Sunday, January 20, 2013

The Storm

A friend of mine asked the cancer moms for notes to send to someone she knows whose child was recently diagnosed with the same cancer as Matthew. I put my note together, and then decided that this is something I'd like to have on my blog. Maybe a stranger will stumble across it in a time of need, or maybe it will just be good to remember later in life that this was how I felt now. Either way, I really liked the way it turned out, so without further ado:

Dear family, I know that I'm a stranger, and it may be strange to receive such personal words from me, but I'm writing them anyway, in hopes that they will help you.

My son, Matthew, was diagnosed with Pre-B ALL at the age of 3 1/2. He's 5 now, and we're still plugging away at treatment. At first, things were really hard, and I won't lie, they still sometimes are. But just like in weight training, when you do hard things, they get less hard. Trust me on this: you can do hard things.

People will tell you you're strong, and that might feel frustrating because you'll feel tired and worn down. Just bear in mind, you're doing what any loving parents would do, given your set of circumstances. People will admire you for doing it, and that's okay. They could never understand, unless they had been here themselves, so try and remember that those comments usually come from a place of respect for you, even if you feel like they are misguided.

I have a good friend who went through treatment for Ovarian Cancer at the same time as Matthew's heaviest treatments. One day, she told me that she just wanted to be done so that her life could go back to normal. The thing is, it never will. Everything changes, even after treatment. You will view the world through different eyes. My friend didn't like hearing that at the time, but later said that it helped her to look forward with faith that she would be able to make something special out of her life as a survivor. A cancer survivor is defined as anyone living past their diagnosis, so your daughter already is one. Cling to that. She is a survivor and a fighter. I'll never forget the first time someone called my son a survivor. It's a powerful word.

I want to end with this. One of my favorite quotes talks about a storm. I view cancer as a storm, and I wholeheartedly believe it has something to teach us. Through the trials we endure during this time, we will emerge as stronger, more courageous people. And at some point, after the storm ends, we will find a place of peace and calm.

"And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about.”

― Haruki Murakami, Kafka on the Shore

Even though you don't know me, please know that my heart goes out to you. This year will be hard, but every day, your family will grow stronger.

~Wendy Burr. Mother of Matthew Burr - cancer survivor, and warrior.

Monday, January 14, 2013

Half Way There

Tomorrow, Matthew will go in for his monthly oncology appointment, and it's really just a standard monthly visit with IV chemo. But tomorrow is sort of a milestone, because it marks his halfway point in treatment. He has been in treatment now for 19 months, and he will be in treatment for 19 more.

If that sounds like a lot, that's because it is. From my experience, most cancer treatment protocols are complete in 8-10 months. Matthew's treatment will consist of a total of 6 phases of treatment, the first 5 of which did, actually, fall within that time frame, and the last one is called Maintenance. So, it's similar, but the Maintenance has turned out to be a bigger deal than I thought it would be. He gets chemo every day. He hasn't had a break from it since Spring. That's unusual, because most cancer treatment protocols call for a break every month or so. The constant poison is protecting him from relapse, yet is slowly damaging parts of his body in ways that I'm not sure he'll ever really recover from. Only time will tell. It's really hard to give him medicine that hurts him like that and have no choice but to keep giving it.

I've seen a lot of families go through diagnosis, treatment, and ring the bell - an emotionally charged ceremony indicating that you are done with treatment. I love those families, and I am so happy that they are moving on with their lives.

I've also seen too many families lose the fight. It makes me sad and angry. I hate cancer so much. I hate watching my friends take their babies home to die. I hate imagining what it would take to make peace with that. And every time, my resolve to act is heightened.

19 months has really changed our family! Really, everything has changed since that awful day. We've had the lion's share of trials heaped on top of the cancer trial, but we're stronger and learning from it all every day. I wonder what on Earth we'll be like in 19 more months!

In that time, I expect to see a few more waves of families come and go through my cancer group. The girls who have been in treatment with Matthew all along will finish up this summer. New moms will come, treat their kids and go. More relapses and losses will take place. Hopefully, 19 months will be the end of it for Matthew. Hopefully, he will be able to move on with his life and have a normal childhood, free from the heavy worries he has now.

As for me, I will be a cancer mom for life. I am forever changed. In the beginning, I used to say I could either let it make me better or bitter, and that's still true. Some bits of it still make me feel bitter, and I'll have to continue working to get rid of those feelings, but some parts of it have made me a better person.One thing is for sure, I am now an advocate.

Thank you for supporting us through the last 19 months. I have started thinking of the first year as our "No good, very bad, terrible, horrible year." Mister Rogers said his mom told him to always look for the helpers during the hard times. She was right. There have been angels with us all along the way, both visible and not. I am grateful to all of them. To all of you.

