Smooth like Butter

Isn't it great when everything goes your way?
It was like that for me today.
I had a spinal tap and chemo scheduled at Children's Hospital of Wisconsin today and everything went smoothly. Not a hiccough or stumble all day.

I woke up happy. Got in the car sans breakfast... No eating before surgery.






A little rain followed us to the big city, but no traffic jams.
No waiting or trouble checking in to the amazing MACC Fund Center for Cancer and Blood Disorders.

Visited promptly by our amazing nurse and friend Jeanette. Saw our equally fabulous Nurse Practitioner Susie Burke, who pronounced me 'looking good.'

I Sang a little with mom while we waited to go up to surgery.





"Mamma called the doctor and the doctor said, No more Monkeys jumping on the bed."

I had my port accessed and had an IV put in. Then spent 20 minutes cleaning a syringe just like the nurses do. Boy was that fun!


















Then up to surgery. A little wardrobe change because my Elmo Jammies don't have a hole in the back.













We met with our favorite anesthesiologist, Dr. Strong, and her resident. She said, "You've done this before, you know the drill." Well, I wish I didn't, but making light of it does make it less scary for Mom.

In an hour's time, I was back to my normal self, after the meds wore off. I headed back to the Clinic for more chemo and then to the parking structure... Easy Peasy!

I slept all the way home.





Steroids start this week. So, it may not be a totally restful holiday weekend. But, I'm truly so thankful to have such a great hospital and staff to help me through this, and even better family and friends who are willing to pray for me and send my Mom and Dad good thoughts and messages all the time.

Have a safe and happy long weekend. God bless you!

Just keep swimming

What do you do you when times get tough and things seem a bit scary and uncertain? Well, in the famous words of my friend Dory the fish, "Just keep swimming."

My numbers were way down in July and I didn't feel so hot. My mom even wrote the last blog post, that's how down and out I was. It's true. These new meds are pretty strong and they really worked great and knocked my bone marrow almost all the way to zero. They are supposed to suppress the growth of the cancer cells but they did a real whopper on me and wiped everything out. Red blood cells, platelets, white blood cells, you name it. I needed two blood transfusions and a platelet one too. Thanks to three blood donors, I'm still alive to talk about this. Seriously, you blood donors are where it's at... Amazingly selfless gift! Thank you!!!

So, I got some blood, platelets and got off my meds altogether and you know what? I started to feel human again! It took about three weeks and now I'm back to being my old sing song self. And the best news is: my bone marrow did finally start working again and my numbers rebounded nicely. So nicely, that I'm back on my meds.

See? It's a mixed bag. With no meds, I feel great, but I'm dying, literally allowing the cancer cells to take over my bone marrow and edge out all the good cells. Too many meds and, yup, you guessed it, I'm dying, no cells of any kind. So...my doctors are hoping we can do this dance, stay on the balance beam and keep the bad cells at a really low number and the good cells keeping me breathing AND giving me a nice rosy hue like my sweet sister who has always rosy checks.

During the last few weeks of feeling GREAT my grandparents from Texas came to visit me!! I loved seeing them. I even learned to say their names: Papa and Gaga. You know, my speech is still quite delayed compared to typical kids, but these two new words I've got down! I'm not sure when I'll see them again, regrettably, I can't travel until 2015, but I'm making their place one of my first stops once I'm off of therapy!

Here are some pictures from the last few weeks of feeling Fabulous. I hope you're enjoying the end of summer. Thank you for your prayers to stay well and to kick this cancer to the curb. It takes a lot of people, needlessly and cruelly. I know my fight gives people hope and my odds of winning this battle are good, but I know I'm one of the lucky ones. For my friends who have lost a family member to cancer, know that my family prays not just for me, but for you too... In three ways. One, that you can rejoice in knowing there is a Heaven. Two, that you can have all the time you need to grieve and that no one will make you feel badly about how long the pain of losing someone lasts. And Three, that you can find the strength to Just Keep Swimming. It's a big swimming pool and if you wanna share my floatie for a while, that's ok. It's better to share the burden with friends than swim alone.

Just keep swimming. Just keep swimming. What do we do? Oh oh oh oh? Just keep swimming.













