Most people probably don’t know this, but September is Pediatric Cancer Awareness month.
The color of Pediatric Cancer Awareness is GOLD, just like the color for breast cancer awareness is PINK.
To me, every month is Pediatric Cancer Awareness month, it doesn't change. This will forever be my life since that 3rd day of May 2010 when our lives forever changed. You were 22 months old laying frail and weak across my lap in my arms as we heard from the ER doctor the most deafening and mind numbing words any parent could hear, “I’m so sorry, your son has a 4.5cm mass in his brain.” It bears repeating because just–like- that, our lives were changed forever.
That day forever changed us, not just as parents, but also as genuine human beings. Daddy and I are changed for the better. We are aware, we are dedicated and determined, and we are ready to wage this war on our nation’s terrorist…cancer. It doesn’t even deserve a capital letter.
I see grief as this endless ocean of my life. I will always live in grief, I will swim in grief, I will breath grief, and it will never go away. I learned to cope with this, in a sense. Daddy’s grief and sadness is mirrored to my sadness, only Daddy and I truly know what it’s like to love you, and to lose you all at the same time. He knows that emptiness feeling in my heart that I feel constantly, endlessly. I will always have that hole and that feeling that something is missing, because truly it is. You’re missing. Acknowledging that living without you is sometimes easier than it was living with the thought of losing you. If that makes sense in a twisted, messed up sense of reality that I live in.
I know to the parent of healthy children they probably find my continuous, nonstop push for Pediatric Cancer Awareness a lot to put up with. I know it’s hard to see my posts and think; damn this could happen to my child any day, any second. I know it’s probably disturbing to see the pictures of all the children affected by this horrendous disease. But this is REALITY! This CAN happen to your child too. If they don’t like my continuous influx of knowledge and the facts, well Cashy, they can delete me, un-friend me, block me, hell, never talk to me again---not very many people do anyways. If they don't want to help me be an advocate for our children, well I don't want them as friends then. So I’m not ashamed, I’m not afraid of what people think of me, I’m not one to just sit back and continue to watch children suffer. I hate that hundreds and thousands of families that feel the exact way Daddy and I feel about losing you, as they do their child. Pediatric cancer is literally the number one killer in children under the age of 15. Every 5.7 minutes somewhere in the world parents are holding their baby while they take their last breath, because of cancer. This is unacceptable. These children are our future. They’re our future doctors, our future scientists, our future teachers and architects; they are our policemen and our firefighters. These children don’t even get a chance to live a whole healthy life. Only 3% of cancer funding for research is given to pediatric cancer! 3%! That’s shit. That’s fucking ridiculous. The chemotherapies they offer our children are from 1974!!! Before I was even born! They used these treatments on you and I didn’t even know how outdated they were till I dug deep. That’s the best they have to offer our children, chemotherapy from the 70’s! Over 40 year’s ago! They can put a man on the moon, they can have drones that fly bomber planes, they have Google glasses that do god knows what and more technology than you can shake a stick at, and yet were still pumping poison from the 70’s into our children as viable treatment options???? And the President can’t even be considerate enough to light the white house GOLD in honor of all these children who fight and that have fought so hard to live, even after the petition was signed by over 50 thousand people. It sickens me. Obama sickens me. Obama you’re sick. I bet if one of his daughters developed a cancer, there would be top of the line treatment ASAP, or actually they would probably skip the chemo and use cannabis oil, since they are the ones withholding a natural nontoxic plant as the cure to cancer. They do hold the patent to cannabis as a neuroprotectant and antioxidant, and now they have patented it as an anti tumor. That's right, the government does have the cure, but eff our children who are dying...Keep the weed illegal right??? Well we all know it’s all about big pharma and their quest to make as much money as they can off of our children and loved ones. But I’ll leave my political views out of this one. Now I'm on one, and pissed.
I hope you know that we tried so hard to give you happiness and the best life you could possibly have. We tried so hard. I hope you know that even though your life was cut short, every morning and every night, you woke up and went to bed showered in kisses, hugs and more love than any family could give a little monkey boy like you. I kissed that soft fuzzy head of yours every chance I had. To the point where you would smack me sometimes and say, “momma!”
