Had fun, then fever

Boy, did Mom keep me hopping yesterday-

I went to school, then a visit to Dr Burke at Children's Hospital, then the Zoo, then Occupational therapy, then a big dinner with Grandma and the family.

 

    

    

    

      

Busy day- must have worn me out- then again so many public places in one day is really not good for someone with my history.

I was up all night, fever raging, but this morning, I'm back to a normal temp. Hopefully it was only temporary.

Pray for me and other people with illnesses. It's no fun to be sick in good weather.

Keep my blood drive on your radar- tell your friends who donate- even if you can't. We want to try to get 80 donors this year. We need your help.

Thank you!!!

 

Happy Easter

    

This Easter I'm celebrating new life, and even though my new life is one free from cancer- it's also new life for everyone- if we think about what Easter really means. I love church, always have. Really. It was the only place my parents would take me, other than the hospital, when I was sick. I like the Mass. I like the repetition and the consistency of Mass. I'm lucky that I like church and that even seeing pictures of my church makes me happy. It's my second home- and it is for all people.

Each Easter we celebrate at Mass with family and then are blessed to celebrate with family and friends over lunch.  Easter is a happy time. 

Here's what we did the day before Easter this year- lots of fun preparing for Easter Bunny and for the family meal. I did do some cooking- as always. I also colored eggs and did an egg hunt with Wisconsin Upsidedown and I even dressed up as a bunny with costume pieces from Grandma. 

May you and yours have a joyful day!

 

    

Happy Easter! 

 

 

A Little Luck on St. Patrick's Day

 

It's hard to believe, but cancer for me ended 15 months ago- it's been 15 months since my last chemo dose. It's been 12 months since they took my port out.

I had my last surgery March 17, 2016. My nannu had heart surgery this March 17, 2017. St. Patrick's feast day is a day of celebration for my family, for sure!! 

  LAST YEAR St. Patty's Day

 

This month's visit to the Oncology clinic was monumentally uneventful! I think I spent more time putting donated books away in the borrow-and-take bin than I spent with my favorite doctor and nurse combined. The take home message is- I'm doing great, my numbers look swell and I'm getting heavier and taller, just like healthy kids do. 

 

 

 

 

Mom and I had a really busy day the day of my hospital visit. First, I had school in the morning. Then we went to the Zoo. Then the trip to the MACC Fund clinic.  After that, I had an occupational therapy appointment where I am learning to zip a zipper, button buttons and walk with better balance. I also took a ride on the zip line! 

 

This time of year is so silly in Wisconsin. It's too cold to play outside, and there have been too many months spent indoors to feel like staying inside just one more day. Boy, am I looking forward to a warm spring. It can come any time now. 

I hope your spring is simple and safe. Stay healthy and tell your friends and family you love them. 

Thanks so much- be well!

Much love, Katherine

Also- happy belated World Down Syndrome Day! My friends and family celebrated by wearing silly socks and my school even hosted an all-school assembly! It was a special day! March 21.   

Hope Springs Eternal

 

It's almost time for the groundhog to see his shadow and grant us 6 more weeks of winter- or maybe he'll not see it and we'll get an early spring. Either way, hope is in the air.

 

I went to the oncology clinic last week- hoping to hear nothing- and I did. No news is good news. No rise in my WBC, no drop in my platelets and no sign of cancer coming back. But, it's not true for all of my friends and the reality is- it's not true for all of us. Cancer is just a part of life on Earth and all the hope in the world won't keep it away. So, what's left to do? Well, hope is still a great place to start. We sure hope it won't return for me and we hope it doesn't come to anyone, but mostly we'll just focus on prayer- that's what's left to do- we'll pray- that if it does come, we have the strength to carry on.

We'll pray and hope for all people to find peace with what's been dealt to them and that somehow we can all find a way to handle getting bad news, a bad diagnosis or just plain a perceived short stick. Learning to live with disappointment is the best way to stay truly happy. It sure beats the alternatives. I hear sow ear purses are coming back in style anyway.  (My mom thought that was funny- I don't even use a purse yet!) 

 

          We donated more books- thank you! 

So, that's what's left to do - when handed an extra chromosome, a cancer diagnosis, a speech impediment or a slew of other shorter than desired sticks-- simply carry on. 

