Waiting for the frost to bite

When wind chill is

0°F to -19°F (-18°C to -28°C) Frostbite possible. Exposed skin can freeze within 5 minutes.



-20°F to -69°F (-29°C to -56°C) EXTREMELY COLD. Frostbite likely. Exposed skin can freeze within 1 minute. Outdoor activity becomes dangerous.



So naturally, one would assume it's best to keep kids inside, unless it's really important... Unless the benefits outweigh the risks...



Yep, we had to brave it. My chemo treatment phase called Delayed Intensification started last week Thursday and for me the benefits of treatment outweigh the hassle of warming our van, my winter weather wardrobe and the mad dash my mother makes with me with a blanket over my head.



Luckily for me, I don't much mind my snowsuit and braving the extreme cold. In fact, having been cooped up inside for months because of my risk of infection from folks in big crowds, stores or even church I look forward to these outings; I love going out, even if Mommy makes me wear my huge purple snowsuit, pajamas with footies I can't take off, an undershirt, tights, socks, two hats and mittens.



My chemo is intense. Even though my outings are a break from my daily routine, I'm not sure I'm real keen on these new medications. Thursday was another spinal tap and again my brain got a little washing. Then I got a lot of meds in my port. I got home and my nightly meds started...yuck! I had forgotten how bitter steroids taste; and now my dose has doubled. Mom got a taste of them when she kissed my sticky cheek that first night. She crushed my pills in homemade strawberry jam and the sticky leftover on my cheek was the spot she kissed me. Ha! You should have seen her face! Mom has been trying to hide the meds in chocolate syrup since then, but they just plain don't taste good anyway, morning or night.



Today I had chemotherapy again, but this time it was the kind that sometimes causes serious allergic reactions; my amazing nurses had to stay with me during administration and watch to see I didn't get hives or need immediate intervention. Luckily, I passed with flying colors. I had to stay extra long in the procedure room after therapy just in case I had a late reaction, but I was a champ and did just fine.



When I got home I got a little nauseous and lost my dinner and the truth is I have had some constipation since Thursday. Things aren't all rosy, but they're not all frostbite-y either. I'm making it alright. I've got my sights set on 8 weeks from now, warmer weather, real outside time and maybe some fresh homemade jam without anything but berries in it!

Brrrrr!



Waiting to get labs drawn.




At the Herma Heart Center, before my ECHO to make sure my heart is healthy. One of my meds can be trouble for my heart muscle. Results: great heart!








Lying so still waiting for the heart ultrasound.





Prepping for anesthesia, before my spinal tap.





This is my grumpy face; I'm not really mad, but when Mom asks me to make this face I do it just for her. It's nice to make people laugh sometimes!





Post-op with my baby doll, Mint. She's bald like me!





The amazing treatment facility!




In my new crib, which is actually my grandma's crib. My room has an uninsulated wall and it gets cold in there on these cold nights, so Dad and Mom put up a new crib for me in their room. I like being close to Mom and Dad. I think they like it too.





Walking with Miss Stephanie to my room today! They take such great care of me at the MACC FUND CLINIC!!





My procedure room today. It's bigger than my typical room.





Here I am post chemo today. No allergic reaction!





Downtime.




Dinner time! Actually this was lunch, a burger as big as my head.










Still smiling! Thanks for following my journey and for your prayers. Stay warm!!!



1/29/13: update: yogurt worked! Katherine feed herself her meds! A new chemo hiding vesicle!! Hooray!

Prayers welcome here

Maybe not in some schools, or in public, or on TV, but Prayers are welcome here.

There was just no stopping the severe gaze Katherine's nurse practitioner gave as she tried to prepare me for the next phase of therapy. The potential side effects of the next group of chemotherapies are scary; but that really minimizes it...

I had though we were out of the woods and that we'd go from daily in-house care to weekly care to ten day care...

But we are now back to weekly care with poisons that can break down her heart muscle, make long term learning disorders, long term mobility issues, tummy aches and vomiting and immediate immune system reduction...

And the last one is actually something we want.
These all work in combination to wipe out her bone marrow and reset it. So that when it grows back, it grows back clean. And ultimately we want that. We are willing to do anything to keep her alive... To keep the cancer from coming back. But wow, at what cost?

The cost of other little lives. Other little kids who tried these chemotherapies first. Little lives who got the side effects, whose experiences help change the dosages so that Katherine's risks of side effects are lower. Little ones whose doses maybe weren't high enough to ultimately beat the cancer.

More research needs to be done. More studies. More funding. It might not be able to help Katherine, but there are others who will follow her. Please consider joining the fight against childhood cancer.

And... Please pray she rides the sidelines and doesn't get these side effects. Please pray she makes it through to the other side. That in the short term she makes it through the next 10 weeks.

If I know her, she'll do great. She's done great, with God's help and your prayers. Please keep praying. Thank you,
Mom

The joys of re-gifting!

