Tuesday, September 25, 2012

Happy birthday to the best daddy out there!

It's 3 am and I'm sitting here at work, it's so busy here in OB that we had to open another two whole units, because our new OB/labor and delivery unit won't be done for another month (so they say a month, but I'm guessing it will be longer) i got a little panicky and anxious thinking about things.
I'm thinking about how any of these parents who just added a new baby to their family, or are parents for the first time ---these parents could experience exactly what Mike and I are experiencing right now. Tomorrow is never promised and cancer has no rules, it doesn't care about age, or race, or if your a new parent or a parent of 3 or 4 children. Honestly I would never say I'm done having children because I have my "healthy" children and that's all I need. Because you never know what could happen,. No one is ever guaranteed tomorrow. Not that you would ever want to replace a lost child but health is never promised.
When this journey was laid in front of us over 2 1/2 years ago, I had never realized how many children and family's are affected by this horrible disease until we were thrown into this battle unwillingly. It truly opens your eyes to what really is important in life. The nice house, the nice cars, none of it really matters at all if your child is battling for their life. What matters more than your kids? Your own flesh and blood? Nothing. It's all material things that can be taken Away and brought back. But If your child dies, you can't bring them back. Your heart will be missing a piece as long as you live.
My heart is missing a piece, there's a hole in it where 4 year old healthy Cashy should be. He should be running and playing with his brother, learning to ride a bike without training wheels, Climbing trees and skinning his knees and running the neighborhood with Colten and all the neighbor kids.
Whenever I see 3-4 year old kids, I'm always so in Awe how big they are and how well they talk. I think, wow, Cashy should be 40 some pounds and talking really well. But he's 22lbs and talks about as much as a 2 year old. It breaks my heart. Mostly for the fact that he hasn't had that chance to grow and prosper as a normal child.
He was all signed up for head start this year, we went and met some teachers and saw his classroom back in may, Cashy was so excited to go to "school" that day, even if it was just to heck things out, he wore his backpack that day and filled it with markers and crayons. He was so excited for it. I kept saying to myself and mike, man I hope he is well enough this September to start school and even if it's for just a half a day a few days a week, I was thrilled for him to start learning and getting on with life past cancer. A part of me knew it wasn't going to happen but I had all the hope in the world that it would.
Cash has been wanting to get up more lately, he likes to go for rides in dads truck and moms van. We went to the home coming parade with grandma and the cousins on Saturday. He was ok for a few minutes, he mainly wanted to go get candy, even though he really didn't even want to eat it. We left shortly after arriving but I was happy that I was able to get him out of the bed and dressed. Him and cat the went to grandma Julie's while I got to get away for a few hours and attend the griz game, even though we lost, if was good to take a break and visit with family and friends. Thanks for the ticket Jan and Rich!
We decided to take Cashy off of the DCA. We decided that cannabis has so much more to offer than the DCA and with its side effects, such as muscle weakness, vomiting and risk for neuropathy, we just decided against it. We did 4 full weeks on it though. The cannabis oil is everything every cancer patient should have, its a anti nausea, antioxidant, neuoroprotectant, antibacterial, anti pain, anti seizure, and most important anti cancer. So back to the basics again. There's so many promising studies emerging with cannabis shown to stop metastasizing cancers and to ultimately cause apopotosis to the tumor itself, basically it eats itself from the inside out. So we're still praying this is working!! He's comfortable, not in pain, so that's all that matters. That my baby boy isn't in pain. Sometimes he complains of his eye hurting and he holds his hand over it. Which breaks my heart.
Colten and mike got out hunting again and this time took grandpa Jim along with them. jim was able to shoot a deer with his bow and Colten was right there by his side, helping him gut it out! Yuck! Colten was very excited! It's good to see him so happy and full of life. I wish that for all my babies.
It's Mikey's birthday today! The big 29! We're getting old!! Haha. I'll be 30 next month on Halloween! Ahh! Hard to believe we've been together since I was 18 and he was 17. It's been a LONG interesting road of ups and downs, but somehow we always prevail and make the most of it. I wouldn't want to share this road with anyone else, he's my rock and he keeps me grounded and even when I'm down and feeling defeated he's alway there with a positive attitude to keep me truckin along. Even if it's spending Christmas in the Ronald McDonald house thousands of miles away from home, we've made the hardest of hard times memorable. I love him so much for that. Happy birthday baby. I love you! I know exactly what you want for your birthday wish, as mine is the same. I never would of thought 12 years ago when I met you in Mr. kucera's class (with your big black afro, and your tinted glasses) that we'd have three beautiful children, and one who's battling cancer for the third time. Why we were given this journey I don't know, but I do know one thing, that this has made us stronger and better people today, and I wouldn't change that.
I'm still feeling terribly guilty being at work. What is a mother to do? My gut instincts say to stay home and cuddle that baby like he wants me to and never leg him go. But I feel like he's still well enough for me to keep working. Is that selfish of me? I dont know. We still have bills and such that need paid. Pretty much just power, water and phone, screw everything else. Like I said none of it matters.
But when I'm gone for 13 hours I feel so sad and guilty that I'm not there holding his hand like he likes me to do, or snuggling him in one arm and trying to feed baby girl in the other arm. It's such a special feeling to be loved by your babies, to know they need you more than anyone in the world. It's a huge concept, and I love knowing that their ours and no one else's. Our own little breed! :)
Well everyone have a good week and keep our Cashy in your prayers. He's maintaining so that's all we can ask for! Love you all. One love!

