CASHY HYDE - Blog
Cash Michael Hyde was born to Kalli & Mike Hyde on June-21-2008. His big brother is Colten Hyde and our family lives in Missoula, MT. On May 3rd 2010 when Cash was 20 months old he was diagnosed with a 4.5 cm stage 4 brain tumor. Cash battled for his life at Primary Children’s Hospital in SLC, UT. From May until the end of December and went home in remission on January-29-2011. Unfortunately on October-12-2011 the Hyde’s were told that Cash’s brain tumor was back and that he must immediately start radiation treatment at the Huntsman Cancer Institute. With radiation treatment Cash has a 30% chance of 5 year survival and risk of Leukemia Cancer, Blindness and severe Brain damage. Cashy and his family are currently staying in California to battle cancer with the best medicine and technology.
I HAVE MADE THIS BLOG TO KEEP TRACK OF CASHY'S BATTLE.
WEDNESDAY, NOVEMBER 7, 2012
Charging along, one day at a time.
It's been a couple weeks since I've updated this blog, man time sure does get away from me. We're constantly going going going.
Cashy has been doing really well these last couple weeks. He's adjusting we'll to the oil again, he's been wanting to leave the house quit often, "go with daddy," he says. He's all about getting in the van or dads truck and going for a ride. He started this new obsession with wanting to go to the gas station for a "bug juice" (they are these awful sugary drinks for kids in a little bottle with a lid that can close and open), im not sure where this came about but thank god he doesn't even drink them at all (talk about growing cancer) he just insists on going and getting one, but he doesn't even Take a sip of them. So now we have bug juice bottles all over the house. Yuck. But anything for our cashy! He's spoiled rotten.
The other day he insisted that mike take him to Walmart, he picked out a CArs racetrack toy that cost like 40 bucks and he only played with it for a few minutes. I swear! You can't say no to that child, or it's a complete shit show! Ohwell, I'd buy him the whole damn toys R us store if I could!
Well last week I kept asking him what he wanted to be for Halloween and he would yell and me and say, No! So I didn't push the issue, if he wanted a costume I'd get him one. Well last minute on Halloween he decided he wanted a costume and NOW, and he wanted to be BUzz lightyear and he wanted to get Candy!! So mike dropped me and sissy off at Coltys school Halloween parade and he took him to the Halloween store and all that was left was a 12-18 month buzz lightyear. He's so tiny that it actually fit him, it was a little high watered on the legs though. So he dressed up that evening and we took him and sissy to 4 houses until he said he wanted to go home, he got out and walked up to each house and said trick of treat, and got his candy. He was so dang cute!! Sissy too! Brother colty took off with the neighbors and tore up the neighborhood.
Halloween is my birthday (the big 3-0 this year, ahhh, I don't want to say that to loud) so after the trick or treating, mike and I and a bunch of our friends went out on the town. We will just say we all had a little to much fun that night, and we weren't feeling so hot the next day! ;). I had to work that next night too! It was a long night!
Cashy is still stuffy but now he's got the green bloody tinged boogers, and it's been a month since the stuffyness started. His pediatrician seems to think its his tumor growing, but I know it's a sinus infection, so we are trying out some antibiotics with the hopes that it will clear things up and not hurt his stomach to bad now that we have his stomach back on track. It seems like once you get one thing under control something else backfires and reverses everything you've done. He started rubbing his cheek last week where his sinus's hurt and hd rubbed it raw and now ix continuing to pick sf his face, non stop, so he has three little scabs on his cheek that won't heal because hE keeps picking the scabs off. I'm ready to put socks over his hands and tape them! if his sinus's don't clear up, then dr Randall will put in a referral for a visit with an ENT (ear nose and throat doctor) for "comfort measures" Consult. I don't like those words, they make me think of death and dying. He's comfortable right now, so that's not a problem, he's just stuffy. We're staying as positive as we can. Nothing can bring our spirits down, even though sometimes I just wanna break down and cry and say why cashy, why Cant colty just have a little brother that wants to play and run around, what About Catherine, will she get to grow old with her big brother? It's not fair, and frankly it's heart breaking to think about even. But how much more can your heart break when it's already broken into a million pieces? I try not to do that pitty party stuff to much though because negative thinking doesn't get anyone anywhere. It's easy to get side tracked and think of the doom and gloom, but you just can't do that when your fighting cancer. You can't. You have to keep your head up, a smile on your face, and tAke each day like its a blessing from god. Which it really is.
