Living with Burkitt's

One family's experience with Burkitt's Lymphoma

A Happy Update

Gold Ribbon Childhood Cancer AwarenessHello all! It has been a while since we’ve updated Living With Burkitt’s, and much of that has to do with the happy fact that there has been very little cancer-related activity happening around our house lately. We returned to Primary Children’s Medical Center today for the second cancer check-up since the last update to the blog. Andrew is still cancer free!

Adding to the good news, Andrew completed his treatment 17 months ago, and it is rare for Burkitt’s Lymphoma to return more than 18 months after treatment. We have been going in for check-ups every 2-3 months, and now we can wait 6 months before the next check-up. Furthermore, the check-ups are likely to be less intense. Our doctors will likely check for tumors via ultrasound instead of a CT scan from now on. Ultrasounds do not use radiation or contrast fluid, which reduces the risk of future cancer or kidney problems.

River Rafting

River Rafting in Dinosaur National Monument last June

Fewer and less involved visits are great news from a financial perspective as well. We started 2013 in the thick of inpatient treatment and had incurred all of Andrew’s out-of-pocket expenses by January 15. So, our post-cancer check-ups in 2013 only cost us about $45 each in co-pays. In early 2014, a bill for hundreds of dollars after our first check-up was a not-so-fun surprise.  In May 2014, we had the big one-year visit with an EKG and CT scan. As some of you probably know too well, those aren’t cheap. That half-day at the hospital finished off Andrew’s 2014 out-of-pocket limits on our insurance, as each department sent its own bill. More than a year past treatment, cancer is still expensive. We still had savings to cover the expenses, and that was a big relief.

Aside from the occasional clinic visit, Andrew no longer thinks of himself as a cancer patient. He had a great First Grade year, where he finished near the top of his class. He is excited to start Second Grade next week and is entering school with no current medical concerns. Cancer doesn’t worry him. He reserves his anxiety for the same types of things that other kids worry about, like big roller coasters and going to sleep in the dark. I’m thrilled by his innocence and lack of perspective that 7-year-olds should have.

At Snowbird in August

At Snowbird in August

Andrew figures that if he beat cancer once, then he could beat it again. He doesn’t realize that the odds are against him if Burkitt’s returns a second time and that his odds of getting leukemia are a little higher than average. And why should we tell him? It’s now unlikely that his Burkitt’s will return, and who knows how much will be achieved in the field of cancer research in his (hopefully long) lifetime?

September is Childhood Cancer Awareness Month. I have loved seeing friends participate in the ice bucket challenge and donate for ALS research this month. If you’ve been involved, good for you! I hope you’ll also join me in supporting the cause against childhood cancer. Andrew’s cancer was cureable, but also so rare that pharmaceutical companies have little financial incentive to improve the sledgehammer-like treatment that has been used since the 1970’s. Other types of childhood cancer, like the brain cancer DIPG are still 100% fatal.

We have been making a small donation each month to the Leukemia & Lymphoma Society for several years – ever since Chris’ sister beat Hodgkin’s Lymphoma in her 20’s. I’d love it if you’d join me, or donate to another cancer-fighting organization of your choice such as Curesearch, St. Jude Children’s Research Hospital or Utah’s Huntsman Cancer Institute. Just changing your Facebook photo to a gold ribbon during the month of September will help spread the word.

Much love and and many thanks to all of you who have cheered our family on! We are so grateful for good friends and good health.

Help Defeat Childhood Cancer!

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Happy to be here

Arches National Park

On a recent trip to Arches National Park

Andrew had his latest visit to the cancer clinic at Primary Children’s Medical Center last Friday. It was a routine scan to be sure that his cancer had not returned. He gave blood and urine at the lab and had an ultrasound in Radiology. After that we visited with his fellow and attending oncologists who declared that he is still cancer-free!

Madeline joined us on this visit to the hospital because we planned to visit Chris’ parents after our appointments. She is not allowed in the cancer clinic, so she was excited to play in PCMC’s new playroom. It was being remodeled during some of Andrew’s treatment. We ate lunch in the cafeteria before leaving the hospital. Our children say that the PCMC cheeseburgers are as good as ever.

