If you have not registered for the ninja run this coming Saturday. Please do.
http://beta.active.com/running/salt-lake-city-ut/fighting-all-bad-ninjas-5k-10k-run-2013
You can click this link. And register here. It will be a lot of fun and we hope to see you all there.
The hawk after 2 weeks of treatment and the hawk today.
Stubborn like mama, boy is tough and brave enough for the fight.
Please God bless that he keeps his strength. I need my kids in my life. they are my life.
Hard bittersweet day. I have officially resigned, on the recommendation of the oncologists, knowing the road is long and hard. I will miss those i have come to call my friends. But knowing my son needs me and their understanding of that. Makes it easier. 3 months ago i walked out in tears at the horrible new my baby has cancer. Haven't been back since. but its still hard not knowing how or if things will work out.
I need to work on my faith in that god doesn't give us more than he knows we can handle. I've said it before. God has more faith in me than i have in myself.
Theres always gonna be another mountain, im always gonna want to make it move. Always gonna be an uphill battle, sometimes im gonna have to lose. It ain't about how fast i get there, it ain't about what's waiting on the other side. Its the climb.
Please keep us in your prayers. That we can get there. And that we come out stronger for having gone through it.
Long days at the hospital. Korbyn is tired, and angry this evening. I do not blame him. i too have my fits of rage, for what cancer does to my little boy.
Must say though. Even if the boy was born with a full head of dark thick hair. The blonde patches of cute chemo fuzzy are growing on me.
Pretty sure the korbster, is a ladies man. Nurse today told him he was adorable, and her new favorite, korbyn says to her, "look lady i break hearts."
So blunt about it, nice job buddy.
Its bitter sweet that he is so used too his port being acessed, that he doesn't even whine anymore. Bitter because he so used to being jabbed in the chest with a 20gage needle twice a week. Sweet because, he is used to this now. But that last one, definitely bitter as well.
Korbyn is an entertaining little guy. When one the nurses told him she found her new favorite, and called him adorable. The boy says, "i break hearts."
oh what a character.
Some pics from today.
Korbyn received an awesome gift from our neighbor across the street. He is a firefighter , and they brought korbyn a new corvette. Its red like lightening mcqueen. He loves it.
Thank you fireman Dave.
He helped daddy fix it in the garage.
I come down stairs to see what the children are giggling about. I think i interrupted a mini village people concert. We got the construction guy, and the cowgirl. Couldn't find my headress or i would have joined the band.
Those of you that have boys will enjoy this. Korbyn is wearing his cardboard crown, talking about being prince charming, and lumberjack poop. In the same sentence.
He is all boy for sure. Telling me he can't drink milk because it doesnt make him burp.
I was sent the picture from ragnar this weekend where tony carried all the cancer fighting warriors on his back for 200 miles of relay. I was brought to tears, at this gesture. And moved at how something that seems so small could be so big
My thoughts, when someone flings their negative energy and thoughts towards a brave child, who is fighting with more bravery than a lot of understand, it is only because they are threatened by the strength, courage, and bravery of the child. It is because they see their own weaknesses and cowardess.
Children who are fighting cancer teach those around them what brave really is.
To our fellow cancer warriors, we applaud your courage in times of hurt.
I know my own ninja warrior has shown me over the past 13 weeks that even at 3 years old when the fight sometimes seems to much, that he can brave up, and fight on, and as a parent the strength of this little warrior, comforts me, because i know he is in it, to win it.
Stay strong, stay brave, stay courageous.
i am trying to emotionally prepare myself for thursday. The high dose mtx. Makes korbyn so sick and miserable, and as a mommy knowing its coming; i start preparing my psychy in advance. To be able to see my child hurting, knowing all i can be is a cuddle buddy. Knowing i cant take that away from him. Knowing i want to, but thats not Gods way.
I dont really expect people to fully understand the pain i feel in my heart, as my child endures far more than any child ever should. I know everything happens for a reason. I know when Korbyn beats cancers blasts, we will be there to bring strength and hope to others.
This is Michelle, I just didn't log clay out
At. 11:30 last night out of no where I decided to go to church today.
Now those that know me, know this is not normally a decision I would make the night before, especially knowing korbyns numbers are not great, and I don't want him getting sick.
