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. 

Let Freedom Ring

Happy 4th of July!

 

Happy Freedom!

I just had my 8th month post-chemo oncology appointment. It's been eight months since Thanksgiving- it's hard to believe.

During the winter, Mom kept me under wraps and still away from the public eye (and germs) until my Make A Wish trip to Orlando, Florida. Once we made it through that, Mom and Dad realized (finally) that the worst may actually be behind us and it was safe now for me to get out some and it would actually be to my detriment to keep me inside and hidden forever.

They realized there's a lot of life to live and I had best catch up- no more hiding my light under a bushel- no!

I'm free, Baby. Watch out world- they're setting me free!!! Happy Independence Day to me!!!!

So, really, since that time of deciding it's ok for me to get out and involved in things, I've been busy, busy, busy, and not too free at all. Ha! 

First order of business- 

I started going back to church! I stay in the pew and say my alleluias with my cousins and I like it! I got to take a family picture with my special prayer buddy, Fr. Angel, on a day my siblings served at Mass. He and this whole parish held me in their hearts when I was unwell and I can't ever thank them enough. It's been great going to church as a family now and seeing my church family. Truly truly faith has had so much to do with my success in beating this disease. I can't say enough about the power of prayer.  I still haven't mastered the Our Father, I say "give us our presents" instead of "forgive us our trespasses." But mom lets it slide because I have indeed been given so many presents from God- each day is a gift when you're a cancer survivor- so it makes sense. I'll keep praying. You can keep it up too. Sometimes just praying for understanding is helpful, even if you don't end up getting what you want. If you look hard enough, you'll see all the presents God has given you. Mine are almost too numerous to count.

 

Second order of business- therapy! I go to speech therapy, occupational therapy, physical therapy and Hippo Therapy (which is actually with horses not hippopotamuses.) Lots of learning going on to prepare me for school in the fall. Mom and Dad are hoping I'll be able to be mainstreamed and in school with typical kids. I act pretty typical and even though I'm a bit delayed in a lot of what I can do, I am proving I can do most things, on my own timeline. My newest sentence is this, and it's a long and clear one, even people who don't normally talk to me can understand my words, "I know I can do it, by myself!" I say it often and it applies to just about everything. 

 

 

Third order of business, summer fun! Mom signed me up for T-ball. I'm learning to hit the ball and run the bases. During my most recent game I skipped first base all together and ran straight to second base after hitting the ball. It wasn't quite what people expected, but I made it there with my adorable little run and effectively stole first. I like keeping people on their toes.  My siblings are my coaches and it's been lots of fun. 

 

 

 

Mom also signed me up for swimming lessons. I've got no fear of jumping into the water and I just started using my arms to reach and my legs to kick. I'm not all that good at blowing bubbles yet, but at least I'm not drinking the pool water. I've got a patient coach and am getting stronger all the time. 

 

Last order of business, cooking. It really goes back to this. Give a man a fish and you feed him for  a day, teach a man to fish and you feed him for a lifetime.  Mom has used cooking as a teaching tool since I said one of my first words, "cup" in reference to a measuring cup. We used it as speech therapy as I talk though the recipes, occupational therapy with all of the twisting and stirring and even as physical therapy because of the core strength building I do standing on a chair while cooking with  no other support. I have been doing a lot of cooking this summer and my interest in food has increased as my chemo-tongue has gone away- meaning food tastes like food again. Last night I even ate cauliflower. Recently I've been making cookies for my NANNA who is going through her own physical therapy, after she broke her leg earlier this summer.  She's been a real trooper working on building her core strength, just like me.

 

 

This cancer journey for me is nearly through, as our doctor said today. He is planning on transferring us from the cancer clinic to the survivorship clinic and soon we will only be going into the hospital once every two months instead of monthly. As our visits lessen, we are still trying to remember those in need. We brought in books for the other kids today (thank you donors!!) and we are so happy that Mom's blood drive turned out so well (thank you donors!!) We have learned that as individuals we are capable of many things indeed, but as a group of individuals, much like those who fought for America's independence, we can make a much bigger difference working together, giving together, praying together. 

