Cancer Scan Day

Today 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… 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.

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!

If living well is the best revenge…

THEN TAKE THAT, CANCER!

And that.

And that.

And that.

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!”

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.

  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.

Playing with the Utah Jazz

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.

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.

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!

Andrew and Paul Millsap

Celebration Vacation

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.

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.

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.

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.

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

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

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:

Feeling wild at the San Diego Zoo Safari Park

Safari Park Butterfly Exhibit

Baby Elephant at San Diego Zoo Safari Park

Cheetah at San Diego Zoo Safari Park

Andrew vs. Lego Darth Maul

Lego Chewbacca and R2-D2

Sea Life Aquarium tunnel

Playing at the beach

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.

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.

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!

Best Easter Egg Hunt EVER!

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.

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.”

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.

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.

Welcome to the weekend

The weekend is here! I am glad to say that we have plans.

Andrew’s blood counts came back this morning and they are all heading in the right direction. His ANC is 3.3, which is pretty good. So… We’re free! We’re free!

Tonight is Family Movie Night at our house. We eat pizza and popcorn in the family room and attempt to find a movie that appeals to everyone. That can be challenging at times, but I am optimistic about tonight. Rise of the Guardians is ready to load into the Blu-Ray player.

Tomorrow, we are planning to attend the Make-a-Wish Easter Egg Hunt at the Ogden Eccles Dinosaur Park. It will probably be really cold, but it sounds like it will be a lot of fun, so we are excited.

I am grateful to everyone who has followed our blog every day for the past few months. Now that our days are less newsy, we may not write new posts every weekday. We will still report every time something interesting happens – and it will! Our final scans and our Make-a-Wish trip are still on the calendar.

If you have not subscribed to Living With Burkitts, and want to make sure you don’t miss a post, now is a great time to do that. Just enter your email address in the right sidebar and every new post will be delivered to your inbox when it is published. I promise not to give your email address to anyone else.

Enjoy your weekend, everyone!

Thank You

I know many of our blog entries have a common theme of gratitude for the kindness of others. I feel like I need to write one more as we are hopefully near the end of this trial. I don’t think you can go through something like this without being profoundly changed. The change that has been greatest for me is the extension of my appreciation for others.

Selfishness is a concept that is easily understood; the rewards of such behavior are immediately realized and apparent. Kindness is not as easily fathomed. I know why someone would try to get as much as they can while extending as little effort as possible and it usually disgusts me. A trip to Walmart, or an amusement park, will usually offer a cornucopia of base human behaviors. However, hidden behind this veneer of the visibly apparent natural man is an underworld of kindness seen at its fullest strength when facing a time of crisis.

I have been truly amazed at the capacity of people to be kind to others. And not just from those you might expect. One would think that family, ecclesiastical leaders, co-workers and close friends would reach out and help when times are difficult, and those people have not disappointed. However, we have been blessed with enough spontaneous, and often anonymous, cash donations to cover nearly all of our medical costs. We have received gifts from people we haven’t seen in years. Dear friends in the medical field have offered free and wise counsel.  It is surprising who reaches out, and who doesn’t. I have learned something meaningful about people.

Sometimes I feel encompassed by kindness. Random acts of selfishness and boorishness feel jarring instead of commonplace. A couple of weeks ago I was cut off by a car on the freeway. Anyone who has driven in Utah for any length of time cannot be surprised. I was surprised by how taken aback I was by this rude act. I started thinking, “Doesn’t this guy know this isn’t how people behave?” I worry that as Andrew’s cancer starts fading into the rearview of life that I will also be lulled into forgetting the important lessons I have learned over the past few months. I know the only antidote to future apathy is to jump in and be a part of extending kindness to others.

This world of kindness and compassion is one I forever want to be a part of. It is really easy when you think about it. My church offers an infrastructure of service opportunities. I haven’t taken advantage of that as fully as I should.

There are so many charities deserving of help. In the past, the charitable organizations that have received most of my money are those involved in research like the Multiple Sclerosis Society, Cancer Society, etc.… I now have a much higher respect for those who practice a more applied charity such as the Make-A-Wish Foundation, Primary Children’s Medical Center and HopeKids Utah.  These organizations provide something almost as important as life saving research. They provide motivation, hope, optimism, courage, and anticipation to children who need it when they fighting such a difficult battle. People who volunteer for these organizations are truly angels.

I am grateful to all who have asked how Andrew is doing. I love all those who tell me Andrew and our family have been in their prayers. I have received much spiritual endurance throughout this ordeal and much of it has come from the prayers of others. I am especially touched when I hear the prayers of children for Andrew. Their pure pleas always soften my hardened heart.

I also appreciate the warm thoughts from those who claim to be atheists or agnostic. I have a feeling God also hears their thoughts and counts them as prayers despite their best efforts.  I really wish I could list all those who have helped us through this difficult time. But there really are too many to list. I also wish I could express to everyone who has offered even the smallest act of kindness towards my family the extreme gratitude felt. We truly have been buoyed by all of you.

No act of kindness is wasted or taken for granted – at least not by me.  Thank you!