My mom has a wee little cold. She wore a face mask while on the HOT unit today to keep her germies away from all the immunocompromised kids, and then came home and took a nap while I did. We both needed some sleep healing!















Chemo today went well. At our appointment, my amazing nurse practitioner said she had some good news.

Great, we will take it!

She said she knew the end date of my leukemia treatment!
What?!?

It seems a bit premature, but my mom is a girl who is tasky and likes firmly set and visible goals, so we listened together, as our NP revealed the date:
November 26, 2015!


Two full years to the date from the start of Interim Maintenance.

Well, won't THAT be a Thanksgiving to celebrate!!

But it is TWO FULL YEARS away, two full years of treatment. It kinda took Mom's breath away, but after a second, it filled us up with hope! The end IS in sight...

What a lucky kid I am to know that there is a recipe of disaster for my leukemia. That, if we follow the protocol, we can joyfully enter the 5 year schedule of cancer-free check ups that start two years from now and we will be able to put this all behind us...

They told us it would be a long road. And so far, I really haven't much minded it.

Maybe it's because I'm 2, and don't really know what's happening. Or maybe because, with all of your prayers, I haven't had the awful side effects that are a real possibility for kids getting chemo. Or maybe it's because God gave me a great demeanor and nothing much bothers me ever!

Thanks for taking this journey with me. Thanks for your prayers, your well wishes and your support!

Have a merry Christmas.
My silly little smile is my present to you! It's free and you can regift it! Enjoy!!

Thanksgiving

Hi Everyone. I'm still at home and doing well. I just wanted to get a shout out to all the people I'm thankful for this year: my family, my friends, my Anna, my doctors and nurses, my therapists, my church friends, and my prayer team, you know who you are, and even though I may not know who you are, I'm doing great because of your uplifting prayers and well wishes. I just know it! Thank you for keeping me in your hearts, thoughts and prayers. You're in mine too! Happy Thanksgiving.
I'm also thankful to all the kids and families who have gone before me with Leukemia, those with Down Syndrome, like me, and those without. Thanks to your families for allowing you to be on studies so that the scientists can learn the most they can about this cancer and the drugs and treatments that work and the ones that don't work. Your sacrifice is remembered often. Thank you.





The sound an elephant makes.




Coloring




Getting ready for a blood draw.




Reading a new book from GranMary and Grandpa.








Wearing a new outfit for Thanksgiving!




Yea!




I love typing on this thing like the big kids do.

 

God bless you this Holy Season. I'm not sure I'll make it to church, too many germs out there...but sing your loudest and your best for me. Thanks again for your prayers!

Living in a bubble

Katherine's counts are the lowest they've been since induction. She has a very weakened immune system. I think we are going to keep her in a bubble for a while. We might pass on mass next week, which is being said for Katherine on Saturday at St. Ben's in Fontana in honor of her 2nd birthday. I will be sure that the big kids and Cevin can go. It's a good thing she won't remember her 2nd b day; this year we are keeping it VERY low key.
We have to postpone her chemo that was scheduled for today, because her immune system is too weak to handle the medication. Back in September, they wouldn't release her from the hospital until she accomplished 'count recovery' to 500, suggesting she had enough of an immune system to fight some typical germs. Yesterday her counts were only at 180. Yikes. She's at risk from her own normal flora at this point, according to our oncologist.

But, you'd never know it by looking at her!

















She's coloring, potty training like a champ, laughing, reading and getting caught making messes like your typical two-year-old. What a joy! Thank you for your continued prayers and support.

Phew, glad that's over, for now, at least.

Well, phew, I'm glad that's over, for now at least. I had my fourth spinal tap on Thursday, in a weekly series of spinal taps. Each week I go into the hospital and meet with the phenomenal staff in the HOT (hematology, oncology, transplant) clinic at Children's Hospital of Wisconsin. They review with my folks how things have been going at home and then they orchestrate getting me to and back from surgery. Spinal tap surgery doesn't take very long, they just take a little fluid from my back and replace it with chemotherapy medicine and that gives my brain a good wash down so that cancer cells won't stand a chance at surviving if they sneak into my central nervous system. I'll get a few more spinal taps before I'm out of the woods, but after yesterday I get a break for a while.




Blood draw before surgery.




They let me try on a surgeon's hat.




All plugged in, post-op.




You can really see my hair loss here. I got my flu shot on Thursday too.


In other exciting news I'm walking again. It took four weeks to build up my strength and leg muscles to carry me around, but I'm back to walking around, getting into cupboards and making messes.
















Winter is almost here and it's soon going to be hat season for everybody, not just me. Today I helped Mom and Diana get out our hats and gloves.
















Looks like we are ready for the next season! Next up in cancer treatment? More at home meds and lots of hand washing and avoiding sick people. Thanks again for all of your prayers and for staying away if you're not feeling well. Keeping me both cancer free and illness free while being immunocompromised is a bit tricky, but we'll get through this in no time!
God Bless and have a great week.