Top of the World

Check this out.









Two of Daddy's friends from college dedicated their hike to me. Dad was invited to go, but stayed home to be with me, in case I needed him. Last year about this time, I had a rocky few weeks, turned blue twice and I needed three blood transfusions. This cancer treatment is tricky, things can sometimes turn on a dime. I wish you could have gone to hang with your friends, Dad. Thanks for being the self sacrificing guy you are. You're one in a million, like these guys who decided to dedicate their hike to me. What heroes, all three of you.





AMGD,

Katherine Mary Grace





From Daddy's Friend, Paul Schmidt:



Today, Billy Zielinski and I hiked up Grays Peak- the tallest point on the continental divide and over 14k feet. Earlier, we had invited our college buddy Cevin Moses, but he couldn't because his adorable 3 yr old daughter has cancer. Life isn't fair. And while our hike hurt, it's nothing compared to that. Driving out here Billy and I decided to dedicate it Katherine. So that adorable little girl can be on top of the world, at least for a moment.

Location:Deer Run,Delavan town,United States

Photos of Katherine Mary Grace on the Jesus' Stone of Embalming, looking for healing. Photo taken by Father Angel Anaya on recent pilgrimage to Holy Land 2015.

Counting days

Now this is weird.
Mom doesn't want cancer treatment to be over. The end is near, like still way over 100 days away, but Mom already has started freaking out about being out of the ever comforting arms of our oncology team. Maybe it's the loss of notoriety, or the fact that she can't use cancer as an excuse for not taking me anywhere. This journey has been tough for me, tons of pokes (I get another blood draw today), spinal taps, drugs and poisons daily, food tasting awful, sleepy feeling, nausea, constipation, hair loss, spots, mouth sores, etc, but I've handled it all. Mom, on the other hand, well her journey has been different and I guess she's afraid of what happens when it's all over.

Well, Mom, here's the thing. It's never all over. In addition to waiting and checking monthly, then every other month, then every third month, then, well you get it, to see if my cancer comes back... There are kids every day who are getting diagnosed with cancer. If you feel like you just don't know what to do when I ring that bell... Let me tell you, it'll be ok.

I will ring the bell, sometime this fall. We will have a big party. Big! And then, with God willing, my life will move forward, we will be able to focus on my other big hurdles, like being differently-abled than other kids, we will work hard on my speech, my eating, my rebounding immune system and in our free time we can start attending these amazing fund raising efforts by those who can't forget the Childhood Cancer fight.

It'll be alright. For now, let's just focus on the now. On remembering to give me my daily chemo, hand washing, floor washing, not hanging out with sick people, and eating right. Let's have a good summer and we can start our countdown again at day 100, yes that's just 62 days away!

Springtime 2015 VIDEO

What an amazing spring.
Mom has been really busy.
Thankfully people came out in good numbers for her birthday blood drive and she was able to really celebrate! Seventy people locally and 14 people country wide donated in early JUNE for her, for me and that's just amazing. 
THANK YOU DONORS!

This spring we've had volleyball, baseball, laser tag, bike rides, and a lot of art work that came home as the big kids wrap up another school year. 

Check it all out in this family video of photographs.

I'm featured last...
I'm that something special they're singing about in the song, I think. 

Thanks for following my story and for your continued prayers!
GOD BLESS YOU!

I only have 168 days of cancer treatment left! Only 168 days. 


Click here to view this video

Blood Drive Plea

Blood cancers are no fun, even though my daughter seems to smile through it all. Blood doesn't come from a store or a warehouse, nor can it be manufactured. It has to be given from person to person. Increasing production is only made by increasing hype about upcoming blood drives. Please be that someone who saves a life! Come to my bday blood drive, Monday June 1, at the American Legion, Delavan, 2 to 7pm. Or donate in your own community and post a pic! Thank you!!! See below for link to make an appointment or walk in. Please.

































Www.bcw.edu/Delavan

Child Labor Laws

Hi!

It's me again, Katherine Mary Grace, hired out child labor as poster child for Down Syndrome and Childhood Cancer. Yep, my work here on this earth is not yet done. So far, I've successfully turned my mom around (she was once scared of my extra special chromosome) and Childhood Cancer is benefitting from my cheeky grins, hopefully raising awareness that every three minutes some kid is getting diagnosed with some kind of cancer and more money is desperately needed for cancer research since only 4% of the federal cancer research budget goes toward childhood cancer research. I'm not alone in tooting this horn. My main man, and likely yours, Aaron Rodgers just donated $50,000 to the MACC fund for just this research! Way to go Aaron! You're the best. The MACC fund works right here in my backyard at my hospital, Children's Hospital of Milwaukee. For more news on them and him, check out this link.



MACC FUND GIFT FROM ARRON RODGERS

Back to my workload...

This month my Mom has me signed up to do a little more promotion work about the importance of Blood Donations. As you may recall, last year Mom threw herself a 40th birthday party and used my adorable bald mugshot to get 40 people to come donate blood. It worked and 81 people came out to donate, 58 bags were collected locally. Worldwide, people sent in pictures of themselves donating and 74 bags total were collected!! 74 bags, and she was born in 1974. Coincidence!?! I think not, God has a hand in things this cool! Well, in all things really, but, back to the blood drive stuff.

This year Mom is hosting another blood drive/birthday party for herself. June 1, 2015. New location, bigger goal: 80 bags.






80 bags, geez, Mom, that's a bit greedy, isn't it? But, if you don't set a goal, you'll surely never get there. Each bag of blood saves three lives and I've benefitted directly from eleven donors. Friends of mine have used much more. Probably friends of yours have too. There's nothing more satisfying than saving a life. Sure, Eating one of Nanna's Sloppy Joe's is a close second, but why not come to the American Legion Hall in town, June 1, from 2 pm to 7 pm and do both!?!


