Living with Burkitt's

One family's experience with Burkitt's Lymphoma

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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If living well is the best revenge…

THEN TAKE THAT, CANCER!

Zip Line

And that.

Zion Ponderosa

And that.

Zion National Park

And that.

Bike

Last week, the kids and I were hosted by the Zion Ponderosa Ranch and Resort near Zion National Park in Southern Utah. I was there to write a review for my family travel blog, and my children were happy to do their part by trying out the zip line, bungee trampoline and climbing wall.

Both Andrew and Madeline fearlessly jumped off the zip line platform at the top of the barn, not once, but twice. In his goofy way, Andrew yelled, “I believe I can fly!” as he jumped into space. And he did fly. I love the look of wonder on Andrew’s face in the zip line photo at the top of this post.

The next day we visited Zion National Park with my dad and hiked the Canyon Overlook trail. Madeline wanted a photo of herself in mid-jump, and then Andrew wanted one too. Notice the shadow underneath his feet.

The last photo is of Andrew on his new bike. Both our kids outgrew their old bikes last year, so we used our tax refund to buy them new bicycles. The next day, I took Andrew to our church’s parking lot to practice riding the new bike, which is slightly big for him. When I see that smile on his face, I think, “VICTORY!”

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The spoils of war

Now that Andrew is no longer in treatment, I have taken inventory of all of the excess cancer care supplies that filled our home for the past few months.

Here are some of the items left over from our visits to the pharmacy, inpatient hospital stays, home health care deliveries, and so forth:

  • A few of our leftovers.

    A few of our leftovers.

    alcohol prep wipes
  • face masks
  • non-latex gloves
  • wound dressings
  • ointment for removing sticky dressings
  • medicine dosing cups and syringes in various sizes
  • absorbent bed pads
  • baby wipes
  • rinse-free disposable bathing cloths
  • PICC line caps
  • PICC line covers
  • PICC dressing changes
  • 4 PICC line arm covers for baths that we never used at home – plastic wrap worked better
  • new needles
  • I.V. tubes
  • I.V. fluids
  • I.V. antibiotics
  • I.V. pump bag
  • Saline flushes
  • Heparin flushes
  • tube feeding bags
  • new nose tube
  • tube feeding pole
  • Coban wraps in various colors
  • Biotene mouthwash – one bottle from every hospital visit
  • pink hospital tubs aplenty
  • hospital pillows – we brought them home because they would have been thrown away. We may eventually do that anyway.
  • leftover medications
  • and so much more…

My top priority was to get rid of the prescription medications – especially the controlled substances. Those have been dropped off at our local police station.

The home health care company told me to throw everything away that I couldn’t use. They cannot accept returns. I kept anything that could be used for first aid and donated the rest to a friend who has ongoing home health care needs.

The feeding tube pump was a rental. I notified the company that we no longer need it, and they picked it up about two weeks later. I’m not sure what I’m supposed to do with its pole, which they would not take back.

I have a box full of tube 500 ml and 1000 ml feeding bags that are not returnable. If anyone has a creative use for those, I am open to suggestion.

I kept a handful of items, like the last few doses of Neupogen, just in case. We are hopeful that the cancer will not return but I’d hate to get rid of those things now and then need them again in a few months.

The odds are in our favor, so I look forward to the day when I can get rid of all of our cancer supplies for good.

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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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Celebration Vacation

We brought our kite to the beach.

We brought our kite to the beach.

The day after Andrew was declared cancer-free, we set off on a road trip to Carlsbad, California. It was the vacation we hoped it would be, and it was good practice for our Make-a-Wish trip to Walt Disney World in June.

Legoland California

Entrance to Legoland

Carlsbad is located in Southern California, just north of San Diego. It is the home of LEGOLAND California Resort, which seemed like the perfect destination for Andrew. The San Diego Zoo Safari Park is nearby, and our hotel had an ocean view.

San Diego Zoo Safari Park

Feeding the birds at the Safari Park

We spent one full day each at the Safari Park and LEGOLAND. We spent partial days at the beach, where it was not quite swimming weather, and at the Sea Life Aquarium, which is part of LEGOLAND. On our way out of town, we stopped at the Old Mission San Luis Rey de Francia, the largest historic mission in California. We also picked up delicious, ripe strawberries, avocadoes and tangerines at a farm stand.

Hilton Garden Inn Carlsbad Beach

playing at the hotel pool

When we weren’t doing those things, our kids were in the heated hotel pool. We carved out two half-days for the pool at the family-friendly Hilton Garden Inn and Madeline especially loved every minute of her pool time.

Carlsbad Sea Life Aquarium, LEGOLAND

After the diver show at the Sea Life Aquarium

Andrew has always been our little homebody, and since he had so much downtime during his cancer treatment, he is even more so now. He did enjoy LEGOLAND, and he is still just as excited for Disney World, but we weren’t there long before he started asking when he could go back to the hotel to build his new Star Wars LEGO kit. He did occasionally complain about being tired, but I noticed that he had plenty of energy when he wanted to – even late in the day.

San Diego Zoo Safari Park

San Diego Zoo Safari Park

We also learned that Andrew’s post-cancer appetite is more of an all-day grazing style. He would eat a small breakfast every day and insist that he was full, then ask for a snack within the hour. We will need to pack provisions in Florida.

Old Mission San Luis Rey de Francia

Old Mission San Luis Rey de Francia

Overall, Andrew was healthy and happy on this trip and we still feel so grateful. It is symbolic that he started feeling the stomach pain that led to his diagnosis on the day after Halloween and that he was declared cancer free two days before Easter. I feel that we have been given a new life, and we are grateful to our Heavenly Father and our Savior Jesus Christ for it.

