Sunday, December 30, 2012

As the world turns, mine is standing still.

Cashy I miss you so much that times like these I feel like just throwing in the towel and driving home from work and not telling anyone I left. I would never do that to my coworkers or my patients but man, seeing all these new parents with their new little bundles of joy, it hurts my heart, it hurts seeing little boy babies with black fuzzy hair and their little monkey faces. It hurts so bad.
You have inspired so many people in your short four years on earth and I know you will continue to do so. You will continue to teach them so many wonderful lessons about life. You will make this world a better place. You already have and I know this is just the beginning of so many amazing things to come. I promise to help you with the big job you have ahead of you. We can do anything together.

I’ve tried as best I can to go about my life but everything is still standing still. I have so many unanswered questions. So many emotions that people just don't understand. I think some people are even afraid to say hi to me in fear of making me cry or just because they don't have the slightest idea what to say to a momma who lost her baby boy to cancer. But I'm strong like that in a weird way, I don't cry easy in front of people. I let it build up, I can usually feel it hanging in my shoulders, the raw pain.... It builds up and leaves me very tense. I cry the best in the cAr by myself. It's usually a song that sparks the tears, as like I said before everything reminds me of you.
We've been watching all our home videos lately, videos I can't even remember taking. How sad is that, that I can't even remember much of what life was like before cancer. Before you became so sick, tired, and weak. The last video I watched, I watched by myself which was a good thing because I just cry and cry and tears flow like a waterfall. The whole disc was the few weeks before you were diagnosed and the first three rounds of chemo. It starts with you and brother playing in the bathtub. Man you were so full of life and energy and you were so beautiful, your long brown hair and your to die for eyes. You were the most perfect baby. How could someone so perfect and flawless get cancer? How does a child, my child get cancer. Then I start questioning myself and blaming myself. Maybe it was because I only breastfeed you for 8 months instead of a whole year, Maybe it was the toxic formula I gave you, or all the hormones they put in cows milk? Maybe it was the food I fed you (could it of been from a hot dog, we don't eat those anymore, let alone any meat), the candy I let you eat once in awhile, maybe it was the wifi we have flowing through our house, maybe it was the TV, maybe I let you watch Mickey Mouse to many times. Maybe it was the car accident I was in when I was pregnant, maybe it was the drugs they gave me to stop my premature labor after the car accident. There's so many possibilities that it literally drives me insane. I wish I knew, so I could do everything in my power to prevent your brother and sister from getting cancer too. It really scares me and I am constantly worrying.

In your four years of life, you were never scared of anything. Never. You were so brave and strong. I remember last year when we were doing radiation. We would get up every morning (yes it was a fight to get dressed) and daddy and I would take turns being with you. We would wait downstairs in that horrible hospital, you would either be in my arms or in your stroller waiting for your turn so they could sedate you and radiate your brain and spine. God you were so brave, everyday we would walk in and they would hook up your line with the Nasty white medicine to make you sleep. You would instantly be passed out cold, every time it freaked me out, the doctors and nurses seemed so scattered, and unprepared. I was always afraid to leave you, then I had to walk out without you and it felt so awful knowing what you were going through. How they would strap you down on your body mold and then put the mask over your face after they intubated you then they would screw the mask down to the table. It was the most horrible feeling having to leave you with strangers and having to trust them, when they gave me no trust to feel. I kept your radiation mask, I often go in your room and hold it, it's a perfect mold of your beautiful face. It fits so well right in my arms, your little head. My bAby boy. I hold your mask and cry and I talk to you. I tell you how sad I am without you, how torturous it is living without you. I kiss the the perfect mold of your lips like your still there, I run my fingers down and over the indentation of your little nose and your eyes. It's you, it's your face. It's all I have left to remember how perfect your delicate face was.