But we did it, leary of the stares from ingnorant people as this child wears his mask, for his health and safety. To my surprise, they were all so kind, and loving. And understanding that this took so much courage for us to be there.
The genuine look in their eyes, at my personal hell, and feeling like somebody maybe finally knows, how hard on so many levels this is for us right now.
Emotionally, socially, financially etc.
When Korbyn was diagnosed the hospital strongly suggested one of us stay home with Korbyn, I was making more money, but Clayton carried the insurance. Decision made, I leave work, to take care of my children.
We cut our monthly income in half, and quadrupled the monthly expenses. Not going to lie, we are scared.
But seeing the love, and concern in our neighbors eyes, for this ninja warrior, and their encouragement to him to keep fighting little guy, my thoughts, and fears, to an extent were settled, and I realized again like the slightly altered interior of korbyns wrist bands says, God can't fail.
tne ninja fighter cut his knew open, and it bled, quite the (I'm not british so it's ok) bloody experience. but did you know, glue is safer for preventing infection? so I now I sing
glue me up, buttercup baby, when I fall on tile,
it cut me up, buttercup baby, and I bled a while.
platelets low, clotting sucks baby, with your platelets low,
so glue me up, buttercup baby when I slice it up.
looking to a positive side of leukemia, when you go to the ER. They don't make you wait, you get in, and too a procedure room, like that.
how's that for a positive soon..
I can understand most of this. except the night out. I have a hard time leaving the kiddoes. for reals. sometimes I just love cuddling with them watching some movie. it's nice, and makes me happy.
http://blog.dana-farber.org/insight/2013/03/five-ways-to-support-families-dealing-with-childhood-cancer/
This is what we did for entertainment the other day, getting chemo.
korbyn had another rough night, I should have bought stock in rockstar, living on a prayer and energy drinks.
my heart was shattering last night, at the fear in korbyns older sisters voice, watching her little brother be so very Ill.
she was crying out about korbyn, and asking if he has to go in an ambulance, she was so scared. after cleaning him up, and getting him settled in bed, all I could do was cry, as I tried to comfort her. it brought it full circle, that cancer doesn't just affect the little ninja warriors, it affects those around them, so deeply. at 5 years old korbyns sister asked me last night if he was going to die, and be with God. of course I told her no, no, I won't let him. I tried to reassure her, the medicine that helps korbyn get rid of the bad ninjas, makes him not feel so good.
my heart hurt seeing the both of them in so much pain, physically, and emotionally.
they are best friends, and fight like cats and dogs, but they always seem to take care of each other.
rough day today. watching my boy, so sick and exhausted, in pain, and feeling helpless.
wanting to take his hurt on me, because it hurts to bad seeing him hurt.
hearing another fighter earned her wing, korbyns dad gashed his head open and we had to get it stitches up, and to top it off, damn ihc billing keeps calling. I know we per you money, I'm doing the best I can I right now.
shoulda not paid the phone bill either, then they wouldn't be calling, hearing me cry on the other line.
dear lonely whore cancer,
don't you have something better to do, then to mess with mama bears youngens?
you are sly and slinky, but guess what whore? korbyn is a master ninja, he is strong, brave, and awesome. and you will always be a lonely whore.
you may think you reign supreme, but master ninjas, are better, they know all the tricks of the ninja art, and let you think you are winning, but alas you are not, because master ninja will come at you, with thunder and lightening. and kick your blasts.
leave the kids alone. do you know what happens to people who mess kids, in the jail system? lets just say they got a lot of mama bears, who will mess you up!!!
korbyn will defeat you, and when he does I will laugh in your face, and for good measure when you are already knocked off your blasts. I will throw a left hook in as well, just to reinforce,.the fact to you, that you are a nasty whore, who is serious need of a beat down.
love korbyns mama bear
living on a rockstar and a prayer, cus that's how we roll.
how would you like a round house kick to the face while I am wearing these bad boys?
we are relaxing today, before blood count check tomorrow. getting ready for another 3x higher potency chemo injection. it's scary, and humbling to think about how close we were to losing this precious little guy. 4 weeks after we started treatment his blasts were 90% cancer. we literally were at only 10% good ninjas. I cry thinking about that day, and having to abruptly change course of treatment.
the thing with acute leukemia, and believe me there ain't nothing cute about it, is it spreads so quickly, and can multiply, and mutate before you even realize it.
that's one of the reasons treating this, is so intensive.
the day the dr. told me korbyn wasn't responding the way they need him too, and we need to fight harder, we need to come at them with bigger badder guns.
