Life as I used to know it.

I used to think I had life figured out, I knew what I wanted, and I was working towards that. It's funny 8 and a half months into this leukemia fight, being the right hand man for my wonderful son, has changed me. I get really frustrated seeing others and their reaction to my mask wearing, bald headed super hero, and I get concerned seeing their reactions as well. I want to sit with all of them, and clue them in, on the realities of life, I have come to know.
Don't "feel bad" for my son, instead look at his courage, and his strength, as he stares cancer in the face, and says, "not this time". For his strength is what keeps me going.
I used to strive to give my children all of the perks of life, nice clothes, new toys. Those perks have been a distant memory as it becomes a fight to sometimes put food on the table. I am a very proud woman, and it takes a lot out of me to willingly accept the helping hands of others. I get upset when others don't allow me to help them, yet sometimes myself won't admit I need the kindness, and generosity of friends, family, and strangers.

As we embark on this holiday season, knowing there is no room in our very tight budget, I thank those of you, for adopting my children in your hearts, and thinking of them. As a mother this is one of the most painful things putting pride to the side, and admitting, if it wasn't for the kindness in the hearts of others, we wouldn't even have a tree this year.
I am in no way asking for a handout, I am simply saying thank you. And as you go about your holiday plans, with the hustle and bustle, be safe, and know in your hearts, there is someone out there, who may not say it personally, but is indeed very grateful that you were there, when it seemed no one was, and that is truly what this time of year is about.
May God bless and keep you.

Hockey game

So tonight we went to the grizzlies game, with the leukemia and lymphoma society. Awesome story, when we got there, and were finding our seats, a really nice lady, who works for the administration office, offered us upgraded front row, right behind the glass to the left of goal seats. So so sweet of her. The kids got bear claws, and hockey pucks. And really (maybe too much) enjoyed the face smashing glass action.
Fun night.

Update

Wow I am really bad at updating, korbyn is 3 weeks away from final maintenance, which will be only every 4 weeks iv chemo, and prescription chemo at home. This little guy shows me daily what bravery is. I have seen him look cancer in the eye, and stand his ground.
Right now the only real concern is the " manorexia" he is getting so skinny. I don't think the Dr appreciates my sense of humor, when she said he has chemo induced anorexia, I joked that with the barfing, I think its more a bulimia thing. She didn't find it funny.

I never knew that a small child could show me so much about life. But korbyn shows me all the time what's important in life.
I don't know why this trial was chosen for us, but I do know we will not back down. We will fight to the finish line. Finish line is 3 years 3 weeks away. Korbyn should be done with treatment just shy of his 7 th birthday. I'm thinking January of 2017 to celebrate, maybe a nice cruise or something.

Halloween

Thank you, everyone for bringing the trick or treating to this brave little guy. Seeing the outpouring of love, has once again brought tears to my eyes. And words can't express the thanks I have for you taking time to bring a smile to this ninja fighter after a long day of ninja fighting chemo.

Update

Korbyn is back to every 10 days chemo. He will be having chemo, with LP chemo as well on Halloween. The hard reality of childhood cancer is taking away normalcy from a child's life as cancer becomes the new normal. Trick or treating will not happen for korbyn this year, he will probably be too sick. It sucks. We have a few awesome friends who are reverse trick or treating to korbyn. Trying to bring smiles to a little guy fighting a big battle.

I want to say a special thank you to charity, and her amazing friends who delivered preschool supplies to us, for Korbyns preschool. The kindness is appreciated more than you know, and when he feels up to it, he loves mommy and me preschool. He loves "homework" as well.

Wow we haven't updated for quite a while.
Korbyn has been under quarantine and solitary, His counts have been horrible. He spent some time in the hospital for neutropenic fevers, and a couple weeks on iv antibiotics every 8 hours. His counts have recovered enough to discontinue the iv antibiotics.