In the new PCMC play room

In the new PCMC play room

We will return again in three months for a CT scan and echocardiogram. The echocardiogram will be done to make sure that some of the chemotherapy drugs didn’t damage Andrew’s heart. That isn’t likely because his last echocardiogram, done a year ago, was clear and his doses of the heart damaging drugs were relatively low.

Speaking of the last echocardiogram, we just got a $130 bill for it yesterday. Most of Andrew’s treatment was paid for long ago, but we are still charged a co-payment every time we return to the hospital for these routine check-ups. Every so often, we receive a bill like this that took a long time to get through the insurance system. Our insurance paid most of it, but the rest may be ours to pay.

We have had our share of surprise bills and insurance hassles through this experience, but I have always been grateful for good insurance that paid for 99% of Andrew’s treatment. If you’re wondering what a relatively short bout with cancer costs, it’s about $400,000 and counting.

Despite the ongoing anxieties and inconveniences of cancer, we are glad to be on this side of it. When Andrew was first diagnosed, it was difficult to believe that there would be life after cancer, but here we are.

Andrew recently turned seven years old and he is as healthy and happy as he was before cancer. Despite missing months of kindergarten, he is doing well in first grade and is one of the top performers in his class. This is the best case scenario, and we are indeed happy to be here.

Birthday Party

Andrew’s LEGO birthday party

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A Happy Thanksgiving!

Last Friday, November 22, was cancer scan day. I checked my calendar to see what we were doing on November 22 last year and found that it was Thanksgiving Day.

We spent Thanksgiving 2012 in the hospital. Andrew had been diagnosed with Burkitt’s Lymphoma three days earlier, after a rough couple of weeks in the hospital. He was still recovering from major surgery. He felt just well enough to join us and our extended family from both sides for a Thanksgiving feast in the hospital cafeteria.

Thanksgiving 2012

November 22, 2012 – Thanksgiving Day

We pushed a bunch of tables together. Andrew ordered Cheetos and pudding and then fell asleep at the table. It won’t go down as our best Thanksgiving ever, but we were surrounded with love and support, so we still had plenty to be grateful for.

One year later, it’s amazing that our lives can be so normal again. Andrew is a healthy six-year-old. He is doing well in school and appears to have no lasting problems from the cancer, chemotherapy or surgeries, except for a few faded scars.

Andrew has forgotten some of the most difficult days of his treatment. He doesn’t remember the two miserable days he spent in the PICU. Things he does remember have been made less difficult by time. His favorite is, “Remember when I was a human pin cushion?” Those were the days after the PICU when his IVs kept failing, so the IV team visited our room several times a day to find new places on his arms to insert IVs and draw blood samples.

We often talk about hospital memories, and not all of them are bad. There were many good people and lots of toys, games and movies. Andrew fondly remembers ordering anything he wanted to eat, anytime. Chris and I remember begging him to order food that he often refused to eat. Both Chris and I spent a lot of one-on-one time with Andrew during that time, without a lot of the distractions that fill our lives again today.

November 22, 2013

November 22, 2013 – Cancer scan day

Andrew’s cancer scans were clear last Friday. He’s still cancer free! His next cancer scan in three months will be close to his 7th birthday and will be just a few weeks shy of the one-year anniversary of the end of his cancer treatment. If his cancer does not return in the next four months then it is unlikely to return at all. Nearly all Burkitt’s Lymphoma relapses happen in the first year after treatment.

We’ll always be a little worried about relapse, a second cancer or other long-term effects of chemotherapy. But for now, our doctors are all smiles and so are we. We have a lot to be thankful for.

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One year ago…

Andrew was diagnosed with Burkitt’s Lymphoma in November 2012, just one year ago. Chris and I are experiencing complex emotions as we remember…

On November 1st, Andrew told me he had a stomachache.

On Election Day, Andrew had an appendectomy.

Three days before Thanksgiving, we found out Andrew had cancer.

This is going to be an emotional month. It’s amazing to me that our lives can be so normal today after all of that, and we are grateful every day for Andrew’s health and so many other blessings that have come our way in the past year.

