The Date is Set

They are admitting Bella into the hospital for her stem cell transplant next Tuesday, June 22. They will start her immediately on an anti-seizure drug called keppra, then begin busulfan on Wednesday. One of the possible side effects of busulfan is seizures, so the keppra will be good and flowin' in her system already when the busulfan arrives.

Bella's transplant date is set for July 2nd.

I will go into greater detail as we roll through each day. Now we have a timeline. We can all start to focus our intentions and prayers into time.

We finished a barrage of tests and labs today. Ali was a CHAMP this morning. A steady combination of benedryl, lydocaine, Barbi DVD, and mommy kept Ali as relaxed as we needed her to finally get her labs done.

Bella was a champ through her CT scan, chest x-ray, and Echocardiagram as well! She is just so sweet. She is charming everyone that works with her.

Unfortunately, her Hickman Line is not working properly and has become a little bit of a pain in the ass, pardon my french. It is really difficult to draw blood from it. They can fluch liquids into it just fine, but pulling the good red stuff out... that's another matter. Seems that it is a pretty big line in a pretty small kid, so it is probably resting up against the wall of the vein.

However, the pouch that holds the line is AWESOME! you cannot see any of the line exposed when not in use. That makes my anxiety nice and LOW.

Bandage changes went really well today, except that we can't get the Hickman wet. So, back to sponge baths. Boooo! We brought her super cute inflatable tub and we got all of one use from it before it has been relegated to unfit for use. Waaahh! Love that little tub. Bella greatly prefers bath time these days over lying on her back time. Oh well. Life is change, life is change.

Ali starred in her first musical today! The kids at RMH had a 3 day drama camp that culminated in them putting on excerpts from "Annie." Oh man, it was CUTE! We were proud parents as we watched her first dramatic production! She does it at home almost every day, so why not in front of strangers?

Tomorrow, we (I) move (us) into our new suite! It is basically an apartment. There is a main living room that has a pullout couch and a glider, a dining area/table and small kitchenette. Then, the bed room has a built in desk, two queen sized beds and built in bunk beds with TONS of closet space and storage! I'll get some pics up once we're moved in.

We got our "Parent Handbook" on BMT today. Woof. It's a textbook. We got a lot of reading to do. Luckily, thanks to Marybeth Sheridan and Brett Kopelan, we have followed closely two of the recent BMT patients with Epidermolysis Bullosa over the internet, so we feel like we have a sense of what is to come. When they sat me down and explained the entire procedure today, I felt like most of it was review from reading it on the net. Now it is time to internalize it.

Onward we go! Thanks for being here with us. Please, keep the comments coming. Even just a "Hi, we're here with you." is really all we want to know. The biggest drawback of using a public site like this is that while we can track that over 200 people come to Bella's blog every week, we don't know who 99% of them are. That makes us sad, because it's the personal relationships through a few sentences that keep us going, and when we get 0-5 comments when 200 or more read the post, well, we just miss hearing from you, too! you just hear from me, now we'd like to hear from you! Let's see just how many people we can get to comment on one post. C'mon! Chime in! Hook us up!

Love and Gratitude.

The Sienna has landed... in Minnesota!

I see you!

I want THIS one!

Well, I have to tell ya, I just took the most beautiful little drive...

It was so beautiful, I just kept on goin'.

and goin', and goin' and goin'.

Through endless dirt, and rock, and grass, and mountain,

The highway unraveled in front of me.

Above it all,

God's smile washed over me

in the form of an unending sky

so beautiful; like his love, it was endless.

Everywhere I looked, there he was.

I was never alone.

I saw hardly a car for hours at a time,

And still, I was never alone.

I took lots of pictures of him,

He smiled for every one.

God can't ruin a picture!

The ones that weren't so good?

Had too much of man in them:

The glare from a newspaper stuffed in my bag,

the side-view mirror, or roadside fence;

all useful for manly things,

but useless in a portrait of God.

And yet, it was the strokes of man's brush on God's canvas that made for some of the most compelling images. The juxtaposition of small amidst LARGE... We take up such little space in reality. We are so small. Yet we dream, we love, we live like we are gods ourselves.

I drove by a 70's porsche that was alone in a field in Idaho. Grass grown up through it, around it, over it. I thought of the self importance its owner might have felt as he pulled off the lot for the first time in it, or when he or she drove it down "the main drag," or pulled up to work in it.

Where am I going with all this? No where.

The girls playing in their room together the day before I left.

