Give Kids the World – Patrick Hoopes

Transplant Day 3,653 – That’s Ten Years!!

Ok. Technically, this is being written several days after day 3,653. That’s because we just got home from a week celebrating in Disneyland. That was Patrick’s pick, but there really isn’t any better place to celebrate magic, dreams, wishes.

This has been a really emotional week… month… fall?..!!

I always get nostalgic in October. This year, even more so, however. That has a lot to do with transplant. We took Patrick’s trip for his annual checkup early because we wanted to celebrate his transplant anniversary over his birthday. It just happened that we were there over the same week he’d taken his wish trip ten years before. Then, just a few weeks ago, my niece had a baby boy who spent 20 days in the NICU, so we have spent a lot of time in and out of that familiar setting again.

There have been a lot of reminders around what was already bound to be a very nostalgic anniversary.

Getting ready for our trip, I stayed up late wrapping Patrick’s birthday presents so he could open then in the morning right before we left. We’ve been so busy with work, school, family, and getting ready that I just ran out of time.

I try not to put off wrapping the presents. The night before Patrick’s transplant, I also stayed up late wrapping his presents because the week had been busy and I hadn’t gotten to it. I’d just wrapped those presents, gotten in bed, and switched out the lights when my phone rang and the caller ID lit up with the number of the transplant hospital. That number at 10 p.m. could only mean one thing… And I didn’t want to take that call on my little boy’s birthday eve.

Still, we packed the presents that could travel and we went.

I was so afraid to take that call. It was so scary to say yes, to pack our bags, to wake our little boy, and to fly all night to turn our little boy over to an uncertain fate.

Family photo taken just before Patrick went for transplant October 2014

One of the hardest things about intestinal transplant was that, with TPN, you aren’t actively getting sicker. You don’t see a child who is getting visibly sicker the longer they are on the transplant list. In fact, Patrick seemed so healthy. He was having one of the best years of his life. He was loving kindergarten.

Health doesn’t decline gradually with short bowel syndrome. The scary moments ambush you. Patrick would be fine, then suddenly, he’d have a fever and we’d be rushing to the hospital to be treated for sepsis. Or he’d catch his line and it would break. Or a clot would form so we couldn’t use it. We could go months in peace, but when things went wrong, we were rushing to the emergency department. Behind the scenes, he was running out of central venous access and the situation was getting worse. We knew one day, he’d run out of veins for the IVs that were feeding him, and that would happen with no warning. It was like living with a ticking time bomb. One that would alarm at random to remind us time was running down.

When he was not quite 5, Patrick ran out of major vessels above his heart where central lines could be placed. It happened suddenly. A doctor wrote the wrong concentration of ethanol lock. A line clotted. A nurse flushed too hard. Patrick went to surgery to have the line replaced and he came back without one. Upon hearing the news, the transplant team made him status 7 on the transplant list — on hold. Without access, he could not have a transplant. Two days later, we flew to Nebraska to have an alternative central line placed by passing a sheathed needle through his femoral vein and through his heart and out through his superior vena cava.

That’s when we knew that without a transplant, Patrick was unlikely to survive many more years.

A year later, just before Patrick’s 6th birthday, he was granted a wish by Make-a-Wish Utah and we took him to Disneyworld and Give Kids the World Village in Orlando. He’d been listed for a year and a half in Nebraska by then – 5.5 years total – with no match. He was on his second alternate line.

A month later, Patrick got THE call. A donor had finally been found.

That was ten years ago.

This picture was taken as we arrived in GKTW village for Patrick’s wish trip.
Our villa and rental car are in the background.

We just celebrated Patrick’s sixteenth birthday. I never imagined sixteen. I hadn’t really imagined a ninth birthday.

This life has made us a bit shy about looking too far into the future. On the other hand, we are very good at living in the moment and very grateful for every milestone.

Sixteen and ten years since transplant are big ones.

