Feels like old times

So, we are under quarantine. Can’t go out. No stores, no play dates, no parties with friends or families, no school.

Nothing too new about that concept- I did it from 2012 to 2014. My brother and sister still got to go to school. My Mom could go to work. Everyone else in my community lived a normal life and only my life was restricted to this home-bound business. Now, it’s everyone- to keep the corona virus from spreading.

Initially this quarantine was set up to protect the weak- the compromised- like me- or cancer kids like me- or grandparents with co-morbidities- but now- it’s really to protect everyone and to stop the virus from spreading. 

Every person who gets it- is told to stay home and their family members are told to stay home too, so the virus just dies with them in their house. My prayer is that this works- that somehow this virus dies out. 

I’ve got some real living to do. Once my cancer quarantine was over- MAKE A WISH granted me a wish and my family went to Florida for a vacation and a start-over button was pressed. We could again begin living after cancer.  We were put up in a resort called GIVE KIDS THE WORLD VILLAGE.  It's an amazing place. Kids who have faced or are facing critical or terminal illnesses are invited to stay there, and families can stay there only once per life time. They have an Ice Cream Shoppe that's open from 7 am to midnight. They have rides and pools, and take-out and parades every night. It's a hotel resort like no other. It's staffed by a core staff and then an additional 1737 volunteers a week and annually hosts 342,160 volunteer hours to care for the grounds, the fascilities, and the guests. When we were there, we were having breakfast at the dining hall, and a little 11 year old brought us our napkins and forks and we asked him what he was doing there. He said he and his family were volunteering. At the time, my mom looked at my dad, my brother looked at my sister, we all looked around and nodded in agreement. When we were all well - and time had passed and we could come back and do it, we all decided we too would be a volunteer family.

Well, that was all set up, and we were headed to Florida…. THIS SPRING. The spring that the virus hit. The spring that everything closed up, travel, flights, leaving your own state... and sadly even GKTW had to suspend services. Sure, it's no fun and no fair that we can't go fulfill our dream to volunteer and help out other MAKE A WISH families, but all those kids who finally were going to get their MAKE A WISH trips, had to post pone them because of the state of the world right now. 

A lot of people have been inconvenienced, few have been hit so hard that they've had family members die. Many people are working the front lines to help the sick and dying. Our "postponed family vacation" is absolutely on the bottom of things to complain about or worry about. We know that, and we're making the best of this spring that we can.

I'm being homeschooled by mom, with much guidance and support from my teacher and school. My brother and sister have an awesome school too, and mom couldn't be prouder of their teachers and district. Mom is home full time, she normally works closely near people's faces and can't go to work until the CDC tells her she can go back. Dad is working at his normal job, and washing, and washing and washing. We're trying to take care of Grandma who lives next door, but it is hard because this virus can be in us, without us even knowing, and we don't want to bring it over to her, even though we are all feeling well and look well, and have no fevers. We talk to her every day and try to tell her what we've been up to. In the evenings we eat dinner together, which didn't always happen when mom was a working mom, we watch shows and play games. We do a lot of bottle flipping. We play indoor hopscotch. We pray.

Mostly, that's what starts our day and ends our day. We pray for peace. We pray for people to be patient with other people - there are lots of ideas and theories and anxiety and frustration and sadness now. But, there is also, lots of joy, togetherness, and blessings.

I am lucky enough to be young enough to really only see the blessings. Sure, I miss my school friends and my teachers, but I love this extra time to be home with my siblings and my mom during the day times.  I love family dinner and am the moderator EVERY night of "HIGHS AND LOWS." AND, I almost forgot,  I get to spend all day with my dog, Massimo. He got sick last year and our vet told us he only had one year to live... but he made it!  He hung in there, we did what his doctor recommended, we DON'T feed him any table scraps anymore, and he made it.

Some of the news these days is like table-scraps, too much of it and you might just get really sick.
I'm steering clear of all of that, and I'm just focusing on the good.  I hope and pray the same goes for you. I pray for your peace, your health and the opportunity for all of us to find a little rest. Special prayers go out to the health care providers, the essential workers in all avenues who help our stay at home be so easy, you know who you are, and we do too. Thank you from the bottom of our hearts for your selflessness and your hard work!

Here's what I've been up to, making the most of my second go-round of this quarantine business.

 

Happy Valentine's Day 2020

Happy Valentine's Day 

This year I am still feeling the love from friends and family who have supported me, and I count myself so blessed and lucky to have people in my life who care about me. I got Valentines from my school friends and family and mom even bought me a pack of bagels to enjoy this week because I'm not a fan of candy. 

This winter I've been busy. 

I went to see the Ice Castles in Lake Geneva with my family.

I had my first Reconciliation and am now getting ready to celebrate my first Holy Communion in May. Mom and I made my First Communion banner recently. I picked the designs all by myself and glued all the pieces down.

I participated in Catholic Schools Week and wore this Minnie Mouse shirt for "Disney Day."

I painted a rooster with a Let's Make Art YouTube tutorial on my iPad. I really enjoy painting and doing crafts.

I'm taking a basketball camp this winter too. I can dribble and run at the same time. It'll be a while before I can make a basket, but I really have fun with all the kids and following the directions of our coaches! 

I'm having a blast with all the snow that's been coming down the last month. I even helped shoveling a bit. My glasses turn extra dark in the cold. 

