Friday, February 14, 2014

Week of Rest


Well, I am one week shy of the half way mark for this stage of my chemo treatment. It hasn't been fun, but it hasn't been awful either!! No fevers yet for me. No in-patient stays. No quarantine. Phew! My hair is starting to fall out again and my mohawk came back. Mom isn't too fond of it and gave me another buzz cut. Here I am sporting my 'hawk.


This week there is no chemo planned. No home meds. Just cuddles and naps and time at home. The doctors and nurses call it my Week of Rest!


When I'm feeling well enough to play, I like to do my reading and coloring.



Sometimes my big sister lets me help her with her math homework.





I just started playing with stickers, too.






My sister let me play with her dollies this week. Like typical two-year olds, my imagination is starting to bloom.





My taste buds haven't changed too much yet, as pizza is still my favorite food. I have stopped drinking milk, so that's been a bit of a challenge for Mom and Dad who are trying to keep me hydrated. I have started watching a little TV in my down time and my favorite show is Sesame Street.

I'm going to have a quiet Valentine's day. Here's wishing you and yours lots of kisses and cuddles. I've been getting loads of them lately. Happy Valentine's Day!



May God bless you all, especially those of you on journeys similar to mine. In the spirit of the Olympics, I know we can make it to the finish line.

Keep that fire of hope burning!

Thursday, February 6, 2014

Things to watch for; I'd much rather watch for signs of spring...

Hi Family and Friends!!



I just returned from the Oncology clinic and carefully carried Katherine still in her snowsuit, hats and gloves up to her bed to rest.

Thankfully the cold didn’t wake her, and she is still sleeping.


 Here's a quick heads up about this next week, as it was told to me by our nurse practitioner at Katherine's appointment in the HOT Clinic today.


Katherine will again begin another week of steroid medication. This medication is intended to wipe out herimmune system.


She was at an ANC (absolute neutrophil count = how strong her immune system is) of 2000 something last week, this week she was at 700, and we expect it to go down much further this week.


You may recall they kept us in the hospital the last time she was on steroids, because then too, her counts  were very low, in the 200s and 300s…


Katherine had a trying week last week with constipation, which kept her from sleeping, then diarrhea, which was heralded, as it signaled the end of constipation, but it was a pain to manage. Then there was the nausea and vomiting. She remained in good spirits, mostly.



She now has had another dose
of the chemo that may in time be detrimental to her heart muscle, and another
dose of the chemo which may cause mobility issues and will immediately bring
back the constipation.



We have to be very careful
with Katherine this week. Lots of hand washing. No exposure to ill people or
coughing people. Removing shoes at the door, washing door knobs, telephones and
refrigerator handles. Washing floors and toys and dishes right away. Watching
what she plays with, is it possibly dirty? Washing her hands often too.
Making sure she isn’t putting toys in her mouth or our spoons or dirty anything
in her mouth.



We must watch for her
coloring to remain constant, as her bone marrow is getting wiped out and she’ll
likely continue to lose blood and platelets and will possibly need a transfusion of those next week. Her counts this week are already on a significant downward trend. We should watch for an increase in bruising. She is also not making good blood
cells at this time, as her marrow is suppressed, and we need to watch her for
looking less than normal pink color, white lipped, or extra fatigued, as that
means our little vampire may need more blood products, too.  


(Looks like my birthday blood drive is going to be helpful to other kids in this situation this summer. Blood donors - you're the BEST! Please continue to watch for details on this and put June 4, 2014 on your calendar. Location and times TBD!)


She currently has two mouth sores, which are expected as another side effect of one of the medications she is taking; we have to watch her eating and intake. If she starts refusing to eat or drink, it may because she has throat sores or soft mucosal tissue sores, and likely we’ll need to get her hospitalized for dehydration and nutrition.


She has not been drinking fantastically, according to her BUN and creatinine lab stats, that’s kidney stuff.  I think she’s been drinking great, but we really need to push her
apple sauce intake and all liquids to save those precious little kidneys.



We have to check her for fevers a lot this week, as any fever is a sign that her body is fighting something off, she just doesn’t have any cells left to fight. So we’d need to
go to the hospital immediately. We get triaged right in and will likely be admitted
for days.


There is a lot going on with Katherine. She's a little aware that she doesn't feel well, but overall she's our smiling sunshine. She stopped waking up with a smile, which has us all a little disheartened, but we know it's in there.


Thanks for your continued support and prayers.


God Bless you all!


Here's Miss Smiley playing with the chemo scanner.









Here's our happy nurse giving Katherine the chemo that will ultimately make this cancer go away! Thank you!!









Yes, she's still wearing her Christmas jammies!! If the weather is going to stay so cold, we are not giving up our footed pajamas any time soon.


                                                       And from our local weather authority,
                                             "Bundle up everybody! Keep yourselves healthy!"


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







































Tuesday, December 17, 2013

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!!

































































Sunday, December 1, 2013

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!