I read a quote from another mom of a cancer child, she said, "You know your child is sick when you’re jealous of another kid’s cancer." Boy isn't that the truth. The fact is though; all cancers come with differences and different survival rates. We all know brain tumors are the worst of the worst, but all cancers have death rates and some are more deadlier than others. But I often caught myself saying, “geez why couldn't you have had leukemia or a lymphoma cancer, why did it have to be brain?” Thinking like that only will drive you to the crazy farm and reality is cancer sucks no matter what, there is no EASY cancer. Cancer isn't about cute bald headed kids and constant opening of presents, it isn't about cute St Jude's commercial with kids dancing and having the time of their lives. It’s not. It’s blood, sweat, tears--IV's, Brain surgery, gtubes, Centrals lines, MRI's, Stem cell transplants, methotrexate, vincristine, vomiting, nose bleeds, gtube infections, a box full of prescription medication you needed daily just to survive, and those toxic chemicals slowly dripping into your blood. It’s wearing double nitrate gloves when changing your pee diapers so I wouldn't come into contact with the chemo urine, the chemo that is so toxic that a normal healthy person can't even touch, but they're dripping this stuff into your central line??? How did I even survive all of that, actually the real question is how did YOU survive all of that???? Hmmm well, you didn't, but you did.
It's sad how when life throws such wild curveballs such as a death of a child, things around you that used to be "normal" things to do, just aren't normal anymore. We don't get those invitations to little kids birthday parties like we used to, we don't get calls for play dates, or get together at the children's museum. Do people think we just stay shackled up inside all day? No I don't. I still have two children who play, who run, who color, who play with playdough, who bounce on trampolines, who eat cake and make messes. We still do all these things, just without you Cashy. And we do them alone, cuz that's how it is now. Sometimes it would just be nice to load up in the car and drive to a friends house for a cup of coffee and just some friendly chatter as the kids play in the back. But there's really no one to do this with as all my close friends either have moved away or the ones that are here, just are too busy. It's understandable. I'm a busy person too. Cooking, cleaning, working full time on the night shift, breastfeeding, working out (if I'm lucky), trying to blog every once in awhile. It doesn't leave much time for me time and that's ok, I signed up for this motherhood/wife thing over 9 years ago when we found out we were going to be having a baby at the ripe ol' age of 21. Maybe I need a girl’s night out! :)
Your brother is going to be 9 years old next Saturday! 9, I can't believe that. It makes me seem so old!! I will never forget that day we found out we were going to be parents. Boy was it a shocker! I was still in nursing school with one semester to go. Daddy got a working mans job right away at the mill shoveling saw dust, just so we could afford our own home (or pay half the rent as my dad helped us on the other half while I was still in school, thank god for that Dad, it helped us out so much, I credit us still being together because of that---when money is tight and your a young couple it puts a lot of stress on a relationship).
Daddy was so proud when he held little Colten John for the first time. Man that seems like so long ago. I can't believe we've been parents 9 years now! It's definitely been a bumpy road. We didn't gain alot of our knowledge on parenting until you and cancer came along. It really put things into perspective for us. Thank you Cashy for making us the parents and people we are today. You've changed so many lives in your short stay on this earth.
I've been having a hard time lately with the fact that you've been gone nearly 10 months now. It's so close to a year that I'm speechless and nauseated at the thought of celebrating your deathaversary. I want to plan something fun and exciting to celebrate your life and all you've done for our family. My wheels are turning and I hope to come up with an idea for a celebration of your life soon.
Your tombstone is almost complete. Thanks to the Mason Kane foundation they donated 500 dollars to getting your engraving done, we now only need around 1800 dollars and we are getting close. We're hoping to have it up on your gravesite by your death date of end of November.
