Shaun William Thistlethwaite

It pains me to say Shaun passed this morning. Everything is too raw right now to formulate pretty words to describe him or to honor him properly so I'll leave that for later. Just wanted his friends and family to know.

Brilliant Author, Shaun Thistlethwaite

As many of you might know, Shaun is amazing with words. He is able to speak well and write even better. When I have papers to write for work, I often go to him to help me edit them. Even though he doesn't understand the science, he can always make things sound better (and more grammatically correct). But more than that. He has a way of conveying a message succinctly, with honesty and directness. He doesn't need flowery filler or pointless soliloquies to make his writing good. I bring this up because he wrote a book. Its called Letters to Bryce. I think you can guess what its about. Although Shaun is talented at writing fiction, this is an honest account of what Shaun has been dealing with these past two years since being diagnosed with cancer. It shows the amazing bond he has built with Bryce despite the pain and terrible ordeals he's been challenged with. I think its an amazing gift to Bryce to be able to learn about his dad and have a tangible object that encompasses who his dad is. It includes Shaun's thoughts and philosophies on life and a clear message to Bryce. This is what he believes, but more importantly, Bryce is to think for himself and make his own beliefs and philosophies. Another theme in the book is Shaun's gratitude and love for his friends and family. If you buy the book, you probably will find your name in it somewhere! Even though the book is a personal account of our family and Shaun's inner most thoughts, Shaun would like to make the book public. Therefore, he and his dad published it and made it available to everyone. Whether it be just for friends and family or if other families struggling with cancer find inspiration in it, either way, we are happy to share it. Please check it out.

https://www.createspace.com/3652857

or

www.shaunbooks.webs.com

Everything is fun at the ZOO!

Yesterday the weather was predicted to be beautiful....and it was perfect. So we are so glad we took advantage of it and went to the ZOO! Over the weekend I had made the mistake of telling Bryce we were visiting friends who live by the zoo. By being the key word. Apparently, he only heard visiting and zoo. To make amends and since Shaun was feeling up for it, I took the day off of work and we all went to the zoo, Shaun, Bryce, Nana and me. It was a perfect trip. We got to see fun animals out and about and no one really cared if any were sleeping since it was such a beautiful day. It was just so nice to be outside. Shaun did great with Nana pushing him in the wheel chair (only a few bumps and almost spills). And Bryce loved every minute. I think its one of his favorite places to visit. Makes it extra special that Shaun got to take him there one last time before the weather turns too cold. One of the fun times was when Bryce was being chased by a seal. Actually, I think both the seal and Bryce were probably chasing the cute little girl running along the tank, can you blame him?

Having such a wonderful day as a family is bitter sweet. We don't know how many more special days, hours or fleeting moments we have left as a happy little family. But we will cherish each one as if its our last.

Giraffe Thistlethwaite, Nice ring to it?

Bryce had his 2.5 year check up with the pediatrician. Other than the obvious fact, Bryce is awesome, she confirmed that he is really really tall. He is >99th percentile in height at 40 1/4 inches (~3'4"). My dad read somewhere that if you double a kids height at this age, you get the projected adult height. If thats true, do the math with me, Bryce will be 6'8". So I think the nickname of "Giraffe" will suit him if he chooses to play golf (or any other sport I guess). Other stats, he is 32 pounds (80th percentile) and has advanced verbal skills. I guess the doc wasn't used to carrying on a conversation with a 2 year old and being able to understand every word. His vocabulary is always expanding including, adventure and obstacle course. Oh and if DJ Nurre reads this, he can recognize the show Bar Rescue and asks to stay up and watch it with us. The commercials on that channel are really not appropriate (A Good Old Fashioned Orgy movie promo?)

Bryce is doing really well on the toilet training front. He's had several successes (both kinds) and minimal accidents. Overall, I'm pretty impressed with how quickly he caught on. No more diapers at night and nap time will be the next challenge.

Shaun has had some challenges lately: mainly fluid drainage issues. His legs and feet are really swollen and water pills don't seem to be enough to get rid of it. Poor guy can barely walk because his feet are 5 times their normal size. Thankfully we got a wheel chair from Chris Dunn and an electric chair from the Buckwinklers. Shaun can ride around the neighborhood in style now. I think it will be great for him. He'll be able to get outdoors again and watch Bryce play more. He can go to the library or Walgreens if he wants to. He hasn't been able to drive since being put on a pain pump so this will hopefully help his regain some of that freedom. Shaun's mom has also agreed to stay with us during the week so Shaun can have someone with him during the day to keep him company and take care of anything he needs. Hopefully these measures will make Shaun more comfortable.

The pictures are of Bryce's clay creation he calls his sea monster.

Happy Birthday, Shaun!!

