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.