Busy bee

Mom took a lot of pictures today! A lot of pictures. Here's what we did:

We showed up early with our wheelchair of donated books. Thank you book donors!!! I was still asleep in my pajamas at 7:45am.

Eye appointment

Guess who is getting glasses?

Move to 7th floor, endocrine. Weight checked.

Height checked.

Bummer. I had to get my finger stuck to check my sugars. I'm ok! OUCH!

 I got a bandaid.

And, I recovered quickly.

Met a new Fellow. My heart was fine. My thyroid is still broken.

Next floor- 5. Hot clinic- hematology, oncology, transplant. My home sweet home.

Elevator rides are fun!

Checking in to get a badge to allow access to the MACC fund clinic.

Checking out the books we brought in.

Getting tagged.

Another height and weight.

More blood pressure checks.

Using Katie's badge to get into the Day Hospital.

I'm Not a fan of the breathing treatment. But, good news is, today was the last one!! No more duckbill masks for mom and no more breathing treatments for me!

Riding around the day-side in a new MACC fund car. Can it be I'm getting too old for this?!

Time to paint, while getting a transfusion of Benadryl.

Nothing gets me down...

Except maybe Benadryl... That stuff works great. I got the last IVIG transfusion today too.

Next month, port removal. And then maybe a family vacation. Mom still won't let me leave the house, and today she nearly bathed me in hand sanitizer as we were in so many different places in the hospital today and exposed to so many germs. Maybe soon I'll be ready for general consumption. It's hard to believe that it's almost time for the switch... cancer can take a back seat (where it belongs) and Down Syndrome can reign supreme--- just in time for March, where on 3/21 we celebrate the third copy of my 21st chromosome. Not everyone has an extra chromosome like me. See if you can find your striped socks.... Plan to wear them with me on 3/21!!

Please pray that I don't come down with a cold after transversing what feels like this whole hospital today. Prayer really does matter and many prayers going up all at once on the same topic can make miracles happen. Thanks for praying for me. Next month I have to have surgery to take this port out. Mom is a bit worried. Having someone cut into my chest is understandably a bit concerning. Here's praying it all goes well. By then I'll probably have my new glasses. Oh my!

God bless you!

Bated breath

We just had my two month post-treatment check up at Children's Hospital of Wisconsin. We went with bated breath hoping for the best because earlier last week I had spots all over my body that looked just like the spots I had when I was first diagnosed with cancer. Could it already be back? This fast? After just two months off of chemo? Oh my!

Thankfully the answer was no. The cancer is still gone and my counts are good. The visit was a blast. I had a little dance party with my nurses, played a simple version of Simon says, without the Simon says part, got my pneumonia treatment meds because my immune system is still in the doghouse and got an immune boosting transfusion that lasted 4 hours but was otherwise uneventful.

Now on to bigger and better things, I hope. As the chemo fog lifts, my speech is booming and my cognition too. It may just be being 4, but my family thinks I'm really learning so much these days. I'm learning much like a typical kid, I guess, which is no big deal, but having Down Syndrome makes all learning on its own timeline, usually behind typical timelines. Then that cancer curveball came my way. My family wasn't certain what skills I'd be able to acquire, ever. Now that I'm off treatment, the sky is the limit. They're super proud. I've been working with my nanny during the days and my family at night on preschool type skills, like spelling my name and acquiring sight words. Next stop: math...
Well, actually, next stop is potty training...I'm still not a pro at that.
Everything in its own time. Each milestone is a celebration- even that.

What else is next on the horizon? Well, I still can't leave the house until flu season is over. My family is still going to Mass in shifts. But, we pray together at home. As of late, we've been praying not just that my cancer doesn't come back, or prayers of thanksgiving for my healing and my new academic skill acquisitions, but for a very special girl who was in a serious car accident and for her family.

Just like a cancer diagnosis can change your whole perspective on life, your plans and your hopes, your prayers to God, a tragic accident can do the same. It's not easy to stay faithful, that God has this all worked out, but it's even harder to give up faith and think that He doesn't. If you have prayed for me, thank you. I've been incredibly blessed. If you can, pray for this young lady too, that she is healed, pray for wisdom for her doctors, pray for continued strength for her family- unlike a cancer protocol that has a set number of days to the end of chemo, this family's road is uncertain and we pray that she'll soon be on what will likely will be a long road to recovery.

Thank you for praying. We pray as one.

 

Here I am getting ready for my blood draw.

Headed to the hospital.

Book rack!

Donated books! Thanks to all who donate books for us to take each trip!

Reading one of the donated books.

Getting weighed in, I gained a pound.

Getting taller!

 

 

 

 

                                                

Getting checked after breathing treatment.

Sleeping during my transfusion.

Hugging my new Cuddle Bear.

No News is Good News

NO NEWS IS GOOD NEWS -

But here's what I've been up to.

My sister got well. I never caught her potentially deadly virus.

I had a birthday - which is a pretty awesome thing for a cancer patient.

I celebrated my birthday, played in the snow, had a marvelous Christmas, got some Make A Wish news and I plan to have an amazing 2016! I hope the same for you!





HAPPY BIRTHDAY TO ME!

I turned 4 in Mid November!

I had a doctor appointment, and it really was the best day ever, just like my shirt says. The nursing staff was awesome and got me my transfusion of immune fighters to give me protection for the flu season!

Now that I'm 4, my parents moved the crib out of my bedroom and I'm really a big girl in my BIG GIRL BED!

I was notified in Mid December that my family and I will be going on a MAKE A WISH trip! I want to meet MINNIE MOUSE - so WALT DISNEY WORLD.... here we come!

My wish granters sent me a Christmas present too!

Because my sister was too sick on my real birthday, we postponed by birthday party until mid-December. I was able to celebrate with my cousin at her birthday party! I love her!

Check out this cake! A beautiful cake designer made a special cake for me for my birthday. Because I want to meet Minnie Mouse, she made me a Minnie Mouse birthday cake!

On December 24, I got another wish... a wish for a white Christmas. Dieter Sturm and his company of elves and SANTA came to my house and gave us a WHITE CHRISTMAS. Mr. Sturm makes snow for motion pictures and brought his snow machine to our house. It was a special day and a special treat!

For Christmas, my family likes to decorate cookies. I take my work very seriously.

Here are the cookies I left out for Santa.

Grandma gave me a Minnie Mouse tent! I had such fun playing Peek A Boo!

I also received puppets. Mommy and I sang "Who are the People in your Neighborhood."

I hope your cookies were as good as ours. HAPPY NEW YEAR!

I have another hospital appointment this week. Wish me luck.

This is a picture of me in the artificial snow. The real snow is here now and I like it almost as much. Stay warm this winter. Stay safe. Stay home if you're sick. Sorry to be a broken record, but during cold and flu season it's especially important to keep your germs to yourself. I caught a cold this week and even have pink eye, but I don't go out ever anyway... BE WELL AND GOD BLESS YOU!