Well, you made it! These last two years have been challenging to say the least. But you made it to another birthday. Statistics say you shouldn't be here, but you are still fighting and I love you so much for your strength. I'm amazed every day at what you are able to endure and how you persevere. Instead of complaining that I hurt you by stabbing you with a needle, you reassure me that I did fine and that it didn't hurt (much). That is what sets you apart from the rest of the world. You care enough about everyone else to protect us from your pain and are strong enough to keep going when others would have given up. You are the source of strength that keeps me going and our family afloat. You continue to amaze me. I know today is pretty bad on the discomfort scale and it sucks to be on chemo on your birthday, but I know you are doing it so you can see next year's celebration. You promised me 82, so by my calculations, you have 48 more celebrations to go. Happy Birthday, Shaun. I love you so much.

Toilet Training Extravaganza!

Adventures in parenthood: toilet training time. Notice I did not call it by its commonly referred to name "potty". Nope, not in our household. We like big people words. No sippy cups, no pacies, no blankies. Basically nothing with an "y" at the end. So our adventure begins.

Online there is a guide to toilet training in 3 days. I thankfully didn't buy it, I just got the gist of the concepts from other people online. In the middle of day 2 and I'm pretty sure its impossible to toilet train a kid in 3 days. That being said, we've made some major headway in this short weekend. Our little runner who runs in circles around the kitchen and living room we now know is peeing during that time. Or at least needs to go really badly. All along we thought it was a funny game but in reality, pee time. I also learned that cleaning poop from non disposable training pants is disgusting. I don't know how all of you use/used cloth diapers. I about threw up earlier today. But Bryce is now telling us before he goes that he needs to sit on the toilet and is going more than a couple drops. This is progress and I'll take it.

As for the reward system...I asked my mom to send me the treats she gives Bryce when he is at her house. I found it rather ironic that she gave me "smartees" and "dum dums". So are the dum dums for when he misses and the smartees for when he has success? I'm kinda glad he prefers the smartees. Or as Bryce says "some-arties!"

Wish us luck and continued success.

Port take II

Sorry I've been so negligent of this blog. I find that when things are going really well, I don't post. If things are going really badly, I don't post. Its during the mediocre lulls of this roller coaster ride we call life that I tend to post most often. Also, if you haven't picked up on the trend, Bryce photos and videos are usually the focus of the blog when things aren't as optimistic with Shaun. But thats not always the case, he's a cute kid, I like to share that no matter what. Anyways, Shaun has had a few set backs and challenges ever since our trip to Disney. He's been in and out of the hospital for bowel obstructions and challenges with pain management. The catch 22 is the bowel obstruction hurts, so he needs pain meds but pain meds can make bowel obstructions worse making the pain worse requiring more pain meds. So after several attempts to let the bowel obstruction clear on its own (hard to do with a tumor squeezing your colon) we decided to take some action. First order of business was to get Shaun's pain under control. He is now on a continuous pain pump and he can give himself additional boluses of pain meds every 6 minutes if he needs it. This has made him A LOT more comfortable. But if created a logistical problem. He has 1 port so he could only have his pain pump or his nutrition (TPN) going at one time. TPN takes 12 hours but there was no way he could go 12 hours without pain meds. So he needed an adjustment. Yesterday, Shaun had his port replaced with a dual lumen port. This just means there are now two lines into his central blood stream. So he can do his nutrition and his pain meds at the same time. The only additional problem is when he wants to do chemo, he needs to use one of those lines, so probably he will go without TPN for those two nights.

The next issue is his bowel obstruction. The last 4 or 5 days have been really rough on Shaun and we don't know if it is solely due to the obstruction or the chemo he got last week. But he's been throwing up every couple of hours. (sorry, tmi I know). Thankfully there is a possible solution. They can put a tiny tube in his stomach that sticks out his skin that will enable the release of the stomach contents without the need of the digestive track. This will allow Shaun to eat again (in small amounts) and hopefully stop the nausea. This past weekend we had social engagements which revolved around food. Do you know how uncomfortable it is to sit at a table with everyone eating and not being able to eat? Not only does it make you hungry and want the food, you feel weird sitting there with strangers and not explaining why you can't eat. At least this is what I would feel. Hopefully, it wasn't too uncomfortable for Shaun (sorry).

So possibly next week Shaun will have this procedure done.

In other news, Bryce is amazing. He is talking a lot and showing off his imagination and creativity. He likes to sound out words and read letters but mostly he is obsessed with the cars from the cars movie (Thank you Angela for provided HOURS and HOURS of self play) and his train set. Sometimes, the cars go on the train set and he combines the two. But basically, Bryce is content to play downstairs endlessly. Beware if you come to visit though, he likes to include visitors in his play. " Papa play a little bit? Nana, play a little bit?" At least he is asking right?