Donna Day

My Tribute to Donna, Cancer Moms, and Too Many Children Who Have Died

This post will really be out of the norm for Matthew's blog. Typically, his blog has been more of a journal to keep family and friends updated on his health, but this entry is for a cause. Before I get into it, I will update Matthew's health.

He is doing well. Maintenance is sort of like a marathon. It just goes on and on. His treatment has been so long now, I barely remember what it was like to take care of him before. I am actually afraid of what it will be like to be discharged from oncology, because I don't feel like a regular pediatrician will have enough expertise to take proper care of him.

At first, Matthew's treatment was like a sprint. It was really hard work. All the time. We were breathless and exhausted. Like the rabbit - hurrying to win the race, but too tired to reach the finish line. Now, we have slowed down to a steady jog, and worked some of our old life back in. Like the tortoise - slow and steady wins the race.

We give him chemo in the form of pills every day, with a handful of extra pills on Thursdays. In order to ensure he gets them on an empty stomach with no dairy products for 2 hours before or after, we wake him up at 11, before we go to bed. He can sit up and take up to 14 pills in his sleep. He goes in for a check up with his oncologist once a month, during which he gets an intravenous dose of a chemo called Vincristine, and for the 5 days following that, he takes high doses of steroids to maximize the effectiveness of the Vincristine. Once every 3 months, during his monthly checkup, he also gets sedated for a lumbar puncture (spinal tap) and they administer Methotrexate, another chemotherapy, into his spinal fluid, so that his brain will receive it. All of these things work like clockwork, and have been happening for almost a year, now. They will continue until September of 2014. There are side effects, but most of them are relatively minor. Sometimes, they're upsetting for a mother to watch, but when put into perspective, I can be patient and remember that there is an end date in sight. This isn't forever. So far, it doesn't seem to have caused any damage that won't eventually heal. Matthew is truly one of the lucky ones.



Now. Let's talk about Donna. Donna was a beautiful little girl who died of a brain tumor called Papillary Meningioma in 2009. Last night, I talked about her mom, who blogs under the name Mary Tyler Mom, on my Facebook page. Here's some of what I said:

In 2010, she wrote Donna's cancer story for her 120 Facebook friends. 1 post a day, spanning the month of September, and spilling into October, each chronicling a month of Donna's life from her diagnosis to her death. 

In 2011, she published Donna's story on her Mary Tyler Mom blog. This is when I discovered her, trying to make sense of what was happening to my family. 

In 2012, Huffington post picked up the serial, giving Donna's story a massive, national audience. Now, her Facebook page, alone, has more than 11,000 followers.

I'm honored to say that Mary Tyler Mom has asked me to participate in some writing projects with her. I won't give away the projects she's planning, but I do want to talk about tomorrow. 

Tomorrow is Donna Day. Many bloggers are coming together to write their stories about how their lives have been affected by childhood cancer.

If you'd like to read Donna's Cancer Story the link is below. 

Donna's Cancer Story.

I said last night that it's hard, but worth it. I wasn't kidding. It gave me hope during some of the darkest days in my life. If I could read it, knowing the whole time that Donna would die in the end, just 2 short months after my 3 year old child was diagnosed with cancer, and feel uplifted, I promise you can too. It will be worth your time. Sometimes, people told me I needed to lay off the blogs, for my own good. Sometimes, people really worried about me. But it was like lancing a wound. There is truth here.

This story tells the truth.

That is what I admire so much about Mary Tyler Mom. We don't always see eye to eye, but I admire her so much because she always tells her truth. She doesn't sugar coat it. She is so brave.



I'm going to switch gears now, and talk for a minute about my cancer mom friends. If you know me very well at all, you've probably heard me talk about them, but we keep our group pretty private. I've talked with them, and received permission to write about them. We want to share a message of hope as well.

Our group started with one mom. Her son, who was barely more than a baby, was diagnosed with cancer, and she kept hearing from people that so-and-so's neighbor's daughter had cancer, or so-and-so's nephew had cancer. She talked with a few of them, or emailed with them, and eventually they connected on Facebook. They started arranging cancer mom dinners and playdates for the kids. When your child is immune compromised and can't be around other kids, it can be so lonely! But what about other immune compromised kids? Playdates with them feel a lot safer. Their parents KNOW the rules. They live the rules.