While he was in the hospital he got to meet Batman, and friends.

august 30th

this friday night chilis restaurant is holding a give back night for korbyn. mention korbyns cause, at the west valley, west jordan, orem, or centerville location, and 15% of your purchase goes to korbyn for help with his medical bills. please help us spread the word, and get people out, lets show korbyn that he doesn't fight alone.

korbyn only had 2 pushes of chemo today as his good guy counts are tanking. he will have 2 blood draws over the next couple of weeks, before we start super intense therapy options. as they anticipate he will need a transfusion before then.
he was playing with color, cornstarch, and water at clinic today. he had so much fun. and that's super easy to clean up.

Family Camp out

korbyn endured 3 more pushes of chemo yesterday, and this is taking its toll on his little body. 8 pushes in a weeks time, is so much for one child to endure. His counts remain borderline so we are on orders to not be more than hour away from the hospital, as they expect a drop any day now.
he has been asleep since leaving the hospital yesterday, and during the few minutes he's awake, he is ill.
he is strong, and he will prevail, and he will show those bad ninjas that he is their master.

update, for our followers, friends, family, new friends, new family.
korbyn will be getting an ekg, a red blood transfusion, as they will be doing the peg push tomorrow. this weekend with 4 pushes of chemo (3 different types, iv, and spinal) and starting the steroid pulse, had knocked the ninja fighter down.
He stopped napping at 10 months old, and these past 4.5 months have more than made up for lost nap time. his awake hours some days mimic that of little babies.
steroids have kicked up his appetite, which is awesome, as this little guy has gone down to 24 lbs. this last 3 months. friday they ran his weight and height on the percentile ratio, for age. he is not on the chart for weight ( below 0% percentile) & in the 11% for height.
we will avoid an ng tube for now if he can atleast keep drinking to stay hydrated. and flush his kidneys accordingly. we are 3 days into our 56 days of intensified chemo regimen, and best case 109 days away from starting maintenance.

long update, but that's where we are at. we have 3 years, and 109 days best case left in this fight to the finish line. the finish line is just shy of his 7th birthday.. he is 3 now. how's that for reality check of this long hard fight.
God bless you all, and thank you for your love and prayers, as we push along.

update

yesterday we had out first super intense chemo session. its rough this road. I am not gonna lie.
korbyn had spent 4 hours awake today. total.. its hard business fighting bad ninjas. we are back up to primary childrens tuesday for an echo, and possible transfusion, and they will do the super potent push.
then again friday for more heavy hitter chemo.
totally 8 rounds 1 week.
yeah holy crap is the phrase you are looking for.

but on to this..
this evening, I want to open up to you, maybe cause tears.
the world of childhood cancer is already a hard road, first and foremost to the fighters. secondly their family, extended and immediate. it hurts the family close by, seeing this, and the family further away, who want so badly to be near, and there for you.
it hurts the true friends, who see you, and your heart and pain, through your words. These kids, families and friends are hurting enough, they don't need anymore pain.
to those of you who lift us, in our times of trouble, we lean on you because we don't know sometimes what else to do. sometimes honestly we just need you to be that one friend, confidant, shoulder for tears. that one glimpse of sunlight through the storm, that hand to hold, as we look trying to find the right.

on a happy note. korbyn was nominated as a hero on
www.gamerosity.com

it is for a hero package for him to have while at the hospital. if you could somehow help us, purchase a trinket or something, or get the word out, that's awesome.
there is a cars racing game, that I can't get on my kindle for him, as it is an apple app. the IPAD had that game. he loves it if we have a child life volunteer with an ipad so he can play.
I know he would be able to stand more treatment, if I could have that for him. I tried the kindle doesn't have the one like apple products, and I know he would love it.

love michelle. thank you for loving us through this.

today we talk about some emotional aspects of childhood cancer.
when we potty trained korbyn in february before he was diagnosed, I bribed him, by telling him he could go to school like big sister does, if he's a big boy and goes potty in the toilet.
it took a weekend. he wants to be a big boy. as we move closer to kindergarten for sissy he sees that we are getting her set for school. and heart break sets in, on me as he asks about ms. julie, and who will drop him off, and pick him up from preschool.
it may seem dumb to you, but it is so hard emotionally. how do you explain this to a 3 year old, that you can't go to preschool. stupid cancer put her nose in our lives, and even though you are a big boy and earned it, you can't go. He wants to go to ms. Julies class, he loves her. and as a mommy it is so hard to break this promise to him.
schooling as well is something that is taken for granted. and with pediatric cancer is an emotional pain that's not always seen. the tears of this little boy, as I tell him he can't go to preschool, hurt beyond words. and I can't even console him. he pushes me away and says leave him alone. because he is hurting. and his hurt in this mothers heart, is a pain no one can ease. its a burden no one can lighten, its a tear no one can dry.

