Day 5

Day 5

Today: awesome visitors and a big nap. Shawna, mom's best friend from way back and her amazing daughter, MiKayla, who has a lot of experience at Children's, popped in, as did Robbin, who has a daughter who has DS and survived ALL. The nap lasted from 12 to 4. We were making up from last night's atrocity : bad vitals and blood draw that really put a crimp in our REM sleep. Robbin pointed out that these ARE the good times.

Also started a new read: praying through a child's illness in 28 days. Thanks Shari.

God bless you.

Breakfast

Waving bye bye

Good night and thank you for your prayers.
Snuggle bug is ready for bed.

Day 4

My days are starting to have some consistency now. Wake up, eat, play, eat, nap, eat, bathe and sleep. Kinda like home, except at home I don't have as many visitors, people checking my arm, fever checks, or blood pressure measurements. These happen every 4 hours, even at night. The doctors here just want to be sure I stay fever free and symptom free from my meds. That's something new too: the meds. Mom still tries to sneak crushed medicines into my chocolate ice cream, but I'm on to her. Yesterday's excitement was an hour long IV push of chemo, so strong and unique that I only take it one time during my first 28 days. Sometimes kids get allergic reactions to it, but I didn't. All was well. Thanks for your prayers.

Infections and germs are the second biggest enemy for me, the first being the cancer itself, the playroom has a garbage can that toys go into once they've been played with, so that my germs don't go to anyone else and so that I don't play with toys that others have touched. Keeping clean and germ free is really important.

Here are some pictures of me on day 4.




I love reading!

Going for a spin around the 5 th floor.

I'm ambidextrous !

I climbed into and out of this car a lot yesterday.

Dinosaurs!

Here's the dirty toy bin.

Where'd the toys go?

Have a safe an uneventful weekend. Thanks again for your prayers. So far, I'm doing well. Four X's on my calendar and no fevers!

Day 4

Music therapy is just what I needed today. Plus a surprise visit from my big brother John.

Day 2 and Day 3

Dad played with me all day on Wednesday. Mom and I stayed busy all day today. We walked the halls, played in the playroom, did some coloring, reading, eating and napping. One of my anti-cancer medicines is actually a steroid that is quite bitter tasting, so mom hides it in chocolate ice cream. I'll have ice cream twice a day for the next month! Mommy's friend Sara came to visit and they visited while I took a really long nap. My body is starting to react to the chemo. It's killing some of cancer cells already, but it's making me extra tired. When I finally woke up Mom met with a Dietician to talk about other ways the steroids will affect me and about how my diet should change to keep my bones strong and my weight under control. Then my very special nanny, Anna, came to visit for a bit too. She snuggled with me and I fell asleep early tonight. Thank you for your prayers. Here are pictures from day 2 and 3.

Playroom:

Remote hog:

The nurse call button doubles as a telephone.

Playing with my new stuffed friends and a balloon from NANNA.

Coloring.

Playroom:

Anna and I reading a card from my Gran Mary and Grandpa. Thank you for the care package, Gran!!

Mommy and I on a walk around the H.O.T. Unit. Aaron Rodgers is photobombing us!

Three X's on my calendar so far. Another strong chemo tomorrow, in my IV; it should take an hour and sometimes kids have an allergic reaction to it. Please pray it goes smoothly for me. Thank you.

Day 1 Done

Awesome day. Exhausting for mom. I was a charmer. Chemo snuck into my chocolate ice cream. No troubles yet. Just started learning about how important it is to avoid all illness and to avoid all people who just have a tickle in their throat. No matter how mild, I need to be really careful. Long road ahead and bumpy.

Thank you Mrs. Eaton! This musical Ernie was just the distraction we needed to get the chemo in this evening!! Thanks for supporting my NANNA!!!

