Friday, March 1, 2013

Cancer, I hope you get cancer and die!

Cashy, Cashy, Cashy. Oh, how you are changing the world, even if it's just through one person at a time. I don't think a single person who sees your sweet smiling face or hears your contagious laugh could ever continue on without hearing your story of how brave, strong and how long and hard you fought. You fought harder in your 4 years of life than anyone I've ever known, and probably ever will.

More and more people are discovering your amazing story everyday and hopefully people are sharing and spreading it as well, like a wildfire rolling in the wind, snatching everything in its path, spreading Cashy’s childhood cancer awareness. That's what we need, awareness for this awful, murderous disease that is taking over our babies and loved ones.

Sometime I get so angry thinking about how little knowledge people know of childhood cancers. Why? This is one of the leading killers of our children. Cancer. Before you were diagnosed I never even knew about childhood cancer, sure I knew it existed, but I didn't care to learn more about it. Maybe I was in denial that I would never be faced with something so deadly and destructive, let alone my perfect little baby boy like you.

How can something so common in today's world have no reliable treatment plan. And I’m saying reliable, like life saving. Chemo and radiation are not a cure. It's like us parents are just throwing our children in torture chambers and letting the doctors and nurses have their way with them. Let’s pump these sick kids full of adult chemotherapy drugs in pediatric doses, and radiate their whole bodies until their vomiting, till their hair falls out, till their immune system can no longer take it. Skin peeling from every part of their body from the toxic chemo that requires a bath every 8 hours to wash the chemo from their skin after it soaks through their pores causing severe burns. Then they either get an infection from the low white counts, or they finish the round and then recuperate to do it all over again. And this is the best we have for our babies? It's unacceptable. Our country has failed us. FAILED.

I feel like if we could do this all over again, I would have chosen to do it the RIGHT way. You would have been put on the cannabis oil right away, high doses. You would probably still be here today and I know this to be true. A little 8 month old baby just beat a massive brain tumor solely with cannabis oil twice a day on his binkie. His cancer is gone! It's amazing. I know if we wouldn't have done the high dose chemo, and denied the radiation, you would likely still be here. But we didn't know all that we know now. Mike did, he knew it was all a bad idea. But when you are faced with your little baby having a 4.5cm brain tumor, you panic and it's almost like you do what you’re told. Like the Jews who were put to death by the Nazi’s. They did what they were told and it was their demise. We listened to the doctors, although we didn't trust very many of them (geez, some of them you wonder how they even passed the medical board exam), we listened and put you through the recommended gauntlet they called pediatric cancer treatment for a stage 4 PNET brain tumor. Surgery, 6 rounds of high dose chemo with three stem cell transplants. Not to mention septic shock, bleeding lungs and life support as possible side effects from those horrific treatments.
I'm so sorry we put you through that crap Cashy. I'm so so sorry. I hope you know we tried so hard to keep you alive.
I’ll never forget those two months after your brain surgery when you were blind and so scared and dependent on both our daddy and I. The grueling brain surgery where we waited for you for 4 hours, we waited to hear anything at all promising from your world renowned brain surgeon. He came back half way through surgery, he was cold, had a stone cold face as he took us back into a tiny room to talk to us. All he could tell us was your tumor was in the blue cell tumor group and he was only able to remove 10% of your tumor. All that for only ten percent? 10 percent that grew back plus in the weeks later to 4.8cm.

We were called back after you were transferred to ICU and were stable. I remember walking through the maze of the PICU seeing all these sick frail babies on open beds and cribs, all with something awful lurking around in their bodies as well. We found you and you were sleeping soundly, you were all bloody and your hair had been shaved slightly where your incision was. You looked so tiny and helpless and all I could think about was why did this happen to you, to us? It was so unfair. Or poor baby laid helpless on this hospital bed with IVs and arterial lines running into his tiny veins. They kept drawing your sodium level because after surgery your sodium kept getting out of wack and they had to monitor it closely. This is what started your new love and craving for water, and all the water you could get. They wouldn't let you drink water because it would dilute your sodium level even more. But you were so thirsty that you were crying and whining, you would point to your mouth in agony for more water. They let us give you tastes of water on a mouth sponge. You hated this, until you figured out that if we soaked the sponge enough with water you could suck that thing dry then ask for more. They quickly caught on to that and wouldn't let us do that very much either. From then on your sodium levels were never the same. Your pituitary gland had been removed in surgery and we weren't aware of this until after chemo was completely done and your were struggling for your life on life support. Your endocrine labs were out of wack and you now required synthroid and hydrocortisone to live. You had to have that every day for the rest of your short, yet amazing life.

