Sunday, December 25, 2011

Rest in Peace Colin Our Friend

On a day of great joy and celebration for the Miracle of Christmas, we are given the sad news of the loss of a friend. For you who have followed this blog through the years, you know how much of an inspiration Colin was to Bailey and our whole family. And I thank our nurse Dave for introducing us to Colin that late night on the Heart Center shortly after finding out that Bailey had been listed for a heart transplant. Colin, a heart transplant recipient himself, took our whole family by the hand, together with his friend, Brandon, and led us through an adventure of a lifetime. As Josie said earlier today, "Colin and Brandon made being in the hospital fun." It takes a special person to be able to do that. Colin, I hope you know just how special you are to us. Your short stays at Riley were timed perfectly to lift Baileys spirits just when she needed it. Those nights when you weren't allowed to see each other for medical reasons so you would play Battleship over the phone. We attended the Christmas and summer transplant parties together til Bailey was fnally kicked out of the group for not having received a transplant. You would come visit at the hospital and we would talk for hours! All the while you were building hope and confidence in Bailey and our family that all would be "normal" after transplant. God had a different plan for Bailey and she was able to come off the transplant list without receiving a new heart, but that in no way lessened the impact that you had on our lives. We will forever cherish our memories together. Thank you for being our friend, brother to my girls, and hero to us all. Love and miss you always.

Angie

Friday, December 16, 2011

FDA Approves Berlin Heart

What an amazing day for children everywhere! The FDA has approved the Berlin Heart for use here in the U.S. to help save the lives of children with severe heart problems who have no other option available to them. Used usually as a bridge to transplant to keep the children alive until a donor heart can be found and matched, Bailey's heart was able to rest and grow stronger while on the device and she was able to be removed from the transplant list and sent home with her own heart. This was 6 years ago. We are celebrating and praising God that the FDA has heard the doctors' and patients' pleas and have decoded to give this precious gift of life to kids. My hope would be that no child would ever need this device. But we don't have that kind of control over happenings here on this crazy earth. So in the likely event that there will continue to be kids out there who need the assistance of a Berlin Heart, this is a joyous day!! The device doesn't have to be ordered from Germany and applied to the FDA for use on an emergency and compassionate basis. It can be ready and waiting for the arrival of those precious kids who are facing the possibility of death at much too young an age. My God we are blessed. Thank you God for answering our prayers and thank you Berlin Heart and all the doctors and medical staff at the children hospitals all across the U.S. - including Dr. T and Riley Hospital - who made great sacrifices to take part in the study. You are our heroes!!!

Friday, July 22, 2011

Berlin Heart On the Way to FDA Approval

Berlin Heart goes before the approval panel for FDA recommendation in D.C. and they hear Bailey's story!

What a day! Bailey and I left Indy airport at 6:20am. Arrived safely at BWI (Baltimore/Washington International) Airport almost 2 hours later. Wondering where our driver will be, my phone rings and its him telling us what door he was parked by. Then we see a "Hunsberger" and a "McGraw" sign. It's a strange feeling in today's world getting in a car with a complete stranger who barely speaks English.

We have lots of time because we don't talk until 1:00 so getting stuck in rush hour traffic is no big deal. We arrive at the hearing site (the Hilton) just outside of DC. Spot a Starbucks and grab a snack. We sign in at the Public Hearing/Speaker desk and get to sit in on the last morning session. The room is quite intimidating and the schedule is very regimented. We receive a set of conduct guidelines and aren't allowed to speak until spoken to, basically. Berlin Heart's presentation was earlier in the morning, so we missed it. The FDA presented their findigns and the numbers and medical jargon were quite "blinding" to us. We followed enough to tell that the panel wanted to see results that included long-term survival rate and progress. Well, the study has only been going on since 2007, so there weren't many long-term numbers to report. That's when I decided I needed to tweek my speech a little bit to give the panel an accurate picture of how well Bailey's doing 6 years after her experience with the Berlin Heart.

We broke for lunch. Bailey and I grabbed a sandwich at the hotel restaurant, and I tweeked my speech, as the Berlin Heart crew ran off (literally) to compile some more numbers and statistics for the panel.

Just before we went back in to present Bailey's story, we got to meet the Berlin Heart group from Germany! They were so grateful and kind to us and couldn't wait for us to put a human touch to all the numbers and statistics. I asked them how the morning went, and they said "It went ok. But wait til they hear about Bailey." They're great guys! I got to tell them about the run-in we had in Albuquerque last fall with the big red heart-shaped hot air balloon from Germany and that none of the crew or pilot spoke any English. They thought that was really incredible and couldn't believe none of them spoke English!