So, here's how I've been carrying on. I'm having a great time in school, busy times with family fun, birthdays and board games. I'm cooking all the time. I'm learning to read. I love to do paintings and watch Blues Clues. I'm still busy with my therapies and as much always, I like prayer. I make sure we pray before every meal and I like to pray before bed too.  Mostly now- they are prayers of thanksgiving. I may pray that the groundhog doesn't see his shadow. I kind of want to play in the snow just a little bit more. 

 

Keep yourselves healthy with lots of hand washing this winter. 

God bless and keep praying. 

Happy Valentine's Day, too. 

 

Bell ringing

A full year has come and gone since the end of my cancer treatment. It was supposed to end Thanksgiving day 2015, but I got sick and my body was too broken down to finish the last 8 days of chemo, so they just called Mom and November 18, 2015 was the date I took my last pill. Most families ring the Bell at the clinic to signify the end of treatment right away, but we waited. We waited a whole year and rang it for my 1 year cancer free anniversary. The sound still made us all a little teary eyed.

 

 

 

This Thanksgiving we were thankful for a whole lot! Mostly, for friends and family and the power of prayer. This whole experience taught us how to see the silver lining and the glass as half full. 

To be honest, my glass has been nearly full all year. And we're all so grateful. 

We went on a Make A Wish trip, we had a full summer with swim lessons, SMILES horse riding lessons, a day at the beach and lots of family walks and bike rides. I started school. We did three big fundraising walks this fall with the Make AWish Walk/Run, Children's Hospital Briggs and Al's Walk/Run and the Buddy Walk Wisconsin Upside Down fundraiser for Down Syndrome. Now, we are getting ready for Christmas. 

May you and yours have everything you need this Christmas. The joy of the season isn't in getting everything you wished for, it's in realizing you are happy with everything you already have. 

 

 

 

Thanks again for all of your prayers. There are some kids at my hospital this season, too, some who will be there until next year, some who may never get to ring the bell. I'm going to try to pray for them each time I hear a Christmas bell this season. I'm so blessed I got to ring my bell. Thanks for carrying me through. 

Merry Christmas.

 

 

 

 

 

 

Just like everyone else

 

Sometimes it's hard to be 'just like everyone else.' People try so hard to be different, to stand out, to get a new look, a different tattoo that expresses their originality- but for me- it's pretty magical to be just like everyone else. 

The grass is always greener on the other side, I guess, and although I do love that Dr. Seuss quote- why fit in when you were born to stand out- this week I was simply thrilled to fit in! 

 

I attended my first days of preschool this week and I fit in just fine. I walked typically- kudos to my amazing nanny and physical therapist. I held my pencil well and drew some letters in my name- kudos to my nanny again for working with me so often and to my occupational therapists. I even drew a belly button on a picture of myself. I was able to communicate with my friends, with pretty typical speech thanks to my speech therapists and was able to follow directions, somewhat. My teacher told Mom I was a little stubborn and had my own ideas about what I wanted to do, but that's kind of understandable since I'm the boss at my house.  I ate the snack that was offered, just like the other kids,  and was thrilled everything doesn't taste like metal any more. Chemo is nearly a distant memory- but not for mom. She still remembers all that cancer stuff. 

She stood in the corner just amazed - neither cancer nor my extra chromosome kept these fun and beautiful days from me.  My teacher welcomed me with open arms and the other kids, moms and dads too. The big kids in all the grades welcomed me too with waves and big smiles. Today was a magical day, it was my first solo day, and my academic career has officially begun- and I was excited just like everyone else, healthy, happy and ready to learn. 

I sat in a circle and listened to the stories my teacher told, just like everyone else. We prayed together and played together too. I even used the restroom- alone- mom didn't know I could do that. I wore a pull-up to school, just in case, but I tossed it in the garbage can when I got the chance and I'm proving to myself that I can be just like everyone else.

 

Now, I know I'm a little different. I may have more than a little something extra. This month is Childhood Cancer Awareness Month and I have a cancer history. I have to watch out for side effects of the chemo for years and years to come. Next month is Down syndrome awareness month and we can celebrate my little extra chromosome then. 

But, for now we will celebrate my "more alike than different" status, because in the end we're all God's children- each with our own unique gifts and somethings-extras, but we're all alike in His eyes- worthy of the same love- exactly the same and exactly as bountiful. 

 

Here's to a great school year. May you too know that you're just just like everyone else.