Wednesday, July 27, 2011


Yes, we received more than one warning about traveling to Los Angeles during the infamous Carmageddon. Just the idea of it put a damper on our plans. Unfortunately, the date had been set and the tickets had been bought, so there was no turning back.

We left early Saturday morning (way too early…6:30 am) and boarded a plane for sunny California. We arrived in LA at 11:30 west coast time. This is a picture of the dreaded Carmageddon.

Yeah, no traffic. Obviously the tactics used to keep people off the road worked. It took us a whopping 30 minutes to get from the airport to our hotel.

Of course we wanted to grab lunch, so I put in a special request…In and Out Burger. I tried to explain this place to Joe and the best I could do was describe it as the west coast version of Five Guys. Luckily the burgers didn’t disappoint and the whole Murray family was happily full.

Saturday night we had the pleasure of meeting up with another EB family for dinner. Their son, Brandon, is 7 with RDEB, and they have played a critical role in providing funding to several EB research projects. It was like we had known each other our whole lives! They were such an incredible family and we had so much fun getting to know them better. Sweet Brandon even invited us to come to his house to go swimming.

Unfortunately Ella was done for the day. We met them for dinner at 6:30, which was 9:30 DC time, so Ella fell asleep in the car on the way to the restaurant. She woke up enough to take a few bites of her spaghetti, but asked to lay down and soon fell asleep in my arms. She was a tired girl.

We were all asleep by 9:30 pm, which meant that we woke up bright and early at 5:30 am the next day. Nothing like traveling across the country with a 3 hour time difference. We had plans to meet up with my cousin, Cherish, at 10:30 am, so we had a lot of time to kill before she arrived. It’s amazing what you can accomplish when you wake up at 5:30 am.

We had so much fun hanging out with Cherish! I haven’t seen her in 7 years, so it was great to catch up. Ella was immediately in love and called her “Beautiful Cherish.” I think it had a lot to do with the fact that Cherish has hot pink hair…yes, Ella asked for pink hair too. In fact, now when she colors she likes to give the girls pink hair. Cherish took us to some of the big highlights in LA. We got to see the Hollywood sign from an observatory on a mountain, and she took us downtown to see the stars on the sidewalk and the place where all the stars write their name in concrete. It was so cool and Joe and I loved seeing the sights! Of course the highlight of our visit was a stop at a little sunglass place where we picked these up for Ella.

Aren't those the cutest sunglasses you've ever seen? She calls them her Minnie glasses.

Sunday night we headed out to a special dinner to celebrate Joe’s birthday. Yes, my wonderful husband turned 36 on Sunday, July 17. He opened his presents before we left DC, but we had to go out somewhere fun to celebrate in LA, so we headed to Downtown Disney. If you’ve never been before, it's right next to Disneyland (or Disney World in FL). It’s full of all sorts of restaurants and shops. Joe chose a pizza place for his birthday dinner. We had a great time walking all over and even got a caramel apple and cotton candy for dessert. Ella got the one item she asked for the entire trip…a Mickey Mouse t-shirt. It was funny because she had seen a picture of a little boy in a Mickey shirt and Ella knew that she wanted one just like his. She wouldn’t settle for anything else. She didn’t want anything with glitter and she didn’t want Minnie. She just wanted a standard Mickey Mouse shirt that said Disneyland…so that’s what she got. As we were leaving we got to watch the Disneyland fireworks from the parking lot. They were beautiful and Ella loved watching them.

Monday was our big day. We woke up early and faced the day with excitement. We knew we wouldn’t leave with Ella cured, but we also knew this was the first step toward a cure. Joe and I have really been feeling like it’s time to get moving. We’re tired of sitting around waiting for something to happen. We want to be in on the action. That said, we were both excited about the day. Ella didn’t know what was going on until we walked in and she saw people in white coats. Oh boy, does she know what that white coat means.