Sunday, September 16, 2012

Laying here in bed with Cashy, he is insisting that I "go ny ny" with him, well he has all day. Id love to just sit and lay in bed and snuggle him all day, but then again nothing would get done. Where is the time to clean the house, breastfeed the baby (believe me it is time consuming, she'd be ok with sitting on my nipple all day long) cook my healthy children and husband dinner, homework with Colten, giving colten ( god knows colten is my neglected child, i need to spend more time with him) and cat attention and my hubby too ;), and also try and get a workout in as well (it's my mental vacation, even if it's only an hour).

Cashy keeps me extremely busy, and believe me I wouldn't trade it for the world. With morning meds, making fresh juice, keeping his oil dose in him every three hours, his supplements, hooking up his tube feedings because he won't eat a thing, (and believe me it's all a fight with him, most times he insists his baby sis give him his meds instead of me, yes it's interesting but we improvise, then we have to pretend to take it out, because he gets pissed and says "take it out" we pretend and he's content with that), more meds in the evening along with more oil and supplements.

Sometimes I feel like maybe I wasn't cut out for this job, like maybe I'm not a good enough mom to have such a special child like cashy with cancer , all the responsibilities and worrying, and sweat and tears that come with having a child who's battling a life threatening disease. Well I'm thankful to the lord that I am Cashy (and Colten and cats,)mom and I wouldn't want it any other way but I question if I'm really good enough for such a special boy. Maybe nothing I'm saying really makes sense, I run on minimal sleep.

Every mom wishes the best for their children. They hope for good health, and happiness and they want to give their children everything that they want. But what happens when you can't make everything better, you can't take their pain away, you can't just put a bandaid on it and kiss it all better. Isn't that what a mom is supposed to do, take away their baby's pain? What if you can't? How do you cope with that as a mother. I still don't have that answer, after two and a half years of battling this horrid beast, I still don't have that answer. I want to be able to fix him, make him that same little boy that he was two and a half years ago, but reality is he wont ever be the same. The effects of chemo and radiation are unfathomable, they have wreaked havoc on my baby's tiny body. He hasn't really even grown all but a few centimeters since we started chemo two and a Half years ago. He's a measly 22 pounds at 4 years old. He frail and pale and really tired, really really tired. It breaks my heart to see him so lifeless and wounded. I wish I could just rip that tumor out of his brain and throw if away or take it and put it in my head. He doesn't deserve this, no child does. Fuck you cancer, fuck you. I'll scream it at the top of my lungs. But it won't change anything. Children die everyday from this retched disease. It's not fair, it's not right and reality is big Pharma really doesn't want a cure for cancer, they want our loved ones to be diseased and sickened, it's all a money making scheme at the expense of our loved ones. It's a sad fucking reality and I hate everything about it.

