Last Night Home...

... and when I say home, I mean the Ronald McDonald House. Tomorrow at 11:00 am, we admit Bella to the hospital, and she will begin her treatment immediately. I met today with our social worker, Janet, who is AWESOME, as well as a representative from a volunteer group called Care Partners. They assign a volunteer to the family for the entire journey who is kind of at our disposal. Laundry needs doing? They're on it. Groceries? No problem. Hang out with the girls while I play soccer? Easy. Support, baby support. It's all about having enough support to counteract the immense increase in stress on the family, both individually, and collectively.

Ali's craft work while I met with Janet

Last, but not least, I met with Dr. Wagner today. He's the head researcher on this trial and quite the guru in curing incurable diseases. He is great. No ego whatsoever. We spent an hour going over all the risks and benefits of the trial for one last time to make sure we are clear about what we are getting ourselves and Bella into, and realistically what can we expect to get out the other side.

How to keep a 4 year old preoccupied...

His tone was more measured than in January regarding promise for the protocol being a possible cure. Today, her referred to it repeatedly as "A first step." That really wasn't that cool to hear the night before we're admitting our daughter, but, 6 months have passed and a lot has happened since then. The hard truth is that out of the 10 transplants that precede us (number 11 gets transplanted in three days, and we are number 12), 2 died, and 1 experienced graft failure, but miraculously grew his/her own white blood cells back. That isn't supposed to happen, so that patient is really lucky to be alive. That leaves 7 other patients, and their results range quite a bit in terms of reduced acuity of the disease. So, when you are on the front lines of a new treatment, anything's possible. We accept this and are frankly grateful that Bella is only 12 months old and participating in this rather than 12 years old. We do know that for the majority of the 7, there has been improvement in their skin. How much ranges the entire gamut.

The master artist at work in her shop...

Let me try to break down succinctly if I can what is going to happen. Here's the deal: Bella is going to receive 8 days of intense chemotherapy to effectively clear out her own bone marrow, and completely eradicate her body of any immune system whatsoever. Then, she'll have a day off, and following that day off, the docs will pull bone marrow out of Ali's hip bones, and through a simple blood transfusion, give it to Bella. Now, the idea is that Ali's marrow will start producing stem cells that will turn into new blood cells, and a new healthy immune system. But more than this, the stem cells go to the skin, where the area of injury lies, and these stem cells start to generate new skin cells as well as blood cells. This is where this trial is the first of its kind. Normally, BMT is done for cancers of the blood, where the injury is in the blood and marrow. Not with Epidermolysis Bullosa. The stem cells somehow "know" that the skin is where they are needed so they home in on the wounds and generate healing previously never seen in the patients.

So, this means that all the areas of injury on Bella's body currently will potentially get an infusion of healthy new skin so that these areas no longer blister and wound as easily in the future. Here's where it gets interesting: What about the areas that have no wounds? Well, they aren't included in the equation. Somehow, the trauma sites send out a signal calling for back-up, so to speak, but the uninjured areas have no reason to send that signal (yet) so the stem cells don't go. However, once a site injures for the first time (anytime after transplant), the stem cells will then get in gear and head to that site to increase healing.

We brainstormed about several different subtleties about this disease, and during the conversation, what struck me was that Dr. Wagner is so far down in the trench... literally into the micoscope, with this particular protocol, that he hasn't yet delved into other more global questions about EB that surface when you theorize about what is next AFTER this. At one point, I suggested what I see as a future evolution in treatment, and he looked at me point blank and said, "I never thought of that!" That was fun. Brainstorming with Dr. John Wagner. Sweet.

How to make sure your kid doesn't take a header off the bed while you pee...

So, tomorrow begins the year-long walk down a very dark tunnel to emerge out the other side with a brighter future for Bella. I say year-long, because realistically that is how long it will take her immune system to be back on line firing on its own cylinders. Until then, we walk a dangerous road, hoping to avoid graft failure (Bella's blood attacks Ali's blood), Graft verus Host Disease (Ali's blood attacks Bella's), and infections as best we can.

