Living with Burkitt's

One family's experience with Burkitt's Lymphoma

A Happy Thanksgiving!

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

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

Thanksgiving 2012

November 22, 2012 – Thanksgiving Day

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

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

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

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

November 22, 2013

November 22, 2013 – Cancer scan day

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

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

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One year ago…

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

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

On Election Day, Andrew had an appendectomy.

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

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

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

Florida Trip…
Written by: Madeline

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

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

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

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

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

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

The next day, I went to the Classic Disney.

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

Ok…back to my story.

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

We got fast passes to every ride for free!ride

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

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

In Japan we got cool Japanese poncicals.

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

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

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

Sadly, we had to leave.

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

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

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

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