Just lost my angry train of though, Cashy threw up, I made it fast enough and caught it with a bowl, only a small amount on the monkey Jammie's, damn I'm good. But really no mom should have to be "good" at catching vomit on time. Seriously. Fuck.
Man I love this little boy so much, words can't even express the love I have in my heart for him and all my babies.

His eyes are moving weird, the right one turns inward and then will move back and forth really fast. It scares me. Mikes so optimistic about it all, he's always like "man his eyes look good today," I'm thinking, are you insane, their crossed and twitching weird. They don't look good to me. But then again it could be the DCA that he is getting, it's a neurotoxin. Reality is its probably the tumor pressing on the optic nerves. But we're trying our hardest to be optimistic and believe he is getting better. But I'm worried he's not.
Talking with a gal from work the other night about all of this and how we believe his going to get better, she mentions how everything we do or when people see me its always, "how is cashy doing?" she goes, "it'll be so weird for you eventually when he is gone," because we're always so consumed with cash and that's what people think of when they see me. I dont think she wAs trying to be hurtful, but It hurts to even think that it's possible that he could be gone someday. I think about it alot and my stomach churns and makes me dizzy and nauseated. The thought of having to bury your own child. It's gut wrenching.

Colten John turned 8 years old yesterday, him, mike and uncle Grady and Dan are out trying to kill that trophy bull! I hope they can get one in the am! Colty is such a good kid, he didnt even want a big party he wanted to go hunting! What a man already! I'm making a cake for his arrival tomorrow.

Thank you to Christian Redhli and brittney Painter, and Sarah Bledsoe for putting on today's garage sale for Cashy and the foundation! They raised almost 600 bucks!! Thanks so much for your hard work ladies!! We love you guys!! We couldn't do it without everyones support.
Well enough tears and doom and gloom for the night. I'm gonna cuddle my little love and fall asleep holding him tight. Goodnight all. Sweet dreams.