The following article about our Make-a-Wish trip last June was written by Madeline for her class blog. A few of the details and the spelling are not exactly accurate, but I am re-publishing it here unedited. I enjoy seeing the trip through her eyes.

Florida Trip…
Written by: Madeline

After Andrew (my brother) had cancer, he got to do “Make A Wish” (a foundation for kids).  He wished to go to DisneyWorld.wish

The plane trip was about four hours long.  I got the window seat.  We got to watch “Alex vs Alex.”  It was good.plane

Our hotel was really fun.  When we arrive they gave me a Shamoo stuffed animal.  Andrew got Mickey Mouse.

When we came to our Villa, there was an amazing amount of toys.  I got a cute stuffed monkey.  I n amed her Princess.  I also got a purse, a silly bag.monkey

After that day, we went to Disney World’s Hollywood Studios for Star Wars weekend.  We got there early to see clone troopers open Holleywood studios.  It was cool.

When we got back to give kids the world, there was a present left for us.  Cool huh?

The next day, I went to the Classic Disney.

Wait, I forgot to tell you at Hollywood Studios, I was on the “Tower of Terror” and I forgot my mouse ears. They couldn’t find them anywhere, so the man in charge gave me a ticket to get new ones.

Ok…back to my story.

We also went to Animal Kingdom but that was too boring to write about.

We got fast passes to every ride for free!ride

There was also a Make A Wish VIP lounge where we rested.

Now for my favorite part…Epcot.  Epcot wasn’t my favorite part.  It had around the world stuff a place thats like Mexico, Japan, China, Arabia, Germany, Nroway, and my very favoirte France.  I got to eat eclaires and baggets and wear a beret.  We saw a movie ab out Paris France.  It was really good.  Germany had a Werther’s Caramel candy shop.  My favorite part was the candy shop!paris

In Japan we got cool Japanese poncicals.

After we went to Sea World and fed dolphins.  That was so cool. Then I got lost, really lost at the Creepy Shark Exhibit.dolphin

The next day we went to Island of Adventure.  Dad liked the SpiderMan ride.  Andrew liked it too.  I like the earthquake and tornado experience. Andrew also loved the Harry Potter ride.   Mom felt sick that day.  She almost lost her phone too when the ride went upside down.

I loved Give the Kids the World.   There was horseback riding, fake Halloween things, a cool pool, carosel, and the spa.

Sadly, we had to leave.

Next was the Ocean Side at the Midtown.  There was one of those showers where you wash your feet and Andrew ran out there bare naked because he thougth it was the other kind of shower.

I saw Winter the Dolphin that has no tail.  I also celebrated my birthday at the beach in Florida.birthday

Sadly the vacation came to an end on Father’s Day…Boo Hoo!

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Catching up

life after cancer

It’s pretty official now that we are back to life-as-usual. Yay! You may recall from a previous post that I promised not to get back into activities that weren’t important to us after cancer got us out of everything. It appears that a lot of activities were important because we are back into school, work, family events, travel, play dates, soccer practice, piano lessons, art classes, church activities, field trips, PTA, volunteering in the kids’ classes, writing and so forth. Our lives are not much different than before Andrew’s diagnosis, except that I hope we feel more empowered to make changes when we need to.

Here is what we have been up to in the past few months:

Cancer Scans

We visited Primary Children’s Medical Center last Friday for another routine cancer scan. We alternate between ultrasounds and CT scans every two months to limit the amount of radiation Andrew receives. This was an ultrasound visit. The radiologist was probably our favorite of all the radiologists we’ve seen because he was so thorough and forthcoming. I’m not sure how we’ve never seen him before.

The radiologist spent some time double-checking some “speckles” around Andrew’s pancreas and ultimately concluded that they were most likely scar tissue. He made it clear that there was nothing cancerous about them and if anything else were wrong, it would be obvious.

This was our six-month anniversary since the end of Andrew’s treatment, and we’re still CANCER-FREE!