I miss running my fingers over your scar on your head from the brain surgery. The scar had calcium deposits all along it so it was bumpy and I loved running my fingers over it. It was a grim reminder of what a strong little boy you were. What obstacles you over came. There were so many. The most amazing obstacle was you being able to see again after you were blind for almost two months after the brain surgery. You were so scared and totally blind. I was scared too. How could someone possibly have a quality of life if they are blind. I could never grasp it and miraculously you were given your sight back. Thank god for that.
I struggle with the fact that you are safe and happy. How can you be safe if your not with me? Isn't that what a mommy is supposed to do, keep you safe from harm, keep you warm and happy? I have literally no idea what your doing. You could be walking the streets of Timbuktu for all I know, and that worries me. Being without you is not being at all.

I have yet to have a good dream about you. The first couple weeks after you died I had dreams of you, but you were dead, and we all were frantically planning your funeral, over and over. Like every dream we were planning another funeral for you. A nightmare really. I won't be satisfied until you come to me in my dreams and show me that your ok, that your floating on a cloud and eating cheese sammys until your tummy hurts, or something. Do you even need to eat in heaven?

It's funny what becomes important when things like this happen. Tv shows, magazines, books...even the news is a joke. Who Effin cares if snookie had a baby or that Lindsey Lohan is in rehab again, who gives a rats ass. What about all the innocent babies like you that are gone and dead from childhood cancer. If everybody cared as much about pediatric cancer as they did about the next trashy episode of teen mom, well maybe you wouldn't be deAd. Maybe little kiwi, or your buddy Dawson, or juju could still be alive if people cared more about this terrible disease that is killing our children, our future. I swear if I see another gossip magazine with one of those kardashian girls on it, I'm going to throw them all in a pile and burn them in the store. Is that what the world has come to......ugh.
Well I better make some rounds and quit blabbering on. I hope everyone reading this has a good day today and will you all kiss your babies for me and hold them tight. Get down on the floor and play Legos, lt them make a mess with playdough. Cashy wouldn't want it any other way. I'd give my heart (well what's left of it) to be able to play cars one last time with Cashy. Remember tomorrow is never promised.
I love and miss you more and more everyday cashy. Please come to me in a dream. I need this. To infinity and beyond buddy, to infinity and beyond.

Saturday, December 29, 2012

Christmas is over and I can breath a little easier.

Well Christmas is finally over. I will admit that I'm glad it's over. I never in my life imagined that such a great family oriented holiday would cause so much heartAche and pain. I really don't think the pain will ever get easier. Maybe more tolerable but I don't think the pain and hurt will ever be any less. My heart has a huge empty hold in it where cashy belongs. I know technically he is in my heart but I want my tangible cashy, the boy who wouldn't let me get up to even go pee or make dinner, the boy who loved lounging on the couch and the boy who would bark orders at us around the clock.
Mike and I often joked about how we were his "bitch", and you know we were perfectly ok with it. I'd bend over backwards and balance bowling pins on my head if he wanted me to. I would do anything for that boy.
Putting up the Christmas tree for the first time since 2009 was really hard. Opening presents Christmas morning was even harder. Not heading cashys giggle or his cute little voice really hurts. I really had looked forward to being home with cashy for Christmas. I was so excited to have him here with us to hang ornaments, play the elf on the shelf game with him, have him open presents and just get to be a little boy that he really hadn't ever had much of a chance to be.
Sometimes I catch myself glancing over at the empty couch where cashy should be. Everything reminds me of cashy, I mean everything. Down to eating a string cheese from the gas station on our way home from fairmont hot springs on Christmas Day. Yes even a string cheese reminds me of him. Sometimes I start thinking of him and its almost like I can't breath. Like my pain is so raw and real that it literally sucks the life out of me. Sometimes I wish it would actually. I wish it would just take me away. Take me to cashy. If it was that easy! But I know cashy would want me to be here to take care of sissy and big bro. They need me and they need their daddy too.
Most of the time im doing good, and i feel strong and then Sometimes I'm struck by this blinding wave of sadness and sorrow. I start second guessing everything, did we do everything possible? Did we just let him die right in front of our very eyes and we were just to blind or optimistic to even see that he was dying. God, we had such optimism and positiveness that he was going to over come this and change the world. We wanted the world to know his story and in hopes of finding a better way to fight cancer besides your basic surgery, chemo and radiation treatments that are your only options. But now his story does live on, he will never be forgotten. I know this. But my heart wants him here, I wish I could just get a do over right now. But what would I change really???? Nothing...... He'd still die. It's like that song, ( which I hate the song because its totally absurd) "if I die young".....the line where it goes "it's funny when your gone, how people start listening..." Well world, can you hear us....cashys dead, what will it take? Thousands of more beautiful children dead until people start really putting in the work and the research? It's a joke.

