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?

Happy Fathers Day!

Happy Father's Day all you dads out there!

Come to think of it, are there any dads out there reading this blog? If so, CHIME IN! Lemme know you're out there! This way, I might occasionally throw in a sports analogy JUST FOR YOU.

Today was great. First off, my prayer was answered! The girls all slept in till...

wait for it...

... are you waiting?

9:30 am! WOOHOO! That was AWESOME!

Then, if that weren't good enough, ang took the girls into the living room and let me just veg in the bed watching the World Cup, and brought me coffee and breakfast in bed... ON A PLATTER! Okay, okay, it was a breakfast in bed tray, but who cares? HOW AWESOME IS MY WIFE???

Then, we went downstairs for a nice Father's Day brunch provided here at the house. The girls then napped for a while. I just watched more World Cup in bliss. After they awoke, we went to the Stone Arch Festival of the Arts in the Riverfront District of Minneapolis. My friend Logan tipped me off to it, and it showed us a whole other cool part of the city we didn't yet know about. We didn't stay for too long because it was really hot out today, and Bella was just roasting in her long sleeve onesie and long tights, not to mention all 4 extremities bound and wrapped and a giant girdle around her midsection holding her Hickman in place safely. Nevertheless, it was really fun; we got some fresh mini donuts that reminded us of Pike Place Market in Seattle. Ang bought a beautiful necklace, and Ali got her face painted. Good times were had by all.

We then hit Target only to cross paths with... the Oscar Mayer Wiener Mobile on the way out! What an awesome combination of engineering and marketing. I wanted to go inside so bad! I wanna party inside the wiener mobile! That doesn't sound good, but who cares. It looks FUN!

You KNOW you wanna ride...

Ali rocking the wayfarers at Target...

We came home and raided the kitchen for more yummy leftovers from Friday night - whole wheat pasta with turkey meatballs with cucumber/tomato/dill salad - (nobody eats the healthy left overs around here... better for us!) and played around in our place till bedtime. Nice and mellow. Just the right speed going into this coming week.

Other news:

Check out the video tour of our place in the video section to the right.

Drop in on our other EB friends' blogs. Baby Daylon started his BMT one week ahead of us; please send lots of prayers his way as the chemo drugs are really hitting him h-a-r-d. Baby Rafi is back in the hospital with a fever, so please pray for her as well. Baby Jonah is still working on feeding issues, and baby Tripp is dealing with eye issues. They all need all our prayers. Please take time to visit their blogs and hear their stories. They will inspire and touch your hearts. There are two sides to the Epidermolysis Bullosa coin. Pain & suffering are on one side, and gratitude & inspiration is on the other. You'll see both sides of the coin play out in each of our stories, but that's what makes life worth living. Thank YOU for living our story with us. We are better for it with you in our life.

Blessings to you.

Placing a Hickman Line, Pulsoximeter, & EKG Lead for EB kids

Check out the Zombie at 6:30 am...

Well, The big procedure of work up is complete. Bella had her CVC, or Hickman Line, placed in her chest today. This will be kind of like a permanent IV where the doctors and nurses will be able to easily draw blood, and administer medicine and nutrients. The line has two different valves that connect to one "tube" that is divided into the two "lanes" of traffic. This one tube goes into the main coronary vein and sits practically in the heart itself. It is a large apparatus, and due to its proximity to the heart, risk of infection at this site needs to be closely managed.

Let me break the day into the Good and the Bad like I used to, since there was both. That way, I don't concentrate on only one.

Somebody does NOT like to be up at early thirty in the am!

First, The Good:

We met Dr. Jakub Tolar today! YAY! For those that don't know Dr. Tolar, he is the chief transplant doctor working with Dr. Wagner on this study. We did not meet him during our original consult, but have consistently heard glowing praise from every other EB BMT family that has gone ahead of us. He visited us in the preop room and I had the opportunity to work with him in the O.R. (I'll get to that) It was a real treat. He is incredibly professional, detailed, and yet completely invested in you the parent, open, and approachable. He wants to hear from me via email EVERY NIGHT for a status on not just how Bella is doing, but how we are doing as well. That ROCKS. The biopsies and blister tests went extremely well under his direction, and while everyone was hanging on his every THOUGHT in the O.R., there was not a trace of ego in the room. He appeared to just be a man in scrubs among other men and women in scrubs.

The Treatment Team of Ringgold and Ringgold...

Throughout the following, Bella was sweet and adorable, though a little sleepy. The anesthesiologist said this was one of his "Top 3" experiences with an Epidermolysis Bullosa baby and her family. I'm sure he says that to every family.

