Decklin loves Legos, Super Heroes, Lego Ninjago, playing outside, cats, and our pool. He is a very sweet child (when he is not on steroids). He loves to quote TV shows, which he memorizes CRAZY well. This is mainly the function of his autism. He LOVES his oldest brother. Not really sure how we are gonna handle that one when Ethan leaves for college in the fall. He enjoys wrestling and jumping on the trampoline with his brothers.
A few days before we were diagnosed, Decklin began crawling around the house telling us his legs felt bad. We thought he was just being a little silly. Next, he had a fever and pain in his side. I assumed it was appendicitis. It was in, fact, his liver working in overdrive trying to rid his body of all the immature white cells. We went to the ED and were “informally” diagnosed by the ED doctor with leukemia. He was transported Oakland Kaiser that night and started treatment the next day. His official diagnosis of ALL B-cell High Risk Leukemia came on April 21, 2015. We were diagnosed with High Functioning ASD the month before as well.
Decklin has missed a bunch of school due to his diagnosis and that is something that we are constantly fighting against. His autism presents an additional difficulty when it comes to both treatment and school.
The toughest part of the treatment for everyone was in the beginning when Dex was in liver failure. We almost lost him at that point and his liver numbers are something we are always watching, even today. That was really scary.
We are currently in the maintenance phase of treatment where Dex gets monthly infusions of chemo and a monthly antibiotic. He also gets spinal chemo every third month where he has to be put under. We also take a daily oral chemo and takes steroids for five days every month.
Having cancer has limited what our family can do and where we can go. Other than school, we have tried to limit the amount of time Decklin spends around other people due to lowered immunity. He has had so many pokes to check his blood levels, we have lost count.
I would like to think that this diagnosis has helped the other family members become much more compassionate toward others with illness and their brother’s plight. We will not know for sure how this has effected the entire family for years. My oldest son spent his entire High School career with cancer as a constant companion. He graduates this June. Decklin was diagnosed on my second son’s 12th birthday. He calls it “the sad day”. My third son lives in the same room with Decklin full time and has had to watch all the “good” things Decklin has received due to the diagnosis. Mainly legos…
My husband and I are very cancer weary but feel very blessed that we have such wonderful insurance and that I am able to stay at home full time with Dex. I am just grateful that I can be his full time caregiver and be there for him when he needs me.
Hope session by Jenn Hoffmann Photography | Facebook | Instagram