Let's hope that the next couple of years can be the "Peaceful, joyful, happy time, having fun years."

Florida, Part 2





They say better late than never, right? Well this is really late, but here we go anyway.

I've been reminiscing all morning about our trip, and decided it was time to finish the monumental task of blogging about it. The hardest part is pictures! I can write all day long, but we need some good pictures.


In order to help my memory, I went back through my Facebook posts from July. I wanted to be sure I hate the days correct. Our trip went from Monday, July 9th through Sunday, July 15th.

I already blogged about Monday. That was in Florida, Part 1. The whole day consisted of travel, and getting from Utah to Florida was quite an adventure for us! I'm glad I wrote about it when it was still so fresh on my mind. The parks were awfully memorable in their own rite, and I think I'll get it all down okay. It's fun to remember back on it.

It was truly the trip of a lifetime. The thing about that trip is that Make-A-Wish, combined with Give Kids The World and all the parks involved, made sure that we wouldn't have to spend a penny of our own money if we didn't want to. They fed us, housed us, gave us a vehicle and gas money, they even gave us souvenir money. That could sound so frivolous, but when ALL of your money goes to bills, living expenses and medical expenses, eating out and buying fun things is really hard to allow yourself to do. A lot of people wouldn't be able to go on these trips if they weren't truly all expense paid. What it did for us was priceless. It gave us one full week without worry. We didn't worry about cancer, money, appointments... we just did what we wanted to, when we wanted to, and we didn't have to worry about consequences. If you ever wonder what good a trip will do for a family going through a medical crisis, that is it, in a nutshell, for me at least. By sending them on these trips, Make-A-Wish is removing worry from their bitter cup for one whole, beautiful week. A lot of wounds can heal in that much time.

But I digress. Let's talk about the parks! First, I'll explain what passes we had.

  • Disney World: There was a 3 day park hopper pass for Disney World. This gave us 3 days to visit 4 Disney Parks: 
  1. The Magic Kingdom (this is what you picture, when you think of Disney World, with Mickey's Castle, the parade, the fireworks, the Small World and Teacup rides.... etc),
  2. Epcot (focuses on technology and culture - this is the park with the giant golf ball at the front.)
  3. Disney's Hollywood Studios (this is about live shows and virtual rides)
  4. Animal Kingdom (basically a great, big zoo with rides)
  • Universal Studios: There was a 2 day pass for Universal Studios, which consists of two parks, accessed by the same main entrance:
  1. Universal Studios (this park is exciting - full of huge roller coasters, and universal characters, like Spider Man)
  2. Islands of Adventure (this is made up of five "islands" which are themed sections of the park. One of them - and obviously the most important, if you ask me!!! - is the Wizarding World of Harry Potter)
  • Sea World: There was a 1 day pass for Sea World, which is mostly shows, with a few rides.

What that comes to is 7 parks in 7 days, plus the time you need for traveling to and fro. It was BUSY! But so wonderful and fun.

Day 1: Monday - it was all travel and rest time.

Day 2: Magic Kingdom.

I went to orientation, where they explained to us how we would go about using all of the passes they were providing us with. Then we started big - with Disney's Magic Kingdom.

That was such a fun day! That park is made up of all these zones. When you first walk in, you're on Main street, which is all shops and restaurants, and at the end of the street, in all it's glory, is Mickey's Castle. There was a parade going on right as we walked in, and it started the mood off just right! I have an awesome video of it, but I cannot, for the life of me, get it to load. I may figure that out at a later date.

Anyway, after the parade, we walked straight toward Mickey's Castle, which is a great way to start things off. It really gets you into the feeling of the magic of that place.




After that, the park is sort of divided into "zones" for lack of a better word. There are, Tomorrowland, Mickey's Toontown Fair, Fantasyland, Liberty Square, Frontierland, and Adventureland.

We had a Give Kids The World button and a special pass on a lanyard, which allowed us to skip the lines. We either went in through the fast pass lane, or the handicap entrance. Because of this, we were able to quickly work our way from one ride to the next. We went without any rhyme or reason from one thing to the next, but we got tired really fast, and realized we were being rather inefficient. So, we got a map and found the attractions we wanted to see, and went to each one we liked in each zone until we were done.

Without that magic button, it would have taken up all 3 days of our park hopper pass just to do Magic Kingdom. It is BIG! But we did it in one day, and we went on every, single ride we wanted to go on. We ate lunch on Main street, and we relaxed in a VIP lounge that only Wish Kids and their families have access to. We wanted to stay for the fireworks, but in the end, we were all WAY too tired! We left half an hour before the fireworks were scheduled to begin. Oh well. Maybe next time.

Here are some highlights from Magic Kingdom:




Can you believe they cut the bushes to look like characters??


Stained Glass in the Aladdin-themed VIP Lounge.

