In case you didn't already know, this little chick ^ is my youngest, Kenny. She is the smartest kid we've created {don't tell the other 3}, the kindest soul I've ever met {it's true} and a complete and total fashionista.{like her momma.} Also? She was diagnosed with Juvenile Dermatomyositis on September 22nd, 2009. JDM is a rare, life threatening neuromuscular autoimmune disease where it's basically all hands on deck as your immune system attacks your muscular tissue by breaking down and blowing out your blood vessels, specifically in the muscle tissue. Good times. Oh, and no cure? Rock On! We hit the Genetic Disease With a Possible Environmental Trigger JACKPOT. {I kid.}{I laugh because if I didn't, I'd be crying.}
But, guess what, friends?! Today we are CELEBRATING a GREAT MILESTONE! Today is the first day since diagnosis almost 2 years ago that Kennedy is STEROID FREE!!!! If you have never personally taken steroids or known anyone that has, that might not sound like a biggie. So, let me tell you why it IS Quite A Big Deal. Steroids are indeed a life saving medication. Prior to the advent of these wonder drugs, autoimmune diseases and diseases of inflammation regularly killed people. Because of this? I LOVE ME SOME STEROIDS. But for real? They are an absolutely devastating drug to endure. The side effects are ghastly. Weight gain. Massive and devastating stretch marks. Bone death. Cancer risks. Cybil style mood swings in a bottle. And? If you ask Ken, the aftertaste of the liquid stays with you alll dayyy longggg.
This ^ is Kennedy about 6 months before diagnosis. You can see her telltale JDM rash. She was laying in bed because she was weak, but I thought it was because her sister was sick {asthma flare} and she wanted some extra attention because of all the attention Piper was getting. Man, mother guilt is REAL.
This is Ken ^ about a month into treatment. We cut her hair short because it started to fall out from the {actually very small dose}chemo shots she was getting. {about a month after, someone clued us into folic acid supplements which helped save the hair, YAY!} But wow. The changes in my little girl happened faster than I was prepared for. AND? STEROIDS MAKE YOU CRAZY! Like, instantly bi-polar. Fun times.
At one point, she was getting 1000 mg prenisone infused EVERY WEEK. Dude. Seriously.
It's been a super hard two years. These pictures used to be sad for me to look through. But honestly, not anymore. They humble me. I look at them as a GREAT REMINDER that no one is merely what their packaging looks like. I wish more people thought that way... Because for real? We got used to people staring and judging whenever we went out, mostly if we ever dined out. I can only guess what they were thinking and judging.... Mostly, I would guess they thought I was a bad mom. Boy, and I felt it.
Sometimes I get a little pissed off about it. Its not all sunshine and unicorns pooping rainbows around here 24/7. But then I stuff those feelings down with a donut :) {or.... 12} {I wonder why my pants are so tight....} {Cure for tight pants??? BUY BIGGER PANTS! ba-dump-bump!}
But today? I am glad to report that the next time we go to Disneyland, it will likely not require a use of a wheelchair.
And my little warrior had her port removed almost 3 weeks ago, so hospital stays? Hopefully will soon become just a distant memory.
This is Ken a couple of weeks ago, drawing artwork for Make-A-Wish. I smile and cry when I look at this because she has come so far. While she is still on the rest of her meds {of which there are many} she is a FIGHTER and she is winning the great fight, I just KNOW IT. We take it day by day, especially since there is no cure {yet}. We have learned to adapt to the fact that her and the sun are total frenemies. {I tell her she is going to have the most beautiful, wrinkle free skin when she is old like me} and hopefully one day soon, she will reach remission. And today? I am, without fear of what could come tomorrow, going to CELEBRATE today. I think at the height of the chaos that 'roids brought into our life, I promised a pony ride the day she was off the juice..... I guess I better start googling some horse stables.....