Living with Burkitt's

One family's experience with Burkitt's Lymphoma

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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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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Playing with the Utah Jazz

Utah Jazz, Make-a-Wish, Leukemia and Lymphoma Society

Andrew and Jeremy Evans

Late yesterday morning, I received last minute opportunity from our local Make-a-Wish chapter. They offered Andrew the chance to play basketball with the Utah Jazz at a Leukemia and Lymphoma Society fundraiser later in the day.

Utah Jazz, Make-a-Wish, Leukemia and Lymphoma Society

Andrew with Paul Millsap and Alec Burks

I called Chris right away, but he did not answer his phone. The invitation was for one child and one parent only, so I checked with Andrew to make sure he wanted to go, and accepted the invitation. I knew that Chris, a lifelong Utah Jazz fan, could not miss this opportunity.

When I reached Chris a short while later, it was so fun to tell him, “You’re going to hang out with the Utah Jazz at their practice facility tonight!”

Andrew also had his first spring soccer practice last night. He and Chris went to that and then straight to the Utah Jazz practice facility in Salt Lake City. Andrew changed from his soccer jersey to a Jazz basketball jersey in the van.

At the practice facility, Andrew played basketball with Gordon Hayward, Alec Burks, Paul Millsap and Jeremy Evans. Only the kids were invited to play at this event, while their parents (surprise, it was mostly dads) watched from the sidelines. Chris said that Paul Millsap was especially kind about finding Andrew a basketball to play with, and getting him involved on the court. In play, Alec Burks blocked one of Andrew’s shots. There’s a bucket list experience.

Utah Jazz, Make-a-Wish, Leukemia and Lymphoma Society

Playing with Alec Burks

Andrew was the youngest child there, and is not yet an avid basketball player, so he got tired of playing after about 45 minutes. Chris took pictures of Andrew with Paul Millsap and Jeremy Evans, the NBA slam-dunk champion. Though I’m sure Chris would have loved to stay for the entire event, he was a good sport when Andrew was ready to leave early.

Thank you to Make-a-Wish, the Leukemia and Lymphoma Society and the Utah Jazz for making this opportunity possible for our family!

Utah Jazz, Make-a-Wish, Leukemia and Lymphoma Society

Andrew and Paul Millsap

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Best Easter Egg Hunt EVER!

Family with Easter Bunny

Last Saturday, we attended the Make-a-Wish annual Easter Egg Hunt. This year in Utah, the event was held at two locations: Hogle Zoo in Salt Lake City, and the Ogden Eccles Dinosaur Park in Ogden. We chose Ogden.

The day was cold and there was a light dusting of snow on the ground. We dressed for the weather in parkas, hats and gloves. We arrived a little early and had time to explore the indoor museum before the hunt began.

My girl

Because of the cold, attendance was light. There were only about twenty or thirty kids and thousands of candy-filled eggs littering the grounds of the Dinosaur Park. The organizer started dividing the children by age, and then said, “Aw, go where you want. Just don’t run over the little ones.”

Egg Hunt

I was glad I had brought extra grocery bags because my kids’ plastic buckets filled quickly, while there were still plenty of eggs. I followed Madeline while she filled the grocery bag. There were so many eggs, she complained that her back hurt from the bending and from carrying the heavy bag. When it was full, she gave up, leaving eggs on the ground.

Andrew’s bag was not as full as Madeline’s, but Chris told me that Andrew exclaimed during the hunt, “I hate cancer, but this is totally worth it!” I can’t say I agree with the last part, but it was great to see him so happy.

After the egg hunt, the party continued inside the museum where our children were delighted by a face painter, balloon artist, crafts and games.

Angel

Andrew is planning to return to school this week for three days. He will hopefully go tomorrow!

Yesterday, We took Andrew to Primary (LDS children’s Sunday School class) for the first time since October, and he did well. He jumped right back in, and we will be back to reminding him not to talk out of turn in no time.