You pulled through brain surgery like a champ. You were out of the ICU in less than 18 hours and back up to the neuro floor.

We knew right away that you couldn't see. You were so scared and insisted Mike or I constantly be by your side on the bed. Sometimes I would try to get up and sneak to the bathroom and you would notice and you would slap your arm on the pillow indicating you wanted me back there right that instant. It was hard for us to even get a tiny bit of a break. Not that I even wanted a break, I wanted to always be by your side. I wanted you to know that we would always be there no matter what.

One thing I am very proud of is we never once left you alone in your hospital room. Mike or I were always there with you. We saw many kids alone in their rooms after hours, as parents had to go home to be with their other children. We always made sure one of us was with you at all times.

Your obsession with drinking water was your body’s way of regulating your sodium levels on its own. You would wake up almost every hour for water, you would put down 12 oz in 10 seconds. It was crazy. All that water had to go somewhere, so of course we were changing your diaper every hour as well. Often we'd wake up totally soaked in pee. Man it was an exhausting process, but I'd do it for the rest of my life if it meant you were still here with us.

Your thirst for water was an ongoing battle but sometimes it was worse than others. Eventually it leveled out, but even the night before you died you were up asking for water in the middle of the night. We always kept a big glass of water on the night stand so we wouldn't have to get up and fill it up, but sometimes we had to. Sometimes you would be picky on what water glass we would give you to drink out of. Sometimes it was a guessing game on what you really wanted. Those last few weeks with you, you had such a temper on you! You would delegate who could do what. I'd get you a glass of water, but I would have to hand it to daddy to hand it to you or vice versa. You were like that with everything (which I blame the tumor for your irrational behavior), diaper changes, sometimes you'd insist daddy change you, then sometimes it was me, then a few times baby sis was delegated to the task, even the dog Irey changed your diaper once. That was tricky!! Haha.

We were so scared you were going to be blind forever. Until one day after your second round of chemo, we were at grandma’s house and I was making funny faces and waving my hands at you. I stuck my tongue out at you and you copied me!!! I was like hmmm, maybe he can see shadows. Well shortly after that you were able to walk again with help and we had got the news your tumor had shrunk down to nothing but a few cells at the base of your skull. We were so thrilled. I remember getting the news and running down to the camper where Mike was sleeping because he was up all night with you (We took turns every day, we would stay from 8am-8am the next morning with visits throughout the day and then we'd switch out for the next shift, we were quite the team daddy and I) and I woke him up and told him your tumor was GONE! It was a miracle and I was soooooo happy. You were getting your sight back and things were looking up. You were starting to feel better as well. Then it was like all of a sudden you could see again. After that third round of chemo you were up and playing and running around again, despite the vomiting and diarrhea. You were such a rock star, or I should say you ARE a rock star buddy.