This mom started meeting more moms, and they started meeting more moms, and I'm sure you can see where that led. Our group, The Utah Moms with Cancer Fighting Cuties, now has more than 205 members on Facebook. We meet regularly for dinner, we have playdates in the summer, and maybe the best thing is that lately, we raise money for childhood cancer research. Like Mary Tyler Mom, what started small has grown exponentially into something no one ever expected, and we are making a difference.

Our charity of choice is CureSearch, but, at least in my mind, it is a close toss-up between them and St. Baldrick's. We have a lot of moms who have and still do participate in St. Baldrick's events as well. If I ever ask you for research money, it will most likely be for one of those two.

The cancer moms have helped me in so many ways through this journey. When I'm scared, I go to them, when I'm excited, I go to them, when I'm confused, I go to them. They inspire me and uplift me, and make me feel human and normal when I often feel separate and labeled by the rest of the world. In the 21 months since Matthew's cancer diagnosis, a lot of moms have begun and finished treatment for their kids (most protocols are more like 6-8 months long). I have seen many families endure bone marrow transplant, and radiation therapy, which are both particularly brutal, and too many children have died.

Our Facebook page is a living, breathing entity. We have a collective mood and we support each other fully. When there is news of a relapse, there is silence, with the exception of that one thread, typically for several days. When a child dies, we all mourn, even if we never met the child or the mom except on Facebook. When someone is waiting for news after a scan or a test, we hold our collective breath until there is an answer. Good or bad, we deal with the news together. Normal social boundaries are not the same among us. In Utah, there are typically a lot of social dividers based on things like religion and where a person lives, among other things, but those things are left at the door in our moms' group. We transcend that. We all have something to bring to the table, and we talk freely - no holds barred.

There are blood drives and fundraisers and so many positive messages shared. But the best thing we do is our CureSearch walk. In 2011, 8 moms came together, and rallied 40 more. These moms each formed teams. These teams each walked in honor of a child who is facing or has been faced with cancer. Some teams honored multiple kids. They did this mostly on their own. CureSearch does not have a lot of overhead, which translates to very little help from them, compared with other similar charities, but also translates to almost all of the donated funds being used for the intended purpose. In this case, it's for childhood cancer research. The goal that first year was $50,000, and the Salt Lake City walk raised $72,000.

In 2012, those 8 moms and 83 teams set a goal to raise $90,000 and raised $170,000, 100% of which was donated straight to the Children's Oncology Group for research - Curesearch didn't keep any of it. That day was filled with so much joy! This year the goal is 90 teams and $190,000.

I am proud to call these women my friends. It's important to understand something here. We don't do this to improve treatment for our children. Our children already have cancer. Their treatment course has already been decided, and research isn't going to change that, unless a miracle, overnight cure is somehow found tomorrow. We all know that's not what we're aiming for. We want better treatment for the next group of kids.

Matthew shouldn't have to endure 3 years and 2 months of chemotherapy. By the time he's done, it will have been nearly half of his life. I have constant fear of relapse, secondary cancer and late effects. Even if they cure his cancer, he may suffer for the rest of his life because of what we had to put him through to accomplish that.

My friends shouldn't be watching their kids go through cognitive, speech, or developmental delays because of the chemotherapy. People should not have to sell all of their Earthly belongings and move their families to another state in search of treatment, living in a halfway house, a Ronald McDonald House, a hotel, a camp trailer or a tiny apartment with no heat.

Donna shouldn't have died. My friends shouldn't be burying their babies and trying to make sense of it.

Okay, so now what? I can wallow if I want to. Everyone would understand. Mary Tyler Mom could certainly have wallowed. But what good would that really do? It doesn't change anything. Donna died, and nothing is going to change that. Matthew has cancer, and nothing is going to change that, either. I can either wallow and become bitter, or I can act on it and use it to become better. I want to be a better person. The reason I'm writing about all of these women is that I am inspired by them all to be a better person!