There were only 4 speakers during the public hearing - there was 1 other patient represented and 2 cardiovascular surgeons - one from Philadelphia and one from Michigan. Bailey and I started the session. She did awesome! My heart was pounding out of my chest! It was really strange - this is the first time I spoke where I wasn't scared to death - but I was incredibly excited. I startd to speak and got a little choked up a couple times but could keep going. I had to stop for reassurance from Bailey when I told them about our awesome hot air balloon pilot we crew for! A picture of Mark and Alora popped into my head and I just wanted to give them a hug! They've been a HUGE support to us along with the rest of our balloon family! The panel spokesman thanked us for our time and appreciated the emotion and the human touch. The next speaker was a dad and little brother of a girl on the Berlin Heart in Delaware. Her name is Josie! and she's been on it for 9 months now waiting on the perfect heart. It was so hard to hear her dad speak. Such a raw experience for them right now - not knowing how long they'll have to wait, praying for the donor and their family, and knowing another open heart surgery is just ahead for them. The 2 CV surgeons did an incredible job. Neither one was a part of the study, but they reported valuable findings on their patients including number of deaths, number of transplants performed, number of clotting issues, etc. One of them pointed out the death rate seems kind of high but when you consider these critically ill kids don't have any other alternative because they are going to die without this chance, the numbers begin to look quite good! Wow.

None of us were questioned by the panel (22 very serious and scary looking men and women who used a lot of BIG words), but we were all thanked for our input. We then left - we didn't really care to hear anymore numbers and criteria. We were very happy with our presentation, and did all we could do. The rest is up to the professionals.

We ran out into the 250,000 degree parking lot to catch Josie's dad and brother. We exchanged hugs and smiles and compliments for our jobs well done. We told him we would pray for Josie, so if any of you want to join us in that endeavor, we would all appreciate it! Such an awesome family. (I reserve the word awesome for extraordinary situations. I've used it a lot today!)

So we have 3 hours to spare before our car returns to take us back to the airport, so we go sit in the hotel lobby while the deliberations continue behind closed doors. We thought our day was pretty much over.

We are first greeted by a couple different people telling us we did a great job and how brave we were to present Bailey's store before a bunch of scary people. Ha! Then, a man from some American Blood & Something introduced himself and explained that his company is working on an American version of the Berlin Heart and hopes to be before this panel in 4 to 5 years. He said that Berlin Heart has been working with them to develop the device and their relationship is not a competitive one since these devices are not profitable (there's not enough demand for that) but there is definitely a proven need for the device, so they and Berlin Heart are doing it strictly for the kids! Very impressive. I got to thank him BIG too!!

Then! The most exciting introduction of this whole day - a man came up and told us he was with the FDA back in 2005 and he is the one who granted the compassionate use of the Berlin Heart for Bailey! He personally worked with Dr. T to make it happen! He definitely got the biggest hug of the day and I took his picture with Bailey. How awesome is that?! (There's that word again.)

And finally, one of the panel members himself came up to us and thanked us for putting a human touch on all the numbers. He was sure it was not an easy thing for us to do but he appreciated it and thought we did a fantastic job. What a compliment that was coming from one of the big-scary-people-who-uses-lots-of-words himself.

Then we climbed into another car with another stranger and said a prayer that he was taking us to BWI airport. [fingers crossed!] We sat back and relaxed with BIG smiles on our faces.

Now we're back on the plane and headed home. Just before we had to shut our phones off, we get a text from Dr. Cox saying "It was a unanimous vote! They said yes to every question!!!! Congratulations and thank you for all your help!!" Now picture us in the middle of the airport gate not being able to jump and shout for fear we'll be carted off by the TSA, but wanting to do exactly that. Heehee! We settled for tearing up and hugging one another.

Hallelujia and thank God! The Berlin Heart is well on its way to being approved by the FDA (which is expected to become final in the next few months) and can then be at the hospitals waiting for the kids who need it instead of the other way around and having to keep fingers and toes crossed that it arrives from Germany in time to save a life. It's going to live right here!

Thank you to all of you who have been a huge support to us!!
We love you all!!

Angie and Bailey

Saturday, December 11, 2010

Wow! It's been a while!