I manned a brave face for the world, sputtered my, I'm fines to everyone. I broke down in the bathroom, after they told me, they were finishing up his dna profile, for a bone marrow match, should this new course not bring the sought after results.
painstakingly after an additional 8 weeks, we still aren't under the 5%. we have made progress, and last week we say at 18%.
" I will stand by you, and I will help you through,
when you've done all you can do, and you can't cope,
and I will dry your eyes, and I will fight your fight,
and I will hold you tight, and I won't let him"
I'll be right here to catch you, I won't let you fall.
the bad ninjas have played their dirty card. but we fight on. korbyns crusaders will increase in numbers, and victory will be ours.
this little guy, though small in stature, is big in bravery, and determination. he is strong, and he is the ultimate ninja fighter.
korbyns cute little face, and the back of my head made the front page of the newspaper.
this is one ragnar team to truly cheer on this year. to bring awareness to childhood cancer.
yeah. got our new favorites shirts today. I wear mine tomorrow, wash it, and wear it again monday for treatment day.
bring it on cancer, korbyn has a crew in his corner raring to kick your blasts.
Sometimes I lose my cool, and seem to be so mad,
And I know its hard to see,
But I will always, always love you.
Sometimes I cry, and I know you're scared,
I'm okay even though its hard to see,
But I will always, always love you.
Sometimes I don't understand why,
You have to walk such an unfair hard street,
But I know, you don't walk alone, hand in hand
You walk it with me
God must know what's he's doing, and I know its so hard to see,
He must have something great in store
And he knows the great things you'll be.
Sometimes I don't have the answers,
I don't know how to ease your pain.
But I will always, always love you.
Sometimes I fake a smile to the world,
I can't let them see my tears again.
But I will always, always love you.
Sometimes I don't understand
Why this path, this storm, why this rain,
But I know you are not alone, I walk this path
With you.
God must know what's he's doing, and I know its so hard to see,
He must have something great in store
And he knows the great things you'll be.
Sometimes the sun seems so hidden, behind the dark thickness of clouds.
And I love you
When you need me to be strong, when I don't think I can be
I will because I know sometimes, that's just what you need
Me to be.
God must know what's he's doing, and I know its so hard to see,
He must have something great in store
And he knows the great things you'll be.
God has so many great things in store
And he knows, yes he must know,
Just how great, the great things you'll be.
~Michelle Ricord~ june 2013
it seems like the week has just flown by, and we are again inching closer to the 3x higher potency chemo. this little boy is such a rock star with everything going on. it's amazing, and yet so humbling at the same time. he no longer cries or whines, when he gets poked to access his port, he doesn't fight the medical mask, he has become accustomed to this as part of his life. and it's heart breaking, that children so young and innocent adapt to medical necessities that help save their lives, so easily.
it's so hard to not be able to take your child, to the places that children should allow to be children; as the invisible bad guys are way too harmful. parks, are too dangerous, with germs, and bacteria. play lands, and toy stores.
you become so protective, because the immune system of your child is not protective enough.
you long for the days of laughter, and playing, as those days of childhood are not as common as they once were.
you reach out for someone to try to understand, for someone to hear you.
I'm working on the beginnings of a project, I will deploy for suggestions in a few days.
stay tuned.
please remember orange friday for leukemia awareness. you don't need to deck your self out like a construction cone ( if you do I want a picture though) but wear something orange, to show support to the brave warriors, who have fought and won, are fighting valiantly, who have bravely fought, and now wield their swords for jesus.
god bless.
it's been a very long 11 weeks, yet not so much, when you think about the big picture. 11 weeks into a 3 year now 7 months 2 weeks journey to the finish line.
we have met some amazing people thus far, doctors, nurses, and other parents at different points in their childs journey. we have learned so much, and continue to learn more, and we have laughed, cried, cheered, reminisced, and have only just begun to find who we are. we have gone from thick wavy dark hair, to the awesome mohawk, to the shiny little head, back to slight blonde fuzz.