There are so many children out there suffering from the horrible side effects of these chemos and the radiation they are getting, this is unnecessary suffering, if anyone googled the benefits of cannabis you'd have to be a friggin idiot to not know that it's the most natural, safest and most therapeutic plant known to man. Anyone battling cancer should use cannabis first as a treatment. What's to lose? Try the oil for a 30-60 day trial and see how it goes...what if you didn't need to do chemo, what if you didn't need to lose your hair or have open brain surgery? What if you didn't need to get your brain radiated or your boobies chopped off? What if????? There's no what IF about it. Cannabis is curing cancer and treating hundreds of debilitating diseases right in front of our eyes and people are too scared to even know the truth. I try to let people know about this miracle plant and that possibly it's the cure to cancer (according to the Medium and Cashy, it is). I send messages to parents fighting cancer with their babies. Nobody listens. Nobody listens until it's too late and they want the cannabis after they've done all the horrible treatments, well expecting the oil to work after their body has been through the gauntlet, well it's highly unlikely. That's where I went wrong with you Cashy. I'm so sorry I didn't trust daddy's instincts and refuse the radiation. I know better now. It was the death of you. I'm so sorry. Daddy and I cried in bed the other night talking about this. You just can't radiate a baby’s brain and expect it to fix it. No, it comes with life long side effects if you can even get them to live past a few months of the radiation. It's sickening what these doctors call treatment. No one will even know what I'm talking about until you've sat with your baby and sedated them with Propophol (yes that’s what Michael Jackson OD' on) every day for 30 days, until they've held their baby in their arms and they pass out like a limp rag doll, then your hurried out of the room so they can intubate him and screw that awful radiation mask down to the table with your lifeless body under it. The hurt in your heart when you walk out of this giant chamber full of special walls that soak up radiation, without your baby. Then you have to wait for an hour while they pump radiation, you follow them up to recovery where you wait till you wake up. It was the most awful feeling every time. I hated leaving you on that table alone, and cold. You always came back frozen from being in that cold room all exposed. My poor sweet baby.

Radiation was short, only lasting 6 weeks but it was by far the worst thing you had to go through. I'm so sorry for that. You were such a trooper, sometimes you would even play on the jungle gym at the Ronald McDonald house afterwards. I always admired your amazing strength.

Oh how I miss you so much. So much has happened in the last few weeks. We found new homes for both our dogs Irey and Muffy. They weren't getting the attention they needed and sure as heck would never listen to us one bit!! Irey would jump the fence immediately when we let her out. She is like a dang gazelle. She'd be gone all day, till she felt it was time to come back or she was hungry. So she went to a farm out of town with an old couple who has the time for her. Muffy went to our friend Dan’s parents in Bozeman. It's been really lonely without the dogs, so quiet. You always cracked me up when Irey would come and jump on the bed to sit by you. You would yell "IWEY, No, get down!" It was so cute. You would yell at Muffy too when she would come sit by you on the couch. Haha.

I was so sad initially thinking about moving out of our house we have so many memories with you in it. But now that we have moved, the big move was this weekend as I know you were with us. The new house is awesome! We're so excited about it. It's spacious and has charm. Although the kitchen is outdated and the kitchen is MY domain, I am trying to make it cute. You can tell it hasn't been updated since 1970. Lol. Talk about some pee green tile on the wall as border. Eww!!! Oh well, though I don't mind it one bit. I’m just happy to have so much room now!!! The backyard is basically the woods, there’s a huge ravine, and a creek with lots of trees. Deer everywhere! Colty is in little boy heaven! Yesterday morning he ran out chasing a deer and fell into the creek before school (it's shallow up to ankles), he required an outfit change. Goofy kid. Colten and Sissy each have their own big room and YOU even have your own room!!! I was so excited about this. You never had our own room at the other house. So this is YOUR room!! I'm gonna hang our Spider-Man poster and some other things. I had an awful dream that you were wandering around the house looking for us and you were so sad. I woke up bummed.

Sometimes we swear Catherine Joy is you in disguise! What 10 month old baby loves to play with matchbox cars??? Umm not many!!! I constantly find sissy playing with your cars at the old house, well two days ago I couldn't find her for a sec and I found her in your room playing with your cars, lol. Then yesterday, I found her playing with two of your band aids, I had no idea where she even found them, as we've moved and everything is in disarray. There are just so many similarities with you and Sissy. I love that. It's almost like we get a do over with her. Cashy keep her healthy and protect her, as I'm sure you are.