Our next door neighbor died a week after cashy died of brain cancer as well. Although he was 80 years old, it freaks me out that maybe there's something toxic up on our hill. Then I start diagnosing my other children with brain tumors. I know it's insane. I guess once a momcologist, always a momcologist. Lol.

On our way to fairmont hotsprings on Christmas Day we were cruising along and out of the blue a giant bald eagle soars across the highway right in front of us. It was beautiful and very spiritual and we all knew it was Cashy saying hi and letting us know he was with us. It made our week.
Bedtime is still the worst. Each night when mike and I go to bed, we lay there holding each other and usually one of us will start crying. It's awful, knowing cashy should be right in between us like he always has since birth. It's the worst feeling knowing that he was here and now he's just gone, Just like that, gone. Sometimes I start crying and I just can't stop, it's like I opened the flood gates and it's a full on monsoon. Crap, I hate it.

So you all might think I'm crazy, well I basically am, a little statistic for you, 51% of moms and 40% of dads suffer acute distress syndrome the first two weeks after a cancer diagnosis of their child. Well after two and a half years later my stress level and emotional instability is far from acute, it's chronic.
I got off of work my first night back after cashys death, last Tuesday am, and I'm laying on my left side with the baby in my left arm and were face to face (and she's nursing) and I'm just about asleep, kinda in that In between sleep. Well all of a sudden something literally taps me in the middle of my forehead and goes "hey", I opens my eyes and it was cashys face all hazy and misty in front of sissy's face and it instantly went away. Now I'm serious it felt so real. I smiled and went to sleep, I knew it was cashy and it left me with a calm zen feeling.
Our very sweet neighbors bought colty a three day ski camp pass at snowbowl for Christmas. So wed, thur and fri colty has been tearing up the snow and learning a bunch of new tricks on his new skis. He loved it!! Thanks John and Dana, you guys are so kind!
Colty number three on his Xmas list was "a bag of whoopie cushions". Lol, I know what freaking cool kid. So I bought him a regular whoopie cushion and "the fartenator", this is a remote controlled farting device. He's been playing with the thing nonstop. He thinks it's hilarious to trick people when they come over. He tells them that they need to check their undies. Lol. He's a character.

I couldn't find the remote control for the tv anywhere the other night and I'm searching everywhere, under the couches in the toy bin.... Well I digging in the couch and I pull out one of Cashys bug juices. Mike instantly started bawling, thus I start bawling as well. God I miss him so much, I just wish I could get another minute with him. To hold him, kiss him and tell him I love him. I hope he knows how much we all love him and how sad we are he's gone. He will never be forgotten.

We are really excited about the foundation and what is in store for us next. We've already helped a couple family's this Christmas season with checks so they could give their children a better Christmas. We're so happy we are able to help other families that are in s similar situation like we were the last two years. We know how hard it is to fight cancer and everything adds up. So it's a good feeling to be able to help out, and it's all because of People like you guys who donate that 20 dollars or that 50 dollars, it' all adds up to help out these family's that so desperately need it.
Our next big plans with the foundation Is we are going to Phoenix Arizona the end of January and we are donating 20 reggae runners to the Holsteins hospitals in the area. My best friend janess's dealership she works for is donating the 20 runners and were really excited to get down there and do this!!
Well I better get back to work as mommas and their new babies need me!! (Well not really, they just need their pain pills and their water filled, lol).