http://www.gofundme.com/2zeq04

after being asked by a couple people, here is korbyns link to go fund me.
also there are team korbyn shirts available, send payment to korbyns fight@gmail.com
its 20.00 including shipping. in the memo/notes, indicate sizes, and shipping address.

thank you

my wonderful cousin ethan sent the kids cards in the mail, filled with so much love, and encouragement.
Ethan knows what toll chemo and radiation takes on your body, ethan as a child too, has been there.
thank you ethan for your words to encourage korbyn, and your friendship to kynzee. and thank you for showing us the other c words, that have a nicer tone to them.

first you learn to climb

you learn great things a little at a time, to learn to climb a mountain, first you learn to climb.

an awesome quote.
Favorite quote--author unknown.

"Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light" -Author Unknown

all it takes is one simple spark to get a fire going. Korbyn is that spark, that keeps my fire going, he is that light in the darkest of times.
him and his big sister, are the reason I am who I am. you call me amazing, and wonderful, and beautiful. I no longer negate these things, as I know I have 2 wonderful children who teach me to be just that every day.
this life right now is no where nears where I dreamed it would be, but through the trials, I am learning that God only gives you what you can handle, and he gives you the special child spirits if you are deserving. I still haven't figured out just why we must be going down this path, but I do know, if you let God, and his infinite wisdom assist you, in the journey, you will reach that destination.
what that final destination may be, I do not know, nor do I know who, what, when, how, god will work through others to help us get there, but someway, somehow we will.

for years I have struggled spiritually, and having any faith at all in God. im still far from where I need to be, to let that light shine, for now, I help that light shine in my brave son, who is that flickering candle in the wind, and I will help him, so that his light will shine, to bring courage, hope, and bravery to the world. I will hold that light heaven ward so all that are willing or want, can see that flickering light, for light and warmth, in their coldest, darkest times.

what does brave mean to you

to me, the essence of bravery is a child, who has been given challenges in life, and yet continues, with all their effort to be just that , a child.
if I could trade places with korbyn and take this demon on myself, I would, in less than a heartbeat. but in all honesty, could I do what he does, with as much courage, and fight, without complaint, with very few tears, and no pity me party train? no I couldn't because, I am not as strong as this wonderful child. I see the pain, the sickness, the misery, every day. And he doesn't ever want or seek the sympathy, he is a child. the bravest 3 year old I know.,
as adults when we have a pain, a cut, a bruise, we seek after the sympathetic head turn of, ' oh you poor thing, are you okay'. children cry when they are hurt, yes, but do they cry over "spilled milk" as much as adults.
korbyn shows me daily that heroes come in all shapes, and sizes. and bravery is a state of mind, he is that picture of brave.
some people go their entire lives without meeting their heroes, I'm the lucky one, I gave birth to mine.
my children are the reason I do anything in life. they are my life.

jason mraz blaring some korbyn rally song.
I won't give up on us, even if the skies get rough.

here we go. 3 pushes of the hdmtx. some iv zofran to combat nausea.
we got this ninja fighter. my sons battle is my battle.
some people never meet their hero, I gave birth to mine.
korbyn continues to amaze me with his courage and bravery every day. at 3 years old he is being put the test more than I can fathom, with all of the courage and bravery of the strongest warriors.
he shows me daily what it truly means to be brave.
he is a strong warrior like grandpa, and he will beat cancer like his grandma.

lets talk reality for a moment. we all have our sob stories. but did you know the cost if treating pediatric cancer with insurance is almost 1000 a month? but you have to do it, you need your kids in your life.

