I remember, week in and week out, praying and thanking God for a healthy baby. I recently had a friend confide in me that he was wounded spiritually for a few months recently when he realized after all his prayers, Bella wasn't recovering from this condition. It would be easy for me to slip in that same puddle after all the nights I prayed for that baby while she was still in the womb. In fact, I felt guilty at birth that I must not have prayed enough, otherwise why else would God do this, and why else wouldn't He or She answer my prayers?

Well, we prepared in every way we new how for Bella's arrival, and when she did, EVERY MINUTE of that preparation was called into action to handle the left turn we experienced at childbirth. THANK GOD we DID that preparation. Those prayers weren't to strengthen God, or Bella, they were to strengthen ME. My "spiritual muscles" were primed and IN SHAPE when Bella arrived. Good thing, too! I had to do some HEAVY LIFTING to sort out this situation as it was HURTLING itself at us. (Does life every really come at you any other way?) Now, do we really have any idea how this BMT is going to go? Of course not. We can forecast and predict, but folks, two kids died in this procedure. Obviously no predicted that. We understand the risk.

Good thing we prepared for Bella's birth.

Now it's time to prepare for her re-birth.

The clock is ticking.

Say with me:

With each breath I take,

I nurture myself

with each breath I give,

I nurture my world around me.

It's time to get ready.

P.S. Bella rules.

P.P.S. Ali Rules.

P.P.P.S. Ang RULES.

P.P.P.P.S. YOU ALL RULE!

Ali rockin' the face paint at Disneyland yesterday!

We're going to Minnesota

Hello!

It's official. We're going to do the stem cell bone marrow transplant at University of Minnesota this summer. We are looking at a tentative arrival date up there of June 10. We are excited, and don't want to even wait that long, but Bella's 1st birthday is May 27, and we want to celebrate it with our friends, family, and faith community here in Orange County that have done so much to help Bella reach this milestone (God willing).

It wasn't a hard decision to make, really. At first, there were things about both that we liked, but as the days went on, and we started sharing stories with other parents who also visited both sites, we realized U of M really have a grip on this and Columbia just doesn't yet. With time, they may, and we wish them all the luck in the world. We NEED multiple research teams looking at EB from as many different angles as possible to produce the major breakthroughs required to give so many hope.

There are three areas I like to check in with when making a decision: my head, my heart, and my gut.

My head told me that to use the phrase "reduced intensity" in the title of a research experiment is extremely incongruent with research language. It is marketing language. It implies a comparison... to what? To Dr. Wagner. Bad taste in my book. I sought the counsel of the medical director at University of California Irvine Cancer Center. I made an excel spreadsheet with the drugs and their dosages side by side. Columbia is using 6 drugs to U of M's 3. They are using more Busulfan than U of M. The medical director took one look at the sheet and said, "Based on the drugs and their dosages, I'd say they are both pretty intense."

My heart felt connected to the staff in MN... person to person. I felt more than respected as an equal, there was a level of respect given that exceeded what was expected in return in MN. In NY, The condescending tone of the day by 2 of the 4 (the two "real" doctors...) left me feeling less than, belittled, even.

My gut said that all the "coincidental" Providence stories to date... I mean ALL of them POINTED to U of M. Given that Ang's and my families are FROM New York City, you'd think there'd be some connection there. Nope. Not one. The pizza family really sealed the deal for my gut. There we were in Times freakin' Square and we're still crossing paths with MN.

Add to the equation the call I got from our insurance saying that U of M is a Top Tier Transplant Center in their book and Columbia isn't... hmmm. In addition, our insurance is going to cover airfare, lodging ($1,500 a month!), rental cars, and more because of their blue chip status. That's gonna add up over 5 months to quite a big chunk of change!

Last but not least, the U of M experiment is the only one approved by the FDA. Now don't get me wrong here. Usually, I trust the FDA as far as I can throw them, but how come Columbia is neither a Center of Distinction for BC/BS or FDA approved?

Finally I have to say this: I have heard a lot of complaining about why Columbia is so hush hush about their two patients, and why are the two families so quiet. Folks, go easy on the families. Remember that in American society, there is no such thing as privacy anymore. It has evaporated. Just ask ANY athlete, celebrity, or politician. Basically, anyone in the public eye for any reason is expected to be fully transparent, and if they aren't, well they must be hiding something. There is a difference between secrecy and privacy. We have lost the right to our own privacy. Just because it isn't a popular choice for those families to remain private, it is still THEIR CHOICE, so please honor it in the same way you would want your rights to privacy honored.

In other news, Bella's Dedication at our church was Sunday. It was AWESOME. The feeling of support there is so powerful. I have never been a part of a more supportive congregation in my life. It's like we inherited 27 grandparents, 14 aunts and uncles, 10 cousins, and 6 siblings. It's been such a blessing to be a part of Harbor Christian Church in Newport Beach. Go HCC!

Good night, and be well,

Tim

The Return from NYC

Bundled up and ready for adventure!

Whew!

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."


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

Connected.
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.

Connected.
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
lorazepam

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."

Amen.




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

Off to NYC!

Well, we leave for NYC in the morning to go consult with Drs. Christiano and Chairo at Columbia University. They are conducting a "reduced intensity" bone marrow transplant multi-site study on the east coast. We are excited to find out the pros and cons. We've heard from Dr. Wagner, who we really liked, and now it's time to hear from "the others." These are all the real players, folks. Much research has been done into wound care, but only in the past 2 years has a global improvement in skin connection been attempted. We feel confident in our decision to go through transplant now, rather than wait till it's "perfect."

Other news:

Not much right now. Gotta get some sleep. Will tell you much more next issue on Monday of next week!

Bless you all!