Most of the published data about transplant stops giving numbers after 10 years. Way back when we first listed Patrick for transplant, the procedure was still extremely new and borderline experimental. It was a little more mainstream 6 years later when we finally found a match and Patrick was transplanted, but the fact of the matter is that the procedure was still both new and rare at that point. That means that there really was no reliable data set for us going into this. Patrick and other transplant around the same time as him are still pioneering — writing the book for others, if you will.

The good news is that the story Patrick is writing is a good one. At his checkup, the GI was on his case ten years ago and knew him well. It’s been at least five years since he’s seen Patrick and he got a bit emotional talking about how much he’s grown and how well he’s doing.

I marvel at the fact that Patrick vaguely recognizes but doesn’t remember having TPN. His memories of hospitalizations, surgeries, and transplant are only distant memories. He has only hints of memories of living in Nebraska or the Ronald McDonald House. Those things are all familiar and sometimes he’ll even be triggered by something, but he doesn’t know why.

For Brian and myself, however, those memories are still very poignant.

In September, we when we were in the hospital for his checkup, Patrick hadn’t eaten much lunch and was hungry, so we stopped into the cafeteria to get him a slice of pizza before the appointment. There are so many memories still in that place. I could see the table I sat at the call Patrick’s wish granter to tell her we needed to cancel his star-raising party because he’d received his transplant. Across the room was the table where we ate Thanksgiving dinner with Brian’s brother’s family, who drove in from Colorado to cook for us.

Just past the cafeteria, there was the door that used to lead to the dingy outdated section of family hotel rooms in the Leed Tower (I don’t think that even exists anymore), where we rented a room for the first week until they had space for us in the Ronald McDonald House. I remember the sagging mattress and the 70’s era carpet and the chip in the sink faucet and the fridge we stocked with sandwich fixings so we could pack a lunch to eat in the ICU break room.

It seems like just yesterday.

On our way out of the building, we showed Patrick the lobby where he met Santa Claus with Toys for Tots at Christmas and therapy pets every Wednesday and — most memorably of all — where he went trick or treating the morning before transplant in a too-small borrowed Buzz Lightyear costume.

What a contrast between that year and this one. Don’t get me wrong. Both years, he was spoiled beyond belief. He may have received almost as many toys, pencils, bubbles, and more from the staff at UNMC in the lobby in 15 minutes as he could get an entire night trick or treating.

Ten years later, Patrick was trick or treating at Disneyland. How amazing is that? He has sacks and sacks of treats and has been eating them since he got home. And that’s OK!!

We celebrated Patrick’s first transplant anniversary at Disneyland, too. I remember it being such a big deal that we laid only about ten pieces of candy and he chose one to eat because he couldn’t handle the sugar.

The aftermath: Trying to choose which candy to try first.

This week, Patrick made Brian run him from one roller coaster to another all week. (And because he’s spoiled, his dad does just that.) I couldn’t help thinking of that visit where we asked if it was safe for Patrick to ride the upside down rollercoaster. How big of a decision that was. How scare I was. And now he rides it over and over again, and it’s us whose bodies can’t take more.

We splurged a bit and treated him to Goofy’s Kitchen this trip. He ate macaroni and cheese and chicken tenders until he was too full for dessert. I should maybe have warned him they were bringing a cupcake, but I didn’t want to ruin the surprise. It was worth it anyway because Minnie Mouse came when they sang to him. She’s his favorite.

When he isn’t chasing roller coasters at the park, Patrick’s’s chasing characters. He loves to see names written and so he loves collecting autographs. I can’t help but contrast the way he made sure every nurse, CNA and doctor who entered his room wrote their name on the whiteboard when he was little. He’s always loved names. I think I prefer chasing autographs in the park, though.

Patrick doesn’t remember his wish trip. He doesn’t remember wishing. One of our regrets in his making that wish was that he was too young to understand it. We were so sure that if he didn’t wish, the opportunity would pass.

So ten years later, we offered him a chance to wish. Actually, first we offered to take him back to Disneyworld and show him where he’d gone for his wish trip. But Patrick didn’t want to relive a wish he didn’t make. He wanted to wish for himself, and his wish was Disneyland.

Yeah, Patrick isn’t looking at the camera. This photo is all about the shirts.