The doctors were wonderful. They took their time with us and answered all of our questions. After we had all of our questions answered and they had the necessary information from us, we proceeded with what proved to be the worst part of the day…worst part of the trip…the skin biopsy. If you’ve never had a skin biopsy, count yourself lucky. Ella had her last ones when she was just a couple of weeks old, and Joe and I weren’t around when those were taken, so none of us were fully prepared for what was about to happen. Ella’s upper arms were beautifully clear and unwrapped to help keep her cool in the summer heat. Of course, that’s where they wanted to take the skin from. There goes her beautiful, boo boo free upper arms. I won’t go into too much detail, but just so you understand the full extent of a skin biopsy, they numb the area (although Ella didn’t act like it was numb) and (as I’m laying on top of my child and Joe is holding her arm still) the doctor took a scalpel and cut a piece of skin off of her arm about ½ the size of a postage stamp. Yeah, it was not fun.

The levity in the situation came when one of the 2 students observing the procedure passed out! I know I shouldn’t laugh, but we just found it kind of funny. We were all hovered around Ella doing the biopsy, and all of a sudden we hear a loud crash and see the girls feet out from under the curtain. Joe and I didn’t know what had happened until the other student said, “She just passed out!” and one of the doctors rushed to her side. When we left we both agreed that the girl might want to look into another profession.

I’ve said it before and I’ll say it again…Ella is INCREDIBLE! 5 minutes after her biopsy we were out in the lobby waiting to be called back to have blood drawn, and she said to Joe, “Come on daddy, lets dance!” So they started dancing right out in the middle of the foyer. It was like nothing happened. She is so brave and incredible that I can hardly believe it! She never ceases to amaze me!

Next came the blood draw. It’s no picnic, but compared to the rest of the things that she had happen that day, this was definitely the easiest. She’s had blood taken before, so she pretty much knows what to expect. The funniest part was when the woman asked Ella to go potty in a cup. I had images of pee getting all over my hands, clothes, the floor, etc. Oh, the life of a mom. She sat on the potty and I kept telling her, “Don’t go until I say it’s ok.” When I gave her the ok, she let it rip and let me tell you that this girl filled the entire cup! She was so proud of herself that she wanted to take the cup out to the lobby and show daddy. I tried to convince her that it was a bad idea, but she had her heart set on showing daddy her “surprise.” I figured the poor girl had been through a lot, so if she wanted to show her dad her pee, then who was I to tell her no. I did draw the line when she asked to carry it herself. I grabbed the cup, screwed the lid on as tight as I could, and wrapped my hands completely around it to conceal the “surprise” as much as possible. We went to the lobby and Ella proudly announced what she had done. “Daddy, look at my wee wee! I did it in the cup!” Ahh, to be 4 again. Joe was as proud as any dad would be, and the nurse was even impressed. She said that Ella is the first kid to actually go in the cup.

Last but not least, she had to get a TB test. This was probably the hardest because they have to get the needle under the skin so slightly, that if she moved at all the needle would either go too far in, or the liquid would squirt out. We had to try twice, but finally got it the second shot.

That was it! We were done! Joe and I promised Ella any prize she wanted since she had been such a good girl! Later that day we made our way to Target and she got the “Tangled” DVD.

I know the thing you're probably most interested in is next steps. Well, at the moment they have to screen 30 people with EB, then they plan on moving into phase 1 of the trial. This would include doing the injections on adults over 18. They will do the injections on 2 spots on the body. One will get the collagen VII and the other will get a placebo. After the results are analyzed on the adults, the hope is to move to children. At the earliest it could be next summer, but since I know all too well the process of the FDA, I expect it to be closer to 2 years if not longer.

The doctor made it very clear that this would not be a cure for Ella. EB has already done it's damage to her body, and much of that damage is irreversible. What this would do is help prevent future damage. It could potentially help hard to heal areas, like her chest, that has been open for going on 9 months. The injection could potentially help that area heal and keep it from reopening. There are plans to increase the injections from just one or two spots, to giving it intravenous so that it could help her entire body, including internally, but that is far down the road after the injections prove to be beneficial. There is also talk of developing a cream that could be put all over the skin, but that too is far down the road.