It was simply a nice reminder that though we are entering perhaps the most stress-FULL experience of our lives here in Minneapolis, we are but one family of over a half a million families that have come to this very hospital for this very procedure. Now, true, we are only the 11th family at this hospital with this disease to go through this procedure, but spending 3 days in God's glory reminded me that while we narrow our focus - the lense of our camera - for these next 4-5 months to a single hospital bed, God is smiling overhead of Minneapolis, and overhead of Fargo, and Bismark, and Butte, and Idaho Falls, and Salt Lake City, and Mesquite, and Las Vegas, and Baker, and Barstow, and all the way back to Orange. I realized that no matter where I went, there he was smiling over me. That was very comforting, since we are heading into unkown waters. I just spent 3 days in unknown waters, and he never left me for a minute. I know where he'll be for the next 4-5 months.

(Lot of masculine gender above - no disrespect - that's just the way it fell out of my head)

I took a deep breath as I walked toward the entrance of the Ronald MacDonald House (hereby called RMH), like a freshman about to walk into his freshman dorm for the first time. I wasn't even through the front door when I saw McKensie and her mom, Missy standing in the foyer. Immediately, I felt at home. For those of you that don't know, McKensie is a 9 year old girl with epidermolysis bullosa. They leave tomorrow morning back to PA to rest up and recover from a long, grueling, double attempt at BMT. It was an honor to meet them before they left; we are a small tribe, us EB families, so it's nice to connect physically, if only for a day. McKensie is such a trooper. What a journey she's on. That girl and her mom and dad have strength like you don't even know is possible. I saw it in all their eyes tonight. Much love and respect to you, Grays!

There are TWO NEW videos up on youtube for your pleasure by the way. One is a photo montage of my journey here and the other is a new video montage of Bella's first year that we showed at her birthday party!

P.S. If you didn't know, DebRA is our FEATURED PARTNER for the month of June! If you have been procrastinating buying Bella's book, wait no longer! 50% of proceeds regardless of how many or few books we sell this month go straight to DebRA!

Also, if you HAVE read the book, THANK YOU! I have received a lot of positive feedback. Thank you very much. I have a favor to ask anyone who has read the book. Would you go onto the lulu.com page and leave a review? It'll only take you maybe 2-3 minutes, really! Just click on the book on the right and follow the instructions on their page. It's really easy, and you don't have to write a book of your own, short and sweet is good, too!

I will be posting on a daily basis from here on out, so stay tuned!

Many blessings,

Tim

This was just too adorable NOT to include!

Ronald McDonald House, Here we come!

Quite the little airline traveler, stole my seat AND my hat!

Well, we're back from another trip to MN.

This time, it was to scout out lodging for the rest of the family Bella's BMT this summer. We flew in Friday evening, looked at 5 different properties Sat, and flew out Sunday morning. Oh, and we even planned a dinner party at the Mooreland's (founders of PUCK) on Saturday night! WHEW! Ali hung at out grandma's and Bella, mommy, and daddy made the trip. This was Bella's 4th airplane trip in her first 10 months! She's pretty easy to handle, but she is SO BIG that we can't do the lap thing any more! Holy cow, you should have seen her stretched out while napping. Our arms nearly fell off from the weight alone! Never again.

We checked out all different shapes and sizes of living arrangements. We saw brand new lofts downtown, an extended stay Marriott, the RMH (Ronald McDonald House), and two apt. complexes in St. Anthony, the town adjacent to the University just to the north. Like anything, there were pros and cons to all of them. RMH, though made it on both of our top 2 finalist lists immediately, and then from there is was an easy pick.

What's funny is that neither of us at 9 am were thinking about RMH as an option. That changed the moment we parked in front of the house.

First of all, it is across the street from a quaint little park and walking distance to the hospital. This means, that when we have to go back and forth for tests after discharge, we won't need to ride a shuttle or public transportation, which is a good thing, since Bella's immune system will be next to nothing.

Then ,we walked in through the front door and Ann, the weekend manager greets us, takes one look at Bella, and says, "Now let me guess, EB." Then she proceeded to speak personally of her affinity for each other EB child that has stayed there during this clinical trial by name. No explaining to do here.

After brunch, we toured the house... I mean HOUSES. Technically, this RMH is 4 houses connected by one massive first floor. Yet, every inch is cozy and comfy feeling. This is the complete opposite of the DORM we stayed in in San Diego atop the parking garage for Bella's G-Tube insertion. Night and day, folks. We were amazed by how different (and better!) this RMH was compared to San Diego.