August was a crazy month!! After driving to Olympia WA for Hempseed 2013, two weeks later we drove to Seattle to run a booth at the largest Hemp Fest in the US. Large was an understatement. They estimated around 500 thousand people! This event stretched out over 2.5 miles along the rocky beach. I couldn't even make it to the end because there were so many people and trying to maneuver a shitty stroller with an unruly toddler screaming in it was extremely hard!! Thank god for the VIP tents that the speakers got to go back and chill out in. If they didn’t have these tents, I probably would have freaked out the second day! Lol. Sissy was so busy into everything and everywhere and wouldn't sit in her stroller. So it was nice to have a place to go and sit back and breastfeed her so she could take a nap! Also we met some pretty cool people back there too! Our booth was placed right over the back of the ocean with tons of sharp pointy rocks that lead down to the shore, of course Sissy wanted to play back there and it kept me in a constant panic mode that she was going to fall off the rocky edge to her death. Ugh!!
(Steve D'Angelo owner of harbor side Health care)
Thank God for our amazing friends Amanda and Nick who drove us all in the suburban and put up with our messy kids just to help us out!! Mikes cousin Billy came and helped out too!! It was soooooooo busy. Billy really was on a roll at telling your story and helping advocate our cause. Having to tell your story over and over and over really weighed on me a lot. It was exhausting. We raised a lot of awareness and tons of people now know your story and the battle you put forth, that was our ultimate goal!
We even donated two of the new Reggae runner Trucks to Seattle Childrens Hospital that sunday morning with Serena Haskins with Sonshine Organics and her crew. What a beautiful hostpial and cancer unit they have. I was really impressed and couldn't help but question if maybe you had went to Seattle instead of Salt Lake, maybe you would still be here. But doing that to myself only drives me crazyier.
Daddy did three speeches at Hemp Fest! He's amazing at giving a speech about you and your battle. Every time I watch him I'm amazed at how well he does and how well he can articulate. I'm not one for speeches; I get all nervous, sweaty and say umm a lot. I’ll keep to blogging! Lol. Go Daddy!
We stayed in a Hostel in China Town while in downtown Seattle, as all the hotels were over $200 a night; it was Interesting to say the least. All 7 of us had our own bunk bed! It was like being at soccer camp! Lol. Except I had a baby on my boob all night.
Three full days of Hemp Fest was a lot of work and a blast at the same time!! We can’t wait to go back next year and we will be running a pancake stand along with it next year!! It'll be so fun! Thank you everyone who made us feel so welcome!
Colty started up school again last week. He's a big 3rd grader now. I took him on his first day along with Sissy and he was so nervous. On our way he goes, "Oh man, I'm so nervous I'm gonna puke!" He didn't though! Of course he hasn't said anything much about it when he gets home besides that he doesn’t have homework and that he had a good day. I'll take it I guess. That kid is more concerned about hunting season starting up today than anything else! Guess what he wanted for his birthday, now I don't think he's even a normal kid, he wanted hunting boots! Crazy kid. He was even going to buy them with his own wad of money but I told him that we would cover it. Lol. He's a character!
That first day of school I was feeling so sad, sad because I knew if you were here it would of been the day you got to start kindergarten (well if we would of let you go). We lined up on the playground in the designated number for each class. I saw all the little kindergarteners all lined up with their backpacks on and their big grins on their faces, like it was the best day of their lives. It hurt. It hurt my heart, and deep down in my soul. I had to hold back the tears and be strong. You were robbed of a normal healthy life. It was stolen from you by that nasty disease cancer. I fucking hate you cancer. And I hate the word hate, but there is nothing on this earth that I hate more than cancer and it deserves the word hate more than anything.
Last year I’ll never forget the day we went to head start to sign you up for preschool. You were so excited. You brought your Buzz Light Year backpack with a notebook and some markers. You sat and played with these building blocks on the floor while I talked with the teacher, told her my concerns and your abilities. You were so full of life and energy that day, I was so happy for you. That you were actually excited to go to school and be a big boy and experience things kids that aren't sick get to experience.
We thought you were cured, that you overcame the tumor reoccurrence and you were finally getting on with life and putting sickness behind you. We had you up to 26 pounds finally! You were 26 pounds at your 18 month check up before cancer and 2 1/2 year later, chemo, radiation, life support---you were finally 26 lbs. again and you had some chub in your cheeks. We were so thrilled with your progress. There was no way you were ever going to have to battle for your life again. So we thought. I was so wrong. I'm so sorry; I'm so so so sorry buddy. I hope you can forgive me for what we put you through. I'm just so sorry we couldn't save you. My heart aches to hear your giggle, to feel your hand in mine, to snuggle you close. I miss everything about you and it's not getting any easier.