Make-a-Wish Fundraiser

After the cancer scans, we traveled to the Eaglewood Golf Course in North Salt Lake to support Make-a-Wish at a fundraiser. We were asked to tell our story at a lunch after the golf tournament, but the tournament had been delayed by rain, so we spent a lot of time waiting around. Andrew played on the stairs, snacked on chips and cookies, and eventually, we borrowed golf carts. Andrew loved riding in the golf cart. He held his hands up like he was riding a roller coaster. It was adorable.

Eventually, the lunch started and Andrew played his part well. We were surprised when the Utah Jazz Bear ran into the room and covered both Chris and Andrew in silly string. If golf cart rides and silly string weren’t enough, Andrew was rewarded for his time with a small collection of golf balls, tees and hats.

Jazz Bear

Days of ’47 Parade

I’m way overdue on reporting this one. On July 24, our family had the opportunity to ride in the Days of ’47 parade through downtown Salt Lake City with Make-a-Wish and the and the 146th Transportation Company of the Army National Guard. For those of you who are not familiar with it, the Days of ’47 Parade celebrates the day that the Mormon pioneers entered the Salt Lake Valley in 1847. It is the biggest parade in Utah and it is televised locally.

Days of 47 Parade

We arrived in downtown Salt Lake City early in the morning to ride on army trucks in the parade. What we did not know in advance was that we’d be in the middle of a walking water fight all the way down the parade route. The trucks had big boxes full of water and one person whose entire job was to refill water guns.

Did you know? If you punch a hole in the lid of a water bottle with a key or screwdriver, fill the bottle with water, replace the lid, then squeeze, it shoots and soaks better than a water pistol. My kids loved it. I spent a lot of time trying to protect the camera.

The parade ended at Liberty Park where the National Guard unit paid tribute to all of the wish kids and made them honorary members of the unit. Chris and I were so touched by this.

parade 4

Rubber Ducky Derby

This is Make-a-Wish’s big annual community fundraiser. This year was its 25th anniversary! As a wish family, we received four complimentary passes to the Seven Peaks water park in Salt Lake City for the Rubber Ducky Derby. Unfortunately, Andrew woke up with a stomach virus on the day of the event.

Make-a-Wish

Those stomach viruses make us anxious, because the first symptoms of Andrew’s cancer were stomach pains and vomiting. We were delighted to learn that Andrew’s best friend had the same symptoms. Andrew is our homebody, so he wasn’t very distressed about missing the event, and Chris was happy to stay home after a busy week, so Madeline and I went on our own.

When we arrived at the water park, the lazy river was filled with yellow rubber ducks. We had sponsored a few, so we were hoping to win a prize. Well-known characters and mascots were walking around in costume, and it was a carnival atmosphere.

Make-a-Wish

We ran into a family that rode on our truck in the Days of ’47 parade and Madeline quickly re-connected with their daughter who was about her age. They spent the day riding the water slides together while I tried unsuccessfully to keep up.

I learned at the golf tournament that the winner of the trip to Hawaii donated the trip back to Make-a-Wish. They used it to help grant a Utah child’s wish to visit Hawaii. The 2-year lease on a car was won by a family with special needs children whose own car had just broken down. Goosebumps!

I had no idea a year ago how much we would come to appreciate the Make-a-Wish Foundation. They focus on granting individual wishes, but we are grateful for the other opportunities that have come Andrew’s way through Make-a-Wish as well. Make-a-Wish gave us hope during a dark time in our lives. I am grateful to the many companies, organizations and individuals who raise funds for Make-a-Wish, allowing them to grant wishes to special kids like ours.

Army National Guard

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First haircut in a year

first haircut since cancer

Andrew had his first haircut since October 2012 yesterday. I was grateful to reach this post-cancer milestone. However, Andrew wasn’t grateful at all to be getting a haircut. He didn’t miss them. But in the end, he was a good sport and was chatty with the neighbor who cuts our hair in her home salon.

The hair around Andrew’s ears and neckline was looking messy, but he didn’t need much off the top. The before and after photos are not much different from each other. He still needs a few more weeks before all his hair is as long as it was before cancer.