Wednesday, September 5, 2012

So I'm utterly pissed, I had a huge blog update wrote out and someone called me and it erased everything!!!! Ahhh. Dang it.
Cashy is about that same, he's only thrown up twice in 8 days. We're grateful for that. Still sleeping alot but he needs sleep.
I can't thank everyone enough for all their support during that last month of our third battle with this beast called a PNET brain tumor. Everyone has been so great and caring, that our heads are spinning!! Thank you everyone for your support, we couldn't do this without eveyones kinds gestures and love. We love you all.
September is childhood cancer awareness month, and this is now our third September since we entered the world of pediatric cancer. Nobody knows how devastating cancer can be until its someone you love or know going through it. I've posted the statistics many times, the death rates, cure rates, and the number of children effected daily by this horrific disease. I can't bare to do it again because it sucks, and as crappy as it is, there is no cure. You hear of moms "shaving their heads for cancer" for research, big reslly where does all this money raised for the "cure" go?? It's been 2 1/2 years for us and still there isn't even any new hopeful drug of a miracle that can be given. Why not???? Theres men on the moon, iPods, iPhones, navigation, all the technology in this world and yet no cure for effin cancer. It's unacceptable. The best there is, is poison in the vein, and high doses of radiation to their sickly little bodies. It's not fair. It's not right. Cashys "best hope" was stem cell transplants with high dose chemo. He had the best of the best and this still didn't work. Nobody knows how awful chemo is until they e sat with their child and held their had while their basically dying while receiving these bone marrow transplants during high dose chemo. It's basically the worst thing to ever witness let alone put your child through willingly. Radiation is worse, alot less of treatment time, yes but after effects are mind blowing.
Yes we're greatful for the 9 months after chemo that he had to be a boy a play, well after the months of recooperation. After radiation our little boy hasn't been the same. Yes he's still there but a part of him had been zapped out on that table along with that tumor. He has extreme control issues, you've all seen him in his monkey Jammie's, well thats because god forbid you take them off and get a bath and clean ones on once in awhile. Today I basically stripped him down threw him in the tub, he freaked about it but sometimes to have to just take control. Lol. Then he was mad because I threw the Jammie's in the washer. Well they can only be puked on and peed on so many times before you draw the line. I even bought him new ones on eBay, exact same ones.....don't try fooling him, he's no fool. Today he was so Mad about it that I wiped a booger from his nose and he insisted that I put the booger back in his nose, he's such a weirdo. Lol. I pretended and he was cool. Well he finially settled for the new red monkey Jammie's. Thank god. After a 45 minute screaming fest. Ugh. So now he's back to sleeping peacefully.
We had a good weekend, Friday mike, colty and I went to the michael franti concert with Domo, my brother joe and we met friends Casey, brooke and skye pearl. It was a blast, he did a shout out to 4 year old cashy hyde and even put on one of our bracelets! Mike and colty went hunting sat through Monday. Cashy, Catherine and I went to a BBQ with friends and family and Cashy actually was up playing in their playroom for over an hour! Very pleasing to see!
Yesterday I drove over with catherine to Bozeman Montana to see one of bestest friends on earth and her new little bundle of joy June. She's so dang cute, she's got a whole head of firey red hair! I love it! I can't wait till their both running around and giggling!! Lyndseys been such a great support through all of this with Cashy since day one. She' flew to SLC three times and even drove over with her sister in law lindsay when Cashy was in the PIcU after his third bone marrow transplant went bad. I still remember that day so clearly when they came and we decided that since Cashy had been semi stable for a couple days (even though he was on life support with bleeding lungs and septic shock) that it was ok to go get lunch and maybe do some shopping to get my mind off things for a bit, Not long because I hadn't left his side that whole week after the first two code blue/cardiac arrests earlier that week. So we venture out and decide to go to the mall, I think we had pizza and went to American eagle and then we decided o head back. On our way out to the car I called Cashys nurse in the icu and they said he was stable but a little aggitated but no worries she said they were going to give him something to tske the edge off, that worried me (this is now why he has a allergy to presedex) So we have to stop at nearest gas station to get gas in the blazer, I go inside to pre pay and I come out and lyndseys on my phone and she said it was the hospital and they wouldn't tell her what was Going on, I pick up phone and she said it was the Chaplin and I need to get to hospital ASAP becAuse Cashy was in cardiac arrest and they were doing CPR. I freaked, I don't think we even got gas, i took off after the girls wantex to drive, i said no, and I seriously have never drove so fast in my life as I did that day. They probBly have PTSD from that drive, lol, I was going about 100mph bobbing and weaving in between cars, I was a serious race car driver, I did really good! I kept trying to call mike and my dad because they said he wasn't there, mike wouldn't answer so I kept calling mY dAd, somehow he answered it but didn't know it because I could hear mike and him talking, I was screaming at the top of my lungs, and driving 100mph for them to hear me, finally my dad heard me and I said "cashs coding, get In there NOW!". They went running in I guess and could hear overhead "could the parents of Cashy Hyde come to IcU state," on top of "code blue, PICU, room 1).
So after what usually takes 30 minutes for that drive took us 10 with my NASCAR skills. I pulled up and ran in, lyndsey parked the car. By the time I had got in there everything was stable for now. Seriously I'll never forget that day, my mom and brad had just headed home hours earlier to.
Lyndseys mom passed away from liver cancer when colty was Just a baby. I think about what they all went through during that time and I wish I would of been a better support for her like she has been for me. Pam fought long and hard, and it was grueling for them all. I know Pam is looking down at Lyndsey, (and Mariah and zack too) and she couldn't be more proud of all of them. I'm sure she's right by your side lynds oggling over that sweet baby girl of yours right now. I know it.
Miked good friend casey had always been by our side throughout this battle as well, skye pearl (his 11 year old sassy pants daughter) and casey made numerous trips to SLC with us and to visit us. His mom also passed awAy from cancer (Breast) after giving birth to his youngest brother which she refused chemo because she was pregnant. now that's a true mothers love right there.
So thank you lyndsey and Casey for being such good friends during all of this. We love you guys.
Cancer affects us all, not just the one with the disease. It affects parents, grandparents, brothers, sisters, uncles and aunts, best friends and perfect strangers. Remember that children can't fight cancer alone. We need better options for these kiddos.
So we just Keep taking this battle day to day and thank god for all the good memories and times we've had with our Cashy. We will beat this, and if will be because of everyone who's came together to help!! Thank you all. One love.