Friday, December 19, 2014

the x-bow

Sam is still our gymnastics star!

He has been improving his skills in a Wednesday night class out of town... which isn't bad when the carpool includes these wonderful kids:
the Meeker crew
It was 'parent observation night' this week so I dutifully sat and watched in amazement at the discipline and rigor of a full hour long of instruction! I managed to catch a minute or so of floor exercises, a little beam and some vault... but he does much more in class and it's all impressive (well... to me!). There's no telling if he will continue to be passionate about this sport - and whether he ends up an Olympic gymnast or just that cool kid that can do a standing back flip at parties one day... as long as he is happy we will continue to support him!



Sam was quite proud of his fall semester.
He was excited to show off for his family - so much so that in referring to the special night as his gymnastics expo, he made sure to write it himself on the calendar... (thus the title of this post!)

Wednesday, December 10, 2014

Just enjoy the ride

Since coming back home after thanksgiving, our adventures have taken on a different feel...
Jason's latest MRI shows more cancer in the brain.

The oncologist was quite frank about the findings, as if we should have been expecting this all along.
I'll admit, we (at least I) never expected a miracle cure...
But to find out that the chemotherapy did not slow the growth of the cancer cells was crushing.

Our treatment options at this point are almost exhausted.
  • There are clinical trials still, but not only would Jason have to 'qualify' for any of them, but then none of them guarantee any success or extended longevity.
  • There is another chemotherapy drug - Lomustine - that was offered, but we can't help but see this as a last-ditch effort that will not turn around the prognosis but rather rack his body with side effects and additional ailments to gain merely a fraction of additional time.

Considering the original diagnosis was Stage 4 cancer - we feel as if we have done everything possible to combat the tumor growth:  we have surgically removed the tumor (sustaining a stroke and paralysis in the process), radiated his brain, taken double chemotherapy: Temodar and Avastin, used Frankincense oil and Turmeric spice... so while there are hovering feelings that by stopping medical treatment at this point we are effectively 'giving up' or 'not fighting', we do hope that our struggles over the past 8 months (and the fact that we didn't move to Oregon!) are testament to Jason's effort to be more than his diagnosis, and to enjoy life in every way.

So we are re-calibrating - yet again! - and trying to find peace in this journey.


In some of my most existential moments through all of this I have flat out asked Jason, "What makes you happy? Why do you live?" and his answers have both humbled me and rejuvenated me. He responds, "My children... and people."

And he means everyone. His immediate family, closest friends, co-workers, associates, old friends, everyone. His relationships with people are his raison d'ĂȘtre and he truly does perk up when he can join a conversation or participate in a good joke.

To return to the road trip metaphor, I would have to say that at first I thought maybe it felt like we were taking a Thelma & Louise approach to our journey... or maybe running out of gas... or maybe lost along some desolate stretch of highway with no hope for reorientation?

But then I took a deep breath and realized the truth:

We are on a party bus!!! (of course we are... It's Jason! He'd have it no other way!)
This bus will drive indefinitely... and eventually (hopefully not too soon) this bus will pull off the highway and drop Jason off at home. He'll disembark and then the bus will continue on, we will all keep driving down the road until it's our stop approaching.


So naturally, we spent the past weekend doing what we would have normally done - the annual Christmas Tree hunt (and family Christmas Card photo opportunity!) in the National Forest. While I was having trouble getting in the Christmas Spirit overall, Jason had no hesitation to get a real tree. So despite feeling weak, tired and nauseous, Jason made the car ride up bumpy dirt roads and across creeks and up snowy hills to where we could let the boys and dogs run amok and laugh and visit while hunting for the perfect tree. And while I questioned whether it was even a good idea to take Jason - in the cool weather with no comforts of home - turns out it made him happy. His comforts are found in moments like these, with his friends... on the party bus!

Tuesday, December 2, 2014

family & friends

Our Thanksgiving weekend trip to Knoxville was the BEST adventure we could ever hope for!
the Hightower family ♥

It was important for Jason to make the trip - for many reasons.
Perhaps the biggest reason was so he could hug his grandmother, who celebrated her 90th birthday last week!

But more than that, it was to see ALL his family - all together.
Aunts, uncles, cousins, brother, nephews & niece...

Speaking of those nephews & niece - Hamp & Sam were SO excited to see their cousins!
In fact, the only photo that I was able to get of all the kids standing still was a side shot from our family portrait session with photographer Jessi Ringer (beautiful, beautiful family photos to share soon...)
Otherwise, these guys were busy playing foosball, building forts, making up plays, or building a bridge across the creek in the backyard!