 

Thank you, as always, for your prayers and encouragement. Thank you for giving books and giving blood. Here's hoping you enjoy your freedom, freedom to work hard and learn and make changes in your life to be the best you that you can be. I am doing the same. This life isn't a gimme- it's a gift! Enjoy your presents and may you enjoy your freedom.

Today after the trip to the hospital I went to the Zoo. 

Here I am pretending to be an elephant.

 

I absolutely love the train at the Zoo too. 

 

Mark Your Calendars

 

My After-Cancer Party is scheduled for June 6, 2016.

It's the same day as my mom's birthday Blood Drive- but since my being done with cancer WAY outranks her birthday- we changed the name of her annual birthday blood drive to Katherine's After-Cancer Blood Drive. 

Actually- this party is all about birthdays- for her, sure, but for me too- as everyone who has had cancer and everyone who has known someone with cancer- birthdays matter! 

I get to have more of them- because I beat cancer...because my doctors and nurses made the right decisions all along the way... because people gave of themselves and donated blood so that I may live when my body wasn't able to make enough blood to keep me healthy and alive! 

Seriously, I know Mom was joking when she called me her little vampire, mostly because I was so pale when I was undergoing treatment- but I needed 8 blood transfusions to survive during my two years on chemotherapy, and without it I would not have made it.  One of my very favorite cancer friends, now a survivor, needed 27 units!! 

So, we are going to host another birthday blood drive- an After-Cancer Blood Drive.  Mom set the bar pretty high and wants to get 100 donors! 100 donors? Geez! The first year was 40, the second 80, and this year 100.  We know that summertime is a time when the blood supply at blood banks is dangerously low.  So, we are hosting this blood drive as a gift back to our community for all of the support we received and all of the prayers said for me during the last two and a half years.

Alone, we can only donate three bags of blood- and that's if Mom is really good and eats all of her spinach all month long- her hemoglobin runs low and she typically doesn't qualify to donate - she wasn't able to donate the past two years. Dad, he's good for a double! Thanks Dad! 

So, that's where you come in- we need donors to make our gift substantial and meet our goal. Please consider donating. Please come out and join us. Please bring a friend. If you can't donate- talk it up and encourage someone to come who can donate blood. Mom is going to decorate the American Legion hall and we will have food and cookies. Come join the fun! 

  

Plus, the BE THE MATCH people will be there again this year- they collect data from people who want to be on the bone marrow registry- talk about the opportunity to save a life! Not everyone gets called to be a bone marrow donor- but if your DNA matches that of someone in need- this is the opportunity of a lifetime- two lifetimes! 

We are pretty excited about the day- less than a month away now. You can just walk in and donate, but Mom is trying to get people to sign up on-line or with her appointment schedule so that there is good flow and not a lot of waiting to donate. The whole process takes about an hour- but if you want to hang with me for a bit- you may be there a little longer.

Yes- Mom says I can come this year to the party!! So put this on your calendar and plan to party with me and my family! June 6, 2016. 

Thank you for your prayers, your kind hearts and giving of yourself. Hope to see you there! 

 

Here I am at Childrens Hospital of Wisconsin today at the Herma Heart Center- getting my post treatment ECHO. Some chemotherapy is really tough on the heart, and we were just checking to make sure that  mine is fine. We will know more soon. 

 

This is me and my dear nurse practitioner hanging up my blood drive poster! Mom needs 100 donors... Even remote donors count! If you donate in a separate location for this event- tell my mom and she'll tally your donation!! Thank you!!

The first donor?!? My nurse! She donated on Monday. I was a bit grumpy in this pic- sorry.

 

  

Please donate and let us know! You can save three lives with each donation! Hope to see you June 6, 2016!

 

WISHES DO COME TRUE

I was the recipient of a MAKE A WISH TRIP via MAKE A WISH WISCONSIN and no detail was overlooked. The MAKE A WISH team made us all feel like superstars and we had a vacation beyond compare. We had time to reconnect as a family, make memories for a lifetime and had a chance to put cancer behind us and focus on living out the rest of our lives, remembering the generosity of others and challenging ourselves to serve as others have served us.

My wish was to meet Minnie Mouse, but by that point in the week, I was suffering from some pretty serious fear of crowds and was really clingy to Dad. Other than my refusal to walk and a little sun screen in my eyes on Tuesday, we had a perfect week. I even got to meet Barney, the big purple dinosaur, one of my favorite singers of children nursery rhymes and got to watch his show with a new friend who has Down Syndrome just like me!