It's 2:43 am and for whatever reason I can't sleep. So, I check my email. I have a thank-you-for-participating message from the St. Niklaus 5k in downtown Indianapolis the Josie and I participated in last weekend. (my first 5k ever - so fun! We ran in the snow!). Anyway, it was a German event. Started thinking about Germany, then about our friends at Berlin Heart, then about their web site. Decided to check in on that again and found a great story about Bailey's experience with the Berlin Heart. Awesome life-saving experience, I might add. Look it up! Go to www.berlinheart.com and click on "For Patients" and then "Patient Stories" and then, my favorite, Bailey Hunsberger. They gave a link to the blog at the end of the story and I started thinking about how I hadn't been on it in SO long, and then . . . well, here I am.

Bailey's doing absolutely wonderful! She is 1 week away from finishing her first semester at Indiana University! She loves her biology class! She really wants to go to med school at this point. Is exciting to watch her mold her career. She's still on 14 different medications and sees Dr. Darragh (her cardiologist at Riley Hospital) on a regular basis but all continues to be stable. We like that word. Stable. So non-eventful and non-emergency. It allows for the development of routine and sometimes mundane, now that we're not the emergency, which is SO exciting, and then the gratitude and awesomeness of life itself as an everyday gift from God quickly pounces all over the routine and the mundane . . . and we're back. We don't see Dr. Turrentine (Bailey's surgeon) much anymore and that's a good thing health-wise, but we do miss him. He got us where we are today. Incredible man.

Been a year of changes for me. My boss retired early in the year and let's just say I'm still adjusting. I did work for one incredible woman, and now I work with 4 guys. (it took 4 guys to do the work of one woman. Heehee!) Then my dad was diagnosed with post-polio syndrome and then pancreatic cancer and passed away only 3 weeks after that diagnosis. His last days were so very difficult for mom and me and my 3 sisters but we all prayed for whatever was best for dad, and we do believe that is what happened. He was 79 years old, led a very active life - even having had polio as a kid - and had a family who loved him very much. Lots about my dad that I admire. But the best part about the year is I have a real hobby! Actually 2 new hobbies - i'll explain the second one later. But Bailey was given a hot air balloon ride through Riley a year ago this past fall and I became so engrossed in the world of hot air ballooning that I joined the crew for the best balloon pilot and crew chief ever! They're a husband and wife team that has taken on a mission to raise money for Riley. What better fit could there be?! We have SO much fun together- we've all become great friends. Bailey has even been out with us several times on flights. Mark organizes the hot air balloon portion of the Indy Air Show which, again, benefits Riley. Come out and see us this year! Weather permitting, there will be about 10 balloons in the sky just after sunrise and a glow event at dusk. I'm working on a balloon-themed quilt to raffle off too! Just found out they moved the air show to May next year. Don't know if I can get it done that quickly. We'll see.

My second and most recently acquired hobby is running! Haven't ran since middle school. That's about [ahem] years ago. But enjoying it very much. Josie usually joins me - when she's not studying. When we were with my dad in his last days at the hospital, my sister Cindy and I made a pact that we would make better use of our legs in honor of dad since he couldn't use his. It also helps us cope with his death - a tribute to him. And so that's why I was getting a thank- you-for-participating email from the St. Niklaus 5k event . . . And here we are. It's now 3:30 in the morning. Glad tomorrow . . . er, I mean . . . Today is Saturday.

Boy! This was mostly about me. Sorry. Josie is a sophomore in high school making straight A's, singing in the choir, and playing on the school and the church volleyball teams. So proud of her! And Marissa is in the 5th grade and playing point guard on the basketball team in two different leagues. So proud of her! Life is good, God is merciful and full of grace, and I wish you all a Very Merry Christmas and a Wonderfully Happy New Year! (A little-known fact, my mom's maiden name is Mary Christmas. It's true!)

