MY WHY

Hello world! It's been about three weeks since my last post. I hope I didn't depress everyone. I was pretty bummed out to find that my leukemia made its way back into my brain fluid. This frightened me because I do not want a recurrence of the facial paralysis I suffered last summer - which I am still recovering from - but things are much better as you can see from this comparison...

August 2014

August 2015

My smile is still a little "slouchy" on the left side but we're getting there. Luckily Amanda is absolutely adorable no matter what so she helps even things out :) 

As mentioned in my last post we have proceeded with the spinal taps twice a week and although yesterday's sample was not quite cancer free, we are very very close. Once we get a month of clean results I will be able to proceed with the t-cell treatment back east.

As a matter of fact I spoke to the research nurse in Pennsylvania yesterday and she said the F.D.A. is likely to approve the new protocol for my treatment sometime this week. As soon as it's approved I will fly to Philly and sign the consent. Once the consent is signed they will begin re-engineering my t-cells in the lab - a process that can take about 4 weeks. 

If we can time it just right I will get my 4 weeks of clean spinal taps during the same 4 weeks they are engineering my t-cells and we won't give the leukemia any exra time to cause trouble. The odds of us pulling that off would be pretty incredible - but here's to hoping!

Speaking of my leukemia causing trouble, last week we found another tumor growing in my right forearm. Not only does it hurt, but you can actually see a large bulge developing on my inner tibia behind my wrist.

Yesterday we blasted this tumor with a little more power than my last one. Hopefully it works too because that's my guitar strumming wrist! The radiation has left me a little nauseated/wiped out but hey if I can "run" a 5k with a bag of chemo going I think I can handle this ;)

Not to brag or anything - if you want to know a real hero you should meet my friend Derek Fitzgerald. Not only is he a cancer survivor, the chemo messed up his heart so bad he had to get a new heart as well. You'd think it'd be enough for him just to get up and eat a bowl of cereal in the morning but this guy decided to run Ironman triathlons! Seriously, he just finished one this summer. They call him the 'Tin Man' because he is a heart transplant recipient. He and his wife LeeAnn helped us out through some of the tough times in Philly last summer. We adore them and their sweet daughter. Here we are at the Green Light Gala in March.

I may not be up for an Ironman competition anytime in the near future but I do try to take my dog out for a bike ride when I have the energy. Recently, the following song popped up on my playlist and gave me an extra ounce of inspiration to fight the battle:

Fight for Greatness

"Come alive, who are you to think it's over

Fight the fight, discover what you're really made of

There is no try, this battle is raging

Choose your side, this is the fight for greatness

Oh this is critical and I choose life

All life is beautiful and I choose life"

Jeremy Finlay - Bloom

Although the chemo, radiation, and spinal taps have been grueling and unpleasant I have recently been guided by this bit of wisdom from Neitze, 

"He who has a why to live for can bear almost any how."

With that in mind I would like to share a couple stories with you that will give you a glimpse of MY WHY. 

Three weeks ago (the same day I was released from the hospital) I was scheduled to perform at the American Cancer Society's Relay for Life for Davis County. About 20 minutes before I went on stage Miss Davis County sang, "the sun will come out tomorrow..." 

Then it was my turn; unpracticed and feeble from a long stay in the hospital I took the stage and began to sing. After about three songs a huge wind surge blew the microphone stand right off the stage and rain began coming down in sheets. We packed my guitar and ran for the parking lot to take refuge in our car as waves of rain pummeled us from the side. 

Drenched and shocked from the ordeal our little family giggled and joked as we waited for the storm to settle down before we drove home. Thanks to Kezman's Grandma Hunt we had warm banana bread and hot chocolate when we arrived.

The next Friday I was scheduled to play at another event - this time in Weber County and true to the lyrics of the song the sun did come out "tomorrow". The best part - having these two with me rain or shine :)

And finally, about a week ago after putting Kezman down for bed I slouched down into the couch to watch the evening news and wind down. As soon as I was nice and comfortable I heard a soft, little voice from the hallway, "daddy?" expecting his usual 4 year old antics to delay bedtime I ignored the quiet plea. Fifteen to twenty seconds later, still soft and tender, I heard it again, "daddy?" This time I relented, leaving my comfy perch to find out what excuse Kez had come up with to stay up.

In one of many moments where my child has become my teacher he humbled me with these words, "Daddy, I'm scared. Can you show me how to pray for the Holy Ghost?" I put my hand on his shoulder and we walked back to his bedroom and knelt in prayer asking for the Holy Ghost to bring comfort, peace, and protection. With tears in my eyes I tucked my little guy back in to bed and he slept soundly through the night.

Oh how grateful am I for my beautiful family. For tender and lively experiences that leave me surprised by joy amidst a backdrop of uncertainty.