Murphy's Law

You've heard of Murphy's law, right?
If anything can go wrong, it will go wrong. 
Well, yesterday we had a pretty busy clinic day scheduled: 
spinal tap, breathing treatment, chemotherapy and IVIG transfusion. 
Mom and I planned for a long long day at the hospital and you know what?

It followed KATHERINE'S LAW.
If it can go smoothly, it will go smoothly.

Every single thing went on time, as scheduled and with as minimal of unfortunate occurrences as possible. 
I'm a really lucky kid.

  
Is it my exceptionally uplifting demeanor?  Perhaps. 
You know they say attitude is everything and there's just no keeping me down. 
Is it the staff at Children's Hospital of Wisconsin? Are they amazing in every aspect of what they do?
Well, that sure helps! The doctors and nurses that I work with are simply superb. The surgical teams have smiles on their faces all the time and work together so well. It's a really great place to be if you have to be there at all. 
Is it all of the prayers and support from family and friends?
That really makes all the difference! We are so blessed to have so much support and encouragement on this journey. We are happy not to have to fight this fight alone. Thank you, thank you!

Here's what we endured. And I say endured because Mom knows this quote and says it reminds her of me and what I've been through this past 531 days. 

Love bears all things, believes all things, hopes all things, endures all things.
- Corinthians.

1)Spinal tap, which means mom has to take me up to surgery suite and leave me in the hands of an anesthesiologist and surgical team so they can wash my brain and add chemotherapy to my spinal fluid. 

2) Breathing treatment, which means I have to get absolutely restrained, arms and legs pinned down while they administer my medication to my face through a face mask. This activity takes three people because there's just no reasoning with me at age 3 that the respiratory therapist is doing anything in my favor. She pushes that face mask flush against my nose and mouth so that I have no choice but to breath in that medicine. I'm really not much of a fan of this whole activity, but I'm told that this procedure is likely protecting my lungs for a month from a certain kind of pneumonia. I'm glad I'm still little and the screaming, thrashing and wailing and ultimate submission lasts only 7 minutes. The longest 7 minutes of the day. But at least I didn't have an allergic reaction, didn't need albuterol and didn't lose my lunch. 

3) Chemo administration into my port. Vincristine is a medication that goes directly into my blood stream. My nurse has to put on her blue protective lab coat so that she isn't exposed. It is pretty strong stuff, so strong I only get it once every 3 months. Lucky for me it only causes me some mild constipation. Some kids lose their hair over and over again after each dose. Some kids lose the ability to walk, and their feet "flap" at the ground. I'm praying that doesn't happen to me. I only have two Vincristine treatments left. 

4) IVIG transfusion. That's the stuff I've been getting each month that is made of other people's immune fighting cells. It's like taking the fighting cells of 100 people combined. It allows me to use them since my own immune system is too weak to make antibodies to fight off things like colds and viruses and diseases. It's like the benefit of 100 people's vaccinations. My immune system won't be ready for fighting for a long time still. The best option for me is to still stay clear of crowds and away from coughs and germs. So, more home-bound days ahead. 


That was our day. Katherine's Law reigned again: if it can go smoothly, it will go smoothly. We had no traffic on the way in, none on the way home. Found a parking spot. Had no waiting at the pharmacy while Mom got me my new meds for this month of treatment. Steroids to follow the next 5 days. We were the first surgical procedure. In and out so easily. The respiratory therapist actually was scheduled to see me at noon, but came in at 11:30, which was great because my Benadryl kicked in right away and I slept like a baby for 3 hours. I drank my milk and ate my bread when I woke up like a champ. The chemo went in with no trouble and my IVIG was an easy transfusion as well. Some kids have allergic reactions, because that cocktail is really a mix of so many people, but I did just fine. I read my books and played with my ipad and Mom spoiled me a bit and got me a Sesame Street puzzle from the Children's Hospital gift shop. She knows how much I love ELMO and his friends.

I'm practicing saying "three!" Since, I'm 3 years old.

My chariot ride out of the surgery recovery room.

My new puzzle. I'm big enough that I can hold both railings. I'm getting bigger every day!

Bread! Bread! Bread! I'm not a big fan of not having any food for breakfast on a surgery day, so I was famished when they finally let me eat! I love bread!

