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?

What a Celebration!

On Saturday, May 29th, we celebrated Bella's first birthday in style. We were surrounded by "the Three F's" as I like to call them: our Friends, our Family, and our Faith community. We threw the party at our church fellowship hall and the food, cake, and fun was enjoyed by all, especially Bella!

We had the outdoor playground open for the bigger kids, the nursery open for the younger kids, soccer balls out on the lawn, and slide shows and video montages of the past year running in the main hall for all to enjoy, no matter what their age.

There was just so much JOY present. It was awesome.

Living through a year of Epidermolyis Bullosa has been the most challenging and rewarding experience to date. It has amplified everything in life. I don't take ANYTHING for granted anymore. The love felt from everyone on Saturday was so wonderful. We go to Minnesota filled with love and support from everyone around us. What a great feeling. Even the guys I play Sunday afternoon soccer with are praying for us.

In other news, PLEASE check out this month's Featured Partner! It's DebRA!!!! YAY! We are so excited to continue to return the favor by raising some more money for them this month. They have been so good to us since day 1, and last month, not only did we raise enough money to donate 100 books to their New Family Boxes, but we raised several hundred dollars over and above what was needed for the book drive! Well, let's keep it comin' this month!

We are sad that we are going to miss the Patient Care Conference DebRA is holding in Cincinnati this month. It's the first week/weekend we arrive in MN. That would be a little too much to bite off. It wouldn't be so bad except it is only held once every other year, so we are sad we will have to wait 2 YEARS to meet our community face to face at last.

Meanwhile at home, we continue to prepare for next week's pilgrimage to MN. I can't believe by this time next week, I'll be in Salt Lake City driving the minivan alone MN. There is still a fair amount to do, but we're getting a lot done every day. Thanks to my parents for coming out from CO to participate in the party and help here at the condo. Just watching the kids play while I run around banging out honey-do's is such a help.

I will close by asking you to comment on this post. Each family that has gone through the BMT has communicated in their own style on their blogs and have shared a different angle or view of the journey. We are asking you to tell us, "What aspects of the BMT journey would you like to read about specifically?" Please tell us. We plan to be a clearing house of information and inspiration throughout this journey. SO many gave so much to us through the web in our first days, weeks, and months, now it's our turn. So, PLEASE, comment.

Peace!

Happy Easter!

Well, we've made it to Easter, and we have so much to be thankful for. We spent Saturday at Grandma's and Grandpa's house with Bella, Ali, and their uncle Steve and aunt Dina and cousin Wil, and new baby cousin Molly. It was a beautiful day, and the older kids had an easter egg hunt and the babies, well, they did their thing as babies. Eat. Sleep. Lounge. You know, the good life!

Ali Delighting in the Easter Egg Hunt

On the book front, we are excited to announce our featured partner for the month of April, MUSIC TO HEAL. Music To Heal is a non-profit organization that funds music therapy programs in children's hospitals in Southern California, including CHOC, where Bella has spent 17 days this year, including her first 12 on the planet. Please read up more about them on our Featured Partner page! I had the opportunity to provide some training to their volunteers last week and they are just a great young organization full of life, passion, and a giant heart.

On the wound care front, things have been going very well for the most part, until today. We had our first sign of a possible Pseudomonas infection in one of Bella's wounds. When I took off one of her dressings, the underside of the dressing was neon green, a color we have never seen on her. Immediately, Ang thought it might be Pseudomonas because after reading about it in a number of other EB blogs and websites, she remembers that is was described as characteristically blue-green, bright green discharge. The interesting thing is that the wound itself didn't look at all infected. I guess the dressing (Mepilex Lite) must have wicked it all away from the wound? Still being relatively new to all this, we cleaned the site twice, but bactroban on it, and covered it this time with Mepilex Border Lite. We'll check it daily to keep cleaning it. I read on one site that Pseudomonas is antibiotic resistant, which if that's true is a drag. We'll be starting to add vinegar to subsequent baths to upgrade the cleansing campaign.

On the Transplant Front, we are officially beginning Bell's "work up" on Monday June 14 in Minneapolis, MN. It will be about two weeks of consults and tests, and then Bella would be admitted to the BMT Unit approximately on June 28. Ali will have her stem cells harvested around July 5th or so. Of course, these dates are approximate, but we are full steam ahead go for the 14th. Ang, Bella, and I will return to MN later this month to finalize lodging, then I'll drive the minivan packed the week prior to the 14th and Grandma and the girls will fly up that weekend. My goal is to have us unpacked and moved into wherever we end up by the time they arrive for the smoothest transition for everyone. I'm really looking forward to driving to MN alone! The last long distance trip I took alone was from CT to AZ in 1995 and it was the quietest 7 days of my life. I felt like I stepped off the planet for a week and just hung out with God. I didn't hurt that I had no radio in my car. We'll see if I choose to crack out on a bunch of books on CD or go for the monastical journey again. Which do YOU think it'll be?

How come I don't get to collect Easter Eggs???

Can I just also share my fears with you real quick? These are things you can pray for as we prepare for this journey. I know that these are just my own fears, but they linger and fester, so I would like to turn them over to you collectively to pray for. Thanks! I worry about Bella and how she wrestles so violently in bed when falling asleep. How's that gonna go with a Hickman line in her chest? I worry about Ang having to focus on her job in a new city each day while her baby is going through such an ordeal, and how much that will weigh on her. I worry about how we will keep Ali happy given I'll be in the hospital room 24/7 and Ang will be working full time. I worry about how I am going to keep my sanity in that hospital room for 50 days straight on little to no rest daily.

Thanks for taking those off my shoulders. I am reminded that this has always been beyond my control, and all of these fears are from me wanting to know how it's all gonna turn out before it happens. I am reminded of the quote, "God is in the results business." I just love trying to take back control over the outcome of everything in my world. Oh, man, that is mentally exhausting, though. Thanks.

I have to take a minute to publicly gush about Ali. Ang was away on biz this past week, and in the past, Ali would seize the opportunity to really out me through the ringer while mommy was away. Well, whatever it was, she has currently gotten it out of her system, and has just been an ANGEL with with Bella and me. I think I gushed about Ali last post, too, come to think of it. She's just been amazing.

Okay, outta here for now. Please go read about our new partner, MUSIC TO HEAL. They are very inspiring, especially because the founder is just starting his third year in med school! Get to know them. They rock. I am just so inspired by both these guys and PUCK as well, and thrilled to be making a difference in the world with them, albeit small here in the beginning. At least we're doing SOMETHING.

Happy Easter to you all and good night.