We don't raise money for our kids. It's imperative that you understand that. Our kids are the reason we raise money, that much is true, but that money will not help our kids. You know who helped our kids? The people who did this after their kids got sick. The people whose kids died during a time when no one lived through childhood cancer. That's how this works. If Matthew had been born back when I was, he would have had roughly a 10% chance of survival. His doctor recently told me that's because he would only have gone through induction therapy - that's 28 days.

So, no, we aren't doing this for our kids. We are doing it for yours. Or maybe your sister's. Or your next door neighbors. Or your grandchildren. We are doing it for the 1 in 300 boys, or 1 in 333 girls who will be diagnosed with cancer before they turn 20. We hope that when it happens to them, they will have better options than our children did.

Now, the point of this entry today, the cause I mentioned at the start, was Donna Day. See, Mary Tyler Mom's version of the Curesearch walk I described above is an annual head shaving event for St. Baldrick's. I'm going to share with you some of her words about it:

The purpose of the Donna Day campaign is to raise $ for our head shaving event on Saturday, March 30 in Chicago.  It is our second event.  Last year's started with a goal of $20K and we raised $79K!  This year we have many fewer heads to shave and have set a goal of $30K.  Our oldest shavee is 89 years old and she is doing it with her daughter, a returning shavee for us.  WOW!
This is a link to their team page. To donate to the team, use the GREEN donate button. Any amount helps. Seriously. Anything. If you have a dollar to spare, it helps. If you have ten, that's fantastic. As I type this, their team has reached just over 41% of their goal. Just like Matthew's 1 1/2 pills a night and 14 on Thursdays, slow and steady wins the race. This is how we will improve childhood cancer treatment for the children of the future. St. Baldrick's funds more pediatric cancer research than anyone in our country, other than the U.S. Government.

They are still happy to take on shavees, too. If you're up for it, volunteer to shave your head. I hear it's the experience of a lifetime! There's still plenty of time. You would commit to shaving your head and ask people to donate to you for it. You'd have 30 more days to raise as much money as possible for the honor.

I will close with a quote that often comes to mind when I think of the cancer moms, and the community that has rallied around Mary Tyler Mom.

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."

~Margaret Mead

Perhaps a combination of some small groups of thoughtful committed citizens like ours will fund the brilliant ideas that will cure DIPG, Papillary Meningioma, Leukemia, Osteosarcoma, Wilm's Tumor, Neuroblastoma, and the rest of the childhood cancers, so that our children can look back on this day and age and think of childhood cancer in the same way that I think of Polio - as something awful that used to happen to kids. 

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.

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.

Florida - Part 1

Wow, only 2 months since the last entry! Life sure does get away from you sometimes, doesn't it?!

Florida was so much fun, and it was this amazing trip that our family desperately needed. I'm so glad that we got the opportunity to go. Thank you, Make-A-Wish! Since we got back, things have continued to be insanely crazy in our house. I still struggle with my illness (for those of you reading who don't know me personally, I lost the baby in May, and the miscarriage triggered a catastrophe in my body. On Memorial Day weekend, I was diagnosed with a condition called Pseudotumor Cerebri, and it took months for the pain in my head to recede and for my eyesight to become livable. I have good days and bad days. That's why I don't blog like I used to. I hope to do better soon. I hope to feel better soon! It's slow progress, but I'm thankful for my doctors). But now that I'm not working anymore (I was laid off August 10th), and the kids have started school, things seem to be mellowing out a bit.

Matthew goes to preschool now, just up the street from us. He loves it, so far! It's called Little School Preschool, and he talks about it a lot. Alaina is driving out to West Valley to Hunter High so she can finish her senior year at the same school. Allison and Mikey have started their new schools here in Stansbury, and seem to be adjusting nicely. I'm working on getting myself enrolled in school, too. I'll know more by November. It's funny. I was reading some old blog entries today. Back to the beginning, kind of a thing. I read a statement from myself that I don't know how pediatric oncology nurses can do a job like they do, because I never could, but I'm grateful someone can. Turns out I think I can. That's what I plan to go to school for. Maybe not pediatric, but I want to be a chemo nurse. It's amazing, the things that can change in a single year.