I could go on and on, but suffice to say that this property is like a mini Disneyland for Ali. Also, the kindercare Ali is going to go to is also within walking distance of the house! Ang is going to work from home 4 days a week, which means she can walk Ali to kindercare, walk back, and work from our special, giant BMT suite we'll be staying in, and she can cruise over to the hospital to bring me real food (are you reading this, Angelique? wink wink) for lunch, then walk over to pick up Ali, and have dinner prepared every night of the week with Brunch on the weekends as well. Aoh, and Ali gets movie night twice a week complete with free popcorn in their own in-house theater room! KILLER. Good stuff all around.

Bella knows she can always lean on her big sister...

We are really excited, and quite frankly, I am ready to pack the minivan today and go. We are waiting till June so Bella can have her first birthday here with so many of the friends and family and faith community that helped her reach this milestone. Frankly, most first birthdays are for the parents for surviving the first year, but this one truly is for Bella. She's the one who's done the surviving. She is as strong as an ox and while she deals with blisters and teething, she is still sweet as a peach...

...until bed time... she reallllllly doesn't like the sleep thing. Someone actually called the front desk to complain at the hotel because she was WAILING at midnight for so long, that a neighbor thought she had been abandoned. No, really. The girl at the front desk said when I answered the phone, "Oh. there IS someone there with the baby. Okay, thank you." and hung up. Really. Not joking.

Get the coffee in the pot! Daddy's a grumpy bear without it!

We also want to close by saying thanks to the following people: Grandma and Grandpa, Joe Polish, Paul Ringgold, Jackie Gardella, members of the Disciple's Women's Group at church, and the anonymous donor from Harbor Christian Church. These people all donated cash or frequent flyer/rewards miles/friends & family rates to help us on our two trips to MN and one to NYC. Each trip we took, someone or ones stepped up and volunteered to help us along the way. There have been COUNTLESS examples of this generosity these past 10 months, but we just wanted to publicly acknowledge that these trips were made possible through the love and generosity of these folks. It really does take a village to raise a special needs child, and thank GOD, we have that village. What's really cool is that this village is stretched across the map, and thanks to the internet and email, we can be connected and reach out into each others' lives to lend a hand when a hand is needed. Thanks again. We promise to pay it forward.

Last but not least, if this series of shots doesn't melt your heart, nothing will...

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 On Our Way To Minneapolis!

Daddy and Bella at Uncle Steve and Aunt Dina's

Pack your parka, baby! Oh - wait - we don't own parkas living in Southern California!

We are packed and hanging out at grandma's house, ready to hop on a plane first thing in the morning. We head off to Minneapolis by way of Chicago for a consultation with Dr. Wagner at the University of Minnesota Bone Marrow Transplant Center. Check out this Providence Story of the day...

We had been planning on staying at the Ronald MacDonald House in Minneapolis, but the way the RMH works is you get your name on a list, then call the day before to see if there is room. Well, I called today and they informed me there was no room at the inn. So, I remembered that in one particular email from U of M, there was a link for accommodations. I called the phone number, and a kindly gentlemen gave me the info on two hotels that give a discount for patients and their families. One is the Radisson University Hotel. Turns out the Radisson is closer to the building we will be going in on campus than RMH. RMH is a 6 block walk, while the Radisson is diagonally across the intersection from the building we'll be in! Then, while on the phone with my childhood friend Logan (who works at the medical center), he explained that there is a tunnel that connects the two buildings! We don't have to even go outside to go to the Doctor appointment now that there is no room at RMH!!! Grandma and grandpa informed us today that the temperature in Minneapolis today was -9 degrees. 6 blocks in -9? NO THANK YOU!!!! Boy I am GRATEFUL there was no room at Ronald MacDonald!

For a review, we are going to consult with Dr. Wagner regarding a clinical trial at U of M for kids with RDEB. They are using stem cells via bone marrow transplant to grow healthy skin on the patient. The trial involves a 100 day stay up there. 7 children have undergone the procedure, 5 made it all the way through. The other two passed away. Bone Marrow Transplant (BMT) is an incredibly intense procedure with a 40% chance of lethality. Most people who are considering a BMT are cancer patients for whom the main 3 treatments aren't working i.e. radiation, chemo, and or surgery, and it is usually a last resort. 3 EB kids have passed away since Christmas Eve alone, and since there currently is no cure for EB, BMT ultimately comes into the equation.