The beautifully framed art in the lounge comes from the movie.

It's a Small World. Look at the wonder on his face.

Track cars. Allison was having a good time. Matthew hit his face on the steering wheel when his car (with Dad) stopped too fast. He remembers that bonk pretty vividly.




Day 3: Disney's Hollywood Studios

Sadly, we tried to enjoy this park, but the rain, combined with nearby lightening was shutting down all the shows. We went to one, or maybe two, and then they shut a show down right in the middle of it. We went to the car to wait it out, or decide what to do, but it was torrential rain. So we went back to the villa and enjoyed Give Kids the World for the day, instead. We were all pretty disappointed - Justin most of all.


I posted this on Facebook that day and captioned it with a single word. "Lame."


Day 4: Epcot Center and Animal Kingdom

Armed with 6 umbrellas, we decided to finish off our 3 day park hopper passes this day. Epcot and Animal Kingdom are both pretty easily half-day attractions.

We started with Animal Kingdom. By now, we had our method down. We got our map, plotted out the whole park, picked the attractions we wanted, zipped to them, and moved on. In all, Animal Kingdom only took us a few hours. It was kind of like a huge zoo with a few rides and a roller coaster or two. Generally, for big roller coasters, Matthew and I sat them out, and Justin went with the big kids. My vision was still a mess at this point, and my balance was questionable, so I opted out of most of the rides that would mess with those senses.

I think Animal Kingdom held the first big roller coaster. The big kids had been so patient while we did so much little kid stuff for Matthew. Matthew was exhausted, and it took the whole family to care for him. We had a stroller for him because he didn't have the energy to walk that much. The roller coaster in Animal Kingdom was awesome, and a highlight, especially for Allison. She saw it on a billboard, and really looked forward to it.

When we finished there, we moved on to Epcot. By then, it was afternoon, and we were all pretty tired. We chose about 5 attractions and zipped around to them. There were some really cool rides there.

The one inside of the big golf ball is cool. It shows a history of technological advancements of mankind, from tools to the internet, and guesses beyond. When Justin and Matthew sat down in their car for that ride, Matthew started pushing buttons and set them up to listen to the whole presentation in Swedish. Justin was not pleased.

There was another ride there that simulates flight, and you travel by video all around the country to see all these cool sights. It lifts you up in a big row of seats, and moves you to and fro, and jiggles and bounces through the whole ride. It uses a 3-d presentation, and air to make it realistic. It was AMAZING. We had a lot of fun on that ride.

Here are some highlights from that day:






The petting zoo was fun, and thankfully had an awesome hand washing station to use before moving on.





Matthew and I relaxed by the water while the big kids and Dad went on Allison's roller-coaster.




The Epcot golf ball. Pictures don't do it justice. It's really cool!


One more, from a closer look.





Day 5: Universal Studios

Universal Studios was quite possibly my favorite. I'm totally nerding out here, but it has the Wizarding World of Harry Potter, how could it NOT be my favorite?? I will refrain from loading the blog up with those pictures, because it's my favorite, not Matthews. But let's back up. The thing the kids loved about Universal Studios was that they FINALLY got to go on some awesome roller-coasters.

When you ask Mikey what the highlight of the trip was for him, he'll tell you it was the Incredible Hulk roller coaster. I wish I had taken a picture. I took one look at it, and knew I would opt out. I'm such a wimp. Justin, Alaina, Allison and Mikey went on it, though, and they loved it so much they went twice. In the meantime, Matthew and I checked out some Spider Man shops and watched some amazingly decked out characters come and go. I am so bummed out that I didn't take better pictures of them, either, because they looked like they had just walked right out of the comic books.

So, Universal Studios consists of the classic Universal Studios park, which is more about the shows and movies, and then the Islands of Adventure park is set up in zones, or "islands" with themes.

They are: Marvel Superhero Island, Toon Lagoon, Jurassic Park, The Wizarding World of Harry Potter, The Lost Continent, and Seuss Landing.

Each one is so much fun, all on its own. There is a Spiderman ride that is SO cool! It was in a car (sort of) that jiggles you around, and you can't tell if you're really moving or not. It projects the storyline onto a wall in front of you, and it's done in 3-d. They use heat, wind and even water to make the ride as realistic as possible, and they send you through a Spiderman type of story, where he saves you from the bad guys. We all loved it because it was SO COOL! It was a little bit much for Matthew - kind of scary for him. But he was okay.

In Toon Lagoon, they went on one of those water roller-coasters, and got soaked, while Matthew and I waited. That was the only one that it was hard to wait for them on, because I was SO HOT! Then, we went to the Harry Potter rides and I geeked out in a way I'll probably never be able to again. We tried butterbeer, and saw all the shops on Diagon Alley, and took pictures in front of the castle.

