Back to the Future Day

Conrad was an intelligent kid. I'm pretty sure he would have majored in the sciences if he stuck around long enough to go to college. He had a great love and compassion for animals and would often bring a new creature home to live with us. You name it: fish, frogs, birds, lizards, snakes, rabbits, even our dog Misty. Conrad always seemed to find a way to convince our parents to let us "keep it". 

He also loved computers and computer games, and I could easily see him going into the computer science field. He loved music and singing. He had begun teaching himself hymns on the piano and even writing and playing his own songs on the guitar.

We used to trade basketball cards and we bargained and swindled until we had built up a pretty substantial collection. He loved being active; basketball and roller-blading being two of his favorite activities.

At times it was hard to be his younger brother because one day he'd be my best friend and the next weekend he was 'too cool' to have anything to do with me. At the time it was devastating but I understand it much better now.

In simple terms Conrad was fun. He used to tend our younger brother and sister. Aside from the heaping pots of macaroni and cheese and the learning activities he came up with he also had a very serious rule, "HAVE FUN".

On a day when so many are thinking of time travel, I am also contemplating what I could do if I could go back in time. You see,17 years ago today my brother Conrad succumbed to his demons and took his own life. A life full of meaning and purpose and yet the clouds were too dark, the pain was too strong. He has now been away from us, just as long as he was with us and it still hurts. I never did get to to say goodbye to my dear brother. However, as with many things in life, this tragedy inspired a me to write a song.

Click Here to Hear "I Never Got to Say Goodbye"  

Now I find myself fighting for the very thing that my brother was desperate to escape, mortality. I can't tell you everything that lead up to Conrad's decision to jump from that overpass. If I could time travel that is the first place I would go. I would tell him how much I care, that his life matters to many and how much we love him.

I don't currently own a nifty time traveling delorean, but I can live every day as if it were my last. I can reach out and be kind. If you know someone who is truly struggling don't wait. Let them know they are loved. Help them get help. Don't wait for someone else - it may be too late.

One thing I've learned as I've struggled through cancer treatments is that there is so much good in the world. There are so many good people who want to and are driven to serve by the light of Christ that burns within them. 

Remember these words from one of my favorite recording artists Dave Matthews,

Gaucho  

"Gotta do much more than believe if you really wanna change things! 

Gotta do much more than believe if we want to see the world change! 

Gotta do much more than believe go on and try it go on and try it! 

Gotta do much more than believe if we want to see the world change!

The Worth of Souls is Great

Family Pics 2015

These pictures mean so much to our family as Marshall is in the middle of his fourth fight with leukemia and is preparing to try t-cell therapy for the second time. He puts such a big smile on his face even though he's not feeling well. 

We give credit where it is due to the amazing Heal Courageously Peeps! Thank you, thank you Michelle and Alex. We really enjoyed our time with you and are in awe of Alex's amazing skillzzz. Please check them out at http://healcourageously.org/ and like Heal Courageously on Facebook. If you or someone you know has seen the 'darker side of life' and are struggling, they can help you see some light again. At least the light of their camera flash.

RAINY DAY BOOK

        Kezman is four and his self-proclaimed favorite book right now is:

I love that he loves this book because it displays his optimistic attitude that he gets from his daddy.

He's reading it to me right now so I can type it for you:

"When Mom says, I HATE RAIN,

Nate says, Rain Brings Frogs.

When Ben says, Not enough,

Nate says, Enough to share.

When his sister says, It's SO UGLY,

Nate says, It's so warm.

When Charlie says, KEEP OUT,

Nate says Room For All.

When dad says, MUD, MUD, MUD,

Nate says, Rainbow, Rainbow, Rainbow.

When Casey says, I lost,

Nate says, I finished.

When Liz says, I NEED MORE,

Nate says, I need one.

When his friends say nothing to do,

Nate says enjoy the view.

When everyone says We see clouds.

Nate says, Behind the Clouds I SEE SUN!"

You Choose Your Tude

As things stand I have yet to have a cancer free sample of my spinal fluid. Last Thursday's sample showed one - that's right one - blast (cancer cell) and this Monday's sample only had two blasts. Considering that my lab results from a month ago had nearly 100 blasts I am definitely close. We will continue to do injections of chemo every Monday and Thursday until we can get a "blast free" sample. At that point my doctor explained that we can do a longer acting chemo and take a break from the LPs for a couple weeks.

Allow me to explain why it is important that my spinal fluid is clear of cancer before I undergo the t-cell treatment: After one receives the t-cells and they begin to destroy the cancer cells they kind of go crazy. This reaction is called Cytokine Release Syndrome. The fear is that if I have cancer cells in my spinal fluid (this is also my brain fluid) it could cause significant brain damage/neurological issues.