Thank you everyone who sent us cards, gifts and love for Christmas. We love you all and can't emphasize how much we appreciate everything that you've all done. We truly couldn't do it without all you'd love an support. Love you all!!!
One love!

Oh and I'm leaving this post with a very special picture of cashy and mikes parents after he passed. This picture is amazing because you can see numerous orbs surrounding cashy. It's an amazingly spiritual picture and I hope nobody is offended by it but its such a special picture and shows how his spirit does live on and it shows how his energy is just radiating out of him. It's lovely. And it's comforting to me despite all the sadness in it.
Goodnight Cashy, I hope your safe and warm, and Most of all happy. I love you to the moon and back buddy.

Monday, December 3, 2012

I'm lost without you Cashy.

Well it's almost been three weeks since you've been gone Cashy. We all miss you so much, the pain is indescribable. I catch myself expecting to hear you yell for me down the hall or I double take looking at your spot on the couch where you should be. I miss your sweet voice, your soft touch, your sassy attitude and most of all I miss holding you in my arms at night. Our bed is so lonely at night without you, you've slept with us your whole life. Now it's just a big empty king size bed.
The other night we had both Colten and the baby sleep with us. It made it feel a little better and less spacious. Colty needed it. He misses his brother. He has woke up the last two nights and told me he's been dreaming of you. He said that in his dream you were here in the house but I couldn't see you only colty could see you, he said you ran down the hall and came up to me and gave me a huge kiss and disappeared, but I couldn't see or feel you only he could. In His dream last night he said you were here on your spot on the couch and yet again only he could see you. He said you were able to talk so clearly and well. This makes me happy that your coming to your brother in his dreams. He needs that, he's so sad and it breaks my heart even more. (Which is almost impossible because its already broken into pieces).
We made it home from SLC on Tuesday night around 11. It sure was another long week without you. I swear if I watch that slide show of your sweet face one more time you might have to commit me to a looney bin. I do ok most the time but the second I see pictures of you and videos I'm a complete wreck.
Your funeral in slc was nice. Lots of your family and friends attended. Even our neighbors Nathaniel's and liems parents came to it as they were in slc for the holiday. John and Corinne flew in from Cali ad CJ flew in from Texas.
The minute I walked up to your grave site for your burial I got an uneasy feeling and seeing how deep the grave was (it was nearly 12 feet or more deep) gave me chills and a vomity feeling came over my stomach and i felt dizzy. I held it together though. Thinking of you being down there in that cold dark grave forever really made things real. That your gone and I can no longer see your delicate face or hold your sweet hand anymore. There is room in your grave for two more coffins and 5 cremations. Ugh, the thought of more people dying and being put down there with you is unsettling. The ceremony at the grave site was beautiful though, which I'm sure you know because I know you were there holding our hands. We released a bunch of yellow, green and red balloons and as they took off in the sky a beautiful hawk soared near. We knew it was you with us that very moment, flying free. Like a free bird. Mike played that song as we sat on the couch the other night and I just broke down into tears. Its like I literally cant breath sometimes. God I miss you so much. The reception afterwards was lovely and grandma and everyone made some delicious food!

Sunday night we went up to primary children's hospital where you lived for over 10 months of your life while we battled what ultimately took your life. We donated 6 reggae and rockin runners in your name buddy. It really hit home when we were up on the 4th floor and you weren't with us. I started crying on our way out thinking, crap I'd give anything to have you up there fighting cancer, even if it was you getting chemo again. I'd live up there again forever if I could have you back. Even though I know it's not what you wanted, and what kind of life would that be? I know your better off where you are, but that selfish part of me wants you here still fighting the fight. I left the oncology floor in tears and my heart in a million pieces. It felt good to leave a part of you up there again. I know you had a giant smile on your face and that you were so happy that your sissy tested and approved each of the runners. It's her new job now!