Before

Before

I’ve heard that for a lot of cancer patients, their post-cancer hair is different than their pre-cancer hair. I haven’t noticed a big difference in Andrew’s hair. It has a little more curl near his neckline than it used to. It may also be a bit lighter in color than it was, or is that just from the summer sun?

After

We had a busy summer, full of fun activities. We enjoyed participating in the Days of ’47 Parade in Salt Lake City with other Make-a-Wish families on July 24. Some of us also attended the Make-a-Wish Rubber Ducky Derby in August. I’ll post some photos from those fun events soon.

Andrew just finished swimming lessons, and will play his first soccer game of the year this Saturday. He starts 1st Grade next week. He is doing really well and has no limitations. Other than the scar on his belly, there is no evidence that he had cancer just a few months ago. We are so grateful.

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Still cancer free!

Cancer Scan - Blood pressure check

Today was cancer scan day for our family. These days are stressful because we’re afraid of hearing bad news, and we spend hours at the hospital remembering some really difficult days. “Hey buddy, remember that time when you were in a lot of pain and had surgery and then we found out you had cancer…?”

Chris and I spent much of the night tossing and turning and dreaming strange dreams. Andrew must have been restless too, because he fell out of bed in the middle of the night. He didn’t even wake up. When Chris and I roused ourselves to get ready, we found that Andrew had got up and turned on his lamp for comfort sometime after the incident.

Madeline slept at my parents’ house, since we needed to be on the road by 7:30 a.m. This time, we were specifically reminded by the hospital that siblings are not welcome in the cancer clinic. I’m sure that comes up more often in the summer when school is out.

We started in the lab for a blood draw. Andrew was worried about it, but he didn’t even flinch when the needle entered his arm. Our next stop was Imaging for a CT scan. There, we spent 90 minutes in the waiting room while Andrew drank the contrast mixed with root beer.

Andrew has had his share of CT scans and has drunk a lot of contrast. He always vomited it back up until we found out last time that they can mix the contrast into almost anything. He tolerates soda a lot better than the fruit punch.

Then we were reminded that Andrew needed I.V. contrast too, and we were sad that they hadn’t inserted an I.V. when they took the blood sample. This didn’t come up before because they used the PICC line for his last CT scan. So, they had to poke Andrew’s other arm. Here’s how Andrew felt about that:

Cancer scan - I.V. in the CT

Next, we traveled to the cancer clinic to meet with Andrew’s doctors. Thankfully, it was all good news there! Andrew’s blood work looked great. So did his CT scan. There are two tiny benign-looking nodules in his lungs. They were there 4 months ago and haven’t changed. They are probably scar tissue or something from one of Andrew’s infections. If they were Burkitt’s Lymphoma, they’d be huge by now.

Our doctors continue to be optimistic that Andrew’s cancer will not return, though we will return for scans every two months for the next 18 months or so. The odds are strongly in our favor, which is a relief. We’re sure to sleep better tonight.

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Star Raising Party

Make-a-Wish

Last weekend we gathered with family and a few close friends at the Make-a-Wish house near Salt Lake City, Utah for Andrew’s star raising party. We had planned it for just after our trip to Disney World so that we could share some photos and experiences at the party. Our wish granters, Joyce and Ann, and the Make-a-Wish hospitality staff, Daniel and Meg, did a great job of making it a special event.

Make-a-WishDaniel first gave everyone a tour of the building and gave everyone a little history about Make-a-Wish. The first time our family visited Make-a-Wish, we didn’t see the garden because it was a snowy day. This time we were all given a special coin to toss in the wishing fountain.

Then we all went upstairs to the “castle” where Andrew originally made his wish. All of the kids, and many of the grown-ups were fascinated by the colorful room and the waterfall inside of it. With Daniel’s help, Andrew shared the story of day he made his wish.

Back downstairs, we were enjoying cake and ice cream when we were surprised by some special visitors. The Alpine Garrison of the 501st Legion – a Star Wars costuming group – performed for us. They re-enacted a scene from Andrew’s favorite Star Wars movie, Attack of the Clones.

Chris and I knew that some Star Wars characters would make an appearance, but we had no idea there would be so many. We had kept it a secret from our kids. It was really cool!