This is where that time-honored struggle of control kicks in again. How to do everything possible, fight every battle, take every necessary step, and yet KNOW that it is totally OUT of our control while we weigh decisions that APPEAR to demonstrate that we ARE in control... what a conundrum. I like the phrase, "God is in the results business." We are in the process business. If we just do the best we know how, then turn it over to God, it's really the only way to manage any sanity throughout this. This is when I am grateful for my Faith. See, my faith is of my own volition. It is not anyone else's faith. Others may believe similar things I do, but at the end of the day, I CHOOSE to have faith. No one gives it to me, and no one can force it upon me. Consequently, no one can take it away from me either. It is literally my own creation, and since it is such, I create a faith that empowers me, strengthens me, inspires me, motivates me to get out of bed and face my terrifying fears head on. Without this asset, I wouldn't have the ability to get out of bed in the morning. The fear I am experiencing going into tomorrow is far beyond anything I have experienced in my life.

So, what do I have faith in? What do I believe?

I believe Ang's and my love for each other deepens every day we walk through this together.

I believe that Ali's character deepens every day she is Bella's big sister.

I believe that Bella knows exactly why she is here. She just smiles blissfully at us while we labor over her bandage changes as if to say, "ah, yes, this is why I chose YOU... because I KNEW you would do a good job with me."

I believe that I will be pushed past what I thought I was capable of and thus know myself as enhanced, increased, and upgraded from my previous image of my self.

I believe that Bella will inspire many, many more people, and that this was her plan all along.

I believe that God has the answers, and I believe that I ask him pretty good questions.

I believe that one day, Bella will look back on all this and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

What do you believe in?

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)

We're Back Home!

Well, we are back home from snowy, cold Minneapolis. We had a BLAST! First off, after you've lived in extreme temperatures ( like Phoenix ), extreme cold isn't any different than extreme hot. You know as you are walking out the door that you are about to be slapped with a temperature your body won't like and can't tolerate for very long without being properly prepared. The nice thing about the cold is you can bundle up. In the desert, you can't "bundle down" to cool off, you just dehydrate and burn to a crisp. However, in the desert, you don't have to shovel heat, either.

okay, enough about the weather.

On to... the GOOD STUFF...

We met with the good Doctor John Wagner. Here is his title off his business card:

Director, Pediatric Hematology/Oncology/ Blood and Marrow Transplantation

Scientific Director of Clinical Research, Blood and

Marrow Transplantation and Stem Cell Institute

The University of Minnesota has been doing Bone Marrow Transplants (BMT) since the sixties. They are the leader in the field, and he's the head hancho. His Curriculum Vitae is quite impressive, yet, he doesn't have the ego that you would expect. He's a researcher, and a teacher. So, when he explained what he is accomplishing in this clinical trial, I could see the wheels spinning in his head. He has a child-like passion for what he does. What does he do? In his words, "I cure incurable diseases."

That rocks.

So, we spent 2 hours together where he presented his results up to date, then answered all our questions. I had two pages of questions for him, but admittedly, when it came time for Q&A, he had already answered most of my questions in his presentation.

We talked about so much, it's honestly hard to recall specifics. Also, I can't talk about the results of the research as it is currently being peer reviewed for possible publication. What I can say is that we feel extremely confident in him, and in the U of M staff. He has broken into uncharted territory with his research. Don't go around using the word "cure" as it would not be appropriate at all, but you can say that his results have never been done before with an EB patient.

We told him we were going to Columbia U. to discuss their "reduced intensity" BMT clinical trial as well. He gave us a few questions to ask and shared his honest thoughts about their multi-site trial that has just gotten rolling. Columbia will get their moment in court to "sell" us on why their trial is better, but Dr. Wagner is really the guy they are trying to imitate. He knows more about BMT for EB than anyone on the planet, so they have their work cut out for them to convince us to go to NYC instead of MN. Having said that, we're adamant about going and doing our due diligence. Leave no stone unturned.

