Great day at a Great Hospital

Once again, I had a great day at Children's Hospital of Wisconsin. Everything went well for me. On schedule, as expected and without complication.

Yes, my chemo isn't working as well as it once was, which means my oncologist had to increase my daily home medication dose, but I kind of expected that... I've been feeling great and have been learning lots this summer. So, for my last 4 months of treatment they're going to up my meds.





Checking my blood pressure.





Goofy posing before surgery. My extra chromosome makes me extra flexible.





Talking post-op with my new friend, Ralph the giraffe.





Feeding Ralph.





Pretending my bread crust was a mustache.


Today I had my second to last spinal tap. Pretty awesome. I can't believe I'm saying this, but I think I'm going to miss the sweet OR team and recovery nursing staff. They are the best and so gentle with me as I come out of my anesthesia sleep. They make bravery poster awards for me and are so kind.




Getting Ralph ready for the OR.





Ralph is ready for surgery!





Post op, I usually feel a bit sleepy. Here I am on my chariot ride through the hospital.



Today I also got to visit the Day Hospital side of the MACC Fund Center. They really thought about us kids when redesigning the space. Today Mom and I painted and colored with markers. Fun!













When I got home, I went on a bike ride with Mom and Dad! Mom missed her early morning mile because I had to be in the hospital so early. Are you running, walking or biking with her? Only 119 days left!!





Just me and Mom and Dad. My sibling are visiting Gran and Grandpa in Texas.




Here's a pretty Wisconsin flower bed at Mom's friends' house. We popped in for a visit after we left the hospital.

Everywhere I look things are blooming and I've got lots of reasons to smile. Mostly I smile because I have so many friends praying for me. I've only got 4 months left of treatment. What a ride. It doesn't really really end in 4 months as all cancer patients know, but the chemo does, and that's something!

Hope you have a great day, see lots of flowers in your neck of the woods and that everything goes your way too!

Thank you for your prayers and miles!!

And! Check this out... There were no books for kids my age today at the MACC Fund, but thanks to you, Mom restocked the book box while I was in surgery! Thank you book donors!!













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Fun in the Summertime

HOT fun in the summer time...

Remember that song?

It hasn't been a very HOT July, well not yet, anyway. The word HOT has two meanings for my family and me - in addition to temperature hot, it also is an acronym for the Hematology, Oncology and Transplant Unit at Children's Hospital of Wisconsin.

They're responsible for saving my life - and for keeping me on the right path for bigger and better things. We love our HOT unit and all the people who make it great, our support staff, nursing staff, doctors and nurses. They are really Amazing folks! We are so blessed.

I had an appointment on July 2 in the HOT Clinic.

I brought in some books to donate to the book box for kids to read while in clinic. THANK YOU for donating your books for me to take in. They really do make a difference and we read books every time we go to the hospital. THANK YOU!

I got weighed.

I got measured. I'm getting taller!

I read a new book to my puppet monkey. 

 

We had a pretty sweet visit with my nurse practitioner. I was in and outta there in record time. Mom even had time to take me to the ZOO afterward! I was told that my counts have been creeping up a bit and my chemotherapy dose has to be increased. That has Mom and Dad a bit scared a) because last year at this time I got super sick from the dose being too strong for my body and I needed a bunch of transfusions and b)our sweet friend just had an "upping" of her meds and lost all of her hair AGAIN. Oh, I know that losing hair is just part of the package deal with cancer killing drugs, but I'd really rather keep my mop. Mom is having way too much fun making pigtails and firework ponytails on my head. We'll see what happens. So far I've only taken one stronger dose. The other thing that our nurse did, was to reduce how often I get my blood drawn. On one hand, yahoo, who likes to get their blood drawn every two weeks? Not me, but that's what I've been doing for a whole year! But, we're going to go down to checking my counts only monthly. YIKES! I sure hope I don't bottom out next week. I'll just keep eating right, sleeping right and taking my meds. I'll just keep taking it one day at a time and walking one mile at a time.

Speaking of which, my mom started this walking club. She needs to work out more, and that's just her thing, but with ME as her inspiration, committing to work out has gotten a little bit easier. She's taken the "walk in someone else's shoes" cliché to the next level. Knowing that the road for kids and families with cancer walk isn't easy, she's committed to walking one mile for every day left of my cancer journey. She's invited her friends and wants to invite you to walk along with her. So, when she started I only had 142 days left of cancer treatment. She's going to walk 142 miles in all, one mile each day until THANKSGIVNG DAY! So far she hasn't missed one. Want to join her? Just walk one mile in your own neighborhood and if you think you don't much feel like it, remember a)it's good for you and b)even when we don't feel like it, us kids with cancer have to fight just a little bit every day - some kids have to fight a lot. So, get up and go and walk with us! Let's see if we together can get to the end, healthier and happier and really ready to celebrate THANKSGIVING!

 

 

(It is incredibly cool that my last cancer chemotherapy pill is scheduled to be taken on Thanksgiving day, I wish I was making that up, but that's how God planned it. According to the Down Syndrome Arm of the Treatment Trial I am on, my last day is X number of days after the end of delayed intensification, I think, and that just happens to be November 26, 2015.  In my family we don't believe in "just happens" or coincidences - we believe in GOD-incidences. We are giving big props and thanksgiving to the BIG MAN upstairs!)

So, all that being said - we're just taking it one day at a time, one mile at a time. Here are some pictures of my July so far.

       I saw my nurse practitioner on July 2.

 

 

 

 

     I had a lovely 4th of July.

 

    I played Mr. Potato Head with my cousin, Marcella.

 

 

 

I started my swimming lessons for the summer.

 I love my teacher and like to think I can swim all my "ME SELF."

 

 

 

 

 I visited with some friends and played "check up."

 

 

 

   I'm very active in Mom's garden.

 

 

I enjoyed some really great U12 baseball, watching my brother and his remarkable team play some great ball. Yes, I actually wore my winter hat to the ball field one day. Yikes.

 

 

 

I plan to relax some and do some more of the same for the rest of the summer, hoping my counts don't bottom out too much with my increased meds. As always, your prayers are welcome here.

Thank you in advance.

 

I hope you're able to relax some too this summer and maybe get up and walk if you're so inclined, only 137 miles to go at this point. 137 days!

 

 

Mommy spoiled me a bit, and bought me a stuffed Rhinoceros plush toy at the ZOO.

Rhinos are my favorite animal. My next hospital visit will be a long one. I have a spinal tap scheduled and those spinal tap days usually take a lot out of me. Only two more spinal taps left.

 The end really is in sight. Thanks for following my blog and for taking this long journey with me. Thank you again for your prayers.

 

 

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.







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