Sometimes I wonder why there is so much pain in this world? Why do kids have to suffer like this? The average family doesn't even know what this kind of pain even feels like, not even the slightest, and I hope none of you ever do.
Cashy is so funny with how he lets us do his daily routine/cares. He delegates things to everyone on his own terms, no set way or person. If mike or I go to give him his meds, well he wants the other person to do it. Same with diaper changes and tube feedings. He will say brother do it, sissy do it, and yes even the dog irey do it. The other day I had to have irey help us change his poopy diaper. It was very interesting but we got it done! Lol. The other night cashy was insisting that Mike bring him a glass of water, but he had to hand it to me first then I had to hand it to him. He's so goofy I swear. Thank god we have each other to help out, because it gets exhausting! All the demanding, it's tiring on a person!
The last three nights cashy has insisted on going to sleep in brothers bunk bed with him. It's so cute! They're all cuddled up together. He stays in there until about 3 am then he's ready to come back to "moms and dads bed".
He still fights us really hard on the tube feedings, but he's getting a little more tolerable with it. Oh and another great thing.....no vomiting In about a month!!!! Well except for one time when his tube feeding got pushed in way to fast, he threw it up, but no morning vomiting which is always a sign of the tumor. His eyes are still looking good too. Once this sinus infection clears up I'm positive he will start being on the move again. He' is up and walking around more often than he was so that's Always a good sign too.
Mike and colty have been out hunting hear an there, mikes been dealing with his truck, I swear it's one thing after another with that thing. My bestie Janess came up from Phoenix for my birthday weekend and my mom threw me a dirty thirty birthday party up at a cabin on seely lake there was 9 of us ladies and we had a friggin blast, such a blast that we were all asleep by 1 am. Lol. Baby Catherine joined us and got held and passed around all night. It was a good time, thanks mom for throwing me a blast of a party, even though I'm an old lady now and thank you janessy for flying all the way to celebrate! We even got a cashy inspired best friends tattoo!
I started doing Bikram hot yoga this weekend! If you don't know what it is, if is a 90 minute yoga class in a 105 degree temperature room, it's effin hard, but it was so relaxing (after I got past the part of nearly passing out from heat exhaustion, lol) such a god workout though!! I am still sore from the few times that I've gone, gonna go again when I get up today!! I love it!' It's so relaxing and really puts your mind at ease for those 90 minutes and you walk out a fresh yet sweaty person ready to take on the day!
So This is our third holiday season fighting cancer! Three years now about! We're excited to actually have Christmas at home this year! No smelly hospital or tiny Ronald McDonald house room, our own house!!! How exciting! I'm totally going to play the elf on the shelf game with the kids this year! Last year it wouldn't of been very easy to hide the elf in our little Ronald McDonald house room. So this year it's on! The kids will love it! Ill need some ideas ladies on where and what to do with this elf! I still need to pick one up! Lol.
Well I've probably missed some things but I'm working in the NICU watching a whole slew of monitors In case the babies do something naughty with their vital signs. Not a fun job to do for 12 hours, ugh. So boring and the beeping is driving me crazy. Its actually like a bad flashback of the PICU days with Cashy. Sitting watching the monitor and hesitating and having your heart sink at every beep you hear. God I hated those days!
Well everyone hAve a nice Wednesday!! Soon I will be sleeping! Thanks for all your continued support and prayers everyone, we couldn't do it without you guys!! One love!
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!
WEDNESDAY, OCTOBER 10, 2012
Live life to its fullest everyday! No regrets!