But I digress. I wanted to talk about our trip to Florida! This trip was just what our whole family needed. It injected joy and hope into our lives, which had gotten pretty dark and sad for a while. I'm just going to give a play-by-play, to the best that my memory will provide.

We left for our trip on a plane from Salt Lake to Minneapolis at 6 am on July 9th. I always heard you should arrive at the airport 2 hours before your flight is scheduled to leave so you'll have plenty of time to get through your baggage check and security. FYI, at 4am in the SLC airport (yes, we did that...) the only employees on the clock are the ones buffing the floors. We waited in line to check our baggage for 1 hour, when they finally started accepting baggage at 5am. They promptly told us we had done it wrong and we needed to go get a paper from a machine over there and then wait in line again. By now, the line was very long, and I was not happy. But we did what they said, and the line moved quickly, and all was well in our very tired world. I was so nervous about getting through security because of Allison's braces, Matthew's port, Matthew's medicine, etc... but it was a piece of cake. It actually went so fast that I had to grab my shoes and get out of everyone's way to put them back on.

Then, we found our gate and waited. When they started seating people, we had no clue what they were talking about, so we stood in line with all the first class folks, looking silly. We were in the last group to board the plane, so we continued to look silly until they let us on the plane. Matthew got the window seat on one row, and Mikey got it on the other. The flight to Minneapolis was uneventful, but it became clear that I am much more afraid to fly than I used to be, and Alaina hates it. Also, Matthew thinks it's "like a ride." Especially if there's turbulence. I always tell him what a superhero he is, to fight cancer so bravely, and he thinks I'm weird. But come on... a 4 year old who thinks turbulence is fun? (says the lady whose knuckles turn white from holding the chair so tight if it even gets a little bit bumpy...)

So, we landed in Minneapolis (which is really pretty from the air! Very green and lots of lakes), and we thought an hour delay would be long. Turns out, not really. By the time we found our gate, it was time for the first groups to start boarding. This time we knew our place and boarded the plan at the appropriate time. This time the girls got window seats. This flight would connect us to our destination - Orlando. The flight was a lot more bumpy. A lot. I noticed that after we took off, it took a while for the plane to even out and fly smoothly. About 45 minutes before we landed, the captain got on the loudspeaker and told us that we were going to be making a "code yellow" emergency landing. The plane has 3 hydraulic systems, and one of them had leaked out all of its fluid, so they would be relying on a backup system to land. It was no big deal, he assured us. This is the kind of thing they are trained for. But just in case, the flight attendants were going to finish the in-flight service early so they could strap themselves in tight for the landing. Oh, also, they couldn't land the plane too close to the airport, so we would be way out at the edge of the landing strips, and there would be an emergency crew waiting there for us. You know, like a firetruck, ambulance... etc. But it was no big deal, he assured us again. A few times. Once they had checked us all out, there would be a little truck, called a tug, that would pull the plane closer to the airport so we could exit the airplane.

All jesting aside, I have to give the crew of that plane some credit. It really was no big deal. They took their precautions, and the landing was fine, the tug pulled us in, and all was well. We were just about an hour late.

There was someone from Give Kids The World waiting at the airport for us. She helped us get our rental car, and gave us directions to Give Kids The World. By the time we got there and checked in, we were all exhausted. Before you get any tickets to the theme parks, you have to attend an orientation class at Give Kids The World. There was one scheduled for roughly 2 hours after we arrived. So, we decided to rest a little bit, leading up to that. Then we'd hang around the village, and go to our first park in the morning.

BUT...

I'm lame, and I slept through it. I was super tired. So, then it delayed our start the next morning. We had breakfast, and then they all had to wait for me to attend the class before we could leave for the day. Luckily my kids are amazing, and on that first day, when we were so exhausted, the girls took Matthew out to play while Justin, Mikey and I snoozed.