Good night everyone!
Until next time,
Angie

Sunday, March 01, 2009

Yep! No News is Good News

It's been a while since a posting and that, of course, is good news. Bailey's had a few "symptoms" since the last update - ones that could quickly make you panick if you let it. A little swelling in her feet, legs and eventually hands, made us call Dr. Darragh. After a couple of weeks of watching her feet and legs (she even started wearing sweat pants every day to school in case her jeans were getting too constrictive from growing so much - she's gained 30 pounds these past 16 months - that's 30 pounds of GOOD weight), we were sitting at the dinner table eating dinner, and I saw Bailey's hands. I said, "Bailey, are your hands swollen?" She looked at them, stretched her fingers out, and simply said, "No." Josie, sitting across from Bailey just nonchalantly and matter-of-factly, as if she'd already noticed them, said, "Yes, they are." Bailey burst out in tears and looked straight at me as if to say "do something!" I grabbed my cell phone and tried to keep my emotions under control - needless to say, I was a little panicked too. Maybe it was time we succumbed to the overbearing and paralyzing thoughts that had been running through our heads for the past couple weeks - maybe the fluid was coming back. Ugh!! (Those words aren't even easy to type out! I have the strong urge to aggressively backspace over every single letter.) Anyway, about a minute later, Dr. D said right away that he would be surprised if anything big was going on because her last blood work (just 2 weeks earlier) was the best it's been in a long time. (We later found out that there's some heart failure number where normal is 100 - Bailey's number was 110! It had been in the thousands during her sickest days. That's incredibly exciting and a little nauseating at the same time.) So I right away smiled across the table to Bailey and she stopped crying and the look of hope returned. He brought us in the following week for an echo "just for reassurance". It was reassurance just to hear his voice on the phone say those words. We just love Dr. Darragh - in fact, Bailey and I spent the rest of the evening just sporadically saying those very words to each other. "I just love Dr. Darragh." I don't know what we would have done these past 16 years (almost 17 now!) without Dr. D and our faith. Not at all to put Dr. D and God on the same level, but God, of course, is our true and steadfast foundation who blessed us with Dr. D. I'm very, very grateful for both. (And Dr. T is, of course, in there too, but we haven't seen him much at all these past 16 months. We miss him as a buddy, but it's very nice not to see him as our surgeon.)

Marissa's a big basketball star - she's in 3rd grade and just finished their league play. They only won 1 game - their very last one of the regular season - and lost their first tournament game. But she had a blast and she's a GREAT ball handler. She scored a lot of points for her team. Very, very proud of her! (Remember those days when she was playing soccer? She scored her first goal and I, in my motherly insanity, jumped up on the sidelines and cheered . . . what a major mistake. She saw me cheering and fell in a heap in the middle of the soccer field and just cried her eyes out. She was so shy and backward back then. I still credit the solid 6 months with the Riley nurses and her Kindergarten teacher, Miss Martin, for bringing her out of that and helping her little personality blossom.) She tried out for the travel team, but unfortunately they're scrambling around to find enough players - they sent 1 player to the 4th grade team and 4 players to the 2nd grade team, leaving the 3rd graders without enough players. At least that's the rumor. We'll see.

Josie is in the volleyball club at school so we attend all-day tournaments where she plays 4 matches (of 3 games each) nearly every Saturday. We don't have to travel far - just Indianapolis area so far. She's really enjoying the club. She was on the school team this year but sat the bench most of the games. And, you know the story, the school practices are spent with the girls that already have the talent in place and the other girls are left behind and to sit the bench during games. But the Club has worked with each one of the girls and they've all improved tremendously. They are now winning most of their games and they have all developed into very talented servers and spikers. It's a lot of fun to watch them grow. And, our very close neighbor is on Josie's team, so we get to travel with them too - that's a lot of fun! And, Josie's getting ready for her People to People trip to Europe this summer. They have monthly meetings in preparation, learning about the culture and different places they'll visit. Last meeting they had a practice packing session - they had to bring their luggage completely packed as if they were leaving on their trip. The parents stood in the hallways of the school as "obstacles" and the kids had relay races with their luggage. It's been a lot of fun for the kids getting ready for this trip and getting to know one another. I'm so excited for Josie to have this opportunity. Well, at least I'm excited until we take her to the airport that morning in June . . . I'm sure I'll be praying to God and asking, "What in the world were we thinking and why did you let us do this?!" Ha!

Bailey's getting ready for Franklin Central's first annual Dance Marathon to raise money for Riley. She's been telling her story at a basketball pregame show and they've even played part of the documentary for the kids. Hopefully that will be a BIG success! And she found, successfully tried on, and purchased her first prom dress. That was a HUGE accomplishment in our lives. She's always been difficult to fit in dresses - I don't know if being opened up so many times has given her an odd shape in her chest and ribs, but she has rarely been happy with dresses in the past. So I was expecting the shopping-for-a-prom-dress event to be long, arduous, and basically a test in our faith in God, but it was a joy! She found her dream dress on the internet at a David's Bridal site, measured herself for the "perfect" fit (chest was a size 6, hips were a size 2, and waist was a size 10 - after lots of deliberation and taking the style of the dress into consideration, we decided to go with a size 6), located the exact dress at a store in Castleton, drove up there the next day, tried it on (she did, not me - ha!), and fell in love. She was so cute. She cried when we got out in the van, she was so happy. It was a memorable and very exciting moment for us. You know that feeling when something so seemingly simple becomes such an enormous joy? I love those moments.