To start off I want to clarify a few things from my last blog post. As most of you read I had commented on a dear friend who had posted about her troubles with her 3 year old son. I want everyone to know I wasn't trying to hurt Her by what I said, I was only just trying to get my point across that I would give anything for Cashy to be a feisty wild rambunctious 4 year old and that I am envious of her healthy boy, and that what one person wants is another persons nightmare. I apologized many times and am truly sorry for hurting her feelings. I didn't know the depth of the situation and spoke ahead of myself. So anyone who wrote Nasty messages to my friend, I'd really appreciate if you apologize for your rude and hateful words. It not only hurt my dear friend it hurt me that people who say they care for our family and son could be so hurtful towards a perfect stranger. That wasn't what I was going for and I'm ashamed about what happened and how it all went in the total opposite direction I was aiming for.
On a better note, we have taken a small break on giving Cashy the cannabis oil for 6 days to reactivate and clear out Cashys endocannabinoid receptors (everyone has a endocannabinoid system in their body, it is perhaps the most important physiologic system involved in establishing and maintaining human health. Endocannabinoids and their receptors are found throughout the body: in the brain, organs, connective tissue, glands and immune cells. In each tissue the cannabinoid system performs different tasks but the goal is always the same; homeostasis, the maintenance of a stable internal environment despite fluctuations in external environments., google it for more information, it's fascinating really.). So after being on the oil heavily for over two months, we are giving his system a break so these endocannabinoid receptors can continue to do their job accurately, they need to be reactivated if you get what I'm saying. So today was the third day of being off the oil. Now remember you can not withdrawl from cannabis as it is oil based and stays in your system for up to 30 days, so even though we took him off cold turkey he still has cannabis in his system slowly wearing off but not letting his system go haywire from cutting it out completely. Another reason it is such a great pain reliever, vs heavy narcotics. Not to mention all the other benefits it hold, it's a neuroprotectant, antioxidant, antibacterial and it says in the government patent on cannabis that it can prevent organ failure during septic shock (exactly what cash went through fall of 2010, while on life support). So not only are we fighting his cancer with this miracle drug, we are protecting him from all sorts of other conditions that could arise from the treatments we put him through the past two and half years.
So back to what I was saying. We are on his third day off the oil and are really excited to say that Cashy had a awesome day today. Although he is still tired, and a little crabby, he is still all there and was up being more active, talkative, and alive than he has been in the last two months. Last night he insisted on sleeping in his car bed, which he's never ever slept in it, he only stayed in it a little bit as he wanted me to sleep in it with him, well after a half hour of being crammed in a small toddler bed I convinced him to come back to our bed (the family bed, thank god its a king size, lol).
This morning around 630 am Cashy was laying in bed with us and I was listening to him sing and hum half awake. It was so dang cute, he's was just laying there humming and singing away. The sweetest sound. Sissy slept in her crib from 11-730 last night! Amazing, besides my boobs were going to explode and cash was up almost every hour being restless and wanting water. So even though baby girl slept all night, cash still kept us up all night. Oh well! Like I said before, I function quite well on minimal hours of sleep!
while I went and worked out this am, and sissy went to the Y daycare, mike took Cashy to Colten's 2nd grade class and said hi to colty and all his classmates. I wish I could of been there, I bet colty felt like a very proud big brother! Then they went and ran errands and got coffee. A couple hours later they ran to Walmart for some stuff only after Cashy was up and outside riding his bike for a few minutes!! Hey a few minutes is awesome after seeing him lying in bed for two months straight! He's been such a cuddle bug lately, he insists one of us hold his hand while we sleep, and he will snuggle up on me and say "my momma," it melts my heart. I tell him I love him almost every hour, lol, he says back "wuv you". So Needless to say we are some very happy parents to see our boy up and moving even if it is for only a few minutes! I'll take it! Sometimes (more than not) Cashy is so controlling on who does what, (i would think this is frlm having little control these past two years, that now at home he gets to control what goes on) that often he has sissy or brother give him his meds, well monday he needed his diaper changed and he refused, absolutely refused to let me change his diaper, he insisted that the dog Irey change his diaper, oh man was that interesting. I let the dog up on the bed (which I hate dogs on my bed) and I took her paws and she assisted me in changing his diaper, I swear if there was a camera in the room, it would have been quite the shit show! Lol. Oh man the things we do for Cashy! Hilarious really! Cashy had a big boy haircut yesterday by miss Ashly, he was pretty cooperative, a little wiggly but we got it done! Thanks ash! He looks so handsome!