Here are some pictures of Give Kids The World, and our amazing Villa:

 This garbage can has vacuum power, so if you hold a napkin or paper up to it, it sucks it in. Matthew would HUNT for things to put in there!

 This train drives all around the village looking for people walking somewhere. If they see you walking, they stop and offer you a ride, wherever you're going.

This is the Ice Cream Palace. I think this was the one place ALL my kids liked the most. Some days, they ate ice cream 3 times, just because they could.

 This was a HUGE pool, and none of it was deeper than 3 1/2 feet. It was such a fun place to hang out with the family. There is a splash pad there, too, but it's behind the picture.

Here we are, outside of our Villa, just as we arrived.

This is the bedroom the boys slept in.

And the living room. That couch becomes a queen sized bed, which the girls shared. This way, they could stay up and watch TV, if they wanted to. Turns out they really just wanted to sleep, so they had to kick us all out at night.

The full kitchen, which was nice because we had dinner in the Villa most nights, out of sheer exhaustion.

The master bedroom.

With a nice view (if you can see past that funny looking lady!)



Okay, so just this much of the trip has become a HUGE blog entry, and my kids are feeling neglected. So, I think I'll make this a two-part deal. Either later tonight, or tomorrow, I will move on and talk about the theme parks.

I did say a few months back that I was just as excited about Give Kids the World as I was about Disney World, and I have to say, they did not disappoint. They treated us with so much kindness, and catered to our every whim while we were there. Whatever it took to make this a dream family vacation. If I lived in Florida, I'd find a way to volunteer there, because there is such an amazing spirit there, where they are granting the wishes of so many special children. I've never been somewhere that was more geared towards children. I felt like I hardly had to watch Matthew when we were there, because he couldn't possibly do any damage. This place was made for kids like him.

More to come...

Leaving on a Jet Plane

Okay, I think I'm coming to accept that it's difficult for me to find time to blog these days. But, here we go.

To update about Make-A-Wish, we had a big reveal party for Matthew at the Wishing Place. It was really neat. He got to raise a star to add to the star sculpture on the ceiling, and it will stay there forever. Then, we went up to the Wishing Room, he unlocked it, and inside was the Wishing Wizard! He did not expect that. He wasn't sure what he thought of the guy, but he talked with him. He made sure to stay far enough back that the wizard couldn't grab him. They had a nice talk, and reviewed Matthew's wishes. The wizard told him he was going to be able to go to Disney World and meet Mickey Mouse and see his castle. After chatting for a few minutes, Matthew gave him a hug, and we went downstairs for cake and festivities, which included face painting and balloon tying. It was a lot of fun. Then, we got to go out back and throw coins into the wishing well.

So, with all of that said and done, tomorrow we leave for Florida. It has taken a lot of waiting to get to this point. The last few months have been really rocky, and knowing that this trip was on the horizon often kept us going. We realize that we will come back to all of the same problems, but it will be with a renewed sense of wellness, and family togetherness, which we currently stand very much in need of. Not that our family is splintering, or anything, we just need a few days to connect, without all of the outside stresses bearing down on us. That's what family vacations are for, right?

I keep hearing, over and over, that when you're on a wish trip, they totally roll out the red carpet for you. You don't have to wait in lines, the kids are showered with gifts, it is completely stress free. So far, that has been very true. We didn't have to do any planning. We have just packed our bags, and tomorrow, we will show up at the airport. When we arrive in Florida, someone will be waiting at the airport with a sign that has our name on it to take us to our rental car.

When we leave the airport, we will drive to Give Kids the World (or GKTW for short). In a previous blog entry, I said that was inside of Disney World, but I was mistaken. Give Kids the World is a separate resort, or theme park, if you will. It was built specifically for wish kids, not just with Make-A-Wish, but with multiple wish granting organizations throughout the country. The only way you can stay in the GKTW village is if you are with a wish child. The accommodations are a 2 bedroom villa with a kitchen and laundry room. It's built like a village, and the mayor of the town is a rabbit, named Mayor Clayton, who will come and tuck the kids in at night, if you sign up for it. There are restaurants, a wonderful pool area, miniature golf, and snack carts with delivery. Everything is free.

