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Anthony’s Story

Hi! Welcome to our CaringBridge website. We've created it to keep friends and family updated about Anthony's medical journey, to help us remember what Anthony has endured and to show how God has walked with us along the way. Some of the pictures we have posted of Anthony after surgery may be difficult for young children to see, so please use caution as you look through the photo section. We appreciate your continued prayers and hope our updates will allow you to pray for his specific needs. Thank you for visiting!



On the last day of 2002, baby number 3 arrived during a particularly stormy morning in Mobile, Alabama. After a very normal pregnancy, complete with several weeks (or was it months?) of morning sickness and all the other usual pregnancy pleasantries, a scheduled c-section was the means of his arrival. It was a textbook delivery with our new son getting a perfect score on his Apgar test! He was named and whisked off to the hospital nursery while they finished with me in the OR. We were, and still are, thrilled to have added Anthony Patrick to our family, giving our daughters, Samantha and Abby, a baby brother. (Samantha, by the way, had prayed for just that about a year before his birth!)

After an extremely long wait in the recovery room without seeing the baby, we asked a nurse about the delay. She said, "His lungs are a bit wet which is common for a c-section baby. We will bring him to you soon." So we waited. And waited. Finally a nurse came to take us to see him in the nursery. He looked beautiful and when I asked the nurse attending to him how he was doing, she answered, "He is doing well, aside from the heart murmur."

Heart murmur? Obviously she thought we had already heard the news. Unknown to us, our pediatrician heard a heart murmur and immediately had him checked by a pediatric cardiologist who "just happened"* to be in the nursery at the same time Anthony arrived.  *Read: "God ordained." After I had been transferred to my own room the cardiologist entered the room with a drawing in her hand. This was our first moment to learn that whenever a doctor draws a picture of something, there is a problem.

Bicuspid valve. Aortic valve stenosis. Surgery. Atlanta, Birmingham, or New Orleans. Critical. We had a very quick introduction to the world of congenital heart defects during this relatively short meeting in my hospital room. Before I had been worried about the delay in starting breastfeeding; then I found out that breastfeeding him could kill him because of the strain on his heart. Before I had been wondering when I could hold him; then I found out that he was so sick that he would not even be staying in the same hospital with me. Before I thought that open-heart surgery on a newborn would be too risky; then I found out that not doing open-heart surgery on our newborn would result in death. How can so much change so quickly?

The nurses responsible for transferring Anthony to another local hospital took pity on me. The tears in my eyes and the news that I had yet to hold him moved them to break the rules. They removed Anthony from his special covered bed and let me hold him before they transported him. What a joy to feel him in my arms after hours of waiting. His immediate instinct to nurse broke my heart as I had to refuse him. I will never forget that goodbye.

Ray stayed with him. The girls saw him. Then Ray and Anthony were flown to Atlanta, specifically to Egleston Children's Hopsital, connected with Emory University. A few days later the girls and I joined them there. (Thank you to Ray's mom and dad and to my sister for helping us during this time!)

We were now in a place where we were not alone. There were other shell-shocked parents wandering the halls. Other moms wheeled in wheelchairs because they, too, had just had c-sections. There were others pumping milk in the provided room and storing their breast milk in the CICU freezer hoping that someday it would be used. Here we were flooded with new information and experiences. Here we saw beyond the diagnosis. We saw the faces of the children; some of whom had repair surgeries, some of whom had heart transplants, and one on whom last rites had been performed. Here we learned the risks and the potential complications. But, here, we also learned to hope.

The doctors watched Anthony for the first few days. For awhile they paralyzed him to keep him from over-exerting. On the 6th of January they performed a balloon valvuloplasty. They had hoped it would open the stenotic--narrowed--valve. It failed. In fact, his condition worsened.

On January 9th they scheduled a Ross procedure. Little did we know at the time, but the cardiac floor was "abuzz" with the news that the Herman baby was going to have a "Ross." It was not common to perform this procedure on a newborn, but for Anthony this surgery was his only chance of survival. They successfully took out his malformed aortic valve, replaced it with his own pulmonary valve, and replaced his pulmonary valve with a homograft--a cadaver's valve. He started out with one compromised valve and ended up with two, but it saved his life. Ten years earlier there would have been no option for us. God is good!