Two particular items of note for EB families:

1) In case you didn't already know this, there is a relatively easy way to get an EKG without having the leads pull skin off. First cut the adhesive portion of the leads off. Then, use a dollup (you know I'm in the midwest now) of 1% Hydrocortisone cream on the lead to connect to the body. then use a piece of mepitac to secure to the skin over the top of the lead.

2) If you need a pulsoximeter attached yo your baby or small child's hand, have them put duoderm on the inside of the bracelet facing inward to cover the adhesive material. Leave 1 centimeter at the end exposed so the pulsox can adhere to itself once wrapped around the finger.

Ali hanging out with the RMH dog Jerry is definitely good...

Ronald McDonald House goes in the good column today for sure. Today, Ali had Acting/Drama Camp from 1-4. (I know, I know, as if she needs any instruction in this area...wonder who she gets THAT from) Then, we played games and she wanted to exercise, so she asked me to take her to the exercise room. She walked on the treadmill, rowed the rowing machine, basically asked to try every machine in there to get out the rest of her energy. She really looks up to mommy and how dedicated she is to exercise. Then, after the dinner the was made for us, there was a therapy dog, Murphy, that came by, then there was a craft time for making cards, followed by open play in the playground till bath time. Man, she went down EASY tonight! Thanks Grandma for watching her so we could be in the hospital with Bella!

The Bad:

I wrote recently about the lesson I learned from Bella's birth. The lesson was that you can create and generate your future as much as you like, but in the end, you cannot control it.

Well, let's just say that today, I had a bunch of opportunities to practice owning what I learned.

Without going into a laundry list of "what went wrong today," We had several things either happen that were directly opposite of what was planned, or several things that didn't happen that WERE planned.

In San Diego, Ang and I were able to go into the O.R. and do dressing changes. Here, despite my repeated efforts to the contrary, only one of us was allowed into the O.R. Ang and I generate some serious synergy when we work together. It's not that we can't do the work alone, it's that it's more than doubly good when our teamwork and creativity is allowed to combine.

This was especially important today as we were going to have to wrap Bella's Hickman ourselves, and spent a chunk of yesterday in training and on the phone with other BMT parents about best practices for this. Well, after all that, it was just me in there. The dressings went fine, but it took some second and third tries in the recovery areas before we were happy with the initial strategy for managing this giant tentacle sticking out of Bella's chest.

In addition, the way the line was placed left no room for a particular technique the doc who placed the line, Dr. Acton, encouraged us to employ, which was to coil the extra slack in the line before covering it so that if it gets tugged, the slack takes the trauma, not the delicate umbrella holding the line in under the skin. Well, when I walked into the O.R. after he was done, he left me exactly NO SLACK whatsoever in the line. I now had nothing to work with to ease potentially "unplanned exits" of the line. Not only is there no slack, but it was placed so close to her left armpit that the line just hung down between her arm and torso. No big deal except it has two really sharp clamps sticking out of it that will just shred her upper arm and torso unless it just gets tugged out the first time she reaches across her torso with her left arm.

On top of that, the dressings we ordered in advance to cover the line were not present, so we had to gerry-rig the dressing with leftovers. NOT part of the plan.

Then, the line got a clot in it. It took another 3 hours of trouble shooting and drug administering before it got cleared. They told us it was a 2 hour procedure, but that we should really plan on more like 3 or 4. Well, we checked in at 6 and walked out a 4 this afternoon. 2 went to 4 went to 10 hours just like that.

All's well that ends well, because we got our hands on a catheter pouch that wraps around Bella's torso and velcro's safely in the back. In the front there is a small pouch with another piece of velcro to help keep the catheter protected inside it. I'll take a pic tomorrow and show you what I'm talking about. Bella is out cold and I don't want to disturb her. So, the line is safe, and she is safe sleeping with it for now.

Wiped after 10 hours in scrubs...

Providence Story of the Day:

Remember these? :)

This is really two stories, one of which I forgot to share a few weeks ago. It is perfect that I forgot because when combined with what happened today, its power is exponentially increased.

Okay. First story: For those of you that don't know, I am a huge soccer fan, and still play as much as time will allow me to. It is the diversion that my brain needs to switch off for 2 hours at a time and take a break from the enormity of caring for Bella. For the 2 hours that I play or watch, I am totally focused on the game, in the zone, whatever phrase you want to use. When I finish, I feel totally relieved of any stress I brought into the experience. This is the true meaning and purpose of recreation, or re-CREATION. I feel alive, renewed, rejuvenated, even if I pick up a knock, strain, or "boo-boo," as Ali says, along the way.