I have been told quite a few times by people," I can't imagine what you are going through. " and not to sound harsh in anyway, no you can't. not unless you have been there. our kids already have so many normal life challenges, and to add cancer to the mix, is so much more. 11 weeks ago driving to the childrens hospital I had a panic attack, that I felt so much like a heart attack. I couldn't breathe, I was shaky, sweaty, and my chest was full of sharp pains. and I was pinching my arms so hard to wake up from this horrible dream.
40 years ago this type of leukemia was far less survivable. and I thank god daily for modern advanced, and cancer research that give these kids that 85% that is leaps and bounds better than prognosis 40 years ago.
korbyn received his comfy cozy for chemo. this os one of the most awesome ideas I have seen. they zip down for those kids who are leary of taking their shirts off, when it's treatment time.
this will be an anxiety saver for him.
he gets antsy when I have to take his shirt off, for them to access his port, so this awesome shirt, will save a lot of anxiety induced tears. for both of us.
11 weeks ago today, we had our appointment with the orthopedic specialists to find out what was wrong with korbyns leg. 11 weeks ago they ordered the blood draw, that would forever change our lives. 11 weeks ago we started down this long journey, and road, that is turning this brave little 3 year old into the ultimate ninja warrior. we have gained weight with the assist of steroids, and we have lost all of that weight. we have endured 38 rounds of iv, and spinal chemo, 3 transfusions, and numerous bone marrow biopsies, we have gone from 85% cancer blasts, to 90%, finally down to 18%. we have clinically relapsed, and we have fought harder. 11 weeks in to a 175 week battle.
the strength, and bravery of a mere 3 year old, will bring strength to that of his family. korbyns battle is my battle, and I support him until we win. we are in it to win it.
I want to say thank you to the jesse rees foundation for the never ever give up (NEGU) care package with the blanket, pillow case, awesome iv cover bags(my personal favorite) and other little gifts they sent to my little ninja fighter. His face lights up, when he gets a present, and through all the pain, tears, and crap this little boy is going through, seeing him smile, brings happy tears to my eyes.
I don't know if people realize unless you have gone through, but those happy smiles are few and far between, when you are fighting cancer. so for those brief moments, I get my happy silly, funny little boy back. it makes me smile too.
this path we are on, and this fight we are waging, is not something I would wish for anyone to go through.
11 weeks ago, our lives, were flip turned upside down, and we learned we have a new purpose in life. I will be the towel holder ring side, to help korbyn through his fight. I am his mommy, and when you are fighting for your life, sometimes mommy, is just what you need.
it's funny how much your life changes in 10 years. 10 years ago, I never would have been following the trail of cheetoh hand prints across my house with a wet wipe, to find the culprit, and wash their hands, and I never would have been trying to track down all the barbie body parts, to reconstruct the body, because little brother was having fun, and big sister, is having a meltdown. and I wouldn't have asked myself on 3 separate occasions on a sunday morning, if the child never left this room why can't I find lightening mcqueen?
but on the positive side 10 years ago, I didn't get to do all that. call me weird, but I prefer today, to 10 years ago.
I don't know the latest movie to be out, the latest fashion trends, or the hot new book. but I know when curious george is a repeat, most of the disney princesses names, and the characters on cars. but I know my kids, what makes them smile, and when they are sad, what can cheer them up. we may not at times have the latest gidgets, and gadgets, or milk in the fridge, but we have eachother. I have them, and they have me. and sometimes a hug from my princess, or my ninja warrior, can make or break my day.
a few short yet long months ago, I had a career, and life plan. in one phone call my life was forever changed. in one phone call my goals changed. no longer thinking about promotions, or pay raises. in one phone call my life became for my children. for my son, in one phone call my goal became saving my little boys life. my whole sense of importance turned to, what we need to do, to keep this little guy in my life, in dads life, in his sisters life. within 24 hours of that phone call, a power port was surgically placed in korbyns chest, direct route, to his heart, 2 rounds of chemo, a spinal tap, and a bone marrow biopsy. at that time I didn't even know much about the diagnosis.
most children with classification of lymphoblastic leukemia, reach clinical remission early on in treatment, but with any acute diagnosis, you have to keep at it, or it comes back and with a vengeance.
we have been trying to reach clinical remission now, for twice as long, as it typically takes. concerns yes. I know the ratios, and percentages, I know the longer it takes to get the leukemic blasts below a certain percentage, other statistical percentages decrease.
a friend reminded me, korbyn is not a statistic, and those numbers are made to be broken. if this boy, is anything line his mother, and scary enough he is the miniature male version of his mother, he is strong willed. he may have his moments of down times, but he is a fighter.
my life changed from dreams that he was going to be a dr. a lawyer, a race car driver. etc. and he may still very well be, but my dreams now consist of just thanking god for today, and praying for a tomorrow, a next week, a next month, a next year.
