Diagnosed May 2021 at 20 years old

Chansen’s cancer journey has been long.  He was diagnosed with ALL B-Cell leukemia in May of 2007 at 6 years old and had treatment for 3.5 years.   He was cancer and chemo free for 1.5 years before receiving a relapse of Leukemia in his spinal fluid in February of 2012 at the age of 11.  He went on to have treatment for another 2.5 years and ended his treatment on May 22nd, 2014. 

Chansen remained a top student and advocate for other children battling throughout his fight with cancer which included 6 fractures to his spine, a blood clot and a stroke to name a few.  He started speaking and advocating at the tender age of 7 to raise money for the children’s hospital and to raise money for pediatric cancer research. He graduated in 2019 top of his class earning a Aice Cambridge diploma and was accepted to the University of Central Florida.  Second semester of his first year at a university Chansen’s heart went into ventricular tachycardia at his dorm room which landed him in the cardiac ICU.  Another side effect from treatment.  

Chansen is now 20 and he went in for an annual follow up appointment in May 2021.  During a routine ultrasound to check for gallstones they discovered Chansen has 7cm tumor on the lower left lobe of his liver.   After a CT they discovered that it was malignant. After two biopsies and being turned down by Moffitt cancer center for surgery we found Drs. Kent and Schadde at Rush. The second biopsy they did on Chansen’s tumor in late June revealed that Chansen does have Fibrolamellar carcinoma, but with a twist.  Chansen has all the markers CK7, CK68 etc, however the gene fusion he has they have not seen ever before, he has the PRKACA but fused to something else.    They also discovered in follow up CT in late June that After eight weeks trying to get him diagnosed and without any treatment, he grew another 7cm tumor in the right lobe of his liver and metastasis spread to the local Peritomeum region. 

They coordinated with his oncologist that has been treating him since he was six for leukemia at Golisano Children’s Hospital in Fort Myers, FL to start Gemox and Levatinib. 

He has done two cycles at Golisano and the follow up scans on September 1, 2021, have shown that it has shrunk both liver tumors and the metastasis region.  We now or wait for the Rush team to decide how many more cycles of chemo and when we will go to his first surgery as they are planning a staged surgery approach.


Sadly, Chansen passed away in April 2024.