Metaphorically, I wish there was another way to rebuild the engine without having to strip it down so far. However, when Dr. Wagner explained that they have successfully done BMT on FETUSES IN THE WOMB because you can be BORN with cancer, I realized that it's simply a point on a line... a line of treatment where researchers are looking for new, less invasive ways to treat these diseases, but have yet to make the breakthrough that will ultimately leave this treatment in the history books. So many other breakthroughs HAVE occurred in so many areas, it is simply a matter of time. However, here we are NOW, and not 5, 10, or 20 years from now. Lucky for us we ARE here now, not 5, 10, 20 years ago, when there was NO chance for an RDEB kid to have a shot at living a "normal" life.

The trip was especially fun because we got to have dinner with one of my childhood friends, Logan Spector, who is a pediatric epidemiologist at U of M. He's been there for almost 10 years now and knows and works with Dr. Wagner. He invited us to his home and we met his wonderful wife and two children. We also met Lonni Mooreland, who is the mom of patient #2 of the trial. Unfortunately, little Sara passed away due to complications from a weak heart; a condition she had since shortly after birth. She and her husband, Jay, are the ones who have started PUCK, a charity to raise money for Dr. Wagner. www.puckfund.org. Check it out. We will be partnering with PUCK with the release of Bella's book in the very near future. Anyhow, It was nice to connect Lonni and Logan since they both work with Dr. Wagner. Also, Lonni and Jay have moved to MN recently, so it's always nice to know someone new in town. The most tender moment of the night was when Lonni was leaving.

She said, "Thank you for inviting me, Tim. I was surprised you even wanted to meet me."

It dawned on me that she felt that we wouldn't want to meet her since her daughter died in the same study we are considering our daughter for. Somehow, it might scare us or remind us of the danger of the study. What I am reminded of is the sad fact that ANOTHER EB child passed away last week, bringing the total to 4 since December 1st. This disease claims its patients in far more ways than through experiments to find a cure.

I couldn't believe what Lonni said; that's the last thing I would think. Thanks to working on the Grief and Loss Retreat with my colleague Mauro and my Mom, I was able to quickly share with her how tough the grieving process is in our "afraid-of-death" culture. I was able to validate her experience and reinforce that the insane feelings she is having are in fact normal. It is our "feel-good-all-the-time-at-all-costs" culture that is totally insane. We are so completely cut off from the experience of death that we don't have a clue how to handle it.

She just looked at me, a little incredulously, as if to say, "You actually GET IT." Then, she said, "Thank you, I feel like I had some therapy tonight!"

By the way, U of M mascot is called "The Gopher." Wanna know why? Because just about the entire campus is connected by above ground skyways and underground tunnels. The farthest we walked outside the whole time was from the car to Logan's front door. No lie. Applebee's delivered breakfast to our door each morning. Starbucks was located in the lobby, and the hotel was connected to the medical center. Add Valet parking, and we hardly felt the sting of the cold. I did leave my Starbucks in the car Wednesday night by accident and here's what it looked like the next morning...

Ice coffee, anyone?

Anyhow. We feel great about U of M. If this is our path, it will probably happen this spring/summer. We don't want to wait. EB is too dangerous. Also, the younger the patient, the better the chances. This is our year! We know there will be much in store for us, but we genuinely had a good feeling up there in Minneapolis; a feeling that said, "We can do this."

Thanks for being there with us. We felt you.

Thanks to Grandma and Grandpa for watching Ali and Lucy as well as for donating their miles for plane tickets.

Thank you to Aunt Marie and Uncle Tom for their INCREDIBLE contribution.

Thanks to our friends at Harbor Christian Church for their generous contributions as well.

Thank you, God, for delivering us to and from MN right in between nasty storms. Thank you for Dr. Wagner, and thank you in advance for Betty Ann, the financial counselor at U of M, who will be getting full inpatient and outpatient approval for us from our new insurance provider (we pray!)

Friends, Family, Faith.

Always remember the Three F's. We are so blessed to be lifted up by all three simultaneously. That is not always the case in life. You are blessed to remember to lean on any one at a time, but three, we are very blessed, indeed!

God Bless You All,

Good night.