Monday, January 27, 2014

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!












Wednesday, January 8, 2014

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