Ella was asleep within 5 minutes of getting in the car and Joe and I were both exhausted. We decided to just let Ella sleep and head to the most peaceful place we could think of…the beach. On the way we stopped and got sushi. We spent the rest of the day at Hermosa Beach. It was absolutely beautiful! The weather was around 70 with no humidity, so Ella could actually be outside. There was even a perfect breeze to cool us off if we got a bit too hot, but honestly, I don’t think I even once broke a sweat. The weather was glorious! We walked all along the beach and all the way out to the end of the pier. On the way back to the car we stopped for awhile and played in the sand. Joe and Ella built a pseudo-sand castle. We didn’t really have sand toys so they had to improvise. Joe and I walked in the water and cooled our feet, and I even got soaked by a wave that I severely under estimated. It couldn’t have been more perfect.

We spent the rest of the night just relaxing in our hotel. We left Tuesday morning and headed home. I honestly don’t think any of us wanted to leave. I told Joe that I completely understand why people want to live in LA. What’s not to love…other than the traffic, but we have that in DC so it’s not that big of a deal.

Ella did great on the plane ride home. In fact, as we were getting off the plane Joe picked up Ella and a woman in the seat behind us said, “Oh my gosh! I didn’t even know there was a little kid in front of me! She was so good!” Within 2 minutes of getting home we were reminded of the harsh reality that is a DC summer…extreme heat combined with extreme humidity. Ugh.

It was a great trip all around. We had some quality family time together, and feel like we took a great step toward Ella’s future.

Thursday, July 14, 2011

Typical Summer Week

Ella and I have gotten into a pretty good routine for the summer. It’s not too exciting, but gives us the good balance between getting out to do things, and staying home to relax.

Sunday’s we head to church…always a fun time. And after church we head directly to Fuddruckers. For some reason, Fudds is the after church hang-out for FBCA members. It’s great for us because there’s plenty for Ella to look at and it's what we like to call a "kid-friendly zone", and even if we arrive alone there are always plenty of people to eat with. To top it off, their hamburgers are awesome!

Monday is relaxing day…nothing too exciting, but it lets us catch up from the weekend. I usually do some laundry and maybe clean up the kitchen. This week, however, we had some very special guests come to visit! Aunt Beck, her sister Laura, and Beck's 2 nieces, Cayton and Raygan, all came over to visit. Ella and Cayton colored some beautiful pictures and Ella had fun playing with the girls. I had fun chatting it up with Beck and Laura.

Tuesday is movie day…YAY! We love going to movies, and it’s especially nice that Regal Cinemas offer $1 kids movies during the summer. We head out early, stop by McDonalds for some hashbrowns and chocolate milk, then head to the nice, cool movie theater. This week we saw “Barnyard.” Very exciting stuff when you’re 4. And we got to meet some friends at the movie, which was just an added bonus!

Wednesday is library day. This week they had a special show of “Music from around the world.” There were instruments from all over the world that Ella got to play. Before the instruments made it back to where we were, Ella was itching to play something, so I had to improvise. I grabbed my powder compact and a yellow highlighter, and Ella was more than happy to dance around while banging the highlighter on the compact. Next time I’ll remember to throw some of her new Princess instruments (Thanks Linda!) into my purse so she has something “real” she can dance around with. After the show, we typically go to the kids area and check out the DVD’s and books, and spend some time playing games on the computer. Wednesday nights Joe and I head to our small group bible study, so Ella gets to spend some quality time with Boppie and Joe and I get some quality adult time.

Thursday is usually another relaxing day. Sometimes we’ll head to the store, but mostly we stay close to home. Today we’re going to the store to get something very special for daddy for his birthday on Sunday…shhh, don’t tell him.

Friday varies. We usually stick around the house during the day, but do something fun as a family at night. Sometimes Ella and I will venture into DC to visit Joe at his office. Sometimes we’ll meet friends for lunch. Sometimes we’ll just stay in our jammies all day. It really depends on our mood.

Saturdays are the best because we’re all together as a family. Ella knows that Joe doesn’t have to go into work, so they spend the morning together making scrambled eggs and playing. This is also the day that Joe takes Ella to the bank (remember how much you loved getting a lollipop when you were a kid). Every Saturday they head to the bank and Ella comes home with a lollipop. Sometimes, on special occasions, they’ll even visit 2 banks so she comes home with 2 lollipops! This all means that I get some downtime to myself, which is always a welcome treat.

