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?

At the drop of a dime

If you do something at the drop of a dime you do it very fast, pretty much instantaneously, without too much thought, planning, or hesitation. - Wordpress.com

Things can change at the drop of a dime too. Your whole life can change in a matter of seconds. Change for the better and change for worse. It's interesting to think about.

I'm only two, I haven't had a lot of life's experiences yet, but people go from being single to married, with a joyful 'I do,' from unemployed to employed with a simple 'you're hired,' and from player to winner, with the last ditch effort as the buzzer blows and the ball glides into the net. It's amazing how fast good changes happen.

I like to fall asleep fast. At nap time, Mom takes me to my room and snuggles me in my favorite blanket and we rock in Dad's old Lazyboy and she sings me a song. It doesn't take but 5 minutes and my breathing slows, my legs stop twitching and I completely give into a slumber and I'm fast asleep and that's a good thing. I really need my naps to grow, to get bigger and stronger. I need my strength to beat this cancer.

Not so good things happen quickly too, like getting a diagnosis of cancer, or hearing 'you're fired' or hearing that a friend or family member was in a serious accident or has congestive heart failure or kidney failure or a heart attack, like losing everything in a tornado or a robbery or an assault. It's the moment after the bad news/event happens that people tend to say time stops.

The emotions flood your system, you can't hear or see straight, and you're not certain you're even standing on the ground. It takes a while for the dust to settle and for a path to be seen. Sometimes the grief is too much and we can hardly see where we're supposed to be going. Sometimes we need a friend's hand to lead the way.

Sometimes time stops and I think that's because we are just supposed to stop and look around a try to enjoy the journey not just try to escape from pain and grief.

The painful journey may be a long one. And different friends may help at different times or take shifts in guiding you through the muck and sometimes you may feel like you're wading in it alone, but it'd be a shame to never see the beauty that's around you in these challenging times.

I guess that's what I've been doing the last few months. Stopping to smell the roses. Yes, I still have cancer and I am an absolute stinker when it comes to taking my medication everyday and yes we're not sure if we can ever really be free of it or of worrying about whether it'll come back again some day, but if we hold our breath that long, we'll all be dead anyway! Mom is still a bit crazy about germs and doesn't let me get out much or play with kids my own age, but, she's finally starting to realize that life is for living now. She's realizing that there are good things do to and enjoy that can parallel our grief, our worries, and our crazy chemo schedule. Sure, life might change again at the drop of a hat, and a fever might come and we'll have to drop everything and run to the hospital, but waiting in the car seat with my bag packed is not much of a life...

So I'm trying to get back into the swing of things, these days. I am seeing a new speech therapist because at sometime I'll really need to start using my words. Mom and Dad aren't holding back in pushing the academics for me. Nope, move over cancer, this kid has got things to learn. I am starting to learn my ABC's and we just got a Memory card game with my favorite Sesame Street character, Elmo, and his friends on them for me to play with each afternoon. Mom brought up John and Diana's old 3 year old books and I'm reading those everyday too. I'm going to the park some this summer, even though there are other kids there and yes, their germs, but it's a great place for me to practice my stair climbing and the slide...

When you sit at the top of the slide, not much fun happens there. It's when you finally let go, when you let yourself slide that the fun happens. It's when you allow the change to happen, you feel the wind on your face and you let the thrill if the ride take you...

And just like that, at the drop of a dime, you're enjoying life more than you were before. I hope you enjoy the journey too.















Here I am wearing my 4th of July outfit and a new hat my friend Kelly made for me!





Blowing bubbles this summer is sticky but fun!



Corn on the cob season makes me smile!




My brother and sister and I were invited to a superhero costume party! My brother is Bone Boy, My sister is Catwoman, and I'm Captain Chemo!



Mom has me signed up for swimming lessons! I love it!



Here's me, smelling the flowers.


My second hair bow! My hair is coming back in!