Make-a-Wish

At the end of the scene, Andrew was presented with a wrapped package containing a new green light saber. He was excited because, even though we already own several light sabers (you can never have enough), he didn’t have a green one yet. This one retracts and lights up, so it’s pretty spiffy. Then Obi Wan Kenobe and Anakin Skywalker made Andrew a Jedi Knight.

Make-a-Wish

For the party’s finale, Andrew added his star to the ceiling at Make-a-Wish. It’s yellow with a white center. It was a special occasion and we are grateful to  those who were able to celebrate it with us.

Thanks to our friends and families, Make-a-Wish staff and volunteers and the Alpine Garrison for making Andrew’s star raising such a special event!

Make-a-Wish

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Andrew’s Make-a-Wish trip

Magic Kingdom

Last week, we traveled to Florida for Andrew’s Make-a-Wish trip. It was an exciting event in many ways. It was our kids’ first plane trip. It was our first visit to Florida. We had tickets to Walt Disney World and Universal Orlando Resort, which were places we had wanted to visit long before Andrew’s diagnosis.

The most exciting part of the trip was that it was a celebration of our family’s triumph over cancer. Our hearts were filled with gratitude for Andrew’s good health.

I am planning to write several articles for my travel blog, tipsforfamilytrips.com, about different parts of our trip. These will be filled with tips for other families who are planning a similar trip and more details for those who are curious about what a Make-a-Wish experience is like.

In the meantime, here are the highlights of Andrew’s Make-a-Wish trip to Walt Disney World.

Give Kids the World Village

Give Kids the World Village

Give Kids the World Village

Make-a-Wish’s website reports that 40% of wishes are Disney-related, and most of these families are sent to Orlando, Florida because of a special place called Give Kids the World Village.

Give Kids the World is a non-profit resort that provides families of children with life-threatening illnesses “weeklong cost-free fantasy vacations.” It works with many wish granting organizations throughout the world. While there is some paid staff, most of the food service, cleaning and activities are done by volunteers.

Our stay at Give Kids the World included a two-bedroom, two-bathroom villa, free meals, a rental car, and tickets to Walt Disney World, Universal Orlando Resort and Sea World. In case that wasn’t enough, Give Kids the World has an on-site ice cream parlor, carousel, pool, splash pad, playground, arcade, mini golf course, and more.

Give Kids the World Village

Mayor Clayton of Give Kids the World tucked our kids in bed one night

Gifts for our children were delivered to our villa daily and special events, such as horseback riding, fishing and Halloween and Christmas parties, are held each day.

Give Kids the World is an amazing place. If you are interested in donating to this organization or volunteering there during your next visit to Florida, please visit their website.

Star Wars Weekend - Disney Hollywood Studios

Star Wars Weekend

Walt Disney World hosts Star Wars Weekends in May and June each year. When we found out about this after Andrew made his wish, we scheduled our trip to make sure Andrew could attend Star Wars Weekend at Disney’s Hollywood Studios.

We arrived bright and early to be sure we would be there when the gates opened. We knew that there would be a special Storm Trooper show at the rope drop. Andrew met another Make-a-Wish Star Wars fan about his age, also wearing a Star Wars costume, and they hit it off. We crossed paths with that family several times that day and the two boys were adorable together.

Andrew's Star Wars buddy - this was spontaneous and hilarious

Andrew’s Star Wars buddy – this was spontaneous and hilarious

While Chris and the kids stood in the Jedi Training line, I happened to talk to the right employee and got Andrew a wristband to march in the Celebrity Motorcade parade. The celebrities that day were Billy Dee Williams, the actor who played Chewbacca and several voices from the more recent Clone Wars series.

Jedi Training

Jedi Training

Andrew marched with other kids in front of the celebrities and lots and lots of Star Wars characters, then he stood in front of the stage where the parade ended. Chris marched in the parade too and then joined me and Madeline in the VIP viewing area. Andrew was beaming through the whole experience, and Chris said it was really cool rubbing shoulders with Star Wars celebs backstage before the parade.