All bundled up and ready to go home. It was a cold day yesterday, but I wore my flannel jammies and tights all day and bundled up for the ride home. 

I hope the rest of my days go like this. I hope your days so smoothly too. If they start to go not smoothly or you see a few bumps in the road ahead, that's ok too. They can't all go well. Just enjoy each one. We're lucky to have the days we have. We're even luckier, or should I say blessed, to have the days ahead. Each day is a blessing. Not everyone gets a full life or a happy one. I'm going to just try to enjoy the ride I'm on. Today, I'll likely sleep. I can't believe all the stuff they put into my little body yesterday. 

I hope Mom makes me a pizza for lunch!




Have a great day, thanks for your prayers and Happy Valentine's Day.
Love, Katherine

P.S. Mom took me to have a professional photo shoot done. Can you even believe it? Like my life isn't already recorded in microseconds... but boy did we have fun. Anna Urban is the photographer and she did a really great job, if I do say so myself. Check her out if you're in the area. She's amazing. 


Here's my Valentine for you. 

HUG YOUR SISTER

I'm pretty lucky, as you already know.
I have an extra chromosome and not everyone has one of those.
I have a great family and lots of friends who pray for me all the time.
I have great doctors and nurses and I have hardly any side effects from my cancer treatments. I have great teachers and therapists and I'm getting smarter and stronger every day. BUT, do you know what else I have?!?!

I have a really special big sister. Lucky lucky me!

MY SISTER

To me you are an angel in disguise.

 Full of intuition, intelligent, and wise.

Always giving and helping through

Good times and bad.

You are the best friend I've ever had.

If I had one wish it would surely be

To give you as much as you've given to me.

Though I've put our relationship through some cloudy days,

You've been my sunshine in so many ways.

Through trials and tests, right by me

You stood,

And gave me your hand whenever you could.

Thank you so much my sister, my friend

My gratitude for you has no end.

-Leann Stiegman

Here we are playing with her dollies.

I love helping her with homework.

Here we are taking Selfies with Mom.

Look at how much I've changed since this time last year.

I made my sister's favorite food for her last week. Garlic Bread. 

Here's a hairdo Mom gave me in the tub. It's great to have my hair back!

I enjoyed celebrating Catholic Schools Week with my Sibs.

Here I am playing Captain Chemo, shouting "Stop" to the Cancer. 

I'm so proud of my big sister. She and I are pointing to our backs! 

Her T-shirt says NATIONAL GEOGRAPHY BEE. Way to go!

This hug is not contrived. She really loves me this much. And I love her this much too! 

If you have a sister, give her a hug or a call today and tell her how much you love her. Thank your mom and dad too for giving you a sister. Not everyone is as lucky as us! 

As always, thank you for your prayers and if you've got the time, please keep them coming. I only have 299 days left of treatment and then we start the treacherous first of seven years watching for relapse. Sometimes knowing I'm taking chemo meds makes me feel better than the idea of not having something in me helping me fight the cancer. But, that's the road we're on right now. A treacherous road indeed. But, it has been traveled by many before us and knowing you're with me makes me not so scared. Thank you. 

New Year's Resolution

You've heard them all before. Lose weight. Exercise more. Save money. Spend more time with family and friends. Spend less time worrying. Take more trips. Pray more.
You've attempted at least most of them one year or another. Here are mine. Now, I've only been around 3 years, so my experience is limited, but here's what I'm going to focus on. Join me.

1) wash hands
It's really important to wash hands. They are germy and gross and I'm not afraid to touch anything and then just grab my waffle and eat it with dirty hands. Plus, dirty hands can bring an infection home and I can't really fight those battles, so we are all going to wash our hands more. Join me.

2) pray more
So easy. Any time any place and often 6 times during meals. I pray thanksgiving prayers for all that I have, for my family, my good health and minimal side effects, for my teachers, friends, and doctors and nurses. I pray for others too. I like snow and pray for the weather. I love football and pray for the Packers. I pray that I'll grow up one day to be strong, wise and understood. Join me.









3)work hard. I already work hard, but I resolve to work even harder this year. More speech therapy, more physical therapy, more play therapy, more music therapy. Join me in putting 100% in all you do. Nothing in this world is going to come easy for me, and that's ok, because I'm a hard worker. Well, I AM a pretty good dancer. But, even that takes work. Mom says when this cancer thing is behind us and I can be back out in public she's going to sign me up for dance class. I can't wait! But, until then, I'm going to dance my own routines and work hard at all I attempt to do. Join me.