It’s been ten years and he’s looking forward — Living forward.

We have had some good moments this year for looking back. Through the support groups I work with, Patrick’s been starting to connect with other patients with short gut and intestinal transplants this year. He’s nervous about it, but I can tell it’s helpful for him to be a part of that community, too.

I also had a very tender moment at the Oley Conference this summer where I talked with an adult transplant patient. She told me about her relationship with her donor’s family and I had a chance to express to her my deep gratitude for Patrick’s.

There really are no words for that. My heart is all tangled up in the depth of their loss and the magnitude devastation turned to beauty. Every additional year, I marvel more at that gift of life. Patrick’s life and ours are forever changed and we are forever grateful.

What an amazing ten years it has been!

From hospital regular to completely lost in hospital halls. From a backpack full of TPN to pockets full of art supplies. From unable to eat to snacks scattered all around the house. From time is running out to we can’t wait to see what the future holds.

And also – when did I become mom to a sixteen year old?

Make-a-Wish anniversary and Star-raising ceremony

It’s been one year since Make-a-Wish Utah granted Patrick a trip to Disneyland. When I look back, in some ways it’s hard to believe a year has passed. But mostly, that seems like an eternity ago. So very much has changed in a year.

I’ll be honest. We have known for most of Patrick’s life that he was eligible for a wish. You don’t end up on a transplant list, really, unless your condition is considered otherwise terminal. But we were trying to put that off as long as possible. We wanted Patrick to understand that he was being given a wish. We wanted it to mean something. To not feel wasted on some passing childhood interest. And, more than anything, to be something he’d remember doing.

But two years ago, early in September, Patrick’s central line clotted, sprung a leak and was infected. They had to pull it, but then the surgeon couldn’t get a new one into place. We informed the transplant team of the difficulty. And they took his name off of the transplant list. Without a place for a central line above his heart, the transplant surgery would be impossible.

Patrick in recover after having a line placed in Omaha September 2013

We’d known that scarred veins was a problem nutritionally. But we didn’t realize that it made the transplant surgery impossible. And we realized that we were at the end of a road.

The transplant team told us to get on a plane right away and we flew out to Omaha where some very brilliant and very brave doctors managed to get a new central line in place. But now we knew. We were that close to losing the only treatment option that didn’t end in Patrick eventually running out of good veins and starving to death.

And so – we made a palliative care and hospice plan. And we put in a request for Patrick to Make a Wish.

A year later, we headed to Orlando, Florida. That week was one of the most magical in our lives. We stayed at the amazing Give Kids the World Resort. We were given the royal treatment at Disneyworld and Universal Studios. We chased down characters for Patrick to meet. We rode roller coasters.

In the village, we celebrated off-season Halloween and Christmas, rode ponies, took carousel rides at almost every meal. We ate ice cream for breakfast. We ordered Patrick’s his first whole pizza. (Made entirely allergy safe and delivered to our door.) We raised a star in Patrick’s honor.

There is no way to describe in words what a wish trip is like. Honestly, other wishes sound cool. But the reason this one is so popular is that it is the ONLY thing like it.

Every child who is granted a wish by our chapter of Make-a-Wish raises a glass star to the ceiling of the Make-a-Wish building. Family and friends are invited for a special ceremony.

We never imagined that, before we’d be home long enough from our trip to schedule the star-raising ceremony. Yet, found myself on the phone with Patrick’s wish granters the day after his transplant telling them just that. We’d need to reschedule.

Because of recovery time and immune suppression, we actually didn’t get around to that star-raising party until just last month. The experience was kind of surreal.

IMG_20150819_185627 — Patrick, one of his wish-granters, and his McQueen and Mater cake.

Being so much later, it was a bit nostalgic to be back in that building. They took Patrick’s guests on a tour of the building like the one we’d received when he made his wish. And then, they let him use his magic key to open the wishing room in their castle tower. We reenacted a bit for them what had happened as he made his wish.

