From Brain Surgery to Lymphoma:
Xander first had what may have been a seizure in Dec 2019, around Christmas, and an arachnoid cyst was found in his brain. On July 27, 2020, he had surgery (Craniotomy Fenestration) at Primary Children's Hospital to remove the cyst. The surgery went well and recovery was being managed at home.
On Aug 12, 2020 Xander started having severe abdominal pain. Because of his recent head surgery, doctors directed him back to Primary Children’s Hospital. After some testing, they found inflammation and a growth in his abdomen. They needed a clearer picture, so they admitted him. On Fri Aug 14 he had a biopsy of the growth, a lumbar puncture, and a bone marrow biopsy. On Sat Aug 15 it was confirmed that Xander has Burkitt's Lymphoma, and the team started treatment that night. Burkitt's Lymphoma is a Non-Hodgkin's Lymphoma that grows very quickly. After several rounds of chemo, the scans showed that traditional treatments were not working.
On January 14, 2021 we met with a specialist, Dr. Cairo who works with the small percent of patients who don’t respond to traditional treatment for Burkitt’s Lymphoma. Xander got on a plane on January 16th to fly to New York where Dr. Cairo practices. The treatments are working, slowly but surely, and Xander has been there since.
We are so grateful for your love and support, we feel so blessed by all of you!
In order to focus on Xander and our family we are asking for the following:
Messages that help
Things that are bringing you joy
Updates about your life
“You are on our minds/we are praying for you/sending you good vibes”
Entertainment for the kids
Asking permission before advice
Messages that don’t help
Specific questions about diagnoses/treatment. We will update here with the information we have!
Expressing your anxiety and worry
Dumping in (https://www.latimes.com/opinion/op-ed/la-xpm-2013-apr-07-la-oe-0407-silk-ring-theory-20130407-story.html
Asking about Xander’s pain
Religious explanations (God has a plan)
Advice/”I know just how you feel”
We’ve found this to be a really helpful guide: https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/supporting-friend-who-has-cancer