While in the midst of packing and sorting through Cashy and Cat’s things last week, one of Mike’s friends little girl was over and she is a few months younger than Cashy. She goes, "too bad the baby doesn't have her own room," I go "well she does now," and Autumn goes "well, where is your other baby going sleep?" I told her that Cashy died (assuming she wouldn't know what passed away meant), she gets all concerned and goes "your baby died?" She was so bummed about it, and a little bit later she comes up to me, "I miss Cashy so much." I was like "I do too honey." She was just so cute, and it always blows my mind when I see kids your age Cashy. They seem so big and grown up and they all talk so well. It hurts my heart to think that, that's how you should be. Running around, talking in sentences, playing in the dirt with guns and worms. Being a little boy. You were robbed of that life buddy. You were robbed of a normal little boy life. I prayed every night for that for you. I'm glad we had a few good months in between. When little Autumn was born she was born with a small deformity on both her hands and feet. I remember thinking when she was born that it was the most awful thing that could happen, and I'm a nurse so obviously I've seen worse. I remember thinking, “thank god that didn't happen to my sweet Cashy” who was born three months earlier. God, now I’d trade deformed legs, arms, hands, feet, cleft palette any of those for cancer. They're all cosmetic. Then 4 months later my good friend Megan's baby girl was born with two holes in her heart and would require surgery before she was 1. This was devastating as well, again I was so thankful it wasn't my baby, but I hurt for my friend who was so scared for her baby. But now, Baylee is a healthy happy little 4 year old girl, who just chopped her hair off with scissors! Lol.

While packing i found your missing crocs with fur inside of them. Tucked in them were some dirty socks. I smelled them and was able to smell your stinky feet. You always got a huge kick out of us smelling your toes and saying,"peew!!!" I cried so hard when I found all your shoes, most of them are single now as they dont have a match. Breaks my heart.

Well, we’re finally settled in our house, daddy has a foundation office as well and we’re planning a Reggae Jam concert with Pato Banton again for the foundation at the Top Hat on April 11th! We're so excited about this!!! I hope everyone can come out and show their support! It'll be free to the public!

My good friend Jacque came to town the other weekend as we had planned to do a ski day at Snowbowl. So we ski'd Saturday and tore it up on the east bowls and had a blast! Jacques a damn good skier!! We could all use a lesson from her. I told her she was like an angel on the snow! lol . Unfortunately, one of our near and dear friends Nikki Lynn from high school passed away and we attended her funeral the next day. It was such an amazing turn out and it was a great celebration of Nikki's life. RIP Nikki, watch over my Cashy for me. I know you are! Nikki, I hope you know how many people love and care for you and your giant heart. No more funeral for me please!!!!!

Daddy went to LA that weekend and set up a foundation booth at the High Times Cannabis Cup. Cashy you still are a well known celebrity in the cannabis community! Daddy is so passionate about this movement and I really admire his dedication and perseverance. I love you babe! He had a real good time and got to spread your story to more people!

I always try and make it a point to tell someone new your story. Even at the YMCA when I go and workout I usually give out a bracelet or two, just spreading Cashy’s Cancer Awareness! It's the least I can do. I want everyone in the world to know what a fight you put on for the world to see and even though you’re gone, you've touched so many lives in your short time on this earth.

I had a great dream of you yesterday while I was taking a nap before work. We were at some kind of water park and I was in the pool trying to get you to jump in, you jumped in and grabbed on to me and we were floating around and we had our arms wrapped around each other and I kept telling you, “I love you and miss you so much.” It was so great. It was like we were reuniting for a quick swim! Loved it. Keep them coming buddy!!

Well I must end this post sometime, so with that, I’ll say that I love you to the moon and back to infinity and beyond and miss you so much. Give daddy a dream of you please, he's yet to have one and he's broken about it.




















3 comments:

  1. Hi Kalli. Thank you for sharing so openly your journey. Keep writing. Keep sharing. It will help.

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  2. I never knew they only took 10% of the tumor but took Cashy's pituitary gland, which is SUPER vital. That makes me mad, but I'm gonna harness that rage and do something productive today about Cancer, Cashy and Cannabis. God bless you, Hyde family.

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  3. Thank You for sharing- Thank You for continuing to spread the TRUTH, and awareness to this terrible disease. Thank you for putting your awareness into ACTION.
    ONELOVE for a CURE!

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