Another big reason to trek eastward for the weekend was the mini-high school reunion that was being planned... Jason really wanted to see these people. He loves them so deeply and is so touched by the support they have shown over the last several months!

The gathering was wonderful - full of love and plenty of inappropriate jokes. (thanks, Lance.)

And I was able to see this:
25 years and they haven't changed a bit...


The photo below, however captures the essence of why we live, why we fight, and why we travel.
To sit around the dinner table with our family that is spread across several states - with uncles and aunts and cousins we don't see often enough; with brothers we love and miss dearly every day - to eat, laugh and know that we are family.

Thursday, November 27, 2014

Thanksgiving


This year, I am thankful for family, friends, and community for everything they have done (and continue to do!) since March. This adventure would be less wonderful if we were traveling alone...

Speaking of traveling - we're headed to Knoxville for the long weekend! I am thankful that Jason is feeling strong enough to make the trek East and excited to see the whole Hightower clan!

Happy Thanksgiving! 
Peace

Monday, November 10, 2014

balance

Finding balance is difficult when you feel like you are on a roller coaster of physical and emotional well-being!

For Jason, the struggle continues with the effects of double chemotherapy causing side-effect on top of side-effect. And while doctors prescribe medicines and chemicals for each symptom, it's frustrating not truly knowing the cause of each malady. Headaches may come from low potassium, chemotherapy, lack of sleep, post-radiation edema, or a growing tumor. Or the flu. Who knows. What's most disheartening is the weakness in the body - for the more strength he loses the less able he is to stand or walk or sometimes even sit up.
Without that physical balance, he has found himself a few times on the floor. 

And therein lies my struggle for stability: when the headaches (and other various side effects) come I unravel into a ticking time bomb of anxiety, grief, panic and frustration at not knowing what to do. Fortunately, Jason has developed zen-like levels of patience throughout all of this and so he simply waits for me to finish melting and then he encourages me to press on and/or take a nap! Even in his infirmity he is my rock.
But without that emotional balance, I have found myself a few times on the floor.

A perfect example of the roller coaster we are riding is our experience this weekend:
Jason developed bloods clots in his lungs that showed up on a chest X-ray and CT scan. And what was a truly frightening moment eventually played into a peaceful and restorative weekend. Even though Jason spent the weekend in the Meeker hospital, he was able to rest well, eat well, and be wonderfully cared for. And when the boys and I weren't hanging out in the hospital room with him reading books, watching football, or sneaking ice cream cups from the nurses, we took in a high school playoff football game (where the Cowboys were victorious again!) and even a trip to the movie theater to see Big Hero 6!


So the joy found in all of this turmoil is in the days, moments even, of lucidity and energy when we can catch glimpses of some kind of normalcy. We can all appreciate with greater depth the laugh of a joke, the tenderness of a touch, or the sweetness of a sound (specifically the sound of Hamp & Sam laughing and playing well together!)

We have learned to seek balance when we desperately need it - Jason has therapists and friends and family who are there to lift him up (literally) and for me, there is always peace in a walk in the woods. 

Saturday, November 1, 2014

the dolphin and the morph

Here is Sam, the dolphin!

And here is Hamp, the "morph"?!

They were very specific and insistent on their Halloween costumes this year, which was fine as it made preparations easy for me! 

I love that Sam's explanation behind wanting to be a dolphin was simply:
"I was a Panda last year. I want to be another animal."
That explains everything.
Regardless, he found his buddies and got busy trick-or-treating until his tired little fins wore out!

And as somewhat odd and unique both costume choices seem, you would be surprised that the morph suit (or full body suit) was quite popular this year; and Hamp and his fellow morph buddies (pictured below in blue and red, minus masks) along with six other 5th grade compatriots of various clever costuming spent the whole evening travelling as a pack of hard core trick-or-treaters, covering a lot of ground and filling their bags to near arm-breaking capacity!

Hope everyone had a fun and safe Halloween!!!

Thursday, October 30, 2014

Pumpkins, pigskin & pals

We are in full autumn-mode lately with all the fun activities that October brings...

Of course - the boys were so excited to carve their own pumpkins this year!
(and they insisted on leaving the jack-o-lanterns standing guard at our house... hope they don't frighten off the workers!)

Then Hamp wrapped up a fun few weeks of flag football - and while he complained that the local, Rec League program wasn't 'competitive' enough, he certainly didn't hesitate to put forth his best effort at scoring and playing hard!

Gabe wanted to play flag football, too!!!

But the best part of all has been those perfectly sunny yet cool fall days when you don't have school on Friday so you hang out with your buddies on the courthouse lawn and play a game of shirts vs. skins or hide-and-seek or maybe just roll around in the grass and be silly!