FAQ

What is Piper's official diagnosis?

Piper has been diagnosed with Burkitt Lymphoma, and our best guess is that she is between stages 3 and 4…but closer to 4. Stage 3 encompasses multiple organs (which hers did), but due to the small pocket of affected lymph nodes found on the outside of the brain, and the tumors found outside of her lymphatic system this would classify closer to stage four (definitely advanced stage 3). You can find out more about the different stages by clicking here. (There are other websites referencing kids but this has a good diagram).

Is it treatable? What is the treatment?

Burkitt lymphoma is fatal if left untreated. In children, prompt intensive chemotherapy usually cures Burkitt lymphoma, leading to long-term survival rates of 60% to 90%.  Piper will undergo 4 intense rounds of chemo (every 16-21 days) and then 2-4 more rounds of maintenance chemo. The doctors think she will be done after 6 rounds, but the other two may be necessary if even one cancer cell is detected.

How did you find it?

It took a CT scan to determine her diagnosis. The disease presented itself in her tonsil, which was misdiagnosed (or probably started out as) tonsillitis. Piper was actually scheduled to have her tonsils and adenoids taken out on October 9th. She had suffered from heavy breathing and sleep apnea for a year.

When did it all start? How did it start?

They cannot determine specifically WHY this happened. If they knew the answer to that, then we would probably have a cure by now! But they believe this all occurred because her immune system was already overloaded from being sick and just could not keep up. Lymphoma is an auto-immune type of cancer and many people carry the chance of getting it, but it takes a special situation for the switch to flip and it take over. They believe this all happened in a short course of about 3 weeks.

Where were the tumors?

Being advanced Stage 3, early Stage 4…Piper’s cancer was pretty widespread. She had an extremely large mass inside her tonsil extending 3/4 down the length of her throat, a large mass in her chest, lesions in her left lung, a partially collapsed left lung, small lesions all around her tummy, and her kidneys were three times the normal size, full of tumors. An MRI revealed a small pocket of tumors on some lymph nodes just outside her brain, near her temple.

Is it hereditary?

We also asked this question. The answer is NO. The chances of Brooklynn also getting Burkitt Lymphoma are the same chances as any of you contracting it!

When will she be done?

Her treatment is very intense, so the doctors said her 6th round should wrap up at the end of January 2018. By the time she recovers and clears her last scan, it will probably be closer to the end of February 2018.

She will have to have a few follow up scans or check ups over the next 6 months, but once she hits the 18-month mark, she is considered 100% good to go. We cannot wait to get there!