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.

Consolidation, AKA leukemia treatment part 2

I'm home and it's been swell. I just go into the hospital once a week now for spinal chemotherapy and a check up with my doctors and nurse practitioners. This week was a little different because I got a slow IV blood product called IVIG; its someone else's immunoglobulin, those little things that float around in our blood and help us fight off infections. I'm thankful that generous folks out there donate their blood. It really makes a difference. The day after my trip into Children's Hospital, I did get a fever, and for each fever Mom has to run me back in to the ER for some extra lab work. It's a little tricky when you get even just a little bit sick when you have leukemia. My fever finally broke and I'm back to feeling well and eating my favorite food: pizza!




Happy in my hospital crib.


Reading.


Contemplating the universe.





My IVIG.


Do I look feverish? This is me at 10 pm, waiting for the docs in the ER.


Playing piano with my sis.


Smiling for Mom.


Signing 'apple' in my favorite holiday shirt.

This year for Halloween I'm going to be the Itsy Bitsy Spider.

Singing

As you may know Katherine doesn't use words yet. She tried out 'pizza' for a while, but it has come to mean, 'I'm hungry or Feed me,' which is sweet but still not the handle on speech that I'm looking for. Her speech is a bit delayed compared to typical kids. Lots of times kids with Down Syndrome take a while to start talking and have a lot of speech therapy to help them learn to verbalize what they want to say. Katherine uses sign language and baby signs to communicate, and her use of sign really boomed while we were in the hospital. But we are still waiting for her to start using her voice. That beautiful sweet voice that I know is in there.
Now we've been home for two weeks and her next round of Chemo is on the horizon. She's been feeling better and her mobilization has improved some; she's not ready for walking again, but she's getting stronger.
What she did last night really surprised us. I took the big kids to a birthday party last night. A birthday party for a little girl who returned to Heaven way too soon, but maybe not in God's time. Her family's loss of an 11 year old girl has been devastating, but their grief has led to an amazing awakening in so many people's hearts. A new found faith for some. Better parenting and appreciating that life is fragile for others. And an overall spread of the message that Jesus is real and that He loves us, even in times of adversity and that there is always the opportunity to see joy in every situation.
This last topic was one of the lyrics in a song last night at the birthday party concert: that joy is a choice. After the concert, I came home and played this song for my husband and Katherine, who couldn't come to the birthday party concert in memory of that sweet God-loving girl. And do you know what happened? Do you know what happened after I pulled up YouTube and played that song?
Katherine sang.
She just opened her sweet little mouth and made an Aaaahhh sound. Like a little angel.
Joy is a choice. We are going to keep seeking it, as God taught us, even in times of adversity, as that precious little girl, now in Heaven, taught us. And, we are going to sing about it too.



































Thank you for your prayers.

No cancer cells detected

Yes, you read that right! They did my bone marrow testing and the results revealed that there were no detectable cancer cells. The treatment during induction did what my doctors wanted it to do and I'm cancer free today!

God is good and our prayers have been answered. Thanks for keeping me in your hearts and minds. Thanks for supporting my parents and siblings through this first month of Leukemia treatment.
I still have a lot of chemo ahead of me. My hair will still fall out and I'm still at big risk for infection, but my MRD (minimum residual disease) percentage is 0.0%! My spinal fluid was free of cancer cells too.
So we are celebrating tonight and praying some prayers of Thanksgiving.




Prop sitting.




My port bandage.




The port was placed for easy medicine delivery in the future.




All smiles.




Except when I make my fishy face...




But mostly I like to smile!!
God bless you and thank you for your continued prayers.

Day 29- The end of Induction

We made it!!! With your prayers and good wishes, your Clorox wipes and gasoline cards, your snacks and letters and love, we made it to the end of Induction. The first 28 days are behind us and now we wait for test results.
Katherine had another bone marrow aspirate yesterday and we should find out if the first round of chemotherapy cleared her marrow of cancer cells completely. Yesterday she also had a lumbar puncture to check for any cancer cells in her spinal fluid, and had a port placed for future medicine delivery. It was a long hard day for our little trooper.




Thanks again for your prayers. They have lifted us up and protected us from fear. Our doctors have been great. The facility absolutely wonderful, clean and efficient. Thank you for keeping us in your hearts and minds. May God bless you all.




Happy together.




Snuggling with a new toy.




Getting to enjoy a little outside time after 29 days in the hospital, room 586.




Taking time to smell the marigolds!




There she goes again, spreading joy!

Day 25- early Christmas

Sure enough they released me from the hospital three days early. Day 25. Some amazing angels swooped into our house, with less than 24 hours notice, and made it all clean for my return home. It was all sparkly and smelled so good. They even put up some signs about some new house rules. I bet Mom made them do it, you know how she is about house rules. These ones are for me though, so, I guess it's ok. No shoes, no shirt, no service. No wait, that's not it.
No shoes,
Wash hands, and
no visiting if you're not feeling well.
Pretty simple.
Now I'm back home, but still in the induction part of my therapy. I still take medicine twice a day. I also have four mouth washes a day, because with my immune system so poor, even my mouth bacteria can make me sick.
My legs have really given out on me. I can't even stand up anymore. I'm super wobbly. That just means that I can't really get myself into trouble because I can't move anywhere. But I do want to be carried around a lot.
Now that I'm home I get to spend time with John and Diana. Yesterday it sure was fun seeing them again! Today, however they're not home. They took "me" (well, a balloon that has my picture on it, that my friend made for me) to the Wisconsin Buddy Walk to raise awareness about Down Syndrome. I think they even talked to folks about how kids with Down Syndrome are more likely to get leukemia and how to notice the symptoms and catch it early. They probably also talked about the good news, which is that kids like me also respond better to treatment for leukemia.
After this weekend and even though I'm home now, I still have a lot of treatment and medicines on the road ahead of me. On Tuesday, I have three minor operations. One of them is another bone marrow draw, that will hopefully reveal that all the cancer is gone from my bones. I sure hope it is...and, dare I say, I can feel it in my bones, well, CAN'T feel it... You know what I mean.
Please say an extra prayer for me and my surgeons on Tuesday.
I am so glad to be home and so blessed to be in your prayers. Thank you!!








Thanks to everyone who has donated to the Keep Klean for Katherine box. Wow!! John and Diana have a nightly chore of wiping down all the door knobs and telephone receivers with all the Clorox wipes you gave.




Diana is a great reader!




I love it when John practices his NEW French horn!




Mom's other Sign ideas:
A) Feeling well?
B) Felling sick?
If the answer is B, run away quick!


My family at the Buddy Walk 2013!!








Another sign:
Take off your shoes, slip on our slippers, if you're not feeling well, put on some flippers (and go jump in the lake, you're not wanted 'round these parts, til you're feeling better.)




Another sign idea:
Take off your shoes, please wash your hands, if you're not feeling well, please make other plans...
And finally:
Katherine is home and doing quite well;
but any bad germs could mean a trip to the hospital for a spell.
So we appreciate your thoughts, prayers and good will;
But please come back later if you're feeling ill!








Thank you for your continued prayers!!