GKTW is within a 15 minute drive of Disney World, Universal Studios and Sea World, all of which we will get passes for. You are given a button to wear, to identify yourself, and the parks bend over backwards to make it special for wish families.

We're all packed and ready to go now. Just winding down for the evening. Our flight leaves at 6 am tomorrow, so we need to be to the airport by 4. It'll be a long day, but by this time tomorrow, we'll be in our little villa in Kissimmee, Florida.

The other thing on my mind is this. On this day last year, Justin and I both had strong suspicions that Matthew had cancer, but didn't want to alarm each other, so we hadn't talked about it. We were waiting for his fever to go back up to a high enough temperature to justify taking him to another ER, so that we could have some answers. I can't speak for Justin, but I felt desperate at this point, for someone to figure out what was wrong with my baby and help him. The ER doctor was the sixth doctor to see him for his infection in a month of infection, fevers, weight loss, poor appetite, and lethargy.

We will be on our trip when the 1 year anniversary of Matthew's diagnosis hits. He was diagnosed on July 13th, 2011. Most families take this time to allow themselves to reflect, mourn what has changed, grieve what's been lost. Even if the outcome has been the best possible outcome, nothing will ever be the same, right?

But, cancer has already taken enough from us. It's not going to steal our happiness while we're on this trip. Instead, I want to celebrate Matthew's life on July 13th. Matthew has fought a hard battle, and so far, he has been successful. He is a different child than he was a year ago, in many ways, but in many others, he is unchanged, unblemished by this awful thing that was thrust on him. His sweet nature, and charismatic personality is still in tact. On Friday, July 13th, we will celebrate his life. May it be long and healthy!

Long Time, No See

It seems that my blog entries are becoming fewer and much further in-between. This time, it was because of my own health. I have had a rough couple of months, since shortly after the last blog post, and am just now well enough to sit at a computer - and look at it - for long enough to blog. Please don't take this as a lack of interest or commitment in my blogging, because as my health improves, my ability to write will, too. I am passionate about sharing Matthew's story, and about documenting it for him to have when he's older.

With that said, I'll start with an update on his health since April. He has done remarkably well in Maintenance. For a little while, it even seemed like he was doing too well - if there is such a thing. See, the goal of Maintenance is to suppress the cells that make the cancer, while not tanking blood counts. It's a low, steady dose of chemo, and the reason for the suppression is to ensure that the cancer doesn't come back. The easiest tool to measure that suppression is ANC (Absolute Neutrophil Count). Forgive me for repeating myself, but I know this isn't everyday language for everyone, so I'll briefly explain. Neutrophils are the portion of white blood cells that fight infection. Most people have a count ranging from 2000 to 8000 at any given time. During Maintenance, they like to keep it between 750 and 1500. This shows sufficient suppression of the cancer growing cells without tanking the immune system.

For the first two months of Maintenance, Matthew's counts were above 2000. It was nice, because we didn't have to worry about infection so much. He has been going to daycare, and playing with cousins. We've been to family parties - for once! - and we've really enjoyed the normalcy of it all. But, it also makes my heart feel heavy on some days, because if those cells aren't suppressed enough, it seems to me like he's at a greater risk of relapse.

Relapse is the ugliest word I know.

So, on his third appointment, his doctor was prepared ahead of time to explain this all to me, and also to increase the amount of daily chemo he gets. This chemo is called Mercaptopurine, or 6MP for short. After a month of increased 6MP, if the counts were still high, we would also increase his dose of Methotrexate, which he takes only on Thursdays, but it's 6 pills.

Knowing that his counts were supposed to be lower, I readily accepted this plan. It does run the risk of tanking his counts, but summertime is a good time to figure all of this out, because the kids are out of school, so we have lots of help if he can't go to daycare.