Ogden Dinosaur Park

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A busy morning

For someone who doesn’t get out much anymore, this morning was unusually busy for me. First, an anxiously awaited package from Amazon arrived on our doorstep either late yesterday or early this morning. It was full of books and toys our kids had ordered with gift cards that had come their way on Andrew’s birthday.

That was a lot of happiness for 7:45 a.m. But alas, it didn’t last.

Madeline accidentally stapled her thumb and then discovered that Flag, her Betta fish had died in the same ten minutes. The thumb was a minor injury, but compounded with grief for the fish, the Best Morning Ever quickly became the Worst Morning Ever. Our girl is capable of a broad range of emotions in impressively little time.

We’d had the fish for nearly a year-and-a-half and she knew the end was coming. However, this was her first pet and we didn’t know how Madeline would take Flag’s death when it happened. I held her while she cried and was relieved when she recovered in time to make it to her carpool. She didn’t want to be part of Flag’s “burial at sea,” so I took care of that and moved all the fish supplies into storage. She says she is not yet ready for a new fish.

Flag and Madeline in happier times

Flag and Madeline in happier times

With Madeline out the door, I tidied the kitchen a bit and then launched into an unplanned morning on the phone. I played “phone tag” with a friend about a project we have been working on. Due to circumstances beyond our control, the problem is even more complicated than it was before all the calls and messages.

I spoke with Abby at Make-a-Wish four or five times this morning. During one of those calls, I had a phone on each ear, with Abby on one and Chris on the other. Those were happy calls as we nailed down dates for our flights in and out of Orlando next June. We are planning to extend our trip by a few days so we can spend some time (on our own dime) at the beach. I am expecting a call from Abby later to confirm the flights before they are booked. We are so excited!

Finally, the question of whether or not we will return to the hospital tomorrow was still up in the air. One of my first calls was to our home health nurse to see if she could come take a blood sample from Andrew early so our doctors could get the results and make a decision.

She arrived at 12:30, and per instructions from our clinic case manager, she delivered Andrew’s blood to our local hospital with instructions to run the labs STAT! Who knew I’d ever get to use “stat” in a real life sentence?

I just received a call from our case manager confirming our admission to Primary Children’s Medical Center tomorrow. Andrew’s ANC is back up to 1.6, which is adequate to begin his last round of chemotherapy. I can’t say I’m looking forward to a week at the hospital, but I am looking forward to (hopefully) getting our lives back in a few weeks.

R.I.P Flag. Fight on, Andrew!

A new Lego kit is completed!

A new Lego kit is completed!

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A visit to The Wishing Place

Wish Darth VaderParticipating in Make-a-Wish is like a dream come true inside of a nightmare. No family wants to be eligible to have a wish granted by this organization, but once in that position, Make-a-Wish has been a tremendous source of hope and encouragement for us.

During the first dark weeks in the hospital, before Andrew’s cancer diagnosis, we started talking about the fun things we would do when the suffering was over. We promised Andrew we would go to Disneyland. I wrote about those conversations on my family travel blog, tipsforfamilytrips.com.

When we learned that we are eligible to participate in Make-a-Wish, the options were endless. Chris and Andrew have spent hours talking about the possibilities. We made (many) suggestions and offered (lots and lots of) ideas, but ultimately, we wanted Andrew to wish for something that would lift his spirits in the present and be the source of happy memories for many years to come.

We referred ourselves to the Utah chapter of Make-a-Wish early in 2013. Anyone can refer a child to Make-a-Wish, but the organization prefers that parents be involved in the referral, because they must ultimately approve the wish. We received information by mail, and were contacted by a volunteer Wish Granter named Ann.

We had the option of going to The Wishing Place in the Salt Lake City area or having the wish granters come to us. We chose a time when Andrew would be healthy enough to go there because we felt that the wishing experience would be more memorable. We were right.

The day we chose was Andrew’s birthday. We were delighted to find this sign at the entrance to The Wishing Place when we arrived.