There was a ride that was a lot like the Spiderman ride inside of the Harry Potter castle, and that one was my favorite. It used the same techniques to immerse you, but you were flying on a broom stick, and fighting dragons, among other things. I LOVED it! I waited with Matthew as the others went on a pretty intense roller coaster there, too, and then we moved on.

There was another water ride that soaked us all, and Justin's wallet got so wet that the "people dryer" machine wouldn't accept his money - it didn't recognize the denomination when it was so wet!

I loved the Dr. Seuss island, too. It was really authentic, and Matthew was able to go on a lot more of those rides. By then, everyone was tired enough to slow down and enjoy the kid rides a little bit.

Moving on to the regular Universal Studios park was a little bit overwhelming, because we were so tired, but we found some cool stuff there. Justin and the girls (Mikey opted out) went on this ride that goes straight up for 5 stories. You get to choose your music style and it plays your music for you throughout the ride. In the meantime, the boys and I watched another parade. This one had Spongebob, and Matthew was thrilled.

We saw a show about Shrek that was fun, and went on a Despicable Me ride. On this one, there was a broken seating pod, which we sat in, so they asked us to get off the ride and wait 'til the next time. But the next time, they forgot to load one less pod, so we waited again. In the meantime, I was asking the ride operator if there was anything they'd do for Matthew in the parade because he was a Wish Kid, and he said, "No, but I will!" and he went and got these guys that were dressed up as Minions to come and play and dance with Matthew. He was nervous about them, but remembers it really clearly. He still asks Justin all the time if he's Justin's minion.

Here are some highlights from that day:





Even the garbage cans and street names are whimsical in Dr. Seuss's island.


Sneetches IN!


Waiting to get onto the Despicable Me ride.

Matthew and the Minions.

He warmed up a little bit to them...

Aaaand a hug...



Insane roller-coaster.


Okay, I AM going to geek out a LITTLE bit...


Hogwarts Castle (cue angelic choir).



Day 6: Sea World

By this point, it's safe to say people can see why we'd be exhausted! We could barely force ourselves to go anywhere. BUT we wanted to see Sea World, and what else were we going to do with our day anyway?

So, we packed up and headed to Sea World. The thing is, Sea World is almost all shows. You can't really skip a line for shows the same way you can for a ride. That presents a problem in that we had a lot of HUGE lines to wait in (remember, it was the middle of July in Orlando... it was hot, sticky and CROWDED!). Also, Sea World wouldn't let anyone skip a line if they weren't with the Wish Kid, meaning the big kids had to wait in a 2 hour line if they wanted to go on a roller coaster. So, we fizzled out on Sea World.

We did do two really cool things while we were there, though. We fed the sting rays, which was really awesome. It looks like their mouth is in the front, but it's really underneath them -- like on their belly! So, we were trying to feed their faces, and it wasn't working. Then a trainer came and showed us, and it was really cool to feel them swim over us and snatch it out of our hands.

Then we went to the dolphin show. I think that show was a highlight of the trip for all of us. Dolphins are SO COOL! They always look happy, and they are so friendly. They'll do tricks for you if they think you're going to feed them. We got to touch them and pet them and feed them. The trainer brought us extra food and showed us a lot of little extras because Matthew was a Wish Kid. It was something we'll all remember for the rest of our lives. I'm really glad we dragged our tired butts to Sea World.

After the dolphins, though, we left. We were tired. We played at Give Kids the World for the day, and enjoyed the pool and the attractions there.

Here are some highlights of Sea World:

Trying to feed their faces...


Our first peek at a dolphin...


They started showing off.


They ALWAYS look happy!


Feeding the dolphins

Dancing for a treat.


 So friendly and trusting.




Day 7: The Ocean and the trip home.

This was our last day in Florida. Our plane didn't leave until afternoon, so we decided to check out early and go see the ocean. We didn't stay long, but it was a really fun little day trip. Cleaning up was crazy! We were covered in sand and water, and we went into a grocery store bathroom to change, one or two of us at a time. We loaded the wet clothes into plastic grocery bags, shoved them in the luggage and headed for the airport.

Here are some highlights:

Look at the cruise ship in the distance!

Playing in the water.













When Matthew's treatment was at its hardest, and he felt the worst, he always asked to go back to the beach. He remembered our trip to the Oregon Coast, and he pined for the ocean. When we started talking to him about his wish, he wanted to meet Mickey, but he also very specifically wanted to walk on the beach. This picture encompasses what Matthew needed the very most during the darkest days of his little life.

Thank you Make-A-Wish. Thank you Give Kids the World. Thank you Disney World. Thank you Universal Studios. Thank you Sea World Orlando. Thank you anyone who has contributed to any child's ability to take one of these amazing trips. They are filled with the memories of a lifetime.