Grandma Vickie took colty to pick out a Halloween costume today, he picked a creepy jester looking costume. Scary looking if you ask me! We still need to get Cashy and Sissy one too.
So back at work it is for me. Three twelve hour shifts a week, ugh. It's exhausting. I called in sick on Saturday after I wasn't going to because everything seemed altight, then Around 6 he was acting miserable and screaming and crying for me so I called off, not only ten minutes later I had a call from my boss (which she's not even at work on a Saturday) saying that I have to come in to work and 6 was to late to call in. When I called I said that Cashy wasn't doing good and I needed to be home. So when my boss called I was a little blown away that she was like You MUST come in and there is nobody to replace you. She even said, "can't your mom or mile watch him". Which yes mike was home but that wasn't the problem, I felt guilty leaving him when he felt so icky and was screaming for me to hold him. So I ended up going in to work, after crying the whole way there. Some people Just don't understand Just how hard it is to leave your baby boy when he's so sick and wanting you to hold him. Guess you don't know till your in a similar situation.
It's so crazy and overwhelming to look at "before" pictures of our family, well especially Cashy. To see how we were before cancer wrecked havoc on our lives. The picture below of Cashy was taken only a few weeks before we had found out Cashy had cancer. He was so whole, full of thick beautiful dark hair, and life and not a care in the world. It's easy to say I'd love to go back to this time, where we hardly knew of the world out there known as pediatric cancer, but we wouldn't be the family or people we are today if we didn't experience this journey we are on. We would of just continued living in a world oblivious to the pain and sorrow that these children and families face everyday when living with the beast called cancer. I'd like to think I'm a better person now, having experienced what we've experienced as young parents has given us a whole new meaning to life and love and as easy as it would be to say I wish we never did have to know what this side of life is like, I'm glad we've been given the eye opener to cherish life and to love with such compassion and heart that now I know how precious life is, and what a gift every breath we take is.
With that said, everyone hold your babies tight and if you don't have babies yet, hug your mom or your dad or your grandparents or your brothers or sisters, because you never know what will happen tomorrow.
THURSDAY, OCTOBER 4, 2012
Every day is beautiful!
Well it's now been over two months since we found out Cashys cancer has returned and 3 months since he started showing symptoms again. Each and every day with our buddy is a challenge but a beautiful blessing at that.
Not much has changed in the last week since the last update although we have changed some things in his daily routine and his eyes are looking better than they were when he was on the DCA.
Since removing cash from the DCA he has shown a slight improvement, he's been awake more for longer times and his rapid eye movements have lessened. His vomiting is still present but less often and we haven't fully figured out when it's gonna happen, it's totally random, but mostly in an when he first wakes, (which is one symptom of a brain tumor, morning vomiting). He threw up this am, but once again I was able to pull out a playdough bucket that was near and catch it all, lol (our poor bed, I swear I'm changing sheets every other day, sometimes twice in twenty four hours). Cash has been giving mike and I an extremely hard time when it comes to hooking up his feeding tube and pump at night on continuous feeds. He fights it so hard and if literally takes us grown adults to hold him down to hook it up, then it's the battle of keeping it in because he's smart and knows how to unlock it and unhook it. Last night he was pulling on his gtube so hard that it was almost pulled out of his tummy completely. And if anyone knows how gtubes work there is a balloon that is blown up after being inserted thy holds it in place, he almost had the whole thing out. We literally had to hold him down and put a small T-shirt over his belly and tape it around so it covered it so he couldn't pull it, that lasted only ten minutes and it was off, finally he gave up and went to sleep. Ugh. That fiasco took nearly an hour but he stayed hooked all night.