I play soccer with a group of Persian men in Irvine on Sunday afternoons. I started playing with them a month or so before Bella was born at a particular field at a particular time. Then, due to dealing with Bella, it took several months to get back out there. Well, when I finally returned, they were gone! I was crushed because I never bothered to get anyone's phone number, so I lost the group. This really bummed me out because Sunday afternoon is the perfect time for me to play with my schedule, and it's pick-up, not league, so if I miss a week, which I frequently do due to travel and work, nobody ends up in an uproar. Anyhow, I returned home dejected. About 8 months later, I ran into one friend who I used to play with and one of the guys from that group! They had moved to a new field only a mile away, but you cannot see the field from the main street so when I went looking for them, they were hidden! I resumed playing with them this spring much to my delight.

Then, it happened again. A few weeks ago, I showed up at the field, and they were gone. Again! I just shook my head because of how long it took to find the group last time. I started driving to the old field where I first met them, and on the way, I said to God, "Please? Please let me find them. I really don't want to lose these guys; they are the medicine I need!" I drove to the original field. At the 4-way stop sign next to the field, I could see plainly they weren't there. I looked to the car at the stop sign waiting to cross from my right. Then, I looked again, completely amazed, because in the driver seat is one of the guys from the group! In fact, he and I played side by side as central defenders just two weeks prior! I rolled my car into the intersection, and rolled down my window and took off my sunglasses so he would recognize me. He did, and rolled down his window as well.

"Where are we playing?" I ask.

"Oh hey! What's up dude? We are at IVC, bro! (Irvine Valley College)"

I remember that this was the back up field HE told me about just 2 weeks ago that completely slipped my mind. However, he was driving northbound, away from the field.

Here's where it gets really interesting...

"Well, where are you going then?" I ask quizzically.

"Bro, I'm not even playing today, I was just on my way home!"

Over 200,000 peeps call Irvine home. It spans about 65 miles. What are the odds of bumping into THAT guy on THAT corner at THAT time? Someone ask Richard Dawkins to get back to me on that one.

Story Two:

On Saturday, my friend Logan accompanied me to a local brew pub to watch the USA play England in the World Cup. The bar hosted a big outdoor BBQ complete with beer tents, burger tents, a stage with bands, and a huge jumbo-tron to watch the game. Never mind the inside of the pub was packed tighter than a general admission rock concert. As we were in the burger line, I struck up a conversation with a guy next to me in line. One of the prayers/intentions I put out there before going was that since I would be in a tight mix of like-minded peeps, perhaps I might "bump into" someone who might lead me to some local soccer playing here. (Better believe I brought all my gear to MN) Anyhow, I start talking to this guy and he asks me if I play.

I say, "Yup. Goalie and central defense." (most guys HATE playing these two spots and feel penalized if they have to... me, on the other hand, I love these two positions.)

He looks at me a little shocked and says, "Me too! Wow, that's weird." I thought so, too. Anyhow, we shoot the breeze for a few more minutes and then split off on our own ways.

Fast forward to today. At the end of the day, as we are walking out the lobby, I told Ang I NEEDED Starbucks and that we are making a much needed detour before walking home. She asks me to pause as she stows her jacket, and in doing so, we slow down our trot enough for me to spy, around the corner, a milk thermos, much like the stainless steel ones you see adorning the condiment bar at Starbucks. Immediately, I realize there must be some lobby coffee bar, so I round the corner thinking I'll just get my coffee there, and who is standing there next in line?

Yup. The guy. Today, he's all decked out looking all professional. He turns and looks at me and we stare for a second knowing we know each other. I walk up and say, "Were you at Nomad (the pub name) on Saturday?"

"Yeah man, wow! Hey, how's it goin'? What are YOU doing HERE?"

I break it down for him and give him my card. I tell him about Bella and that I am seriously in need of hooking up with some soccer to keep me balanced through the journey. He tells me his name, Maurizio, and says he'll ask his coach if I can come practice with them at least, and if nothing less, we can hook up to kick the ball around.

Now, I don't even know how to do the numbers of probability on this one.

Anyone get the sense that God is listening?

I am unapologetic in my love for this mostly foreign game to fellow Americans because I know that it is good for my physical and mental health. God literally knows this and knows my heart. He knows I don't ask for much, but to be able to run and cheer like a kid once or twice a week. This, he can do. I know it just makes him smile to see me so happy. I know it just makes him smile when he sees ANY of us happy. Joy comes in many shapes and sizes.

What brings you joy? Please share with us in the comments box!

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...