IMG_20150819_190014 — Decorating his star

When Patrick made his wish a year and a half ago, they invited grandparents and parents to make a wish on his behalf. Brian and I made what we felt were practical wishes.. For Patrick to live a happy and full life. (Knowing that it might be short.) Grandparents wished for Patrick to receive his transplant. And, honestly, I thought to myself, “I’m so sorry we’ve misled you. Patrick has waited too long. He’s been listed for most of his life. Almost a year and a half at the center that had promised a match before a year was over. It’s too late. That is why he is making this wish.”

And yet, last month there we were… standing in that same room. Patrick free from IV’s and most tube feeds. Having just gorged himself on McQueen cake. Transplant done. In essence, made whole.

I am a witness that prayers are answered. Miracles are real. Wishes come true.

Because we live in a mortal world where test and trial are necessary for our growth, that doesn’t mean that things are perfect. Perfection is something for the next life. But God’s power is very, very real.

We owe a great debt of gratitude to the wonderful people at Make-a-Wish for the unbelievable gift that they gave to us. To the angels at Give Kids the World to helped to make it come true.

Patrick decorated a glass star and then used a string and pulley to raise it to the ceiling. Fitting his style, they said he raised the start faster than any child they’ve ever seen. Almost not giving time to notice the lyrics to this song that they played. Almost. Which is good, because if you were listening it brought tears to your eyes.

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you.

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do.

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Suddenly, it comes to you
When you wish upon a star
Your dreams come true

Mom’s Wish Trip Recap

I loved reading Brian’s retelling of the events of our wish trip. I’m so glad he was able to capture those memories and share them with you.

It is very strange to come home and be right back to normal life. Life where things are too busy to spend time telling the stories of the Wish Trip that I wish I had time to tell. I’m looking forward to our star-raising party for just that opportunity. But for now, I’m gonna grab a moment and tell you what I wish I could tell you face-to-face.

I wish I could tell you how different it was to travel with everything planned out and taken care of for us. We travel a lot. But this time, someone else made sure that we had what we needed, that we knew were we were going, that we always had a chance to be fed. Give Kids the World does exactly what it’s name says. But what the name doesn’t say is that they wrap up tired, worn-down parents in their arms and do all they can to lighten their load and make them feel special, too.

And they give you the best gift in the world in giving you a chance to witness joy on the face of your child over and over again. That gift is so precious, especially to parents who have seen their children’s faces filled with pain and worry and fear many more times than is fair to any child.

Every night, after giving Patrick his melatonin and tucking him into bed, I’d lay next to him while he fell asleep. Every day, he’d relive the excitement of the day. We’d relive rides and retell the conversations had with the characters we met. One very special evening, after meeting Spiderman, Patrick and I had a good 20 minute heart-to-heart about what superpowers are and what amazing thing each superhero can do. Describing “web-slinging” to Patrick and seeing him overflowing with excitement at the idea… Yes, that is one of the precious moments I hope I never forget.

I could tell you how amazing it was to receive the same magic treatment at each theme park, too. We didn’t go in assuming anything was owed to us. A quick jump to the front of the lines seemed like more than enough special treatment. But most places we went, they went above and beyond that. We were told not to expect to skip lines for characters, and yet when Patrick wanted nothing more than to meet Donald our first day in the Magic Kingdom, there were the Disney Castmembers showing us through the back entrance right to Patrick’s favorite character. Or the morning we decided to pop in and see if there were any cancelled reservations at the month-long-wait-list Beast’s Castle restaurant and they handed us a piece of paper and told us to go right in.. At SeaWorld we were told we’d need to buy a tray of fish for me, but when we tried to do so we were informed that we were their “guests” today and not only did we get that extra tray of fish, but a trainer who commanded the dolphin to jump right up so Patrick could touch it. And in Universal Studios they were determined to add to our experience. Not only did we get to turn around and ride the same ride again when Patrick wanted more, and were given special meet and greet opportunities after the animal show… But if someone met us and didn’t know anything more they could do for us, they’d make sure to give us a hint about some way to sneak in a little more.. like where to sit on the parade route for an uncrowded extra-long show by the cast of Dora.