I hope you and yours stay warm this February and that your heart is warmed 💗 from the love I'm sending you. Love is best when shared! Give yours away and I'll give mine away too. 

Happy Valentine's Day! 

Love, Katherine Mary Grace

One more year to celebrate

I celebrated turning 8 this week!

Two days after my birthday we all will celebrate my being cancer free for 4 years!

This fall I had fun being a chef for Halloween.

I had some fun carving pumpkins and doing things healthy kids do!

We went to the Shedd Aquarium with our German Foreign exchange brother and sister! 

We had a busy trip to the hospital around my birthday- I saw the ear doctor, the dentist and the endocrinologist. In a few weeks I go back to see my friends on the oncology floor. I have graduated to the Next Steps Clinic and don’t even have to get my blood drawn anymore. We just visit and measure my growth as pray the cancer never comes back. As long as I keep growing, and stay healthy, we will count our blessings! We brought books for the other kids who get treatment at Children’s Hospital of Wisconsin. I love restocking the book boxes in each of the clinics we visit.

I had a breakfast birthday party today. We ate eggs and waffles.  It was fun! I got a lot of things about the FROZEN 2 movie and have plans to see it during school winter break! I got unicorn things too and an “Alexa” for my room. 

Overall it was a great day and it’s bound to be a great year! Thank you for being my friends and for praying for me. The fact that I am here is a miracle. We are all here for a reason. I’m glad you’re here with me!

October is Special

October is Down syndrome Awareness Month 

For October to celebrate - I’ll be sharing:

Things I’ve learned from Katherine Mary Grace.

1. Believe in Yourself!! This is a picture of a note Katherine wrote to herself on her math workbook page. 

2. Be brave. 

(Sleep Study. K did so well. What a trooper!)

3. Don’t let challenges get in the way of having fun. (Wear earphones and be ok with making your own modifications.). We went to a show - and Katherine wore her sound blocking earphones.

4. Find your inner creative genius. She worked on redesigning this water bottle for an hour today.

4 a. And don’t be afraid to talk to yourself.  Self encouragement goes a long way.  (See number 1) Children with Down syndrome often talk to themselves or to imaginary friends. Once Katherine started talking- she never stopped- even if she’s the only one listening sometimes. She gave herself art direction audibly the whole time she was crafting. 

September will always be Childhood Cancer Awareness Month

September will always be Childhood Cancer Awareness Month.

I was diagnosed August 24, 2013 with Leukemia.

I was treated in-patient until late September that year.

I was in too deep to know it was Childhood Cancer Awareness month- but I was keenly aware of what it was like to be a child with cancer.

Aware that kids like me get way more leukemia than typical kids.

Aware that a hospital can come to feel like home, and that home can come to feel like solitary confinement- because Mom didn’t let me leave much over the two years of treatment- except for hospital trips and Mass (where we’d sneak up to the choir loft so as not to get germs from highly populated places.)

Aware that steroids taste yucky and not even chocolate ice cream can cover up the taste.

Aware that spinal taps can come to be normal, and that blood transfusions are pretty close to the most generous gift one can give to another person.

In time, I’d be aware that only 4% of the taxpayer-funded National Cancer Institute’s annual budget is dedicated to Childhood Cancer- and that only 1% of the American Cancer Society’s budget goes to help the fight against cancer for pediatric patients.

I was made aware that people I never thought even knew about me were praying for me. I was made aware of the huge capacity for human compassion and I was the lucky recipient. I felt lucky having cancer. I was afraid that having Down Syndrome made me unlucky- but this cancer that came on that extra chromosome- brought love to me and prayers for me. It was an unexpected precious time for my family and I to be “stuck” together in our house- to get to be together like on a camping trip or a retreat. Thanks to cancer, the love they had for me grew. Afraid of my initial diagnosis, but now desperate for my survival, cancer made things change for the better. How odd.  The cancer was the side show and LOVE was the main event. The kids at my brother and sister’s school wore bracelets about leukemia - that said No One Fights Alone. They too got supported in this journey. We had friends bring us food, clean our house and many many philanthropic childhood cancer organizations send support each in their unique ways.  

There are some pretty special things that happened during my cancer journey.  Cancer for me for sure was no fun -as a toddler- so young and so desperate to understand my new normal, but out of the ashes grew many good things. I got better, the doctors and nurses were nothing short of amazing. I am cancer free now and this November I’ll be able to say that I’ve been cancer free for four years. I may not even remember my cancer because I was so young, but my family won’t soon forget the main event. (The love, not the cancer.)

We try to give back- because we were given so much. We are following the other childhood cancer families before us- participating in the fundraising where we can because it is so needed, when funding for kids with cancer is so low and the medicines are so old. We encourage blood donation as surely the gift of blood was given to me over and over and over. We like to work with Make-A-Wish and Give Kids the World as they helped to close the chapter on my cancer experience, and we want other kids to have those healing, resetting and rewarding family times too.

Thanks to everyone who was there supporting me when I was so so sick, and thanks to those who continue to help with us give back for the kids who just today were given a cancer diagnosis, or maybe it was last week, last month and maybe it will be given tomorrow. We want to be there to help and we’re grateful for those who can help with us.

September, to some, may be all about “Back to School” but for me it’s also about back to life.

Here are some pictures of the things I did the last few weeks: my Make-A-Wish walk, back to school pics, summer pics and a few cancer-days flashbacks.

God Bless.