Three years ago I had 100 days left

Three years ago today I had 100 days left  of chemotherapy protocol to complete. 

Chemotherapeutic treatment for people with leukemia  can last between 2.5 and 3.5 years. I got out early on good behavior and only had treatment from August 2013 to November 2015- ages 21 months to two days after my fourth birthday- a little less than 2.5 years. I don’t remember much.

What I do remember is what I did last week and what I did this summer and all I have to look forward to. I know I’m one of the lucky ones. That I made it through the treatment generally unscathed and with little memory of the hard parts of having cancer.

I still hate all medical gloves (even the ones at the dentist) and don’t like having my blood drawn- but- even some heathy people don’t like those things.

I may have some longer term side effects and I’ll learn more about those at my next and last visit with my oncologist next month- things like memory loss and bone fragility. But really, overall- I know I’m pretty lucky. There are families out there- unlike mine who have a hero in heaven now because of cancer. It’s important to remember them. This journey has taught me to appreciate life. 

Mostly, I remember the good things about my cancer journey - the friendships we made while being part of the HOT unit, the way the community supported us and prayed for us, and the snuggles and special family time that was mandated by my weakened immune system- that really gave us time to truly learn to love one another- no matter what trials we faced, no matter how many chromosomes we had.

There’s a really cool T-shirt my mom has that says, “Love doesn’t count chromosomes.”  It’s true.

What my family has really come to understand since I came into being, I think, is that “All life is precious.”  Mom has a T-shirt that says that too. It’s a lesson I plan on continuing to teach- to help people learn that we are all God’s children- all precious- all valuable- and all capable of leaving a positive impact on this world- all precious.

So, here’s what I’m doing these days with my precious life. Just typical fun summer stuff before I start first grade in the fall. 

How has your summer been? I wish only the best for you and yours. I’m still counting my blessings.

So far this summer—-

I’ve been swimming:

Spending time with Otis, a therapy horse and SMILES 

volunteers:

Mini golfing:


Catching and playing with toads:


 Visiting Texas: 


Spending time with my GranMary and Grandpa Cliff:





Sailing:


Participating in Game On day to help other kids through their cancer journeys:



Swinging:



Spending time with my sibs: 

Here’s a pic from 3 years ago- 100 days left in 2015:

Spending time with my friend Nicole:



Cooking:


Spending time with my sis and her friend and my Nannu and Nanna at the church festival:

Gardening:

Visiting Mr. Amon’s Rose garden:



And playing with Massimo, my favorite dog in the whole world. Mom promised we could get a dog once cancer was through and it’s been long gone for 3 years now. I love my Massimo.

Unbelievable

It’s unbelievable - how far she’s come.

Today Katherine was so incredibly busy with her “normal” life- that when her oncologist basically “broke up with us” it came to me as a real blow and I almost started crying! What do you mean - next visit will be our last visit? and she’ll be transferred to the “Next Steps Clinic.” What if she’s not ready for the next steps? Then I looked at all she did today and I realized- I may not be ready for the next steps- but she is. I can’t believe all of the the things she did today- without so much as a thought about cancer- or even Down syndrome. This kid is going places- and I know it because I had to driver her ... 

Best Day Ever

First ever Piano lesson (Thanks Mrs Penniman for taking a chance on Katherine,) Oncology Visit and book delivery for other cancer kids (thank you donors), zoo trip, Yerkes visit to pick up sister, and first SMILES horsey ride of the season (thank you to all those who donate locally and regularly to this organization- your gift makes lives better.)

Now- it’s time for second dinner and bed.

Lucky this time around

It's super easy to take life for granted.
We wake up, move slowly or move quickly, but we're moving.
So often we just TAKE FOR GRANTED that we're moving at all.

We get up, go about our day and don't remember to give thanks for the opportunity to life the live we've been given. You'd think after a cancer experience like mine, I'd remember that ever day, but I lose track of it too. I get lost in the day to day things. Luckily this summer, I've got a lot of things planned to keep me busy and thankful!

Summer is a great time to relax and realize how good I've got it.
It's a time to indeed wake up slowly and take it all in.
But, it's also a time to pack in the fun things that are hard to do in the winter in Wisconsin or when school takes up most of my days.

This is what I've done so far this summer...
Just two weeks in and I've taken some time for resting and some time for fun!
I hope the same for you.

Slow down time. Massimo hug time. 

Play at the park time

I am brave enough for the big slide now, all on my own!

I'm so proud I can do it!

Trip to the Zoo to see the Buffalo in Madison after my Vision Therapy appointment.

I like the flamingos.

I wanted to be a lion and roar!

I enjoy the Henry Vilas Zoo.

Vision Therapy lesson involves crawling a little bit every day to reorganize my muscles in my eyes. 

Mom finally had time to look at all of my artwork from Kindergarten. 

We had a good Father's Day.

Another trip to the zoo, the Milwaukee County Zoo, this time, after my dentist appointment this week. I love the train rides!

I'm always going to be short, but I'm growing every day. 

I love to take train selfies!

Even Mom likes a ride on the train!



Here's hoping for more fun and more time to contemplate the good days.
Next week I start my equine therapy and sailing lessons. All good fun - but mom and dad know these things increase my core muscle strength and help me get strong enough to sit in a desk for long periods of time, like I'll need to do in first grade.

More pics soon. Have a great June!

Blood Drive Time 2018

I'm happy to be almost done with school and that it's almost summer!

Yes- last minute plug for my Blood Drive.

Monday June 4, 2018

Delavan American Legion Hall

2 to 7 pm.

Come save a life or just come and hang out.

School is almost out.

Summer is almost here.

We are living in almost- we always are- 

We aren’t what we were and we aren’t yet who we are going to be. 

We are like wet clay- always changing - and the risk is that at some time we will stop moving and we will dry up and get weak and fragile and crumbly.

God is the one who mold us- always changing us- helping us through the funny shapes- never making us fully perfect- because we can’t ever be fully perfect.

And the artist knows that/ the work is never done/ never perfect.

But it’s always able to be loved, to be looked at and revered, to have obvious things that are right and spots that need more smoothing out.

Here are a few pictures of me living this almost life. Life in the middle. A life being molded.

Stay sticky and stay malleable!

Happy almost.

St. Andrew shirts on and ready for Memorial Day Parade. Remembering those who served.

I often wear headphones because some loud sounds bother me. 

I absolutely love my school! Watch out first grade, here I come!

I am enjoying the summer weather and the parks in town.

I gave my mother a rose after Mass on Mother's day. 

Massimo is a good puppy!

I love visiting with my friend before church!

Memorial Day Parade 2018

My school friends are all being molded, just like me. I feel so blessed that they accept me for who I am
 and for the shape I'm in right now. So thankful.