Epcot - Walt Disney World

Epcot – Walt Disney World

Walt Disney World

The other three parks at Disney World are Animal Kingdom, Magic Kingdom and Epcot. We saw them all. Hollywood Studios and Animal Kingdom have the fewest attractions, so we visited those two on the same day. Our strategy was to arrive at opening time each day and return to Give Kids the World by dinner time each evening. It worked pretty well.

Give Kids the World provided us with a Guest Assistance Pass and button that allowed us to use the Fast Pass or Handicap lines at every ride. Since we were visiting during peak season, this was an awesome benefit!

Universal Studios

Universal Orlando Resort

Universal Orlando Resort has two parks: Universal Studios and Islands of Adventure. Chris has been wanting to visit Islands of Adventure for years, so it was disappointing when he wasn’t feeling his best on the day we visited that park. Despite heat, humidity and discomfort, he soldiered on and we can now say that we have been there and done that.

Hogwarts Castle - Islands of Adventure

Hogwarts Castle – Islands of Adventure

At Islands of Adventure, The Wizarding World Harry Potter was our priority, with Marvel Super Hero Island and Suess Landing close behind. The crowds at Harry Potter were CRAZY! Like Disney, Universal takes care of Make-a-Wish kids, and we were grateful to be escorted to the front of every line. The Harry Potter Forbidden Castle ride was very cool, though the Spiderman 3-D ride was in close competition for the best ride at Universal.

We visited Universal Studios on our last day in Orlando. We were in our groove by then, and it was nice that the park was a little less crowded than Islands of Adventure and Disney’s Magic Kingdom. We were excited to find that the new Transformers 3-D ride, which officially opens next week, was running on a “soft open.” We rode it twice.

Sea World

Feeding dolphins at Sea World

Sea World

We didn’t spend as much time at Sea World as we might have, because we just had too many other things we wanted to do. Sea World gives Make-a-Wish kids and their families a free dolphin feeding experience. We made a beeline to that, and then to the Shamu whale show.

Andrew loves Star Wars, Harry Potter, Spiderman, African safari animals (Animal Kingdom) and marine mammals. His wish for a trip to Orlando was perfect for him because it allowed him to experience all of his passions in one place.

Caladesi Island

Caladesi Island

Clearwater Beach

After visiting seven theme parks in six days, we were ready for a vacation from our vacation. We had arranged to extend our trip at our own cost for three extra days, and we were excited to spend some time lounging at the beach.

We chose Clearwater Beach on Florida’s Gulf Coast. It was recommended to us by several people and Chris has relatives who live nearby. We stayed at a fun local motel called Frenchy’s Oasis Motel. This retro-themed motel was located just three blocks from the beach and within an even shorter walk of shops, restaurants, and Clearwater Beach’s central gathering spot – Pier 60. It was perfect for us!

Frenchy's Oasis Motel

Frenchy’s Oasis Motel

I almost wish that I could say that we did nothing for three whole days, but we aren’t very good at that. We did spend half a day hanging out on Clearwater’s white sand beach, playing in the waves and collecting shells, but then we went in search of what else there is to do in Clearwater.

Clearwater Marine Aquarium

Winter – Clearwater Marine Aquarium

Clearwater is the home of Winter the Dolphin – the star of the movie Dolphin Tale. We made sure to stop at the Clearwater Marine Aquarium to see her. We also took a ferry to Caladesi Island State Park. It is an undeveloped island just north of Clearwater, and we heard it was a good place to collect shells. We did find some nice shells and enjoyed more beach time.

On our last day in Florida, we enjoyed brunch in St. Petersburg with Chris’ cousins. We also made a brief stop to see the Orlando LDS Temple on our way to the airport.

Orlando LDS Temple

Orlando LDS Temple

We had such a great trip! It’s hard to believe it’s over, though after the crazy, scary year we’ve had, we will never complain (very loudly) about our boring, normal lives again.

We are grateful to Make-a-Wish, Give Kids the World, Imagine Communications, and all of the volunteers and donors who made this special trip possible for our family.

Frenchy's Cafe

Disclosure: Frenchy’s Oasis Motel hosted our family at no charge in exchange for a review on Tips for Family Trips. However, my opinions are my own.