And speaking of Dora the Explorer… in order to meet both Captain America and Dora and Boots, we virtually ran in our parkhopping and, if the Fitbit was right, covered a couple of miles in that hour. But it was well worth it to see the look on Patrick’s face when Boots walked out in front of him. And to see him flexing his muscles with his favorite superhero, too? Yeah, sometimes we parents do crazy things for our kids.

Like spending every day for a week out walking miles (about 10 a day) in the crazy mix of hot humidity and afternoon thunderstorms that is Florida’s daily weather. I don’t think a Utahn can properly prepare themselves for that kind of humidity. But, why didn’t anyone warn me that we’d need ponchos? And a game plan for when lightning closed everything. I don’t see myself moving to Florida anytime soon.

We were amazed that Patrick stayed healthy. Our second day, we were afraid that wasn’t going to hold. He had a cold when we left our house and as we went to lunch at Universal Studios, he got really grumpy and started rubbing his ears. We were contemplating which nurses we could call back home and whether or not the first aid station would be able to help him. Thankfully, after his nap, his ear seemed better. He stayed healthy. I caught his cold, instead.

Brian didn’t tell you much about the last days of our trip.

We left Give Kids the World on Saturday morning. Brian drove to the airport to trade in our rental car. (Make a Wish only rented our car for the length of our wish trip, so we needed a different car for the days that we extended to visit family.) Meanwhile, Patrick and I stayed behind to pack up the room and give Patrick one last chance to play on the Candyland playground.

Leaving the village was bittersweet. We visited to see Patrick’s star on the ceiling of the castle and snuck into the Amberville station (train station/arcade) to play with the remote control boats before leaving. (When Brian first saw them, he said it’d always been a dream to play with something like them. Moms and dads can have wishes granted too, right?) Give Kids the World will always hold a special spot in my heart. I think we’ll spend our lives looking for ways to give back.

It was so nice to go spend some time with Brian’s aunt and uncle. We were exhausted after a week in amusements parks. So to go and just sit, visit, play with toys, watch Women’s Conference on TV (The Church of Jesus Christ of Latter Day Saint’s boasts the largest women’s organization and the largest conference for women in the world), and just rest for a few days …that was heaven.

Sunday, we slept in, wore our pajamas till well past breakfast, and watched Dora the Explorer. Then we took a nap, went to church, and in the evening all of Brian’s cousins from the Florida area came for dinner.

Dinner was wonderful chaos with kids everywhere and food overflowing. Brian’s cousin taught Patrick to play duck-duck-goose. He thought this was hilarious, except that instead of running for his spot in the circle, he’d just yell “Goose!” and run away! I couldn’t help wishing that this family didn’t live so far away. He was just so at home with them.

Monday morning, we packed up once more. Patrick’s gift haul filled an entire large duffle bag by itself. We put on our matching Minion t-shirts and then went to Silver Springs for a glass-bottomed boat tour. It was a lot of fun, even if we didn’t see any gators or monkeys. Patrick, however, didn’t know what to do when that was the only ride planned for the day.

We drove back to Orlando and grabbed lunch at Giordano’s Pizza.. a favorite restaurant of mine from my days in Chicago and not found anywhere outside Illinois.. except in Orlando. Mmm. Deep dish pizza!

It was starting to rain again as we arrived at the airport. We thought we were in the clear when they let us board the plane, but then lightning started again. We waited an hour before finally being able to take off. Amazingly, Patrick handled this pretty well. Thank goodness for the tablet.

It was late when we made it home. The air had that perfect Utah fall chill in it. Thank goodness for that. It helped ease the transition back home. Because face it, as good as home is.. nothing compares to a wish trip. We were glad to be back to normal, but very, very sorry to see it go. This is the kind of experience that just changes you. You want to tell everyone about it.. but there just isn’t time to put it all in words.

Patrick talked about nothing but his trip for most of the next week. At least, until his favorite friend at school fell and had to get stitches in her head. His head’s now full of friends and school, which is also wonderful. But we talk about his trip still a little every day.

Here are some pictures taken of us by Give Kids the World and Disney.