There are pros and cons to going through this procedure. The obvious pro is that if it works, Bella would grow Ali's healthy skin on her body, thereby reducing the chance of her succumbing to this bizarre condition. The big con is that Bella could die from the procedure itself. Also, the research team is tinkering with their research model with each patient. So, you can't look at any of the prior patients as a baseline for what to expect. Every patient is essentially n=1 because to my knowledge, no two patients have undergone the exact same procedure. Combine this with the uniqueness of each case of EB, and you have a pickle for anyone who wants to do good, rigorous research.

We knew that Columbia University has just started a reduced intensity BMT for RDEB patients, but word came out recently that a handful of other facilities are beginning clinical trials for reduced intensity BMT as well. We are planning on going to Columbia to meet with their team, and we'll see about the others. Because Bella's severity has been called "mild" by two within the EB treatment world, the full intensity of a BMT may not be worth the risk associated. We'll see. Anyhow, we're planning on going to NYC in February to shop for the best fit for Bella.

We want to hear from you! We miss the interaction. We're almost done with edits on Bella's book, and one of the great parts of it are alllllll the amazing comments you left us in the first few months. Let us know how you are and that you're still here with us. You are 2/3 of our support (Friends, Family, and Faith), and we are grateful to have you. You'll be with us as we travel to find the best care for Anabella that's available.

May 2010 bring you all of your dreams and wishes!

Blessings, and good night.

Pack your bags...anyone have a PARKA?

Well, we're going to Minnesota, folks!

We have a consult with Dr. John Wagner at the University of Minnesota Blood & Marrow Transplant Center on Wednesday, October 15 at 9am (if you're going to be in the twin cities that day - or the night before - let us know! Let's share a meal!).

Things are moving along with the registration, paperwork, gathering of information. We are "in the funnel" as Tim at U of M, who is coordinating our care, put it. He expects that this whole process, including the bone marrow transfer and recovery, will happen within the year. That means, by this time next year, Bella could be potentially free from the clutches of EB.

She'll only be a year old.

I don't remember anything (consciously) from that age, do you?

You guys, let that sink in for a second.

She could grow up having NO MEMORY of this.

No memory of pain.

No memory of suffering.

THAT is an inspiring vision to hold on to.

There is a patient who is BMT +6 (6 days post transplant) right now and her mom is keeping us all updated through facebook. We are praying HARD for her daughter right now. I will ask if I can share her name with you all, but in the mean time...know that a girl is fighting for her life right now and needs EVERY ounce of energy, thought, intention, prayer sent her way TONIGHT. The good news is that there is an UNLIMITED amount of love and abundance available for all of us to channel wherever we choose! So SEND IT TO MINNESOTA RIGHT NOW, whatever time it is you are reading this, just take 10 SECONDS and pause, concentrate, focus on U of M BMT patient. Send light, love, laughter, healing, strength, peace, patience, persistence, FAITH, support, BELIEF, and trust...or any other you feel called to!

Also. I am planting the seed now. Remember PUCK. It is a non-profit being formed to raise $$ for U of M's program. Right now, even with all the various EB non-profits out there, NOT ONE OF THEM is financially supporting Dr. Wagner's trial. I refuse to get into any of the politics of non-profits and competing research teams at competing universities. I will just say that Dr. Wagner's program is on the verge of a massive breakthrough for EB and no one within the community is stepping up to help.

Weird. So, PUCK is being formed by an EB family that has moved to MN to help him out.

Lastly, www.the5percentcollective.blogspot.com is up! If you are parents of a child with special needs, or know of one, please go to the site or send your friends or family to the site so we can begin to build a support group that is based on power, optimism, and a desire to be cause in the matter, despite the circumstances.

In other news, we are moving to a mostly formula diet now and will be introducing rice cereal soon. Bella is really struggling with her bottles. We don't know what it is, but she just fights and screams through either the first few minutes, or 30 minutes, then passes out and it takes another 30 minutes to manually squeeze the bottle in one squirt at a time. Average bottle takes an hour to give to her right now. :(

Good news is that we've been using alkaline water for over a week now (pH of 9.5) and her skin looks GREAT. Virtually no open wounds on the outside of her body right now. Just some little stuff on the face, and existing wounds continue to heal wonderfully. Now if we can just get her eating without suffering...

Now, enjoy some wonderfully ridiculous adventures in the girls' room from earlier in the evening...



Cheers!

Tim