Saturday, October 20, 2012

Slow and steady wins the race.

We had a really great week last week with Cashy. It was so great to see that his personality and spunk are still there and It was so amazing to see him doing so well on his week break off the oil.
Cashy went hot tubbin, he rode his bike a couple times for a few minutes, he went to the store (walmart, good food store, albies) numerous times with mike and I, he played play dough with a buddy, he colored, he ate food here and there (he hasn't done that in over a month), he even went to the matisyahu concert with us all for twenty minutes or so before he was ready to go to grandmas (that was his idea, we were on our way to drop him off at grandmas and he kept saying "I go, i go" so of course we took him, anything for our sweet brave boy), he played with his sissy and big bro for a bit here and there and he even lounged in dads work chair downstairs for a few hours and watch movies. He was talkative, sweet and goofy. It was great, amazing, wonderful all in one and really gave us hope knowing he is doing so well almost three months (4 months since he started getting sick) after being diagnosed for the third time with this evil PNET brain tumor.
Over a month ago when his eyes started moving inwards and twitching side to side we really were discouraged, but knew deep down that these are the side effects we tell other parents that have their children on oil, their eyes will move weird. Granted cashys tumor is on his optic nerve, yes they're going to move weird, but the oil relaxes all your muscles and cashys eye muscles are extremely weak from surgery and radiation. But since taking him off the DCA (which major side effect of dca are weakened muscles) his eyes are evening out and the rapid eye movement and crossing are almost completely gone, were really excited and thrilled. Seeing your babies eyes cross and move uncontrollably is so upsetting and worrisome, I'm really relieved its subsiding. Actually I'm freaking over the moon excited!
When he was diagnosed for the third time, the tumor measured 2.7cm. He had been sick for over a month. The end of may he was cancer free, third week of June he was vomiting and acting sick again, after many tests and pokes and prauds after constantly complaint of tummy pain, we opted for a MRI early. So it was 2.7cm July 27th, this means it grew that much in less than two months. Theoretically his tumor should now be around 7cm if its growing at that rate. When he was diagnosed the first time in may 2010, it was 4.5cm and he was blind and his eyes were buldging out of his skull. So with this it tells me that were doing something good right now, he's holding his ground and I know in my heart this tumor is shrinking. This is a brain tumor, it's alot more complex than breast or prostate cAncer, we have to break that blood brain barrier, so were hitting him very hard with the oil, this is his chemotherapy basically and I have to be patient and know its going to take time to completely heal our baby.
Some days are harder than others, the first night back on the oil after the week break was miserable for ALL of us. He was up all night every hour wanting water, whining, refusing to let us hook up his feeding tube, his new thing is he says "in a bit", well it's in a bit to everything now. He doesn't understand that twenty minutes later is "a bit", he puts up the biggest fight with that thing. Seeing two grown adults trying to hold down a tiny 22 lb 4 year old, well it'd be one for you tube, this kid has the strength of the hulk! Most nights he refuses to even let us hook it up, its a constant fight, he basically will rip it out of his tummy. Not good. So we're hitting him hard with the vitamixer all day long. It's actually better for him, its real food with substance, the tube feeding makes him have really really loose stools and he often throws it up around 0530. He doesn't throw up the vitamix blends ever and for the first time since we started this battle 2 1/2 years who he's actually having formed stools. tMi I know, but you don't know as parents how amazing it is for him to actually have a hard poop, lol, this never happens. Enough of the poop talk. :)
One of these days when he's grown and reads all this he's gonna kill me , haha.
Colty and mike took off hunting again yesterday. Today is Opening day of rifle season. Cheers to a big bull tomorrow am! Before they left yesterday colty was cleaning up the camper and he came running in screaming and bleeding everywhere. He had sliced his finger on a piece of broken glass. It was really bleeding and I'm trying to put pressure on it to get it to stop, he's screaming and all of a sudden I got all woozy, light headed and pale..... How weird seriously, I'm a nurse and I work in OB, I see bloody vaginas daily and sometimes blood clots the size of your fist (sorry for the graphic image) and have seen more than you can imagine with Cashy, a little blood from my healthy child I get all dizzy and feel like I'm gonna faint, how odd. I felt like a whimp. I guess when it's your healthy child you never have to worry about being sick or hurt , it effects ya differently. Strange. so i get it to stop bleeding and I put some liquid steri strip on it and bandaged it up all nice ( have an amazing medical kit supply from cashys unused supplies from back in the broviac days), only after having to sit down a few times, I'm not proud of this weakness I showed, lol.
Catherine joy is just such a blessing, she is literally the best baby, she sleeps so well, she eats great, she always has a smile for you. She's just a little angel brought to us. I love her so much.
Sorry didn't finish my post last night, Cashy was ready for bed and wouldn't let me leave his side or let go of his hand. :)
He's been a feisty booger today. Sleepy and whiney. He's been stuffy in his nose for 5 or 6 days now. We think its Just a cold. We've all had a cold bug for the past couple weeks. But then we start over analyzing and thinking its the tumor. His pediatrician told us that the radiologist said in his last scan the tumor is literally millimeters away from his sinus bone and if it grows he will have trouble breathing. So now whenever he's stuffy we get all worked up and second guess everything. Ugh.
The boys got home and Colten requested I make pasty pies for dinner (yes with meat! But I used bison, we never eat meat so once in a while its a special treat, even most the time we regret it later) And I baked acorn squash. It was very yummy and they both scarfed it down like hungry orphans. Lol.
Everyone have a nice week and thanks for all the prayers and well wishes for Cashy! They're working!' TTFN!
Oh and everyone who's asking when his next scan is; we'll were not sure, we haven't decided!


  1. Hugs to you and your beautiful family! You are everyone of you absolutely beautiful people. Thank you for sharing your lives with us. Lots of Love from Texas to y'all!

  2. Prayers and well wishes from Kentucky going out to you all!

  3. Thanks Super Momma for the update!

  4. So much love coming from us you can't imagine. Your family is an inspiration! Love, Candace Junkin -Assistant Director of Moms for Marijuana.