Programs - Love of Life (LOL) Foundation
if you haven't registered for korbyn vs. ALL ninjas 5 k event, please do, it will be a lot of fun, and for a good cause, you don't need to be a runner, just come and have a fun time with us.
thank you for your continuous prayers, and we fight these bad ninjas. I feed my strength of that of korbyn. for beinga mere 3 years old this little boy shows me daily what brave, really means.
we have been put on orders to not be more than hour away from the hospital for a few days, as korbyn started higher potency chemo yesterday. he had some a little alarming blood count numbers, but his doc isn't too worried yet.
boy is a fighter, and I know with prayers and faith, we will kick these bad ninjas butts, we have too, losing is not an option.
well after a long day 3x the chemo, korbyn still wanted to go to the zoo with hope kids.
it was the first time his blood counts have been semi okay for a hope kids event. he loved it. he of course is exhausted.
spider man, and his princess.
we were told to not be more than hour away from the hospital for a few days, and to watch the korbster closely. at 3 years old seeing first hand what this little guy had to endure, he is my hero.
blood work today, if we make counts, we get to start the higher potency 3x chemo each time. intensified to rid his tiny little body of the residual disease. it's going to so hard on him, but we need it to work, we need these "bad ninjas" evicted. I don't think he's going to make counts on his own regards, so we hoping to be below the borderline, get the transfusion, and continue on this journey. the "good ninja" counts need to be up to where high potency chemo won't affect his very life, or they can't do it.
brave ninja warrior, fight the good fight little one, we are on your side of the ring, cheering you to victory.
*remember orange fridays tomorrow. wear your orange for leukemia awareness. support the brave warriors who fight for the life we take for granted on a daily basis.
wear orange for korbyn, for zoey, for connor, for landon, for caleb, for jordyn, for all the brave ones.
fight on my friends.
We tell korbyns platelet counts have dropped, his legs are solid red bruising, we are hoping his counts are all lowering so we can get the inevitable transfusion friday prior to chemo, spinal tap, and bone marrow aspiration. If the counts aren't all low enough we get delayed in treatment again. I know the neutrophils, and platelets are low, my fear is in the hematocrits, being borderline, and that's our delay.
We are thankful for all your prayers, I believe they help keep little warrior strong. And we love, and appreciate them.
People keep telling me I'm a very strong woman, I don't know sometimes. God must have more faith in my strength than I do. I know I've mentioned it before but korbyns older sister is on the autism spectrum, god must have some serious faith in my ability as mommy, to trust me with 2 wonderful kids, with challenges.
Keep the faith, and keep holding on. No blood work today, mama bear out... For now. It's pool time.
Working on some awesome cancer mom tan lines.
Korbyn update:
We know his platelets are low, based on the red skin total covering bruises on his legs. He has started limping and complaining of leg pain again. Terrified mommy right now, if those damn bad ninjas, have started reproducing like rabbits again. We may have to start prepping his body for a bone marrow transplant. With high risk leukemia, the probability of clinical still in active treatment relapse, is elevated. Blood count check set for thursday, I'm functioning on no sleep, no food for the past 3 days, no appetite. Worried beyond words right now.
She dropped the phone and burst into tears
The doctor just confirmed her fears
Her husband held it in and held her tight
Cancer don't discriminate or care if you're not even 8.
With a sister who needs you in her life.
she said, I know that you're afraid and I am, too
But you'll never be alone, I promise you
When you're weak, I'll be strong
When you let go, I'll hold on
When you need to cry, I swear that I'll be there to dry your eyes
When you feel lost and scared to death,
Like you can't take one more step
Just take my hand, together we can do it
I'm gonna love you through it.
And when this road gets too long
I'll be the rock you lean on
Just take my hand, together we can do it
I'm gonna love you through it
I'm gonna love you through it
Lyrics borrowed and adapted from martina mcbride.
