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.

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.