Surprisingly, after we had this discussion, when his blood test results came back with counts, they had lowered on their own. His ANC was 900. We don't really know what caused it to come down, so his doctor ordered Home Health to come out and get a blood draw in two weeks, which was last Tuesday. That didn't work out. Since we've moved, we have a new Home Health nurse, and he was very unfamiliar with pediatric cancer, he struggled with the port and couldn't get blood, so we're going to go up to Primary's on Tuesday, I think, to get his counts.

Also, at his last appointment, they did his lumbar puncture. He will get one every three months now, until the end of his treatment. He used to get them almost every week, so this is an improvement. Anyway, when they do a lumbar puncture, they remove some spinal fluid to make room for the chemo they're adding. The spine and brain are very pressure sensitive, and too much or too little fluid can wreak havoc. Also, it takes a while for the body to regulate it. This time, there was too much spinal fluid removed, and he got what they call a low pressure headache. He was pretty miserable for about a week and a half, and we went through half as much pain medicine as we have for the rest of the year, combined.

He's feeling much better now, and things feel like they're back to normal. It's amazing how much hair he has! Justin had to cut some around his ears last night, but he'll need a real haircut before our trip to Florida, which is in 2 weeks. It'll be the first time we've cut all that new hair. I'm sad because new hair is soft, like a baby's, and that feeling will be gone. But the bright side is that once it's gone, you'd never be able to outwardly tell that he's gone through what he's gone through this year. Unless he had his shirt off, because then you'd see the bump where his port is.

The one last thing to update is his drop foot. I don't know much about it yet, but it's caused by Vincristine, which he gets in his IV once a month. It's painful, I know that, and after his Vincristine the last few times, he has had a lot of pain for a couple of days. It's on the top of his foot, where it connects to the leg. I guess you could call that his ankle, but I think of the ankle on the side. Anyway, it's nerve damage that's happening there. A form of Neuropathy. It makes it really painful for him to walk, especially while there's still Vincristine in his system. It isn't permanent, and they can help him through it with physical therapy, which we'll be starting in a few weeks. Then we'll understand more about it, I think. I'm not sure if he'll continue to get all of his Vincristine, going forward, or not. Some of the other moms said they stopped it when their child had drop foot, and some said they lowered the dose, and some said they didn't change it at all. There aren't that many - maybe 5 out of the 150 or so in our group, so we don't have a lot to go off of. We'll just have to see how his doctors want to proceed.

I'm torn. On the one hand, Vincristine is part of the plan for ALL, which is tried and true, and all together it gives us his good prognosis. I don't want to compromise his cure rate. It's that simple. But on the other hand, we're saving his life so that he can live it. I don't want him to be permanently scarred by this. I want him to have every opportunity in life that other kids have. But a hard lesson I've learned this year is to look at the alternative. Better to have problems with the feet for life than the alternative, which is relapse, or worse. That's the cold truth of it, right there. In black and white. So, it'll be something we'll have to decide once the doctors have evaluated him, and once we understand the risks and benefits of both sides, I guess. Then, of course we'll pray and make a decision together.

It seems like such a small thing to worry about, really, in the grand scheme of things. I've seen so many kids go through so much worse. I guess I just want to have my cake and eat it too. I want him to live, and I want him to be able to move on with his life, forgetting that cancer ever took a minute of it away from him.

I read somewhere today that a wound is what lets the light in. It was so powerful to me that it brought me to tears. All the wounds my family has had inflicted on us during this last year (which is a lot more than the cancer alone) will make us better, in the long run. Right now, we feel tender, maybe a little too exposed, or vulnerable, but years from now, we'll look back on this and be able to see that it helped us become what we will be then. It's what the refiner's fire is all about. Gold goes into the fire messy, and comes out beautiful. Maybe the drop foot will be a blessing in the end, even if that's hard to see now. Maybe the same is true about the cancer, and the other crises we've had. Only time will tell.

The other day, I found this image and quote on Facebook, and it made me feel very hopeful.


"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history, it becomes more beautiful."

~ Billie Mobayed









Tomorrow, I'll blog about Matthew's second trip to The Wishing Place. They revealed to him that his wish will be granted, and held a star raising ceremony. It was pretty special! Stay tuned.