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Our family, the evening of our arrival at Give Kids the World Village

Our family, the evening of our arrival at Give Kids the World Village

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Make-A-Wish

It’s hard to believe when you look at him now, but, as most of you know, two years ago, Anthony was dying.

In fact, his future was so uncertain, his providers recommended we seek a “wish” for him, sooner rather than later. They simply couldn’t guarantee he would still be here if we waited, and they wanted us to capture some happy memories together while we still could.

We took their advice, and about two years ago, Fran Collier from Make-A-Wish North Texas and one of her friends came to our home to talk with Anthony about his wish. He knew exactly what he wanted--he wanted to go to New York to see the ball drop on his birthday, New Year’s Eve.

So they set to work trying to make his wish come true. But it wasn’t easy. We had requested, and rightly so we still believe, that Anthony not be outside in the midst of the large Times Square crowd to watch the ball drop. The wait would be long and cold, and we didn’t feel his fragile health could safely withstand it. Make-A-Wish agreed. But finding an indoor location with both an atmosphere appropriate for a child and a guaranteed view of the ball drop proved to be nearly impossible. We know that Make-A-Wish both here and in NY worked very hard to make it happen, but by the end of November of 2013, the plans weren’t coming together to their satisfaction or our own. So we mutually agreed to cancel the trip.

And it’s a good thing we did since Anthony’s transplant came during the time we would have been gone! All along, Ray had had an uneasy feeling about the timing of that trip; we are so grateful things worked out--or rather, didn’t work out--and we were able to receive an even greater gift. Indeed, “the mind of man plans his way, but the Lord directs his steps.” (Proverbs 6:19)

After Anthony’s transplant, Make-A-Wish stayed in contact with us, checking on his progress and offering their support, always reminding us that when he was ready, he could seek another wish. So when Anthony’s recovery was complete, we began to communicate with them again about what he would like to do. As an avid "Harry Potter" book and movie fan, Anthony determined that he would like to go to Universal Studios and experience “The Wizarding World of Harry Potter.”

So his wish granters set to work for the second time...

Give Kids the World Village

When the details of Anthony’s wish were finalized, we learned we would be staying at Give Kids the World Village while we were in Orlando. We were excited about this as we have known other families who have stayed there in the past, and we had heard only good things. Give Kids the World opened in 1989 and was founded by Henri Landwirth, a Holocaust survivor. I just finished his autobiography and am amazed how he was able to turn the horrific events of his childhood into a passion for helping sick children. GKTW hosts countless families from around the world, offering a cost-free visit to Orlando area attractions while providing a beautiful place for them to stay.

In fact, GKTW could, on its own, probably fulfill a child’s wishes. It is a 70-acre resort with 144 beautifully designed, recently refurbished villas and is filled with entertainment attractions of its own. We had been advised to try not to spend every waking minute in the theme parks, but to schedule time to enjoy the Village as well. I’m so glad we did. Here are just of a few of things we were able to do:

Ice cream for breakfast! The Ice Cream Palace is open all day, so it wasn’t unusual for us to enjoy some after breakfast, then again when we returned from the parks at night. A decadent treat as the volunteers who serve were always generous with the whipped cream and cherries! And surely we walked off all those extra calories in the theme parks every day...right???

Horseback riding. Keaton’s Korral offers horseback riding a couple of times a week. Anthony has always loved horseback riding at Camp Moss, so it was a real treat to do it at GKTW as well. Although it wasn’t necessary for us, it is, like the rest of the village, wheelchair accessible. They truly had the medical and physical needs of the children they serve in mind when they designed the Village.

Miniature Golf. Marc’s Dino Putt is a 7-hole miniature golf course. Every hole was quite unique and presented its own challenges, including one inside of a cave! It proved to be one of our favorite activities there.

A playground. Matthew’s Boundless Playground is a life-sized version of the game Candy Land. It was so much fun to walk through and explore. On the last day there, they gave us our own Candy Land game designed specifically for GKTW; the locations on the game are locations within the Village itself. It will serve as a great reminder of our time there.

A game room. Amberville Train Station houses a giant model train, video games, and, Anthony’s favorite, air hockey. Although we didn’t spend a lot of time there, it was fun to find a cool place to enjoy some activities during the week.