We purchased a vitamix blender, (that thing is effin awesome!) so now during the day we blend up every meal that we cook and I add a bunch of high calorie high fat items, to it and then we Just squirt 60cc of the mix in him at once, about every hour he'd gets full syringe along with his fresh veggie juice. This am I'm mixed up scrambled eggs, toast, hemp protein powder, hemp oil, flax oil, yougurt and almond milk, mixed it up and pumped him full of it! You could literally grind up a whole steak in that thing if you wanted, we don't eat meat, but you could basically grind anything up you want. It's so easy and since he's not eating a single morsel it's the best way to get wholesome food in him, then at night he gets the tube feedings on continuous. He's maintaining his weight, he hasn't lost any, even though he looks like a little skeleton.
This morning about 4 am when the boys got up to go hunting (yes hunting again), Cashy woke up and was in the best mood, laughing and giggling. I love to hear his laugh, it vibrates through my whole body and Just resonates good vibes! I love it. His laughter is becoming less and less so when we hear it, it's just amazing and makes you feel so good.
Lately he loves for me to lay with him and hold his hand. I love this, his little hand in mine, it feels so right. I wish I never had to let it go.
I know everyone struggles day to say with their own lives, children, bills, work, school, etc. I know how the simplest of things can seem important, and sometimes you overlook the important things by worrying about the little things. Well when you have a child sick with a debilitating disease like cancer, you tend to push away those little things and only worry about the major things. With that said, Ive been struggling with a friends post on Facebook last week. I Wong name names but if you read this youll know who you are, and know that I love you girl......but she posted this long post about how her 3 1/2 year old is having major issues with obeying and listening and that he is Totally out of control and won't listen to her for nothing if she sends him to his room he's jumping off dressers into his bed, etc. She also said that she went and saw her doctor so she could get medication so she can tolerate even being around her son?!!??.....seriously Hun, do you know what I would GIVE to have Cashy acting like a little asshole and running around jumping off dressers and yelling and screaming!! To need medication to numb your reality of your happy luff and your healthy kid, well it's appalling. And I'm hurt that you would even go to that extent, to medicate with prescriptions. There's much better ways to cope! Believe me! Sorry if this offends you hun, but it's been bothering me. Some advice for you as well, look into what your feeding him, sometimes certain foods can cause kids to act out, there's dyes in processed foods that can literally alter behaviors. Start looking there. But get off the meds. Enjoy your rowdy wild boy, you never know what could happen tomorrow or the next. Tomorrow is never promised for anyone. when Colten was three he was the same way, we actually got banned from ever playing with a good friends little daughter who was 9 months older than colty because he was to wild. It's just a 3 year old boy thing, trust me.
Mike and I were able to attend the pearl jam concert on Sunday! We didn't have tickets and either did our friends so we decided to try and find a scalper, by the grace of god we did but all four seats were in diffrent sections, lol...we all managed to squeeze into a spot! It was so much fun and was nice to get away for a few hours and Just jam to some music! Thanks Brooke and Casey for coming with us!
So we're just still going day to day, hoping and praying for our miracle again. I do know one thing, if it wasn't for the oil Cashy is on, he wouldnt be here, he wouldn't be comfortable like he is, and most likely he'd Be on a morphine drip trying to control his pain, but he's not! He's comfortable, happy for the most part and is still enjoying going to Walmart for a quick grab of some playdough, markers or cars. Lately it's a big cars movie kick again. He actually sat up and watched the whole movie cars yesterday. Usually it hurts his eyes to watch tv very long but he did it! I'm pretty sure were on the right track to killing this tumor. Three months since this tumor has returned, basically it should be huge by now, and I know it isn't! we're gonna fix you Cashy! Just keep being that super Cashy that we know and soon it will all be a bad nightmare! Brain tumors are complicated and breaking that blood brain Barrier is hard to do, so with that said we can't expect this tumor to be gone over night, it's a process and mild and I are pretty much on our own protocol for this one. We're changing the world guys! We are! Just you all wait and see, soon no child will have to suffer this way again!
Thanks for the pizza last night Tammy! Your such a sweet lady! Thanks again! And thank you everyone for the continued love and support! We love you all!
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.