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Cancer Scan Day

SpidermanToday we traveled to Primary Children’s Medical Center in Salt Lake City for Andrew’s first post-cancer scan. Here’s how our day is going:

6:00 a.m. – Rise and shine! We all had to get up a little earlier than usual to arrive at the hospital in time. Madeline is going with us because we have plans with extended family later, and the hospital is on the way.

7:05 a.m. – We are out the door. We should have plenty of time to be there by 8:00, but we’ll be traveling with commuter traffic so it wouldn’t be smart to cut it close.

7:50 a.m. – We pull into the parking lot at Primary Children’s Medical Center. As instructed, we park in a different lot than we usually do, because of construction, and are grateful to easily find a parking space. That’s the upside of early appointments.

8:00 a.m. – We check into the Outpatient Lab. This is our first time here, since clinic and home health nurses were able to draw blood painlessly from Andrew’s PICC line in the past. The PICC line is gone, so they have to use a needle today, and Andrew has no idea it is coming. I wait outside the room with Madeline and we hear Andrew’s protests from the Waiting Room. Chris says that Andrew calmed down quickly after the needle prick was past.

8:15 a.m. – We check into the Imaging Department for an ultrasound. We are early for our 8:30 appointment, so we wait.

8:35 a.m. – Andrew and I are summoned by the tech for the ultrasound. Chris and Madeline stay in the Waiting Room. The tech is friendly and when Andrew gets bored and restless, we distract him by asking him animal questions. Andrew is happy to tell us everything he knows about cheetahs, peregrine falcons, komodo dragons, black mambas and mountain lions while the tech and doctor look at fuzzy blobs on the screen. How they can tell a pancreas from a gall bladder from a tumor is a mystery to me.

Waiting for the doctor

Waiting for the doctor… Check out all that new hair!

9:00 a.m. – We arrive at the Oncology/Hematology Clinic. The sign on the door says that nobody under the age of 18, except the patient, is allowed in the clinic. What to do with Madeline? Thankfully, RSV restrictions have been lifted and she is once again welcome in the play room downstairs. I walk her down while Chris and Andrew check in. She doesn’t mind staying alone. She is the only one of us who misses the hospital.

Back upstairs, we visit with a nurse, our fellow, and an attending physician we have somehow never met before. We learn that Andrew’s white blood counts are low, but not too low to be worried. His ANC, red blood cells and platelets are all normal. His written ultrasound results are filled with the words “normal” and “unremarkable.” That’s what we like to read.

When Andrew has symptoms of anything, we never know if it is from his cancer treatment or if it’s something else. We talk about Andrew’s constant sniffles, the strange way he runs, and his bowels. We know his bowels are cancer related, because they have never been the same since surgery. His sniffles are probably allergies. Andrew has never been athletic, and five months in bed didn’t do much for his muscle tone. A few more months of swimming lessons, soccer and playground time should help his lurpy gait.

Between doctors, I check on Madeline downstairs. I find her in a hair net and face mask performing a “heart transplant” on a stuffed hospital doll under the supervision of a volunteer.

Hospital Playroom

10:00 a.m. – We are finished and still cancer-free! We find Madeline, who is tie-dying a paper lantern with paint and syringes. We stop in the small cafe for a snack. Madeline is disappointed because the cafeteria is not yet open for lunch. She has been craving a cafeteria cheeseburger. I’d promised her one because I was sure we would be at the hospital until lunchtime. We’ve never had a visit to the hospital go so smoothly before.

10:45 a.m. – Finished early, we have time to see the Mummies of the World at the Leonardo Museum! Madeline has an interest in mummies and she has been longing to see this exhibit since it opened in February. It closes next week. It has been a popular exhibit, but because it’s a weekday, there are no lines! The mummies are everything Madeline hoped and dreamed they would be, but I wouldn’t have minded learning about mummies without actually seeing them. Coming from Cancer Land, I found it interesting that they use the same type of CT scanners to examine mummies that they used on Andrew to look for cancer.

It’s a good day!

Leonardo

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