Consider giving to MAKE A WISH if you ever get the chance. We stayed at a resort for kids with life threatening illnesses and met a lot of great people. Some kids will not make it. For some this vacation was the last vacation for their family as a whole. It was a pretty emotional week, we had some big time highs and a few sweet moments as we realized how blessed we are.

Here are some of the highlights. Thank you again for your prayers for me and for all kids with childhood cancer. Thanks to MAKE A WISH WISCONSIN, and all the donors who give to them. THANK YOU.

We met Minnie Mouse in the Magic Kingdom.

 

  

We rode a train in Animal Kingdom.

 

We met Cat In The Hat  in Seussland.

My highlight was meeting Barney and Baby Bop. 

We had a great time as a family. 

We made lots of great memories.

We even met Talking Mickey! 

Thanks again for your prayers and support. Now onto school and then summer!! Yes,  my doctor released me for public consumption and I'm going to start going to school on Thursdays. Mom is pretty nervous about germs in the classroom, but if I could survive two airports and Disney World, I think I'll be mostly ok in school. Please pray flu season is really over and that I don't catch too many viruses. 

I had a doctor visit right when I got back from Florida and I'm doing great. My numbers are up and it's almost time for me to get caught up with my immunizations. I brought in a box of books, like we usually do, and we had fun telling my doctor and nurses all about our vacation. Thank you book donors!  

Then, after my visit to the clinic, Mom took me to the zoo, like we used to do after chemo and I loved seeing the animals. 

Do you like my Minnie Mouse hat? I might still be sporting the Minnie Mouse apparel for some time. It really was the trip of a lifetime- and I'm so blessed to have a lifetime to remember it. I'm a survivor! It's hard to believe that chapter is over.

Well, it's over for me, but not for all. Childhood cancer is still a beast that needs to be conquered and there are a lot of people of all ages battling cancer. Mom still is doing her annual blood drive to help out those in need- June 6, 2016- because people always need lifesaving blood and blood products. I wouldn't be here today if it weren't for donors. I received multiple transfusions and really benefitted from the generosity of others. 

Also, we are having my after-cancer party that day- so come on out to see me celebrating my journey and donate blood if you're able.  I'll have my photo book done by then and you can see all the pictures from our trip that day! 

Thanks again- see you June 6. Watch for details on the drive. God bless you and yours. 

St Patrick's Day Hospital Day

St. Patrick's Day Hospital Day

Mom and Dad took me to the hospital on St. Patrick's day to have my port removed. No more chemo, no more blood transfusions, no more immunoglobulin transfusions. 

This marks the official END of my cancer treatment and the BEGINNING of the rest of my life!

One of my friends asked if this would be the end of my blog, but I don't think so.

 AND, I don't even think I have to change the name of it, either.

Instead of ALL standing for Acute Lymphoblastic Leukemia,

Katherine's ALL Blog will simply stand for 

ALL the things this kid with Down Syndrome can do.

If you like, stay tuned. God's not finished with me yet!

 Here's the last picture of me and my port. 

Dad and I unpacking the donated books. THANK YOU BOOK DONORS.

Getting weighed.

I love Dr. Burke. He's always happy!

My friend Sara gave me treats to share with my doctors, nurses and staff. 

This is my anesthesiologist who was there when they put my port in... 

fitting that she be there when it was removed. 

Thumbs up to the surgeon!

Me and my parents.

On my way to surgery.

In the recovery suite

Me and my family - I can see you now with my new glasses. 

Thank you for praying for me. Thanks for believing I could beat this. 

You can beat it too, whatever it is your battling. 

We all have fights to fight and battles to win. Just keep trying. 

Sometimes, I know, you can't beat it, but in suffering we can learn too, and in so doing, we win.

What's next for me? SCHOOL, reading and writing and things typical kids can do. Soon, mom will let me me out of the house.  Well, she's probably keeping me home until April when cold and flu season is really over. Then after that watch out world! Here's to parks and play grounds and grocery stores and libraries. Here's to swimming pools and picnics and parties with friends. 

Thank you, Friends, for everything. May you have a delightful spring and a blessed Easter.