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.

9 months in, 9 months out!

Well, Bella turned 9 months old last week. Sorry for the lapse in updates. So much to catch you up on.

Last week the entire family was flown to Phoenix, AZ to attend the Molnlycke Healthcare National Sales Meeting. Molnlycke produces all of the dressings (except rolled gauze) that we use on Bella. When our Physical Therapist Betty had trouble trying to dress Bella's wounds in the NICU, she called Tara Keebaugh, the regional sales manager. I think Tara and the local distributor rep, Jennifer, were out waiting for us in Bella's room the next day. Might have been 2 days, but I seem to remember it being FAST. Anyhow, they were awesome; they really gave Betty some great advice on what products they had that would do a better job than the McGuyver- job Betty was doing with what she had. Tara and Jennifer were really helpful and supportive, and we were left delighted with that experience.

Fast forward to last month where I got a voice message out of nowhere from Tara explaining that Bella had been selected essentially as "Patient of the Year." Each year at their national sales meeting, they have a patient and their family come to the event and share their story so the sales force can see who really benefits from their products, since the sales people don't usually interact directly with patients. This year, Bella was selected to be that patient.

So Wednesday, we headed to the airport. They got a seat for all four of us on the plane, and had an SUV with driver waiting for us at the baggage claim! We were expecting to go to the Phoenix Airport Marriott, and in fact had family waiting there for us to have lunch when the Alan, the driver, says, "So, have you been to Desert Ridge before?" Desert Ridge? That's a different Marriott altogether! It's a waaaay nicer Marriott as well! Pretty cool except for the fact we had family meeting us at the other hotel! So, 15 minutes of scrambling to get various family members on the phone later, we're all on our way to the J.W. Marriott at Desert Ridge. WEEEEEE!

The property, accommodations, and service were all world class. We're waiting on copyright clearance for the video we made of the event. Even though I used my friend's music and cited him and how to get the CD in the video, youtube won't publish it till I submit a written letter from my friend giving me permission to use his music (no joke). A little draconian, but I get the idea. Good thing you don't have to do that with written intellectual property. Can you imagine?

Molnlycke also shot professional video and photography of the event and be sure that as soon as we get it, we'll share it!

They gave us 30 minutes to share our story. Tara began, and introduced Betty, and Betty shared for a couple of minutes. Then she introduced us to a standing ovation. There were about 100 people in the meeting, mostly sales, some marketing, and some admin. Ang started out with a killer slide she made about 10 things you may not know about EB. Most of the end users of Molnlycke products are burn patients, so the group only had limited exposure to EB. GOAL #1 EDUCATE THEM ABOUT EB. CHECK!

Then, we showed them the "Bella's Beginnings, extended version" video and explained the impact of Bella's song and how it assisted in every hospitalization to calm her down during painful procedures. GOAL #2 EDUCATE THEM ABOUT MUSIC THERAPY. CHECK!

Then, we shared about Bella's book, and everyone in the conference left with an egg shaker that had the butterfly from the cover of Bella's book, and www.bellasblessings.com on it. GOAL #3 EDUCATE THEM ABOUT BELLA'S BOOK. CHECK!

Finally, because of my training not only in music therapy, but in using music in corporate and employee wellness, I thought since we had so much time, we'd give them a gift and do a little group music making for team building, and a brief visualization exercise. At one point, I had the both the U.S. President and the worldwide CEO of Molnlycke on stage playing a heartbeat each on a frame drum I gave them. I distinguished them as "the hearbeat of the organization." While they laid down a steady heartbeat, I had one half of the conference shouting "DELIVER" while shaking their egg shakers up on their feat, and the other half responding, "THE DIFFERENCE!" while they were up on their feet shaking their shakers as well. That was the theme of the meeting and it was posted EVERYWHERE. I had the two sides competing for who could play and shout the loudest...it was awesome. Then, we closed with a brief visualization exercise to really bring home the point that they really have no idea how many people's lives they make better every day in their job, even though their job isn't to necessarily treat patients directly. After there wan't a dry eye in the house, the Prez and CEO presented us one of those "Publisher's Clearinghouse" cardboard checks with Anabella's name and a generous donation on it. We were back home Thursday evening.



All of that was amazing, but do you wanna know what the REAL bonus of the trip was? Getting to spend all day Wednesday and Wednesday night with my brother Paul, his wife Heike, their 9 month old daughter Liesel, and my mom Sheila and step-dad Ralph. We had lunch and dinner together Wednesday, and spent the rest of the day either relaxing together in our suite or shopping. I even got to babysit all 3 girls in the afternoon! It was a true celebration of family, not just for our little family at the conference, but for a portion of our larger family. After the conference, I took Ali on the lazy river ride at the hotel for some "just Ali" time as well. To prove to her my commitment to swim with her, she and I wore our swim suits under our nice clothes during the conference so we could get to swimming right away afterward!

Whew! On top of all that, on Thursday we launched 3 new pages on the blog here in case you haven't seen them, as well as www.bellasblessings.com, which Rodger, my stepfather-in-law, and I made ourselves from scratch, and....

...got our first copies of Bella's Blessings: a Humble Story of Providence delivered to our home! Talk about a labor of love. The book was 9 months in the making even though the story inside only covers the first three. I thought I'd have a book in hand by October 1st EASILY. HAHAHAHA. Writing, producing, and publishing your own book takes waaaay more time and energy than I realized! It was a great learning experience, though, and I'm really proud of it.

We are REALLY EXCITED to announce our first partner organization: Pioneering Unique Cures for Kids! (PUCK) They are working with U of M helping to fund the EB trial as well as other programs there. Up to 50% of the proceeds from March book sales will go to PUCK, and we are just so excited to get to contribute to an organization that is supporting Bella's BMT this summer!



In other news, Bella's 9 month check ups were yesterday. 90th percentile in height and weight. OFF THE CHARTS in head circumference. That part is actually a cause for alarm. Her growth chart for head size is pretty much vertical. She needs to get an ultrasound to check for Hydrocephalus because her head has been getting steadily bigger than the rest of her already gigantic body. Luckily, she doesn't seem to have any of the other symptoms associated with the condition, but our pediatrician likes to be cautious and that is a good strategy with Bella.

Her check up with her dermatologist was also yesterday, and when Dr. Metz heard her growth, she was so excited. She said she has NEVER had another RDEB baby grow so big despite her condition! When I told her about the BMT this summer and told her Ali was HLA identical (meaning the best possible donor out there for Bella), she looked at me, and with tears in her eyes, she said, "So the very etiology responsible for her condition will also be responsible for her cure!" It was a really tender moment, and to hear the clinician in the white lab coat get so emotional over Bella... well, Bella, you're just doing your thing: inspiring the world one person at a time.

We are so flattered, lucky, and blessed to be along for the ride.

Bella.

She rocks.

and she hasn't even spoken a word yet.



LET THIS BE A LESSON THAT HEALING PRECEDES AND TRANSCENDS LANGUAGE.

When someone you see or know is suffering, don't worry about having the right words to say. Just a smile, prolonged eye contact, and even a touch of the hand can do more than a snazzy quote.

With that, I thank you all for joining us on this amazing and wonder-full journey.

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.

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