Yesterday was a clinic day. We brought in a ton of books from the book drive in December! Thank you. I read a few. Excellent! They made my day go by quickly. I had breathing treatment, IVIG transfusion of bug fighting cells, and a really nice nap. My nurses were awesome. My Daddy even came to spend the day with Mom and me. The nurse confirmed that the last day of treatment for me was Thanksgiving day itself! Now isn't that perfect! We all have so much to be thankful for, but until then we'll just keep working on our resolutions.







Have a good day.
Thanks for the prayers.





































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Waiting for Christmas

Thanks once again for blood donors! I got another long transfusion today in the clinic. It was uneventful. Thank goodness. It will help me stay protected this cold and flu season. I already have a little cold and need all the extra fighters a girl can have.

We rested and waited today. Much like the waiting we are doing for Christmas. Such joy ahead! The coming of the King!

May you and yours have a marvelous Christmas!!

And one more big Thanks to all of the book donors! I enjoyed some new books and the stock pile won't run out for some time! Thanks.



































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Katherine's Marathon

 

 

 

Dear Friends and Followers of Katherine Mary Grace's ALL journey, Mom here. Usually I write in Katherine's voice, but she's passed out and I hope she'll nap for another 2 hours. Poor kiddo had a really long day of treatment yesterday. All good things, spinal tap to keep the cancer from her brain, breathing treatment to keep the pneumonia away, chemo to keep the cancer from growing in her blood stream and an IVIG infusion which is a cocktail of 100 other people's immune fighters so that she will stay extra protected this cold and flu season. It is amazing the things that are available to her to keep her alive, and well! We are blessed.

But, boy, did we have an exhausting day yesterday. I haven't any inspirational cliché to play with here, except this. These kids are running a marathon. Long long days are just part of this race. 

 Katherine's end date is ONE YEAR AWAY from Thanksgiving.  

We have a lot to be thankful for this year and forgive me for looking ahead, but next year we'll have even MORE to be thankful for.

Today, I'm thankful for you. Thanks for your prayers, your support, your encouragement and your love. Thanks for the books for the book drive and for following Katherine's story here and on Facebook. She's an absolute delight and we're thankful God gave her to us!

Happy Thanksgiving to you and yours!

Here are a few pictures (a few, ha!) from our long day yesterday.

 

Asleep upon early bird arrival at CHW.

Getting measured, learning to stand up tall all by herself like the big 3 year old she is now. 

No stranger to the blood pressure cuff, Katherine puts her arm out and is cooperative. 

 

Upon walking through the clinic we found out that Katherine in her ELMO Costume won the costume contest last month!

Here she is resting before surgery on a new pillow from a fellow fighter, Emma, and her family. THANKS!

Lots of down time, so Katherine read books and played with her new IPad mini from Gamerosity!

 Post surgery, Katherine sleeps. She had a spinal tap mid morning, by an all women team of doctors and nurses.

After surgery Katherine woke up a little. I couldn't get her to eat much before the next set of events, breathing treatments and infusion, but we did play a little with my phone, made funny faces and took some pictures, just us two! 

 

 Finally she was ready to eat a piece of bread.

 At this point in the evening, Katherine was a bit fed up with me and my camera. I can't say I blame her. This poor kid likely has more electronic data recording her life than any other human on this planet.

 When it was check out time, the amazing Bonnie gave Katherine a present for being the Halloween contest winner and a birthday present. I'm thinking not every hospital does this. We love CHW and Bonnie is one of our favorite nurses! (BTW, they are all our favorite nurses.)

 Here are the others! From the top to the bottom, this team is the best! Any ideas on what we should get them for Christmas? I'd love to shower them each with something special. They so deserve it for the work they do, all year long! We are so blessed! Seriously, nurses, what's the best gift you've ever gotten? Tasty treats? Self pampering supplies? Ideas welcome.

Then the end of the day came, the sun had set, and we were on our way home. Katherine and I picked up her new meds for this round of chemo, took showers, put on our pajamas and ate some pizza. (Still her favorite food.)

Once again, here's to you. Thanks for your prayers and encouragement. And, here's to my champion, Katherine Mary Grace, you amaze me! Love, your mommy