Live Bravely

(Brady, Codi and Tucker a few days before he went home to Jesus)

"Who are you being right now by not powerfully choosing which direction you want to go? Just choose." - Jason Marz

I love this quote and it resonated deep in my heart for me. In my life this means not being swallowed up by grief when it would be so easy to. It means everyday doing one thing for the cause of childhood cancer so that no other mother will have to feel the sorrow that I have experienced. It means choosing hope over hopelessness and faith over helplessness.


Why Is Our Ribbon Orange?

Why is the ribbon for Tucker's Toybox orange when the childhood cancer awareness ribbon is gold? Good Question!!!

Tucker died of an extremely rare form of acute lymphoblastic leukemia called t(17;19) B-cell precursor ALL.  It is found in less than 1% of all ALL cases and to date has had no survivors.  The awareness ribbon color for leukemia is orange and Tucker Arnold Foundation displays the orange ribbon in memory of Tucker.

ALL is the most common form of childhood cancer and is typically very treatable.  What I didn't know before my child was diagnose is that leukemia isn’t just leukemia.  There are 2 main types of leukemia; Acute and Chronic. Of those, there are two forms call lymphoblastic or lyphocytic and myelogenous or myeloid.  These classifications account for the rate at which the cancer progresses and the group of white blood cells that are affected.  Now here is where it gets tricky...of those two types and forms there are several types of genetic variations to the cancer's dna structure that produce different proteins within the cancer and thus affect the effectiveness of the combination therapies used to treat leukemia.  So clearly leukemia isn't just leukemia.  

Tucker's leukemia produced a t(17;19) chromosomal translocation that encodes a chimeric transcription factor called E2A-HLF.  What does that mean in layman’s terms?  Two chromosomes (the 17 and the 19) within the dna of the leukemic cell traded places, which created a fusion protein (aka: force field) that caused the cell to be resistant to the combination therapies that are designed to destroy it.  This type of mutation or rearranged chromosomes can happen with other chromosomes and each time produce a different affect on how the leukemia will react to the combination therapies used to treat it. 

When I first heard of this I went to Google and looked it up only to find next to nothing and what I did find was dated in the 90's.  I knew the cancer was rare but I was shocked that is was so rare that I couldn't even locate one person who's child had the same form.  Since Tucker's death I have only learned of one other patient so far that had the t(17;19) translocation, who has since earned his angle wings as well.  It was heartbreaking to learn that very little study was being done on this form of leukemia and all of it in Japan.  I am happy to say that two different labs in the US are looking at the t(17;19) translocation and grateful that this in part due to Tucker's case.  Now the most current medical report written is from 2011 and is about my son.  

When  Tucker was first diagnosed I was told he had the good cancer to get only to find out that it was actually one of the worst kinds.  By raising awareness of rare leukemias and the t(17;19) translocation we hope to help the public become aware the leukemia just isn't leukemia. We want to shine a light on this fact and encourage more people to get involved and investing in the research of rare leukemia's.  We are excited that Tucker's oncologist, Dr Chang, is dedicated to researching rare childhood leukemias, now including the t(17;19) translocation.

So while Tucker Arnold Foundation encourages and supports all childhood cancer research and awareness we proudly displays the orange ribbon to bring awareness to rare leukemias and to raise funds for researching the t(17;19) translocation. The more the public becomes aware that there still are leukemias that we are unable to cure the better chance we have to win this battle. 

To get involved and support our efforts please follow the Childhood Cancer Bites and help us take a bite out of rare childhood leukemias.