Now we're home, trying to get back in a normal routine. But what is normal without you here?? Nothing, I literally feel like I'm stuck in a Torture chamber, looking at all your pictures, your toys, your dresser full of clothes. I folded the last of your dirty clothes that' were laundered, no more washing your Jammie's on quick wash. Now we just have 4 piles of clothes when I do laundry instead of 5. It's just pure agony. I want so badly you to be here with us forever.
I put your medicine box on top of the fridge. I can't bare to throw it out yet and either can daddy. I even yelled at it the other day. The oil and everything was supposed to make you better, make you well. We thought we were beating this, you seemed to be doing so well compared to how you were in July and August. Maybe we were just in denial. But I truly never felt like I would lose you. I always had that positive attitude and perseverance to keep going and I definitely thought you'd be here for Christmas this year. Our first Christmas home since you were 1 year old. I wanted you to be here and experience it.
I remember last Christmas while in California we took you to see Santa at the bass pro shop, we waited in line and you were so patient and also not feeling well as you had received radiation earlier that day. When we got up to take our turn you got up out of the stroller and ran up to Santa and hugged him. It was so cute. Now this year our Santa picture will be missing your beautiful smile and your little sissy will be there. Maybe we will skip the whole Santa thing this year, makes me nauseated to even think about it without you. I love you buddy. I hope your safe.


We were brought the most perfect Christmas tree on Saturday morning by a friend from work, (thanks Jen! ) it was so sweet of her and her daughter to do, as picking one out myself would of been a waterfall of tears. So we set the tree up that night with Coltys buddy Owen who came for a sleep over. ( colty needed that, he misses his buddy Owen). I tried to hide my tears as we put up the ornaments. I found the most perfect ornament for him , it's a sock monkey with angel wings, seemed so fitting.

Everything just reminds me of cashy. Everything I see or do. I think of him every second of the day. I seem to be able to hold it together when I'm around people and even when we talk about Cashy I always am able to keep it cool. But when I'm alone, especially at home or in the car, I cry and I'm constantly telling you that I love you, that I miss you so much, and that I'm sorry that you suffered so much." I pretty much repeat that over and over. I hope he hears me but I hope he isn't sad that we are all so sad.

I get tears when I see things that he loved so much. Playdough and cars at target (Icouldn't even go down the matchbox cars isle) bug juice at the gas station. I even went as far as I bought him a bug juice on our trip to slc. Weird and silly I know, but it would of been more painful if I ignored it and didn't buy it and validated that he's gone. Ugh. It's all so new and raw and nothing seems right without him.

We even got rid of the minivan, mike felt it was just way to hard to be in. We let mikes cousin Jesse take it to help him get on his feet, he's got a baby boy and he needs to be able to see him as much as he can. I know that's what Cashy would have wanted, us to keep helping others even though we've lost everything.

So I'm really excited and grateful mike has worked so hard on building cashys foundation. He's done a great job. This wAy everything cashy went through will not be in vain and we can keep spreading pediatric cancer awareness as well as spreading our knowledge on cannabis as a valid form of treatment. Even though it didn't work for Cashy doesn't mean it doesn't work, we just need valid testing and research done so they can know exactly how much of a dose is needed and how often and ultimately different routes of delivery such as IV. The time will come and I truly believe because of cashy it will come sooner than later!

Thursday, November 22, 2012

Happy Thanksgiving Cashy.

Today I struggle with what is there really to be thankful for? Today is our first holiday without you my sweet angel. It's hard to really even comprehend that your gone. I'm sure it will hit really hard when we go home and everything has to go back to normal. But what is normal without your? I don't have that answer. Your were are normal. We lived to care for you, we would of done anything for you, I still would. I hope you are here watching over us and listening to us all talk about how sweet yet sassy you were.
Tonight I sat alone and listened to some of your videos that are on my phone, just so I could hear your sweet voice. Oh how I miss it so much. Sometimes I feel like I can hear you yelling for me. Then I remember your sweet body is gone. No more meds, no more forced bathes, no more juicing, no more vitamixing, no more tube feedings, no more diaper changes, no more washing your monkey Jammie's in a rush, no more cuddling on the couch holding your hand, no more trips to Walmart in the van with you dancing in the back, no more buying cars or little boy pj's and little boy toys. What are we to do? Everything just seems so wrong without you. I'm so sorry we couldn't save you.
I miss you so much that there will forever be a hole in my heart for you. Until we meet again little monkey man, be safe and I love you. Please come to me in my dreams, I need to see your sweet face.

