Great day at a Great Hospital

Once again, I had a great day at Children's Hospital of Wisconsin. Everything went well for me. On schedule, as expected and without complication.

Yes, my chemo isn't working as well as it once was, which means my oncologist had to increase my daily home medication dose, but I kind of expected that... I've been feeling great and have been learning lots this summer. So, for my last 4 months of treatment they're going to up my meds.





Checking my blood pressure.





Goofy posing before surgery. My extra chromosome makes me extra flexible.





Talking post-op with my new friend, Ralph the giraffe.





Feeding Ralph.





Pretending my bread crust was a mustache.


Today I had my second to last spinal tap. Pretty awesome. I can't believe I'm saying this, but I think I'm going to miss the sweet OR team and recovery nursing staff. They are the best and so gentle with me as I come out of my anesthesia sleep. They make bravery poster awards for me and are so kind.




Getting Ralph ready for the OR.





Ralph is ready for surgery!





Post op, I usually feel a bit sleepy. Here I am on my chariot ride through the hospital.



Today I also got to visit the Day Hospital side of the MACC Fund Center. They really thought about us kids when redesigning the space. Today Mom and I painted and colored with markers. Fun!













When I got home, I went on a bike ride with Mom and Dad! Mom missed her early morning mile because I had to be in the hospital so early. Are you running, walking or biking with her? Only 119 days left!!





Just me and Mom and Dad. My sibling are visiting Gran and Grandpa in Texas.




Here's a pretty Wisconsin flower bed at Mom's friends' house. We popped in for a visit after we left the hospital.

Everywhere I look things are blooming and I've got lots of reasons to smile. Mostly I smile because I have so many friends praying for me. I've only got 4 months left of treatment. What a ride. It doesn't really really end in 4 months as all cancer patients know, but the chemo does, and that's something!

Hope you have a great day, see lots of flowers in your neck of the woods and that everything goes your way too!

Thank you for your prayers and miles!!

And! Check this out... There were no books for kids my age today at the MACC Fund, but thanks to you, Mom restocked the book box while I was in surgery! Thank you book donors!!













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Fun in the Summertime

HOT fun in the summer time...

Remember that song?

It hasn't been a very HOT July, well not yet, anyway. The word HOT has two meanings for my family and me - in addition to temperature hot, it also is an acronym for the Hematology, Oncology and Transplant Unit at Children's Hospital of Wisconsin.

They're responsible for saving my life - and for keeping me on the right path for bigger and better things. We love our HOT unit and all the people who make it great, our support staff, nursing staff, doctors and nurses. They are really Amazing folks! We are so blessed.

I had an appointment on July 2 in the HOT Clinic.

I brought in some books to donate to the book box for kids to read while in clinic. THANK YOU for donating your books for me to take in. They really do make a difference and we read books every time we go to the hospital. THANK YOU!

I got weighed.

I got measured. I'm getting taller!

I read a new book to my puppet monkey. 

 

We had a pretty sweet visit with my nurse practitioner. I was in and outta there in record time. Mom even had time to take me to the ZOO afterward! I was told that my counts have been creeping up a bit and my chemotherapy dose has to be increased. That has Mom and Dad a bit scared a) because last year at this time I got super sick from the dose being too strong for my body and I needed a bunch of transfusions and b)our sweet friend just had an "upping" of her meds and lost all of her hair AGAIN. Oh, I know that losing hair is just part of the package deal with cancer killing drugs, but I'd really rather keep my mop. Mom is having way too much fun making pigtails and firework ponytails on my head. We'll see what happens. So far I've only taken one stronger dose. The other thing that our nurse did, was to reduce how often I get my blood drawn. On one hand, yahoo, who likes to get their blood drawn every two weeks? Not me, but that's what I've been doing for a whole year! But, we're going to go down to checking my counts only monthly. YIKES! I sure hope I don't bottom out next week. I'll just keep eating right, sleeping right and taking my meds. I'll just keep taking it one day at a time and walking one mile at a time.

Speaking of which, my mom started this walking club. She needs to work out more, and that's just her thing, but with ME as her inspiration, committing to work out has gotten a little bit easier. She's taken the "walk in someone else's shoes" cliché to the next level. Knowing that the road for kids and families with cancer walk isn't easy, she's committed to walking one mile for every day left of my cancer journey. She's invited her friends and wants to invite you to walk along with her. So, when she started I only had 142 days left of cancer treatment. She's going to walk 142 miles in all, one mile each day until THANKSGIVNG DAY! So far she hasn't missed one. Want to join her? Just walk one mile in your own neighborhood and if you think you don't much feel like it, remember a)it's good for you and b)even when we don't feel like it, us kids with cancer have to fight just a little bit every day - some kids have to fight a lot. So, get up and go and walk with us! Let's see if we together can get to the end, healthier and happier and really ready to celebrate THANKSGIVING!

 

 

(It is incredibly cool that my last cancer chemotherapy pill is scheduled to be taken on Thanksgiving day, I wish I was making that up, but that's how God planned it. According to the Down Syndrome Arm of the Treatment Trial I am on, my last day is X number of days after the end of delayed intensification, I think, and that just happens to be November 26, 2015.  In my family we don't believe in "just happens" or coincidences - we believe in GOD-incidences. We are giving big props and thanksgiving to the BIG MAN upstairs!)

So, all that being said - we're just taking it one day at a time, one mile at a time. Here are some pictures of my July so far.

       I saw my nurse practitioner on July 2.

 

 

 

 

     I had a lovely 4th of July.

 

    I played Mr. Potato Head with my cousin, Marcella.

 

 

 

I started my swimming lessons for the summer.

 I love my teacher and like to think I can swim all my "ME SELF."

 

 

 

 

 I visited with some friends and played "check up."

 

 

 

   I'm very active in Mom's garden.

 

 

I enjoyed some really great U12 baseball, watching my brother and his remarkable team play some great ball. Yes, I actually wore my winter hat to the ball field one day. Yikes.

 

 

 

I plan to relax some and do some more of the same for the rest of the summer, hoping my counts don't bottom out too much with my increased meds. As always, your prayers are welcome here.

Thank you in advance.

 

I hope you're able to relax some too this summer and maybe get up and walk if you're so inclined, only 137 miles to go at this point. 137 days!

 

 

Mommy spoiled me a bit, and bought me a stuffed Rhinoceros plush toy at the ZOO.

Rhinos are my favorite animal. My next hospital visit will be a long one. I have a spinal tap scheduled and those spinal tap days usually take a lot out of me. Only two more spinal taps left.

 The end really is in sight. Thanks for following my blog and for taking this long journey with me. Thank you again for your prayers.