There you have it, that’s our week in a nutshell. Nothing too exciting, but it keeps us active. I hope you all are having a terrific summer as well.

Sunday, July 10, 2011

Goin' Back to Cali

After having a terrific vacation in Southern California at Christmas, this time we're heading a little farther north to fabulous Los Angeles.

I’m not really sure where to begin with this post. In fact, I’ve gone back and forth on whether or not to even post this at all. On one hand, we need your prayers. On the other hand, I don’t want to jump the gun by saying anything we shouldn’t. With that said, I’m going to tread lightly.

About 2 years ago we first heard about a potential EB treatment that was being worked on at the University of Southern California Medical Center in Los Angeles, California (USC). While (at the time) the study had only been done on lab mice that had EB, it had been successful. The basic gist of the study was that they took what the mice didn’t have, Collagen VII, and injected it under their skin. The result was that their lives were prolonged and the effects of the mouse EB were gone. In all honesty, this was the first research that really made us excited. Much of the other research was very invasive and meant the children would spend months in the hospital. I never judge what another parent chooses to do when their child has health issues...each family has to decide what is best for them. However, Joe and I have always felt that for Ella, the risks associated with the other treatments were not worth taking given where she is with her EB.

This collagen injection research just seemed to click with us. It just made sense. For years people have been having collagen injected into their face to reduce wrinkles. While Ella is missing a different type of collagen, why couldn’t the same procedure be used to help her skin?

So now to the big news. This month we are heading to USC in Los Angeles, CA to have Ella pre-screened to participate in this collagen injection study/clinical trial sponsored by the National Institute of Health. This pre-screening does not mean she will automatically participate in the clinical trial. This just gives us the opportunity to check things out and get our questions answered, and it gives the doctors the opportunity to see if Ella would even benefit from this study. It is possible that we will come back from LA and Joe and I will say, “No, this isn’t for us.” There’s also the chance that we’ll go and feel good about everything, but for one reason or another Ella won’t fit what they’re looking for in a participant. The reason we feel strongly that we need to at least go out to LA and check it out is because Ella deserves it. She deserves for us to, at the very least, explore any possible treatment out there. She has put up quite the fight the past 4 years, and if this treatment will increase her quality of life by even 1%, then for us it’s worth it.

I know there are a million questions running through your head. The first is probably, has this been successful in other people? Well, as far as I know, it hasn’t been done in people yet. It has been done in 3 different types of animals and has been successful in those. They are currently searching for people with RDEB (Recessive Dystrophic Epidermolysis Bullosa) who are over 18 to participate in the first phase of the study. Once those people have received injections (just in one part of their bodies, not everywhere), then they’ll have to examine the findings, report on those, etc. All that to say, this is going to be a LONG process and assuming we agree to go ahead with it, and assuming Ella is accepted, it could still easily be another few years before things get rolling for kids in her age group.

You’re also probably asking, are there any risks? Yes, of course. With any clinical trial there are risks associated. An obvious one being that her body could completely reject the collagen or that she could have some sort of reaction to it. While you and I have bodies built with collagen VII, for Ella it is a foreign substance. As far as we know, her body doesn’t know what it feels like to have collagen VII. It’s possible that as soon as the collagen VII is injected into her body that it would revolt. We just don’t know.

At this point, what we ask for is your prayers. Please pray for safe travels and pray that all goes well during our visit. Pray that Ella is cooperative and handles the blood draws, biopsies, etc. It’s not going to be an easy trip. It’s a long distance, a 3 hour time difference, Ella will meet several new doctors, and several labs and biopsies will be taken. That said, we strongly feel like this is the right step for our family. Ella is not getting any better…in fact, her nutritional levels have decreased, her wounds are taking longer to heal and her hands are becoming severely contracted, so we believe the time is now to take proactive action to start fighting against EB.

Thank you all for your support over the last 4 years. We appreciate all of your prayers.