I am a pediatric cancer advocate, because kids should never fight alone, and I need my son in my life. my children are my life.

time for a michelle twist to bring humor and positive spin. thank god they can't repo chemo.

they power of prayer and love, amazes me sometimes. and the prayers for my little warrior bring tears to my eyes, knowing he has friends worldwide rooting for him, from Germany, to China, to Canada etc.
I am so amazed at the love and crusaders who are sending prayers, and good thoughts for victory for my child.
together many people can do wonderful things.
trying to relax today, before getting set for the next installment of treatment. we have blood work tomorrow hospital thursday, hopefully just thursday. no more unscheduled appearances up there. we have an actual home, that I would rather hang out at :-)

teaching kynzee about words that rhyme tonight.
describes our exciting day to a T.
korbyn fell down the stairs and his access was ripped out of his port. scary day. he is fine, but scary day.

so tonight I was teaching kynzee about words that rhyme. very observant 5 year old.

Korbyn bear fell down the stairs, and I was scared, and mommy freaked out for a little bit.
I went to tami bears house. and korbyn bear messed up his face.

can we have a normal day around here?

teaching kynzee about words that rhyme tonight.
describes our exciting day to a T.
korbyn fell down the stairs and his access was ripped out of his port. scary day. he is fine, but scary day.

so tonight I was teaching kynzee about words that rhyme. very observant 5 year old.

Korbyn bear fell down the stairs, and I was scared, and mommy freaked out for a little bit.
I went to tami bears house. and korbyn bear messed up his face.

can we have a normal day around here?

giving back

we have a unique opportunity to give back. we met a wonderful woman saturday at the yard sale, who works with a non profit, and gives to underprivileged children provides light to them at christmas time, etc.
I saved all of the nicer looking books in my garage, for her to go through, in an effort to maybe pour sunshine into smothers soul during their hard time.
we understand what it feels like to be in need of a hand. and I am truly a believer in people helping people, and the world needs more of it.
I am not sure who, if anyone reads this blog, but for those of you that do, for the month of september because that's childhood cancer awareness month, I challenge all of you to pay it forward. someway somehow. it doesn't have to be big, it can be something like paying for the food at a restaurant for someone else. mowing someone elses lawn, etc. you never know if your random act of kindness will be just what a struggling soul needs at that time.

love, and prayers
michelle

thank you to everyone for your support at the yard sale today. your love and support are very much appreciate during this trying time.

korbyn update. he has not been drinking much this afternoon, and we will hook him up to the iv fluids tonight. he is a pickle.

our second home

spent a couple more unexpected visits days at the hospital. its pretty much our second home, definitely costs more than our actual home.

ninja man has fallen off the drinking wagon again. boo. when he is a college boy i will happily say my son is not a drinker. but when he's a toddler fighting cancer refusing to drink; i say boo. 

convincing powers of mommy, they just order fluids for home, leave the port accessed, i took that "training course" already let us go home.
yeah for home. boo for not drinking and needing to keep the " korbyn on a string" get up to prevent dehydration.

yesterday was an exciting day. We traded fun homemade goodies with another cute little one fighting leukemia. We made hair bows for her fundraiser, and her wonderful mommy gave us some beautiful jewelry for korbyns.
we received boxes of love from another cutie, filled with necessities for keeping the korbster healthy, and little gifts for sissy as well, and mommy things.
And we ended the day with a trip ti the hospital. high fevers are automatic emergency room visits. Luckily his neutrophils were high enough, and we live close enough they let us go home to watch him there.
It was perfect timing when the Mormon Missionaries stopped yesterday to offer assistance for Saturdays fundraiser. I was waiting on oncology to call back, and they knew i was worried, They offered korbyn a blessing for healing and strength.
those young men will be there to help with the fundraiser Saturday. if i give them "team korbyn" shirts to wear on their rest day, is that acceptable practice?

my life has changed these past few months, and a new purpose and destiny are evident. spread the word about childhood cancer, get korbyn better, and after we have made our way past these next 4 years, we will find a way to help others. we will be the beacon of strength, courage, bravery that others will need.