Living with Burkitt's

One family's experience with Burkitt's Lymphoma

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.

1 Comment »

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

1 Comment »

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