Wednesday, November 21, 2012

RIP Cashy Michael Hyde 6/21/08-11/14/12

Well I've pondered what I would write on this blog now for a week. So many emotions, so many lovely people; friends, family, fans. We're now traveling to Salt Lake City, in a convoy of 5 vehicles the lead car which is carrying our little angel baby Cashy. Upon arrival we will be dropping him off at Starks funeral home, then on friday evening there will be another viewing and saturday a service and his burial. What a long hard week. My friend put into good words as sayings its like the movie groundhogs day except the worst day of your life.
Well last Sunday night we were growing more concerned with how much longer we had with our beautiful boy. He was becoming more stuffier and the antibiotics didn't seem to help. I want to emphasize that he was never was in pain, he was always comfortable. Four of the nights the week before Cashy was insisting on sleeping with his brother bed downstairs on the bottom bunk. They cuddled together most the night till 3am usually and then colty would come up and tell us cashy was ready to come back up to mom and dads bed. It was very precious and I'm glad colty has that as a memory with his brother.
Monday I worked a day shift for a gal who needed needed Monday off so she would work for me Thursday night. Mike said he just slept most the day, he did our usual ritual get him up and give him a bath, get him dressed, wash his monkey Jammie's on quick wash (only takes 15 min, thank you LG) while he screams at the washer for it to finish so he can have them back. But then we would have to dry them but he was usually ok with that as he didn't want to wear wet monkey Jammie's. He was such a character. So serious and adamant about certain things. It was always his way or no way, and you know we were ok with that, so was brother and even baby sissy.
Tuesday we packed up the minivan and all the kids and drove to Darby where we stayed at our friends John and Corinne's guest cabin. What a beautiful place. Cashy planted on the couch and we all hung out and chatted for a little while, colty and dad went on a four wheeler ride. We had talked about going up to lost trail hot springs, unfortunately they were closed but they said if we wanted to come still they would open it up for us. Cashy was always up for hot tubbing so after being there for a bit Cashy kept asking to go "swimming" so we all loaded up and drove to the hot springs and we soaked it up for a half hour our so, Cashy included, after 15 min or so he was ready to get out so I took him and we got dressed. We drove back to the cabin and I got the boys ready for bed and they snuggled together upstairs while mike and I talked with John and Corinne for a bit while I fed sissy. I stayed with kids, cashy and Catherine and I all went down stairs to the king size bed and we all snuggled up and cashy and I were singing songs, he sang the Barney I love you song, it was so cute, we giggled and laughed and went to sleep while I held his hand like he loved. His last night alive was not even in our home bed, in a beautiful cabin in Darby, MT.
We packed up and left in the morning, picked up a take out order of breakfast in lolo and headed home. We ate and then Gave cashy a bath with daddy, then he insisted brother get in with him as well. We forced him to brush his teeth, as it was always a battle with him. He was a strong little monkey, he could fight off that toothbrush like a ninja. Cashy then slept most of the day with waking up to eat Cheerios (which he hasn't ate anything in weeks) mike and Cashy laid on the couch and watch movies, mike tried to turn off the tv so they could just cuddle but he kept saying "movie, daddy". He wanted to listen to the movie and just snuggle. He even wanted to watch Sons of Anarchy, one of his favorite shows,( lol yes I know not the best kid show, but hey he was an old soul, he liked that stuff)! Around 2oclock he started breathing a little labored, mike gave him some extra oil and he dozed off peacefully and the labored breathing went away. Around 7pm the breathing started again and now it was a gasping type breath. Scared me so so much and ill never forget the sound, cashy started acting anxious. We were so unprepared for this to happen we hadn't needed any kind of pain medication throughout this whole process, well I panicked and though oh my god he needs morphine to help him pass away. I frantically called the oncall pediatrician which since I work in the hospital I got the number myself and called her, she refused to order cashy any morphine and she couldn't get ahold of his pediatrician, she told me I needed to take him to the ER. Which