Living with Burkitt's

One family's experience with Burkitt's Lymphoma

A Happy Update

Gold Ribbon Childhood Cancer AwarenessHello all! It has been a while since we’ve updated Living With Burkitt’s, and much of that has to do with the happy fact that there has been very little cancer-related activity happening around our house lately. We returned to Primary Children’s Medical Center today for the second cancer check-up since the last update to the blog. Andrew is still cancer free!

Adding to the good news, Andrew completed his treatment 17 months ago, and it is rare for Burkitt’s Lymphoma to return more than 18 months after treatment. We have been going in for check-ups every 2-3 months, and now we can wait 6 months before the next check-up. Furthermore, the check-ups are likely to be less intense. Our doctors will likely check for tumors via ultrasound instead of a CT scan from now on. Ultrasounds do not use radiation or contrast fluid, which reduces the risk of future cancer or kidney problems.

River Rafting

River Rafting in Dinosaur National Monument last June

Fewer and less involved visits are great news from a financial perspective as well. We started 2013 in the thick of inpatient treatment and had incurred all of Andrew’s out-of-pocket expenses by January 15. So, our post-cancer check-ups in 2013 only cost us about $45 each in co-pays. In early 2014, a bill for hundreds of dollars after our first check-up was a not-so-fun surprise.  In May 2014, we had the big one-year visit with an EKG and CT scan. As some of you probably know too well, those aren’t cheap. That half-day at the hospital finished off Andrew’s 2014 out-of-pocket limits on our insurance, as each department sent its own bill. More than a year past treatment, cancer is still expensive. We still had savings to cover the expenses, and that was a big relief.

Aside from the occasional clinic visit, Andrew no longer thinks of himself as a cancer patient. He had a great First Grade year, where he finished near the top of his class. He is excited to start Second Grade next week and is entering school with no current medical concerns. Cancer doesn’t worry him. He reserves his anxiety for the same types of things that other kids worry about, like big roller coasters and going to sleep in the dark. I’m thrilled by his innocence and lack of perspective that 7-year-olds should have.

At Snowbird in August

At Snowbird in August

Andrew figures that if he beat cancer once, then he could beat it again. He doesn’t realize that the odds are against him if Burkitt’s returns a second time and that his odds of getting leukemia are a little higher than average. And why should we tell him? It’s now unlikely that his Burkitt’s will return, and who knows how much will be achieved in the field of cancer research in his (hopefully long) lifetime?

September is Childhood Cancer Awareness Month. I have loved seeing friends participate in the ice bucket challenge and donate for ALS research this month. If you’ve been involved, good for you! I hope you’ll also join me in supporting the cause against childhood cancer. Andrew’s cancer was cureable, but also so rare that pharmaceutical companies have little financial incentive to improve the sledgehammer-like treatment that has been used since the 1970’s. Other types of childhood cancer, like the brain cancer DIPG are still 100% fatal.

We have been making a small donation each month to the Leukemia & Lymphoma Society for several years – ever since Chris’ sister beat Hodgkin’s Lymphoma in her 20’s. I’d love it if you’d join me, or donate to another cancer-fighting organization of your choice such as Curesearch, St. Jude Children’s Research Hospital or Utah’s Huntsman Cancer Institute. Just changing your Facebook photo to a gold ribbon during the month of September will help spread the word.

Much love and and many thanks to all of you who have cheered our family on! We are so grateful for good friends and good health.

Help Defeat Childhood Cancer!