Donate blood, eat a Sloppy Joe, then...

Get ready for it, this part is new...


Learn about and sign up to be on the Be The Match Bone Marrow Registry.





Bone Marrow Registry, what's that ? If you're looking for something really gratifying, try being the one person who has the unique gift of donating bone marrow to someone who will die without it. The registry is vast, but finding a needle in a haystack, the perfect match, is near impossible for some people. Your genetics could be just the right set of chromosomes to give someone dying of a blood cancer like mine a second chance at life.


Getting on the registry is as easy as a cheek swab at the birthday party, then a true commitment to saying YES if you ever get the call to donate. That's it. You have to be between the age of 18 and 44. (Side note: dear old Mom doesn't have that many years left to get on the registry. Ha! But she's doing it anyway!)


If you're actually called, the cells are harvested and you are back to your normal life in just a few days. But, it's a new 'normal' life, one where you know you were able to give something no one else on this planet could give. Good luck getting your big head into your car on the way home! That inflated sense of self worth may never leave you, and rightly so!

So, consider donating!

Come out to the birthday party!!

Sign up to be on the BE THE MATCH registry and start shopping for a new car, a convertible. You'll need it!

Thanks so much. This world is a better place because you are in it! Without you, my family couldn't handle the challenges that face us. But, with you, and your willingness to smile at my adorable underbite/ sidebite grin, my ever-improving speech and my chemo countdown (197 days, baby) we are able to face the days ahead. Mom will probably always keep me poster-childing for something...

If your spouse (or parents) won't authorize that convertible, I do do contract work. Let me know.

Thank you. From the bottom of my heart. Thank you!








Check it out! The remodeling is done at my hospital!

Checking in for surgery last week.









Post op snooze.









Post op painting, with serious focus.









Post op trip to the zoo!























Post op, photo op with my mommy.







- Posted using BlogPress from my iPhone

Great Day at Clinic

I start the fifth cycle of maintenance next month. This month we just checked in and discussed treatment doses, wore my dress for a cape while waiting for my nurses, flushed my port, ate some Cheerios and drank some milk (my eating hiatus is over,) played some IPad alphabet games, had a breathing treatment, visited Emma Paulson and the Flashes of Hope team and then walked very independently through the halls of the hospital waving to everyone.

All in all, ALL didn't have the upper hand today! Take that Cancer.



Blood pressure and oximetry





I'm getting taller!





Here's a Cheerio for you!









Wearing my dress as a cape while we wait for my awesome nurse to flush my port. No IV chemo this week!





I'm a superhero with big Muscles!





Playing an ABC game on my IPad.





Walking the long long skywalk all by myself. My newest and first sentence: "No, me do it!"

They prayed for me to start taking and that I'd grow up to be independent someday. I bet they didn't think it start at the ripe old age of three!!!

Have a great day! Thanks for your prayers!

Love, Katherine!

No One Fights Alone!

When I was first diagnosed with ALL in August 2013, my big brother and sister were getting ready to head back to school. To teach their friends and teachers about what we were going through, what leukemia was and to teach my brother and sister that they were not alone it this journey,  we were able to buy 150 NO ONE FIGHTS ALONE bracelets with money from a friend who spotted us some extra cash during this hard time. We handed out those bracelets and we were proud to see them on wrists around town, on teachers, and friends. It really was neat. The truth of the matter is that when you're fighting the FIGHT OF YOUR LIFE, it's comforting to realize that you aren't fighting it alone. But that is also the heart break, because in addition to the people who are fighting for you, praying for you and giving you money for bracelets or gasoline those first few months, you end up meeting other people who are also FIGHTING FOR THEIR LIVES! No one fights alone, sure, but there are others who are fighting too. This cancer thing leaves no one out. I've come to believe I'm not all that special. Everyone's got it or may get it and we need to so something about it...


ENTER OUR AWESOME FIRST NURSE PRACTITIONER, MOLLY BRICKLER!

She was super sweet, helpful, and even knew friends of my mom. We connected right away and her spirit lifted ours during our first 35 day stay at Children's Hospital of Wisconsin. What we didn't know is that HER HUSBAND was diagnosed with cancer just a few months before I was! SEE? It's everywhere. Well, Molly is trying to raise $50,000 for the Leukemia and Lymphoma Society and we want to help her. Please please check out her blog. As of yet, I haven't done any fundraising, and if you were thinking to yourself... what can I do to help dear sweet ole me? WELL, this is it! Now, I did really petition hard to get folks out to my mom's blood drive last summer... and GUESS WHAT? She's doing another one for her next birthday. That girl has something about throwing herself birthday parties, but that's not until JUNE; Please watch for details.

http://mollybrickler.blogspot.com/


Until then, Please read Molly's blog and click the links, and help our awesome, NP and FRIEND get to the $50,000 mark. Once she gets there - she'll get to decide how the money is spent - and she is educated enough to know just what to do with it. RESEARCH, RESEARCH, RESEARCH! Remember my awesome extra chromosome? Well, research with blood from kids like me has helped to make the connection... the more connections we make, maybe we can really make a difference. BUT, it takes a lot more than pretty faces and sweet stories. It takes moo-la. Please help NP Molly, please read her story, her husband's story, the story of sweet Sammy, my next door neighbor in the hospital, who sadly lost his fight. Read them and decide to donate. Thank you so much for your time, your heart, your donation if you can and your prayers.


http://mollybrickler.blogspot.com/


http://www.mwoy.org/pages/wi/wi15/mbrickler


THANK YOU!

Love, Katherine