we obviously were trying to avoid. No more pokes remember. I was so appalled by how we were treated with trying to get some medication for him. I got dr Randall's house phone number from the gals at work and called him three times at home, after the third call his angry wife answered the phone "is this the hospital" I'm like no/kinda... I told her the situation and she goes well I guess I'll wake him up and have him call you, this was 9pm, not exactly that late. We gave him more oil and Mike and i took turns holding cashy, his last coherent thing he did was puckered up his little dry lips and Gave me the sweetest kiss ever. I'll forever remember that. Well he never called and Cashy quit doing the labored breathing again I passed him to mikes mom Julie so I could breast feed the baby because she was screaming. Well he started kicking his legs and you could tell he wanted Mike or I so mike came back and cuddled him on the couch. Well minutes later, I was standing in front of them and mike goes he's gone babe, I looked for a pulse amidst the tears and I didn't even need to know I could tell he was gone. So still, yet unbelievably peaceful. 9:55pm. Mike said he literally felt Cashy enter his heart, it started rapidly beating and a strong burst of energy and he was gone. Cashy was surrounded by over 20 friends and family while he took his last breath on earth in his daddy's arms. A selfish part of me was jealous that I wasn't the one holding him during his departure from earth but I'm really glad mike has that to cherish forever. Cashy has taught me alot of things throughout this journey and one of them is to be a better person and for that I am happy mike has that special moment. I brought him into this world (which let me tell you he made quite the entrance, from a cAr accident shile i was pregnant, a hearts are decels to having the cord wrapped around his neck twice and around his shoulder, and an abruption on the placenta, he never even required oxygen though, he's that big of a stud, lol) and mike held him on his way out, and that I am grateful for.
After he passed and we all caught our breath I gave him his last bath, we undressed his lifeless skinny, pale body and I held him up like a newborn in the tub and bathed him, washed his hair, and wiped his boogers (he would always say put it back mommy, so I would pretend to put back his booger) mike goes, put it back mommy. We all laughed with tears in our eyes.
Well 40 minutes after he had passed away 5 policemen show up at the door to "investigate" the unattended death,. So I'm going to say this, we had never needed hospice care, he was always comfortable, we didn't anticipate his death to happen this week, and I had honestly never thought about his passing away, I guess maybe we were in denial, or we were just always so positive and thought that he was going to beat this tumor. So they barged in, the city cops and county sheriff and the county coroner was there. They insisted we show them some proof of him having cancer so we pulled out his giant chart we had of hospital records and such (remember this is after he just died, I had just bathed his little body and we were still in utter shock) they took photos of his records and then we argued with them as the tried to tell us that they were taking his body, after he only had been dead a hour!! My mom started getting heated with them as they also argued with her and told her that he wasn't telling her how to do her job. They made me take his little body back to our room and I laid him on our bed. They undressed him and took pictures of his shell of a body. I bawled my eyes out in confusion, anger and how demeaning and uncaring this was to do to my 4 year old son who battled such a courageous battle for his life. They questioned me what his scars were on his face like I had done it to him or something. I explained in defense. Well after coming to a agreement after nearly an hour and half of them in and out of the front door, they went to their patrol cars and sat in them just a few houses down from ours. By the time they left his was stiff and hard, and rigor had set in. At 2 o'clock one of the officers or the sheriff I can't remember, called and said that he was reading through his rules and regulations and that "Cashy's body was their property" and that they could take him now if we didn't pick a funeral home and they would take him to the county coroners office (serious!!!), we decided garden city funeral home because they have a excellent rep in Missoula. So the sheriff came back and called the funeral home and over the phone we agreed they would come and pick up his body at 6am. Thank god, 4 more hours with my boy to hold him and lay with him in our bed for the last time. Mike and I snuggled and cried and held his hand we didn't even sleep. From 4oclock to 545 I sat on our bed with him in my lap and just talked to him and cried my eyes out. I told him how sorry I was that we couldn't save him, that he was so courageous and strong throughout all of this, I told him he was my true hero and how much i love his little spicy monkey attitude. At 645 the funeral director came and mike loaded his body on a stretcher and kissed him goodbye.