The FDA has yet to approve the new protocol for the t-cell treatment. As I understand it, if I'm not the first, I will likely be the second human to undergo this new treatment that targets protein marker 22 instead of 19. The other major change to the protocol is that they are administering the t-cells in three incremental doses rather than one.

Not only is it frustrating waiting for the FDA and for my spinal fluid to come out clean, it's scary. Scary because I have tumors growing in my arm and shoulder. Scary, because the chemo that I am taking is causing my hands to cramp painfully and get stuck in strange twisted positions. Scary, because the more time that passes the more leukemia grows in my bone marrow. 

That said, I would like to share a quote from Victor Frankl's Man's Search for Meaning, "...everything can be taken from a man but one thing: the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."

In short, as a co-worker of mine used to say, "You choose your tude." This has been my challenge each day - to remember that I may not be able to control many of my present circumstances but I can choose how I react to them. I can choose to find the goodness in each day.

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.

Limes to Limeade

We want to thank Jillian for giving us the opportunity to speak about turning lemons into lemonade in front of some people who also have had a lot of lemons handed to them in their lives. I haven't made a whole lot of lemonade (unless it's the pre-mix where you add water) but I have made a Brazilian drink that I consumed a lot on my mission called limeade. In Portuguese, it's limonada, so it sounds like lemonade. Except you use limes, not lemons. Lemons are pretty expensive right now, so why not go for the limes? Brazilians actually include the most bitter part of the lime in their recipe- the rind. All of us in our lives have bitter parts (rinds). It all depends on how good we are at sweetening things up (but not too much) to make our lives happy. Some ingredients are essential to make this limeade delicious. They include lots of Creme de Leite (sweet and condensed milk), sugar, and a seive (strainer). Similarly, some things Marshall and I have tried to make our bitter lives sweet include optimism/positivism, humor, and the gospel or an eternal perspective.

Marshall has had rind after rind after rind thrown at him lately.

The latest updates include that he has been experiencing a whole lot of pain with little break even with the use of 2 pain patches and constant pain pills. The scheduler called yesterday to tell him he had to meet with the pulmonary specialist due to "persistent pneumonia". He finished his second round of blinatumomab Tuesday night and we are praying a break from the biotherapy will give him a break from his pain for at least 10 days until he starts blina again. Seeing him in pain constantly for so long has really taken its toll on me as well. In previous treatments, he can at least get some relief for a while. This pain has been the hardest and longest yet and it kills me that I cannot take it away from him.

We were in contact with Penn yesterday and they said to keep him on the biotherapy and if he is in complete remission when September comes that we will deal with it then. If he is not our plan is for us (maybe just Marshall for a while since a caregiver is not required and we have medical debt after all the years of treatments) to fly to Pennsylvania yet again and try t-cells yet again. Maybe that means we will have to wait a while until some leukemia comes back to try t-cell therapy again? They think the best way to treat him at this point would be to try a different marker on his cancer cells. The 22 marker instead of the 19. This means his t-cells have to be re-engineered differently than before and he will probably be one of the first if not the first to try a new marker. So many times I wish I could be omniscient. Or at least have a little crystal ball that will help me plan for the next step.  

Job 5, "Behold happy is the man whom God correcteth: therefore despise not thou the chastening of the Almighty. For he maketh sore and bindeth up those he woundeth, and his hands make whole". The next verse goes on to say he'll deliver Job in 6 troubles. This is our fourth fight with cancer, so I figure we have a couple more rounds if we even want to compare to Job's troubles but we have found solace in his words.  

We hope for one day when we aren't spending all our time fighting for his life. A time where those rinds that keep being thrown at him are strained out after going through the chaotic blender of life. We are slowly realizing that you just can't wait for all the bad things to go away to do the good. What if it never goes away? What if God places the bad things in the world to teach us that those lime rinds are a necessity to his recipe and our job is to learn how to sweeten them up as much as we can! Marshall is much better at this than I am. I'm learning. When things go wrong, instead of becoming bitter, sweeten it up! Here is a recipe for Brazilian limeade if you'd like to try it this summer:

Brazilian Limeade 

(Limonada Brasileira) 

Ingredients

(About 4 servings)

• 3 limes, washed and quartered
• 8 cups of cold water
• 1/2 cup sweet condensed milk
• ½ cup of sugar, or to your taste
• 1 cup ice cubes. plus more for serving

Directions

1. Place the quartered limes in the blender with the water, ice and sugar.
2. Blend on high speed until smooth, 3 to 4 minutes.
3. Strain the limeade through the sieve and press on the solids until only a dry pulp remains. Pour the liquid into a pitcher, add the sweet condensed milk.
4. Mix well, add more ice and serve immediately or serve with frozen strawberries! Enjoy!Note: if you try this recipe and it's just too bitter for you, try removing the rinds first ;)