Family picnic






Making bracelets with Gran and Diana





Playing with Grandpa






Ready for swimming. I say Gaga for Gran AND these goggles.





Happy times, feeling good.



Moms eggplants





My new big girl car bed. Here I am snuggled up with Sis and Dad. Thanks for the shout out to Children's Hospital of Wisconsin, Dad!








I'm even well enough to go outside!






I helped to plant some mums for the fall.






Family photo







Flashback to last August. Cancer diagnosis: August 23, 2013.






You've got cancer, here try this sucker. Ha!







If you know someone who might need a hug because someone they know lost their fight, give them a call. Expect nothing. Give everything and try in your own life to just keep swimming.







Hugs and prayers to you and may enough people in your pool be willing to share their noodles.

How low can you go?

Everybody Limbo!!!!
What a game, celebrating how low you can go without totally flopping on your behind. I wish we played it more often, because as it is we treat falling down or getting depressed as a bad thing, as a shameful thing instead of as a good thing, as a starting point with optimism because the only place to go from there is up!

Katherine's July was pretty yucky. No fancy adult words for it. It was bad. I, dear old Mom, heroed, acclaimed and highly revered Mom, messed up her meds and things started down a long spiral that ended in many many repeated sleepless nights, crying and moaning nights, overall decrease in appetite, inactivity, mouth sores, decrease in drinking, two non breathing spells- where sweet like K wasn't so sweet anymore and screamed herself into a blue lipped lifeless body... Boy it was a yucky July. In the end, the docs say it wasn't the mis-timed meds, it was just the mystery of chemotherapy with a little Down Syndrome on the side. Apparently chemo is toxic, and kids with DS have a harder time handling the meds in this phase... Well, phooey! It's a real bummer this phase lasts until November 2015!
But, there's only one way to go, and that's up.
Actually, that's not true. We could wallow here a bit. Katherine's counts haven't begun to recover as we had planned, hoped, and prayed. They are still going down. The biggest miracle would be if her bone marrow would wake up, recover and start working again... Only for us to start chemo again to kill the cancer cells once and for all... It's a long and treacherous cycle.

Katherine received two units of blood and one bag of platelets last week. She was so white and pale. She had lost so much energy that when I came into the room she could only raise her eyes to greet me. She did recover nicely but it looks like we need more platelets tomorrow and if I can tell anything by her lip color it looks like she'll need more blood next week. Thank you to all donors. Cevin and I gave last week and it only took 7 minutes to actually donate. It's amazing how much you can change the world in 7 minutes. Consider donating if you haven't before, not just for Katherine but for anyone who might need your life saving blood. I wish I had been giving my whole adult life. Sometimes we just get too busy to donate. And, sometimes we can't...but statistically of the 65% of the population who can donate, only 5% do.

I guess it's time to get up and try to make it one more lap around the roller rink. The big man upstairs put the bar on the limbo poles up and is gonna give us another go at it! Amen! Even if we fall, it'll be ok.

Here are some pictures of Katherine during the last few weeks.

White skin












Getting blood, drinking for the first time in weeks.



















Getting platelets.








Playing with Platelet tubing




Playing peek a boo







Taking her own temperature




Being a monkey.














Big swollen cheek from mouth sores.








Playing find your nose in our hospital crib.







Playing where are your ears?








Thanks again for your prayers and well wishes. Here's hoping her counts go up and we can get back on track to beat this. Thank you.

Who knew? Even falling down can be fun sometimes.

Every limbo boy and girl
All around the limbo world
Gonna do the limbo rock
All around the limbo clock
Jack be limbo, Jack be quick
Jack go unda limbo stick
All around the limbo clock
Hey, let's do the limbo rock

Limbo lower now
Limbo lower now
How low can you go?

First you spread your limbo feet
Then you move to limbo beat
Limbo ankolimboneee,
Bend back like a limbo tree
Jack be limbo, Jack be quick
Jack go unda limbo stick
All around the limbo clock
Hey, let's do the limbo rock

Get yourself a limbo girl
Give that chic a limbo whirl
There's a limbo moon above
You will fall in limbo love
Jack be limbo, Jack be quick
Jack go unda limbo stick
All around the limbo clock
Hey, let's do the limbo rock

Don't move that limbo bar
You'll be a limbo star
How low can you go?