Here are a few more photos from our trip:

San Diego Zoo Safari Park

Feeling wild at the San Diego Zoo Safari Park

San Diego Zoo Safari Park

Safari Park Butterfly Exhibit

San Diego Zoo Safari Park

Baby Elephant at San Diego Zoo Safari Park

San Diego Zoo Safari Park

Cheetah at San Diego Zoo Safari Park

LEGOLAND, Darth Maul

Andrew vs. Lego Darth Maul

Legoland Star Wars

Lego Chewbacca and R2-D2

Sea Life Aquarium tunnel

Sea Life Aquarium tunnel

Carlsbad California
Playing at the beach

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Drum roll, please…

Today is the day we found out whether or not Andrew’s cancer is gone. We arrived at Primary Children’s Medical Center at 9:00 a.m. and spent the morning in Cardiology and Radiology getting an echocardiogram, EKG and CT scan. Until today, I didn’t know there was a difference between an echocardiogram and an EKG. One uses ultrasound, the other is electrical.

Chris and I nearly panicked at one point in the CT Room. Andrew was doing well – acting like a typical 6-year-old. He is no longer worried about CT scans and he was acting silly. The area where the medical staff views the CT is separated from the radiation area by a soundproof glass wall.  As the doctor looked at Andrew’s scans, we noticed that he seemed very concerned and that the tech was crying. We found out that they had been talking about something sad that had happened in the tech’s life, but we were really worried for our family for a few minutes.

We arrived in the clinic at noon, and we waited. And waited. The CT computers were having technical difficulties, which did not allow our doctors to see the results.

We learned quickly that Andrew’s immune system is nearly at zero today. What!? It was normal last week and it wasn’t that low yesterday. He has had some diarrhea and a stuffy nose the past few days, but otherwise seems to be fine. Unfortunately, it was enough to knock out his ANC in time for the big day. It nearly threw a wrench in our Spring Break plans.

Our doctors were uncertain whether or not it was a good idea to take out Andrew’s PICC line with an ANC that low. They ultimately decided that it would be OK because his monocytes (another part of the white blood count) are high. That’s an indication that the ANC is on its way back up.

Furthermore, PICC lines are meant for the short-term. Even if Andrew still had cancer, they would need to put in a new PICC line or a port. The PICC line is gone.

With that behind us, we moved onto the diarrhea problem. It is probably a virus, but C-Diff is still a possibility. C-Diff is an infection that cancer patients are especially prone to, and it can wreak havoc. Because we waited around for so long at the clinic, Andrew finally produced a stool sample and we will call in the morning to see if we need to fill an antibiotic prescription for C-Diff.

Our day was starting to feel like the results show of American Idol. We’ll reveal the answer… after these messages! At 3:00 p.m., we finally went to lunch, hoping that the CT results would be available when we returned.

They were! And we learned that…

Andrew is cancer-free!!

His echocardiogram and EKG were normal, indicating that the chemotherapy didn’t damage his heart. The CT scan of his abdomen, where the original tumor was found, was clear. Two small spots were found on his chest CT, but they are “unlikely” to be infectious and “very unlikely” to be cancerous.

We will return to the clinic in seven weeks for another CT scan or ultrasound. Burkitt’s Lymphoma is very aggressive and if it is coming back, it will probably come back quickly. They’ll be watching those spots.

In the meantime, we are celebrating Easter and Andrew with my family tonight and Chris’ family tomorrow. We will be in California for a beach vacation by Easter night. If Andrew gets a fever, we still need to go to the Emergency Room wherever we are. The odds are in our favor though, and we are excited for this opportunity to celebrate and spend time as a family. I’ll share details and photos when we return.

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Back to School

2nd First Day of Kindergarten

Yesterday, Andrew went back to school. On Monday, during a particularly bored and restless moment, I asked him if he would like to go back to school on Tuesday, and the answer was an enthusiastic “Yes!” He is attending half-day Kindergarten for three days this week. We think he’s up for that.

I contacted his teacher and principal, and getting Andrew back in was pretty easy. We had a few requests to ensure his health and safety while we are still waiting for his final scans and removal of the PICC line:

  • No P.E. or outdoor recess
  • He will bring his own water bottle. No public drinking fountains, please.
  • Please keep him away from children with obvious symptoms of illness. I know all parents want that, and we are playing the cancer card to get it this week.
  • No rough play with other children.
  • He must wear a hat whenever he goes outdoors.

The last rule is the only one I hope he will need after our visit to the hospital this Friday. He will be on an antibiotic called Septra for a few months that will make his skin more sensitive to sunlight. We are grateful that his teacher and the office staff have been so concerned and accommodating.

Circle Time

Mine is the bald one

Two days down, and Andrew seems to be doing well. I’m sure that he is behind in his learning, but I am hopeful that we can help him catch up quickly. Andrew’s teacher reports that Andrew seems to be a little overwhelmed by the Kindergarten atmosphere and rules. After three hours in a room with 20 six-year olds, who wouldn’t be overwhelmed after being away from it for five months?

She also reports that Andrew’s attitude can be challenging when things aren’t going his way. I admit that we spoiled him over the past few months, because he had to endure so much. We have been accommodating, but we are moving back to a less-indulgent parenting style at home, and we will support consequences for inappropriate behavior at school. I hope that’s not too rough on the boy, but I think it’s good for him.

Andrew looks fragile with his bald head, skinny body and the aura of his recent history, but he isn’t. He powered through the field trip at the children’s museum last week and came home with energy to spare. We want to keep him healthy so he shows well at his big appointment this Friday, but I don’t think he would fare worse than the rest of us if he picked up a virus at this point. It was always the bacterial stuff we were most worried about anyway. I am grateful to have reached this point of his treatment, and am optimistic, and anxious, about our appointment on Friday.

Stay tuned, everyone!

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