Tuesday, April 29, 2014

Mile 3: the wind in your hair

We have hit the half-way milemarker on the chemo/radiation road trip!

Last week was another exciting week on the rehab floor - still working to get full use of his left side back, Jason works hard with his therapists, jokes easily with his nurses, and laughs well with everyone he talks to.

He continues to have a steady stream of visitors, either passers-by or dedicated drop-ins.

One of the big events last week (the beginning of week 3 of radiation) was that his hair started to fall out!
The doctor told us early on that radiation would create some bald patches... and so to avoid looking mangy the doc suggested just shaving it all off (or at least really short)!

So that is exactly what he did:
Jason's "new do" means you can actually see his scar!
Some folks have already contributed to the cause by bringing various distinguished head coverings so that Jason won't feel quite so conspicuous:

And while I stole away to Meeker for the weekend to check on the house, be with the boys, collect the mail, walk the dog, visit with friends, and watch Hamp's baseball game (Go Beavers!)...
Jason got to spend the weekend with his mom & dad.
I think it was exactly what everyone needed.

I took a moment to ponder just how far he'd come since the early days (4 weeks ago) of physical therapy...
and realized that when you piece together snippets of all the training we've managed to capture on video it becomes wonderfully evident of just how much progress has been made:

Speaking of progress... I almost forgot to mention that we are being discharged from the hospital this Friday and are spending the weekend AT HOME!!!!
Looks like mile 4 will be a good one...

Monday, April 21, 2014

Easter weekend - mile 2!

A second week of chemo/radiation treatment was followed by a weekend of new faces and holiday fun!

First, a changing-of-the-guard of sorts went on in Meeker last Thursday: 

While I have been keeping Jason entertained (tap dancing and stand-up routine, mainly) at the hospital, the boys have been in the ever-loving and wonderful care of their grandparents. 

For the first two weeks after surgery, Mojo was single-grandparenting the boys with such ease and competence, there's not even a picture to prove it! There are however plenty of pictures of the dog...

Then last week, Dado popped in to provide back-up... and a little silliness!
So last Thursday, Mojo & Dado escaped unwillingly departed and headed west for a birthday visit with the Etheridges... and Yaya & cousin Susan (aka Thelma & Louise!) pulled in to take over!

It was a seamless transition and they jumped right into the fray helping the boys color eggs, sitting in the cold rain to watch Hamp win his baseball game, and helping Sam inventory all his stuffed animals!

So, when Aunt LaDonna & Uncle Jim came to visit for the weekend we officially had a party!
We all trekked down to the hospital and used our recent road trip capabilities to finally take Jason out to dinner to get some more Red Robin Onion rings - for real this time!


The Easter Bunny found us in Grand Junction - he hid all 65 (!) of the plastic eggs and filled the boys' baskets with fun toys and treats. We took advantage of the beautiful weather to have a picnic lunch at the park and watch the boys (big and small!) play at the playground. 

serious conversations!


Meanwhile, Jason continues to work hard at rehabilitating his body, making small victories every day. Chemo and radiation treatments are still unremarkable. Most importantly, there has not been a single day that a friend has not stopped by to say hello and visit with us. Greeting cards plaster the walls of our hospital room and constantly remind us of how many people we love and cherish. There are so many thoughtful words of encouragement and inspiration and friendship written in every card, but I have to share one phrase that has meant so much to me recently:

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.

Wednesday, April 16, 2014

Road trip!

So, I realize my "road trip" metaphor may be getting a little tired... but it just remains so applicable it's hard to resist!

The irony is that we were able to take an actual road trip this week - no metaphor necessary!

The physical therapists have helped teach me safe & proper techniques for getting Jason from one place to another (he's a fall risk, you know!) and once we figured out how to get into the car it was a whole new ball game...

... specifically Hamp's Little League ball game!




There was so much much to be grateful for: 
• Hamp & Sam got to love on their dad!
• Jason got to see his son play ball!
• Hamp caught a sweet pop fly at second!
• Friends brought hotdogs and snacks to the game so we could all (ball players included!) stay nourished! (although Jason said the "beer man" at the Rifle public ball fields does not do a good job!)
• And for a few hours last Wednesday night, Jason was able to get out of the hospital and get back to "normal" doing one of his very favorite things with some of his very favorite people!

Monday, April 14, 2014

passengers

We are not on this journey alone.

First, take 3 minutes to get to know Kid President:


(I highly encourage you to spend another 3 minutes watching this Kid President video!)

Second, check out this special Kid President video:



Wanna know how that happened?
There are just really cool people in this world, that's how.
Thanks, Ohana!



Sunday, April 13, 2014

The first mile!

