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

Enjoy the Ride!

A faith journey by Giovanna Moses.



Four years ago I never would have voluntarily sat next to someone 'retarded.' (You can't say that word any more, you can't hardly find it in print and activists are trying to erase it from vernacular) but 4 years ago it existed and I was afraid of it. I didn't know anyone retarded and I didn't understand the strange sounds and moans they made in the grocery store. I'm not sure of what I was afraid of, but I didn't make nice smiles at them or their parents. I'd look away.

But then my pregnancy happened and I was handed a prenatal diagnosis that we MIGHT have a baby with Down Syndrome. That shook me to the core. I prayed like I've never prayed before. And like you often hear, in times of trouble people turn to God. Great. I turned to him. I pleaded and I wanted what I wanted. I wanted a healthy baby, like everyone wants. As long as it's healthy, everyone says, as long as it's healthy. I'm certain you prayed that prayer too, if you use prayer and talk to God. And yet, I wasn't mature enough in my relationship with God to know that He doesn't always give you what you want, that you can ask and ask, but that he may have different plans. Up to this point in my life, I prayed often, surely, but our goals were always aligned. Sure I believed God had a plan for me, and I had read that Footprints In The Sand poem enough times to have it memorized. I had it hanging on my wall since adolescence. Somehow during my pregnancy I was so focused on what I wanted, and more so what I didn't want, that I failed to ask God what He wanted for my life. What did He have planned? And more so would I have the strength to make it through that? Would He have to carry me, and would He please because I just didn't think I could do it alone? No, I just prayed an anti prayer, a don't-let-this-happen prayer, a let-it-happen-to-other-stronger-bigger-hearted-less-selfish-than-me prayer. But, God had different plans and Katherine was born, to me, imperfect me, unstrengthed me. I hadn't asked for strength, even though that's what I needed most, but you know what, my friends had prayed for me. The small handful of friends I told about this fear of mine prayed for my strength, I know it. And I thank you. The first few months of accepting God's plan were hard for me. So hard! Why had He abandoned me? Sure, you can pray to God, but it's wasted effort, I'd say. I can't believe how jaded and immature in my faith I still was. I wanted things my way, like a child stomping her foot, shaking my hands at Heaven. I tried, though, to mother, to parent. I loved my child and our love grew. At nine months, I was better some, she was behind in all of typical milestones, but she was making some normal progressions, just late. At her first birthday, I cried more, still in shock that this burden was mine, but I was surrounded by friends who held me up every step of the way. We were loved and it was going to be ok. I still didn't understand God's plan for me yet.

Then came Katherine's Cancer diagnosis, and oddly enough, I didn't curse the heavens this time. There wasn't time. Treatment started immediately and I got to spend 35 days straight with my little girl in the hospital and I loved it. I prayed for her doctors, for her tolerance of the medicines, for the other kids in the unit. But I never asked, "Why is this happening?" I prayed that she would live, sure, but even that struck me as odd because I had prayed so often that she not be the person that she was. Now, I wanted her to live?! Just as she is?! So, I blogged about her journey in her voice and through the course of that year, I asked other people to pray for her too. Then, I was glimpsing it. Katherine was bringing people to God. She was a tool He was using to bring people to Him. Her extra chromosome had nothing to do with me. My wants, my fears, my tearful prayers, were lost because God had a bigger plan. What are we here for anyway? It isn't so that we can live, love, learn and eventually hope to pay off our education, cars and mortgage. It's to glorify God. We are here to use the gifts He has given us to glorify Him. How short sighted I had been. When I realized that she was His instrument, I finally was able to embrace her with my whole heart, feeling so lucky and so blessed.

There is one more tier to my personal growth and faith journey and it really echoes what I've done so far and that is acceptance. Yesterday, I was invited to lunch with the Archbishop of Milwaukee, Archbishop Jerome Listecki. He hosted a lunch honoring the 10 most influential people of 2014. How I got chosen, I'll never know. I guess "Top 9" just sounds too silly as a headline for the Catholic Herald. I had thrown myself a blood drive birthday party to collect blood for people in need, for kids like Katherine and all the kids at Childrens Hospital of Wisconsin. The inspirational part of my story was Katherine, obviously, that God was using her to spread the good news, to bring people to prayer and to smile when there are trials ahead. The other honorees are simply amazing human beings. We met people who have faced real adversity without losing their faith and people who are so selflessly dedicated to service and giving to others. Here's where my a-ha moment happened, I chose to sit with Nicholas, a high school student who played Jesus in the live action Stations of the Cross at his church last year. Nick has a rare form of cerebral palsy and is non verbal. That's not to say he doesn't communicate and isn't brilliant. He communicates with his eyes, his head and he's a 4.0 student. He is a happy kid; he's just not a typical kid. He is wheel chair bound. He has jerky arm movements, dramatic face contortions and excessive drooling, but he's just as much God's creation as you and me and Katherine Mary Grace. He too has brought people to God. His mother said that there wasn't a dry eye in the church as Nick cried out to God. I can only imagine. Over the course of a meal, I got to talk to Nick's parents and they are remarkable people. They were honored to be 'riding Nick's coattails once again!' Apparently he's quite a celebrity. And rightly so. We are all God's children. We are all worthy of life and respect and love. And even though our lives may not play out the way we had initially planned, there's no joy in complaining about it. The real joy is in buckling up and enjoying the ride. Ultimately, God wants us to be happy. He wants us to glorify Him and enjoy the gifts He's given to us. It has taken me 40 full years to learn this lesson and that in itself is a gift worth sharing. Thanks for sharing it with me. If interested, you can celebrate my birthday with me again this year, as I've decided to host another blood drive and bone marrow match drive in June. Watch for details and I hope to see you there.

Enjoy the ride!!!

Location:Enjoy the ride!