A castle and carousel. The Castle of Miracles contains a few areas for the families to explore as well as a couple of special activities, including a carousel. One activity provides a special keepsake pillow for the children, and another allows each wish child to decorate a gold star which will then be placed on the ceiling in one of the areas of the castle. The sheer number of stars on the ceiling was staggering to consider; every one of them represented a child fighting a life-threatening illness. Anthony’s star was placed in what they call “The Star Tower.” Before we left, we were able to see his star (but only with the help of binoculars!). Although we will never be able to stay at the Village again, we are invited to return whenever we would like to enjoy some of the activities and to view his star. We met several families there who were returning years later for that very reason.

Besides all the wonderful activities it offers, GKTW takes excellent care of the families. Three meals a day, daily gifts for the kids, and a luxury van rented for our exclusive use during the week. GKTW attends to every detail and makes you feel at home right from the start.

As you can see, the Village itself kept us quite busy, and we still weren’t able to make time for it all! If you would like to learn more about what they do and what they offer, you can go to their website athttp://givekidstheworld.org/. As a non-profit organization, they are always seeking volunteer help and donations.

The Parks

The real reason for the trip.

Thanks to Make-A-Wish North Texas and GKTW, we were provided with park passes to all the major theme parks in Orlando as well as some other activities in the area--2 days at Universal Studios, 3 days at Disney World, 1 day at Sea World, and more and more and more. But since we were limited to 5 full days in Orlando and because we wanted to save some time to spend in the Village, we chose to only use our passes to Universal and Disney. I’m not sure how we could have crammed in any more!

Although Anthony’s specific wish was to go to Universal for the Harry Potter attractions, we started our week at Epcot. Rain was predicted, and we knew there were enough indoor attractions there to keep us busy. It was a great day as we enjoyed the rides early in the day (Test Track is a family favorite!), and then spent the rest of the day eating our way through the World Showcase...sandwiches in Norway, egg rolls in China, funnel cakes in the US, and finally croissant donuts in Canada which were, by far, the most decadent and most delicious of all! (I highly recommend this method of exploring Epcot, by the way.) It was hot, but we stayed hydrated by taking advantage of the free water they offer (thanks to a GKTW volunteer for the tip!), and when the rain finally came through, the temperature dropped significantly. It was a great day, and for some of us, Epcot became our favorite park.

Day 2 we spent at Universal’s Islands of Adventure. Our first stop was the Harry Potter section since that was Anthony’s priority. We started off with a bang riding the Dragon Challenge roller coaster because Anthony is all about the fast and scary rides. And it didn’t disappoint. It was both fast and scary. Just what he came for. I’m not sure the rest of us came for that, but it was his wish, so...we did what we had to do!

Next, we rode the Flight of the Hippogriff roller coaster and then the simulated Forbidden Journey. This ride was NOT Ray’s favorite, so from then on he decided to stick to regular roller coasters and stay away from the simulators!

As we are all fans, it was amazing to see how well Universal captured the atmosphere of both the Harry Potter books and movies. As we entered Hogsmeade, Abby said, “I’m home!” Wandering the streets, seeing the familiar shops, and looking up at Hogwarts castle really did make you feel as if you were transported into that world. Just what Anthony had hoped for.

We rode some other rides in Islands of Adventure--the Dr. Seuss rides, Jurassic Park, Spider-Man, the Hulk--and then enjoyed some refreshing butter beers and a ride on the Hogwarts Express from Hogsmeade over to the other side of the park to King’s Cross where we could explore Diagon Alley. Another great experience! And it was here we discovered one of our favorite rides of the entire week, Escape from Gringotts. This section of the park has not been open long; I am so glad we were able to see it during our trip.

We finished the day riding the Transformers and Despicable Me rides, and headed back to our villa to relax for awhile before we dropped into bed.

We returned to Universal on day 3. To cut down on the walking (our feet were already tired at this point in the trip), we started at the front entrance and worked our way around the park, riding ride after ride--ET, Men in Black, The Simpsons, etc,--and after a downpour, ended back up in Diagon Alley. Here we rode Escape from Gringotts again and looked in all the shops.

At Ollivander’s, each of the kids were able to pick out a wand. Samantha chose a collector’s wand, and Abby and Anthony both chose an interactive wand which allowed them to point the wand at specially marked areas of the park and “do some magic.” Abby made some rain fall, and Anthony was able to make the toilet flush in the window of Fred and George’s shop, Weasleys’ Wizard Wheezes! It offered them an extra bit of fun, and now all three kids have a nice souvenir of their time there.

