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.

"It's not a Tumah"

Hello world! I left the blog-o-sphere for a while. As I have been busy going back to work things have been hard. Really hard. Not fun, difficult, and painfully hard. I often feel that I am to be a role model for so many that it is difficult for me to admit when things are hard, when I don't feel well, when I don't have the best attitude or I'm even cranky because I'm in pain. The truth is I have bad days, I'm not always this wonderful example of positivism and perseverance, even discipleship. I need to admit that, I need to come clean in order to move on and tell you what is going on.

The results are in and here's what's up on East 8. My LP came back positive which is negative - LOL. What I mean is that it is not a good thing that cancer is in my spinal fluid. This is also called CNS disease (Central Nervous System).

The problem is that this excludes/prevents me from participating in the t-cell treatment in Philadelphia. We heard from my team in Philly this morning however and the time line has been delayed. The plan now is to do 2 spinal taps (LPs) whatever you want to call it - they take a huge needle and put chemo in my spine - so the plan is to do 2 of those a week until I have 4 in a row that are clean. At that point I will qualify for the t-cell treatment.

Problem #2 - the tumor in my arm. Technically they call it a "chloromas" but it's basically a tumor, a big lump of cancerous cells. This is growing on my right humorous (insert joke here) and is the cause of a great deal of pain. In fact we believe the leukemia has been the main source of the severe pain that I have had in my bones - particularly my joints.

I had my first radiation treatment on my arm this morning. The radiologist explained that leukemia has a difficult time with radiation and that he expects it will be quite successful even at a low dose. I have another radiation treatment tomorrow and the 3rd and final session on Friday.

The last test result that we received was an update on how much leukemia was in my bone marrow. After my first round of blinatumomab it was 2%, after the second round it was 7%, this time around it had wiggled up to 9%. In a group of bad test results this was one thing to be happy about. The percentage of disease in my bone marrow has remained low.

So the plan for now is to under go chemo via lumbar puncture twice a week and to attack the leukemia systemically using a drug called vincristine and some steroids. This is not my first rodeo. I'm sure I will lose my hair and feel sick and tired and tired and sick. The best part is that I still have hope. When I hear from Dr. Porter in Philadelphia, and he expresses that he is thinking of me often and when others express their empathy and prayers, I know that I am not alone. I have a team! I love each and every one of you.

Thank you for expressing your concern and using this opportunity to serve our family. I would be the first to tell you that I understand this cancer crusade has been going on for a long time. If you're tired or burnt out, or just need a break I get it.Thank you to all of you and those of you who continue to serve and love. 

I wouldn't have made it this far with out your help and the continuous flowing love of our Savior. To ponder his mercy and love is a gift. I am so grateful for each day. Even the tough days. They refine us, they define us, they make us prove who we really are. I am grateful for my Savior and share this with you in his sacred name of Jesus Christ.

Amen.