The color of your lips

The color of your lips is supposed to be different from the color of your face, but when you need blood or have lost blood or are facing some sort of trauma where your blood is needed elsewhere in you body, the coloring goes right out of your face and you're pale as a ghost. Well, that's what I look like this morning. Mom sometimes calls me her little vampire.




Maybe it's no coincidence that Mom had her big blood drive this week. I sure hope I don't need a transfusion this weekend, but if I do, I know there are 58 shiny new bags of blood available for people just like me because of you! Thanks for donating blood or for trying to donate. That's probably harder than actually donating... Wanting to give of yourself that way but being turned away because your heart rate was too fast or your blood pressure was too high. Mom and I are still glad you tried and we thank you for your generous heart! My face is probably so pale because I got some big time chemotherapy yesterday.

I thought Maintenance was going to be a transition to smoother waters... But mom said our boat is still rocking a bit. Yikes! Spinal tap yesterday, IV chemo (the kind that causes constipation and might damage my ability to walk normally in the future), then steroids at home, some drugs to be taken with food and some to be taken without food! Oh my!

The hospital yesterday had a major power outage and we thought for a few hours that my surgery was going to be cancelled, but they fixed things and got me in to the surgery schedule just like nothing had ever happened. It was peaceful strollering around in a dark hospital. My doc had a little extra time to play with me while the power was out and Mom took our photo. I played a bit on the computers while we waited too.

All in all I had a good clinic day, a good day in surgery, and a good day listening to Mom go on and on about how touched she was that people actually came out to celebrate her birthday and give blood! I've heard my mom typically throws a good birthday party, but as far as themed parties go, this one was WAY out there.

But people came! 81 people came! 72 people registered to donate. 14 were deferred for medical reasons. 58 bags of blood were collected and according to the BloodCenter of Wisconsin 174…yes….174 local patient lives throughout southeastern Wisconsin can be saved. Those precious units will be used throughout all the local community hospitals (i.e. Aurora, Prohealth Care, Children’s, Froedtert and the list goes on) that critically need blood and blood products.

What an amazing gift!
Thanks for using my smiley face for inspiration if you had to. I felt a lot of you channeling my bravery, my strength to get stuck yourselves. We are in this together. Or at least that's how you make it feel. Thanks for making my family feel like they are not alone in this battle. Your generosity, your self sacrifice and your support will never be forgotten!

Here are some pics from my clinic day. Pics from the blood drive Mom is going to post on FB when she gets them.

Thanks again and God Bless you!!

Stick it right here!






What gives? No power?






Computer keyboards make me happy!






I like Dr. Burke's stethoscope too!






I figured out how to get outta here!






Dr. Burke is excellent!






Surgery time.






Post op sandwich.






Mom and Dad Were more than excited setting up for the blood drive.




So happy you all came to donate! Thank you!

Hair, there, everywhere

I didn't much notice when I lost my hair because of chemo. My cancer was caught when I was just 18 months old. I had hair. Mom was putting it in little bows and silly pig tails. Then cancer came and chemo came and a month into treatment tiny little pieces of hair were found on my crib sheets, then my shoulders. Eventually it got patchy because my mom washed my hair every day. The stuff on the top of my head stayed in for a long time and I was sporting a mohawk for a while, until one of grandma's friends thought a) I was a boy and b) my parents allowed me to have a Mohawk... Dad used to wear a high and tight... Mohawk isn't even a word we use in our house. Ha! Yes, That was the end of that! Out came the electric razor and it was gone. Then there was just this cute fuzz. Then the chemo got stronger and I lost all of my hair. Skin only up there. But, I didn't mind. It was winter and everyone was wearing hats. Plus, I stayed inside most of the time so I could go bareheaded most days, which was good because, to tell you the truth, I'm not too big on hats. I'll wear them, but I'll take them off like I take off my socks... Almost immediately...

But, if I were a school-ager, or a grown-up, I bet I'd miss my hair. I bet every time I looked in the mirror I'd see the cancer staring right back at me. It can't be easy for grown ups and kids who just wanna be like other kids.

Mom says if you stare at the mirror too long, you lose focus of what's really important. Dad says the same stuff. Life is not all about you. We're here to help others through this thing called life. To take the challenges we're given and learn from them so that eventually we can help others. And, in reaching out to help others, we realize we are not alone, like we are when we look in that mirror.

Sorry, I'm just waxing philosophically this morning... Hard to believe because I'm only two and a half, right!?! But there's a lot going on in my little noggin. A lot I can't say just yet, because my speech is delayed. But I'm in here and I'm helping my mom get through her challenges by cracking my silly smile, singing my songs, playing my horn and posing with her for her blood drive photo...

Yep! That's finally just around the corner. Mom is turning the big 40 in a few weeks and she's hosting a blood drive to try to collect 40 bags of blood for the Blood Center of Wisconsin. We've had a great response and I hope all of you can come too. I have a feeling it's my shiny bald head that's helping bring in the donors.

Again, that's what it's all about, helping others. I like what Martin Luther King, Jr. said. "Life's most persistent and urgent question is 'what are you doing for others?'" Focusing on others helps to take the focus off of me and the challenges I'm facing. I hope you can come out to the blood drive. June 4. I wish I could say I'll see you there, but my chemo changes on May 29, and I'll probably still be under house arrest for a just few more weeks.