Wishing Place Welcome

We met Ann and Joyce, our volunteer Wish Granters and Daniel, a Make-a-Wish employee. We were escorted to a large party room set with tables and chairs. It was decorated with large cardboard cutouts of Star Wars characters and superheroes. Chris, an incurable comic book nerd, was dismayed when Andrew only wanted photos with Anakin and Darth Vader, but not Iron Man.

Then we were given a tour of the building. We saw glass stars hanging from the ceiling. Andrew will soon have the opportunity to host a party at Make-a-Wish for a limited number of friends and family for his own star raising.

Wishing Stars

We were escorted to a sitting area upstairs where Andrew and Madeline played the Wishing Game with Joyce while Chris and I completed paperwork and signed waivers on the other side of the room with Ann.

Make-a-Wish categorizes wishes four ways: I Want to Be…, I Want to Have…, I Want to Meet…, and I Want to Go… Joyce helped Andrew identify a wish in each of these categories and then narrow them down to one. Andrew wanted to be Luke Skywalker. He wanted to have 100 Lego kits. He wanted to meet Star Wars characters. He wanted to go to Disney World.

We are going to Disney World!

According to the Make-a-Wish website, 45% of the wishes made are Disney-related. Andrew gets no points for originality, but Disney World has everything Andrew loves. He loves Star Wars, African animals and Marvel superheroes (or maybe that’s just Chris now), and Disney owns them all. Disney World would not have been my wish, but I can still appreciate the magic of the Magic Kingdom.

We have been reading up on the Make-a-Wish Disney World experience, and our entire family is excited. We could have gone to Disney World on our own, but not like this. I’ll share details as we learn more and experience Andrew’s wish.

But wait, we aren’t done with our experience at The Wishing Place yet. Andrew had decided upon a wish, but we still had to make it official. Andrew was given a key to the Wishing Room.

Entering the Wishing Room

The Wishing Room is a round room with colorful lights and a waterfall. Before Andrew sent his wish off to the Wish Magician, everyone, both his family and Make-a-Wish staff each wished him something special. Most of those wishes were for health and happiness. Then Andrew inserted his wish, rolled into a metal cylinder, into the tip of a big metal magician’s hat. It was official.

wish 3

Andrew gets to keep his key to the Wishing Room and return any time he wants. We will be part of the Make-a-Wish family and have the opportunity to participate in Make-a-Wish events for years.

Andrew still tells me every day that he wishes he never had cancer, but we will be forever grateful to the people of Make-a-Wish and all those who donate to this organization for giving our little boy hope and happiness during the fight of his life.

wish 2

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Fresh perspective

You can live many years in the span of a few days. At least that is how this journey has felt. I still remember in early November at Davis Hospital being told to go to Primary Children Medical Center and to be prepared to stay for a few days. I recall thinking that the expense and time of two or three days in the hospital was outrageous. Ah, the good old days. We have now spent more days in the hospital over the last three months than we have at home. And I don’t even look at the bills at this point. Allison has a constitution more suited for that ordeal.

My understanding of cancer has also grown astronomically over the last few months. Oncologists have a way of communicating bad news in a way that leaves you believing that what they are saying is really good news, until five minutes later. After our first visit with the oncologists, I remember feeling that Andrew just had a touch of cancer and it would be cured in a couple of weeks. I’m sure that is not what they said but that is what I heard. We were given some information about the Make-A-Wish Foundation. I thought, “That’s nice but we won’t qualify because we have one of those cancers that isn’t life threatening.”  Again, those were the good old days.

Our whole family has matured in our knowledge of medical lingo. It is disconcerting to hear a 5-year-old throw out words like PICC line, IV, CT scan, NPO, TPN, heparin, transfusion, etc.… so nonchalantly. Madeline also has expanded her repertoire of medical terminology.

It is also amazing how my perspective of what is and is not a good day has dramatically changed. People will often ask, “How is Andrew?”  I find myself saying, “good” and then thinking to myself, “Well, with the exception of throwing up twice today and that rush to the clinic for a blood transfusion.”  That passes as a pretty good day at this point.