Thousand Dollar Pyramid

Lets play a round of Thousand Dollar Pyramid, shall we? I'll give you the clues, you guess what the box says. Remember how it goes? Ok.
Ovulation
February
How long a rabbit's gestation period is
The number of days in February
Guess it yet?
Answer:
How long it takes for you to treat Acute Lymphoblasic Leukemia with B cells.
I'm not sure that would have all fit on one of those adorable little squares, but that is what the oncology team here at Children's Hospital of Wisconsin has decided will work best to cure our darling, Katherine, of cancer.
28 days
So it begins. Day 1 is August 27.
I wanted to put a big calendar on the wall and put a big red X on each day as it goes by, figuring it'd be inspirational and that it'd help us keep our sights on the goal and off of the tricky and unavoidable side effects of chemo for Katherine. I wanted poster board and markers and I wanted to hang it up as this will be our home away from home for a whole month... But my nurse said, "No." Her voice said no and her face said no. Her body language was a pitiful expression of sadness that expressed to me, "Darling, no amount of cheerful disposition, calendars, or red X's will make this something that will be fun to wait for and anticipate like tickets to Disneyland."
My friends who have made it through this have suggested, you can make it through this.
And as a side note, the doctors have suggested that at the 28 day mark we sure as heck hope we got it all and that when we recheck her bone marrow we hope that no cancer cells are detected... But there are no guarantees... So even if I have 28 red X's... There might be more months of red X's in our future.
That being said, do you really think you can beat the cheerleader out of me? I think not.
So we'll try to take it one day at a time. We'll manage our divided home life and the logistics of our former life with the help and blessings of all of our family and friends and we'll keep that red pen close because I start making red X's tomorrow.
Now to hit on a few highlights of Katherine's day yesterday. What a show off. She waved at everyone, showed off her new signs, pooped in the potty, and had two more bone marrow draws and a PICC line placed. She visited with Dad, met the research nurse and had dinner with mommy's really good friend who brought her a copy of Goodnight Gorilla on steroids... And by that I mean, it was a huge board book. Huge! Thanks, Casey! Speaking of steroids, we start steroids tomorrow, which will likely change Katherine's appearance quite drastically...but until then here's what she looks like pre-treatment:

Thank you for all of your prayers and well wishes... You have no idea how much they mean to us.
A piece of advice: go to the store early tomorrow. They just might run out of red pens!!

Yesterday's fun, Today's big Reveal

Yesterday I had my first spinal tap and bone marrow draw. I did well under anesthesia and enjoyed the ride in my crib through the hospital. We find out today what kind of cancer I have after they run my cells through the flow cytometer, which Mom has likened to the coin sorter at the bank. After the diagnosis comes, then the plan of attack will be revealed.

That surely wasn't highlight of my day because yesterday my Dad brought my amazingly entertaining siblings to visit!!! We played, read books, and talked about serious stuff. Most impressively, my dad compared the word CANCER to the name VOLDEMORT. He's such a smart guy. Just like Dumbledore said, in the Harry Potter books, and I'm paraphrasing here because I can't actually read yet, "Fear of a name increases fear of the thing itself." And although cancer is a pretty scary thing, we have to try to be brave and face it head on and not be afraid to talk about it. That's a lot for us kids to handle, but only the people able to say the name Voldemort were able to kill him. We got this! Then Mom gave a lovely science class on bone marrow and blood cell lines; truthfully, it was a bit beyond me. The rest of the day was arts and crafts, a visit from Uncle Joe and Auntie Ann and eating at the cafeteria until mom came back from hanging out with one of her besties, who proves there are angels among us.

Here are the photos from yesterday :

My chariot ride. I was waving like the princess I am, spreading smiles through the hospital on my way to the OR.

My first award for bravery!

Here I am checking out my tummy. Nearly all of my bruising is gone. No more polka dots.

Cuddles for my new stuffed animal Mini Mouse from Auntie Ann and Uncle Joe.

Big brother John

Big sister Diana

Expert door decorating team hard at work.

Family photo in room 586

Final product