Have a great day! And wink at yourself in the mirror this morning for me!!






























































































Check it out: HAIR!!!!

Headed back in

We are headed back in to the hospital tomorrow for the end of this phase of cancer treatment. One more monster dose of chemo before Katherine gets a little break. She's been doing great so far though. No mouth sores. Some sleepless nights, but her hair is coming back in and we are hoping that with that we are heralding an even more normal lifestyle! So, if you see us out and about, give us a wave and a big smile. No big snuggles or kisses or cheek pinches yet until we are all the way out of the woods though... And we'll keep doing our part of bathing in hand sanitizer and taking off our shoes at the door!

Here's what Katherine had been up to this past month.



At her Flashes of Hope photo shoot.






With her new apron from Gran and Grandpa.




With Uncle Albert




On her trampoline that her physical therapist wants us to use.




Someone got into trouble for making a mess.




Cowgirl time!





Playing with Baby.












Sticker time! Want to play?





These are shoes hand painted by Peach's Neet Feet. They give shoes to kids with special needs and diseases. They were made especially for our little warrior.


























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Daddy day

Clinic appointments on Mondays mean one thing:

DADDY DAY!

My mom had to work today, and Dad was able to take me in to
the clinic, which he doesn't get to do that often.  He was a little worried about making sure we
did everything right, but I told him not to worry.  I’m a pro at this.  When we checked in, the nurse behind the
counter said she needed to give me my wrist band, I held up my right arm
because that’s the side I like it on.  Then
we sat down to wait for the nurses to call us back.  When they wanted to check how much I weighed,
I went and stepped up on the scale all by myself.

When they wanted to see how tall I was, I went right to the
counter and asked the nurse to pick me up. 
I like them to check while I’m lying down on the counter.  When they wanted to put the blood pressure
cuff around my arm and give me an “arm hug”, I pointed to my left arm because
that’s where I like them to do that one. 
I also held up a finger on my right hand so they could put the pulse-ox glowing
red thing on it.

Then we went to my exam room to wait.  I wanted to play on their computer, but it
was too high.

So I got some reading done instead.

The port access went very smoothly, and I had to get some
fluids in to keep my kidneys healthy.  I
think Dad was feeling nervous, so I played peek-a-boo with him to keep him
relaxed.

Thankfully, it was a pretty easy day for me, and Dad handled
it really well, too. I got some chemotherapy in the clinic and don't have to come back until next week. After my chemo, we both
were happy to head home.

As for me, I was pooped, and slept the whole ride home. 

Taking care of Dad is a lot of work.

Hurry up and wait.

Have you ever done that? Hurry up and wait? You push push push to get out of the house on time, and you may have even been running a little late, and when you get there, there's a line of other folks waiting. Aarg! What do you do during that wait? Tap your foot? Make repeated eye contact with the person at the door to the entrance? Huff? My mom and I decided to pray. It was mostly my idea.

Today, I got to clinic and my pre-op check went well. I passed with flying colors. I've been really happy and healthy these past 3 weeks while we waited for my counts to recover. We got a green light for surgery. Then we waited for the OR. I had another spinal tap scheduled for today. Another brain washing. Rinsing down my cerebral spinal fluid with chemo, since my other chemos don't cross the blood brain barrier. Well, there was a delay in the OR and we had to wait.

First, we did some coloring.




Then, we read some books. Here I am making a scary face.






Then we got our escort to the surgery floor and we waited for the prep with the surgery nurse, then the anesthesiologist, then the surgeon. Mom and I had to do a lot of waiting. I hadn't eaten since yesterday in preparation for surgery so I was a bit hungry. And, waiting time overlapped with a little bit of my nap time. Admittedly, I was overtired and hungry and two years old. But, in our weakest moments that's when we need God the most and there's no call-waiting on that line! We just dialed and got right in.





Dear God, Please bless the kid and the family who had complications the the OR today. Help them heal and be well.



Dear God, Please bless the surgeons, doctors, nurses and all the staff at Children's Hospital of Wisconsin. They work so hard to do your work, to make us kids get better from things like cancer, heart disease, organ failure, diabetes and a myriad of other diseases. Thank you for educating them and giving them such big hearts.



Dear God, I've got one more request and one more thank you. Please make it so my surgery goes off today without a hitch. And, thank you for giving my mom and dad such wonderful friends and family. They need support even more than I do, at times, and it's so nice that you have given them so many good people in their lives to help them get in better touch with you and what's really important. Their words of encouragement have made this easier on Mom and Dad. I can tell. Thanks for having their back and for putting angels on earth.

Shortly after that, our surgery nurse came and took a picture of me and Mom. She wanted me to wear that ridiculous surgery hat. Get real.









And before I knew it, I was in the surgery suite. Mom got a chance to eat. Then, I was out of surgery, ready for a snuggle and on my way home.








Thank you, Prayer Warriors. Thanks for your prayers for me and for my family. God's line is always open. Dial in whenever you like. You can ask for stuff, thank him for His son, ask for forgiveness or strength or for patience... Whatever you need. Now, He doesn't always give you EXACTLY what you ask for, but He's listening and the lines are open right now... Give it a try. And thanks again for your prayers for me. "I feel good."

Location:Deer Run,Delavan,United States