I have increased in wisdom over the last few months.  I have always been a prideful person.  People ask if I need help and I say, “no.”  I have learned to graciously accept kindness when offered.  Conversely, I now realize the importance of extending that same kindness to others whenever possible.  It is easy to be cynical and judgmental regarding others.  I was a natural skeptic.  I’m not anymore.  I realize that, as the great poet Jewel once said, “In the end, only kindness matters.”

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The perks of cancer

Utah Jazz, Primary Children's Medical Center

One of Andrew’s young cousins came to visit us in the hospital soon after his bowel surgery. When she saw all the gifts he had received, she asked her parents if she could have surgery too. My daughter, who only thinks she knows what Andrew is facing, has jealously remarked more than once that Andrew has already received his Christmas. It’s hard to convince her that Andrew has earned it all, and then some.

Who here knows what it feels like to have your intestine rot inside of you? Who here knows what it’s like to have cancer? Who here knows the fear of being separated from your family before being rolled to the uncertainty of anesthesia and surgery? Who here knows how it feels to have multiple surgeries close together? Who here knows what chemotherapy feels like? Who here has spent weeks in the hospital? Who here has to submit to vital sign checks around the clock? Who here has a line of doctors patting your stomach and listening to your chest several times a day, every day? Who here has to unplug from a monitor and drag around an I.V. tower every time you need to use the toilet? Who here has ever felt like a living pin cushion?

Andrew has experienced all that and more in the past month. Keep in mind, he’s five years old. Also keep in mind that we have barely begun his cancer treatment. The worst is yet to come.

If some good things come his way because of all this, we accept.

Today, Alec Burks of the Utah Jazz stopped by with two Jazz dancers and two of the coaching staff. Andrew isn’t a Jazz fan (yet), and neither he nor Alec were chatty in the two minutes they were in our room. I thought it was cool, though. And I have photos. To Chris and all my brothers-in-law who are Jazz fans, I have one thing to say. Na, Na-Na, Na, Na!

Utah Jazz, Primary Children's Medical Center

A visit from the Utah Jazz

We are eligible to apply for Make a Wish, and it sounds like there is a pretty good chance that Andrew will have a wish granted. Contrary to what I used to think of Make a Wish, kids do not need to have a death sentence to qualify. The illness just needs to be life-threatening. Well, if that’s all… It boggles my mind that we are in that position, but since we are, we are grateful for this kind of opportunity for Andrew. Don’t think we aren’t giving him ideas.

Andrew has benefitted from many more gifts from many more friends. New toys arrive almost daily, as gifts from friends or the hospital or other organizations. I’m not sure where we will put them all at home. They long ago overflowed the hospital room and we are now working on a rotation basis to keep the supply fresh. Fresh toys really do cheer Andrew up. Yesterday, this K’nex roller coaster arrived, fully assembled, in its display case. It’s quite the conversation piece. Even seasoned doctors are fascinated by it when they see it for the first time.

2012-12-04 15.26.34

I hope it doesn’t sound like bragging to write about these things. We have been so grateful for all the resources we have been given for keeping Andrew’s spirits up. We would give it all back and more if we could walk out of the hospital cancer-free tomorrow. We feel humbled by your generosity and hope that we can pay it forward someday. We hope to be sensitive to those who endure less “glamorous” trials. Cancer gets a lot of attention, but there are many who endure unimaginably difficult things with far less support.

Andrew is doing better today. We have reason to expect that his kidneys will resume their normal function within a few days. We are already seeing improvement. Infection is still a threat, so while the antibiotics that probably caused his kidney malfunction are no longer being used, another one has taken their place. Andrew’s weight has improved. He is even looking a little chubby, though that’s probably a side effect of the steroid Prednisone. There is no more talk of nose tubes, though Andrew is getting extra nutrition through an I.V.

We have the luxury of worrying about routine things like exercise for a moment. We take short walks when we can, despite Andrew’s protests. We have seen a physical therapist a couple of times in the past week. Sitting in bed is not how a five-year-old (or anyone else) ought to spend his whole day. We learned about the therapy gym on the 2nd floor today and will hopefully get to see it on some days when Andrew is feeling good.

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