What a strange and awful feeling it was to not have to get up and give cashy his daily meds, his daily juicing, make a vitamix, fight giving it all to him because he hated all of it. The first day was a blurr of tears, extreme tiredness, but yet a sense of peace encompassed me knowing that he was free and no longer suffering. I can say from that instant now on I no longer fear death. I know now that Cashy will be there to greet me and all my fears of death and dying all flew away.
The last week has literally been a blurr of emotions, busy work, and planning the thing I had feared and dreaded most, a funeral for our sweet boy. Looking through thousands of pictures and videos just filled my heart knowing that he had a great life, we gave him everything we could, we tried so hard to save his life but god wanted him back. He was to precious and innocent for this earth. But it doesn't leave me without wondering, who is holding his hand, who is rubbing his back, who is there holding him now. I don't think anyone can care or love him more than mike and I. So many questions, so much heartache. My friend Michele put it right when she texted me today, that I probably have a sense of relief that its over and he is no longer suffering but also guilt because I do have that sense of relief. Then comes the tears again, and your so blind from tears and hurt in your heart alls you can do is smile and hope that cashy is with you helping you along. If it wasn't for all my friends and family this past week, I'd probably Be confined to bed and comfy pjs everyday. I was able to go workout yesterday amidst the tiredness and fog. That was nice. It's so strange not being tied down to the house like we were. There always had to be someone home with cashy. Now it's just us 4, not us 5 like it should be.
Cashys celebration of life was Monday, there were about 300 people who attended. It was an amazing beautiful service. We were blown away with the support our community showed our family. We are truly blessed with such great friends and family and people who cared for our amazing little boy of steel. Thank you everyone who attended and helped out. We appreciate everything everyone has done, the flowers, the meals, the cards, helping with the ceremony, the Cashy's cranes, the slideshow, the ceremony handouts, and so much More and most of all, the prayers. We couldn't of done any of this without all your help and support.
Yesterday was definitely a down day, quit around the house. We wrapped everything up in Missoula and then prepared for the next ceremony this weekend. I said goodbye to my best friend who was up here the day after he died from Phoenix, thanks Janess for all your help, I love you so much. My other best friends lyndsey and jacque were here sat and helped us dress him and prepare his coffin on Saturday. We dressed him ourselves in his little tuxedo and big boy underwear (even though he wasn't potty trained, if it wasn't for cancer he would be). I keep telling mike he's probably pissed off as all hell wearing a tuxedo, he wants those monkey Jammie's. lol. But then mike reminds me when he was healthy he loved getting up every morning and getting all dressed up and ready to go.
So now were still driving to SLC about 2 1/2 hours to go. This has been a amazing beautiful drive even though its our first slc trip without him in the back doing his fist pump to the music. I miss him so incredibly much, it's impossible to even explain it in words, is how ill put it. Our bed is big and empty. Lonely.
I'm so glad I took so many pictures, there's so many memories. We will have those forever. Tonight hold your babies close and kiss them for us. Ill update again after his next ceremony. Thanks again everyone, we are truly blessed to have you all. Sleep safely Cashy, I love you so much. I hope your happy and running free. One love!

Sorry if your offended by the picture of him in his coffin but we want people to know what childhood cancer looks like, and this is reality and seven babies die everyday.

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 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!