It seems that we have chalked up our first real mile of this road trip...

We have made it through the first 3 days of radiation/chemotherapy, and have been continuing to see daily improvement in Jason's motor skills and vision as he perseveres with physical therapy.

But more importantly, we have had a week of fun! 
(I know, radiation and fun don't normally belong in the same sentence.)

Jason's enduring enthusiasm and mantra of "choosing to have a good day" permeate the hospital walls and effect everyone who comes in contact with him. Consequently, he made a lot of new friends this week! 
The EMT's who transfer Jason from the hospital to oncology were so enamored with him they brought him a box of Red Robin Onion Rings for a snack on the ambulance ride back to the hospital! 
The Radiation nurses love the fact that he refers to the treatment as "the Pink Floyd laser light show".
And the nurses and therapists in rehab enjoy Jason's new term for them when they discretely assist him with his bowel movements: "poop ninjas"!

Seriously, we have laughed and laughed more this week than we have in a long time - and I am convinced that it will ultimately have as great a healing effect as all the lasers they shoot at his head!

First day of radiation aka Pink Floyd laser light show
The mask keeps Jason's head in the same place every time, and treatment takes approximately 5 minutes!



Jason enjoyed his special snack after his first radiation treatment! A big thanks to the GJFD and EMTs that day (names withheld to protect the devious!)


Let me back up a minute.
The week definitely was not all about new friends and experiences...

At the beginning of the week was the NCAA championship game - a nationally televised sporting event that no one should watch alone! So... a bunch of Jason's buddies came to his rescue and showed up for the game with a case of Coors and 40 hot wings! Though the beer was unauthorized and the wings were deliciously messy, (and the game was not one that any of us had any buy-in to) it was the company of good friends that made it an excellent evening.


Then there was the awesome gift given by another good friend - an in-room mani/pedi complete with purple toenail polish (Go Furman!) and a good, long foot rub!


By the end of our week we had had plenty of good friends stop in for a visit, plenty of new friends to laugh with, and plenty of funny new inside jokes and experiences.
(although, one thing Jason is now missing at the end of the week are about 2 dozen staples in his head!)

And since all's well that ends well... what better way to go into the weekend than with your brother!!!
the Hightower boys ♥

Monday, April 7, 2014

Put the top down

If this is the road trip we are taking, we might as well make it a good one!

This weekend was awesome... I brought the boys (even the furry one!) down to see Jason and Yaya & Papa, too! We visited in the room mostly, but when it got crowded we took a little field trip outside.

Saturday gave us some warmer, sunnier weather which was perfect for a picnic.
(A quick phone call to Papa John's pizza and we were in business! Now there's something that you don't get on the hospital menu!)

With the addition of a little vitamin D therapy, Jason was able to enjoy some good food, family fun and even friends who came by to visit! Papa & Yaya brought a kite, friends brought the boys some bubbles, Gabe was happy to be outside... it was all good.



The boys loved being with dad, but were especially excited to be with Yaya & Papa! We took walks to explore the hospital, had snacks in the cafeteria, enjoyed milkshakes & hamburgers at Red Robin (sorry, Jason!) and got some good snuggle time in with dad.


Friday, April 4, 2014

I can't drive 55

This has been a week of serious rehabilitation for Jason.

While we anxiously await the start of chemo/radiation therapy next week, the focus is now on re-forming all the neurological connections that were lost in the surgery - specifically the use of his left side!

Everyday consists of 3 hours of Physical Therapy, Occupational Therapy and Speech Therapy (although his actual speech is pretty clear, the therapy focuses on vision and fine motor skills).
His therapists are wonderful. I mean, patient as saints.
And they are working Jason over! (which might make some people smile...)

Although therapy is so far quite successful, it is also very incremental and success is rated in little, baby steps. And though he still has good humor about his current limitations, it turns out he does not have the patience for the small successes...


Nearly everyone on the rehab unit is a fall risk.
But when you are stubborn and impatient and assume that just because you have had 2 days of good physical therapy that you can hop up out of a wheelchair and plop into bed because you are tired...
well let's just say that Jason's new goal is to always call a nurse or therapist for help moving!

So while I was lacking empathy for his poor choices and new restraint system, his parents were on their way from Tennessee to come see their boy!

I am grateful for so much lately... but especially for these two folks who naturally wanted to be here and stay with Jason to keep him company and be a part of his healing.

And even though Jason can't get out of bed without the alarm going off now, when he does get help he puts that can-do-it attitude and strength of spirit to good use:
(credit Papa for sending me the video! It made my day... )


We all want to speed through this long stretch of highway, but apparently we are going to have to slow down and appreciate the scenery along the way!