Tom switched to day shift at the beginning of the year, and it seems like we now have a husband and father. He is so much happier now - we didn't realize these past 7 years or so that there seemed to be such a hole in the family dynamic. It seems complete now. He doesn't sleep all day anymore! It's quite a change and we're loving it!

Hope all is well with you all. I need to go - didn't realize I was sitting here so long!

Have a good weekend everyone - spring is on the way! I just KNOW it has to be.

Love you,
Angie

Sunday, December 14, 2008

Jewelry Event

Happy Holidays, everyone!

Bailey, her best friend Paisley, Josie, Marissa and I attended an evening at Robert Goodman Jewelers in Zionsville to view jewelry that is being sold to raise money for the Heart Center at Riley. The jewelry was designed by Nea Hildebolt, who current lives in Bali. She was in town for the party and it was so nice to meet her - she's so sweet, thoughtful and really wanted to work on this project for the Riley kids. It really is beautiful artwork and if you're still in the market for a gift for the holidays, I encourage you to take a quick trip to Zionsville to take a look (and you can see the lights of downtown Zionsville at Christmastime). I'm not sure how long they are going to be available. There are necklaces, earrings,bracelets, and rings (although the rings didn't make it to the show) ranging in price from $100 to $250. Bailey is wearing one of the necklaces in the pictures below - not a great view of it, but it gives you an idea. We had a great time, and enjoyed the hospitality of the Goodmans and the Riley Foundation.

Bailey is doing fantastic these days! She's getting an ultrasound next week to see if her gallstone has grown but, even if it has, they aren't going to do anything about it as long as she is not having any symptoms.

We haven't see our Riley team much at all this year -- that's an absolutely wonderful thing, but we do miss them and we think about them often! (Hi Billie!)

Hope your holidays are wonderful!
Merry Christmas, everybody!
Enjoy the picture!

Angie




Bailey and Paisley



Bailey and Dr. Turrentine



Bailey with Nea, the artist.



Josie and Marissa.

Sunday, November 16, 2008

Season of Thanks

The girls and I visited my Aunt Donna's church in Greenfield today. The sermon was about being thankful. I have always loved the month of November as it's the perfect time to reflect on the year and truly appreciate all that we have. So I've spent my day in that reflection, and would like to share a few things with you, in no particular order. I'm thankful for my family - and that truly does belong at the top of my list. I'm even thankful for waking up at 5:30 in the morning to Bailey and Josie arguing over who gets the most bathroom time or whose belt is whose, because that just means that they're healthy enough to fight. It does strangely warm my heart - I used to think that my girls just never fought because I was doing such a great job as a mom (Ha!). Only after Bailey fully recovered from her health struggles of the past 4 years did I begin to realize that she just didn't have the energy to fight and therefore no fun for Josie either. (I hope you're getting a little giggle out of this, because I certainly do. Of course it gets on my nerves on occasion - just like any mom would - but it still warms my heart.) Don't get me wrong - they don't fight all the time - I'm just trying to get the point across that life has calmed down enough for us lately that it's opened the door to normal sibling rivalry - and it's beautiful. I'm thankful for my best friends and for one particular tea parlor in Noblesville - The Ruby Pear. (Check it out!) I'm thankful for a year where only 2 nights were spent away from home and in the hospital. I'm thankful for our jobs. There are a lot of people out there losing theirs, and I'm just thankful for ours. I'm thankful for every single nurse and doctor at Riley. I'm thankful for Rissy's black eye and sore elbow - because injuries caused by falling down the stairs could have been much worse so I am, therefore, grateful for just a black eye and sore elbow.

I could go on and on and on. I wish you nothing but joy this Thanksgiving season. It's through the trying times that we see God's light. I'm thankful to God for the many lights that He has given our family. I'm very grateful to each and every one of you who has said a prayer for Bailey and our family over the years. God answers prayers and miracles do happen. Thank God!

Have a great Thanksgiving everybody! Good night.

Angie
P.S. Yesterday was the 1-year anniversary of Bailey's surgery. I don't believe there are even words to express gratitude for that.