Since the Hogwarts Express travels back and forth between Hogsmeade and King’s Cross, we took the train back to Hogsmeade to eat at the Three Broomsticks. The atmosphere was perfect, and the food was delicious. Between the five of us, we enjoyed Cornish pasties, shepherd’s pie, roast chicken, ribs, fish and chips, more butter beer and pumpkin juice. As authentic Harry Potter food as you could imagine! That meal was probably our favorite all week.

Afterwards, we rode the train back to King’s Cross. Since the train ride itself has some simulations, we never tired of it! Although we kept feeling drawn back to the Harry Potter section, once we got off the train, we rode some of the other rides in the park, and while Ray and the girls watched the show “Beetle Juice," Anthony and I rode the...*gulp*...”Hollywood Rip Ride Rock It” roller coaster which has a 90 degree ascent before it starts its 65 mph and 17 story-high ride. Oh. My. Gosh. Although it was fun and thrilling, when we finished, I couldn’t have been more relieved that it was over. But what did Anthony say?--“I want to go again!” I hated to say no to him, it was his wish after all, but I felt like my brain had been turned upside down! I just couldn’t do it. So here’s hoping he will be able to go again someday, and that he can convince someone else to ride it with him next time...

We finished that day back at Diagon Alley for one last time on the Gringotts’ ride, then we watched the closing fireworks. Before we headed home, we took pictures of the kids in front of 12 Grimmauld Place...with Kreacher sticking his head out between the curtains. Another great day.

Day 4 we spent at Magic Kingdom, but we were so tired by this point we didn’t arrive until mid-afternoon. Since we had been to Magic Kingdom before, we just rode as many of our favorite rides as we could and a few we had missed last time--Buzz Lightyear, Space Mountain, Carousel of Progress, People Mover, Stitch’s Great Escape!, the Mine Train, the Teacups, Thunder Mountain Railroad, Splash Mountain, Tom Sawyer Island, Journey of the Little Mermaid, Peter Pan’s Flight, Winnie the Pooh, Aladdin, Jungle Cruise, It’s a Small World, and the Haunted Mansion. Whew. It makes me tired just looking at the list! But it really was so much fun. The kids were a bit disappointed that the Pirates of the Caribbean ride was closed until September because it is one of their favorites, but thankfully we all had had a chance to ride it before.

On Day 5 we decided to go to Hollywood Studios. Again, we went later in the day. We had stayed late enough at Magic Kingdom the night before to see the closing fireworks, so we were too tired to get up early the next morning. But another piece of advice we had received before our trip was this: “Don’t try to do everything.” So we didn’t. I think one of the reasons we enjoyed the trip so much was that we didn’t try to rush anywhere. We set our priorities and then just went with the flow.

It happened to be Star Wars weekend at Hollywood Studios, so everywhere we went we saw Star Wars characters. We saw Darth Vader, Clones, Storm Troopers, Chewbacca, Princess Leia, Luke, Mace Windu, Princess Amidala, Shaak Ti, Kit Fisto, C3PO, and Darth Maul. (Credit to Anthony for feeding me all of these names!) All three kids are fans of the movies, so it was nice to be there while Star Wars Weekend was going on. We only spent a few hours at the park, but we had time to do all of our favorites: Toy Story Midway Mania (twice!), Tower of Terror, Star Tours, Rockin’ Rollercoaster (once for me, twice for everyone else!), MuppetVision 3D, and the Great Movie Ride. We topped off the afternoon with churros and a giant Mickey pretzel w/ cheese for Anthony. We did everything we wanted to do, and still left before dark, giving us a chance to relax, pack, and rest up for our early morning flight home the next morning.

A nearly perfect trip.

We are so grateful to Make-A-Wish North Texas, Lilly Walker (wish manager), Fran Collier (wish granter), and Give Kids the World for providing this opportunity for us. Part of the reason we were able to do and see so much is due to the special passes they offered us which allowed us to shorten our waiting time for rides. Because of that, Anthony was able to do everything he wanted to do and more. And we are so thankful for the ability to enjoy this time together as a family while he is healthy and strong.

Transforming what started two years ago as a “wish before dying,”

into a beautiful celebration of life.

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Comentarios

2 Comentarios

Kenneth Herman
By Granddad
WOW!!!
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1 person hearted this
Fran Collier
By Fran Collier
That's a great narrative, Kathleen. I felt like I was there with you. Glad you had such great time.
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1 person hearted this