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.