We went camping last weekend for Labor Day, up to the same spot we went last year, that was your last camp trip with us. :( We roughed it for 3 nights. We had a great time, no cell phone service, no Facebook. Just the middle of the woods! No people around us! Mike set up his hunting camp and did some scouting and we had a bunch of friends up to have a good time, laugh, talk, and sit around a beautiful fire pit! Amanda and nick even had a cook tent set up so we had a place to cook and wash dishes, our camper and their camper, plus 3 tents set up, and a full on shower tent!! Let me tell you that was nice to have a nice hot shower during the middle of camping!
Casey's sister Sarah and her boyfriend Ivo came up for the last night of camping. Ivo is from Cameroon, he shot a gun for the first time in his life and also went swimming for the first time!! It's crazy how we take the littlest thing like swimming in a river for granted.
So daddy has taken it upon himself with the help and support of his family and good friends to run for Mayor of Missoula. He's so dedicated to this and has put his whole heart and soul into this so far!! We just received all the yard signs and handouts and now we’re getting busy starting off his campaign. He's had some really promising meetings with high up people and well let's just say he's got a really good chance at blowing this out of the water!! I know Mikey can do anything he puts his heart into. He will do it and he will do it better times twenty. He's been working on speeches and questioners he's been receiving, going and giving speeches and answering question, talk radio shows etc. He's been one busy guy lately! You would be so proud of him! I know you’re with him every step of the way. He will win and he WILL change Missoula for the better. I know it. It's just what our town needs. Some change in the right direction. Our current mayor of Missoula doesn't have children. We need an advocate for our children, we need to quit feeding our children Sysco food for lunch at school, and we need to better our school lunch programs so our kids are taught the right way to eat, to prevent obesity, to prevent diabetes, to prevent cancers. We need to educate our Children on how to eat properly. To know what's good for you and what isn't. Our kids need to know that hot dogs are not good for us. That soda pop and chips are not good for us. Kids don't know these things and its up to us as a town, as parents and citizens to change and better our children so they can grow to be healthy stand up adults.
I came across a Facebook page of another little boy fighting cancer. The mother posted a picture of a cart full of groceries for their son with cancer because he's on a protocol where he recieves high doses of steroids. Steroids make these kids hungry like no other, I mean these kids will eat anything. They're hungry! Which is good, but it often makes them balloon up like the Pillsberry dough boy. Anyways her cart was full of junk food!! For her kid with cancer; cookies, candy, chips, lunchables. I couldn't believe it. Everyone knows sugar helps grow cancer. Preservatives grow cancer, foods like this is terrible for anyone but especially for your kid with cancer. But people don't know these things and the dieticians at the hospitals don't teach you these things either. That's why it's important to educate people about healthy ways of eating and living. Here is the pic below.
Well Cashy I must go. I just want you to know that I love you to the moon and back, to infinity and beyond, forever and ever. I hope your safe and watching over your big bro and baby sis. Please protect them. I love and miss you monkey man.
Thank you for sharing, Kalli. You are a beautiful and strong Momma, keep moving forward! I'm so proud of you and your beautiful family - it can't be easy, but it has to be done.
ReplyDeleteMike will make a fantastic mayor.
Blessings!
Rhea
Oh Kalli- I want to come by for coffee and to give you a hug! I'll bring the kids- you make the coffee double strong! We will need it these 5 kids ever get together!
ReplyDeleteMike will ROCK that Mayor thingy. He has it in the bag! His plan sounds golden and too good to be true- Kinda like your family <3
Sending you lots of LOVE!
You don't know me but I follow your blog. There are so many (one is too many) kids fighting this awful disease. My heart breaks for each kid and also breaks for their family.
ReplyDeleteYou are doing an amazing job taking care of your family and just making the choice to continue on in your life...
People from all over (in this case St. Louis) are paying attention...and hoping to build awareness and also let you know that you simply aren't alone. Cashy made a big difference in his short time -- and all of us hope we can do the same...even with so much more time. You all have much to be proud about and much to believe in.
Take care of yourselves and each other.
Laura
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