Tuesday, August 25, 2015

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:



"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.

Wednesday, August 5, 2015

"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.

Friday, June 19, 2015

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 ;)

Saturday, May 23, 2015

Funny Things

Because it's too depressing to talk about cancer and all Marshall's pains and time in the hospital (sorry I'm really needing some support right now in that department), I wanted to list some great things Kez has done this past week:

1. One afternoon before taking Kez to see Marshall at the hospital, he was taking a bath to be clean and hopefully a little less germy before going in when suddenly he asked, "Mommy, why did Jesus give us belly buttons? I cannot figure it out, what do we need a belly button for?" He was so very stuck on what the purpose of a belly button is that I finally said, "Maybe he made it so you would have some fun poking your finger in it". He just laughed and kept wondering.

2. Kez has a little sock monkey and he has named him "Idiot". Yes, he named him himself and no I have no idea where he even learned that word. I also can't remember who sent us this particular gift, but the monkey came in a package from a dear neighbor while we were in Pennsylvania last fall. We always start laughing when Kez talks about him soley because of his name. Yesterday he did something very adorable with Idiot though. He laid him in his bed and came and told me that Idiot was very sick. He took his doctor bag (which I DO remember who sent that to us, thanks Maria!) and started checking out the monkey's vitals. After putting on the blood pressure cuff, he said his monkey weighed way too many pounds and after using his thermometer he said that Idiot had a fever just like his daddy. It was so adorable that I Facetimed Marshall at the hospital and he got to see some of it too. Our little future doctor :).

3. This morning when I asked Kez what he wanted for breakfast he insisted that he wanted green beans! "What?" I asked, "Don't you want cereal or pancakes or waffles? Anything but green beans?" Nope. He wanted the beans. So I heated them up and he almost ate a whole can! He's asked for sandwiches for breakfast before, but this was a first.

A quick summary of what's going on with his daddy Marshall is that he was admitted at the beginning of the week to start a second round of blinatumomab. He's been having unexplained pain around the clock for a while and has also been taking pain meds around the clock. He noticed pleurisy pain right before going in since he has had pleurisy before. They did a CT scan and found opaque spots at the top of his lungs. The pulmonary specialist was very concerned and thought it might be fungal, which is difficult to treat. They did a broncoscopy and are still waiting for growth. One virus did grow and we are praying that is all that will grow. This morning he had new, sharp pain on the upper left side of his chest so they did another CT scan. The scan didn't show any blood clots or heart issues, but he still has the opaque spots in his lungs. He just got off a pain pump yesterday, but is now on a fentanyl patch and a few other pain medications. 

Wednesday, April 8, 2015

Fight on! Round Four

We have been putting off and dreading this, but Marshall's leukemia is back for a fourth fight. This relapse hit us hard. Even doctors and nurses thought Marshall was cured and weren't running blood tests on him. Similarly to his other relapses, we knew before checking in due to pain and night sweats.

The remission only lasted five months this time so being back in the saddle so quickly has put a lot of stress, financial burden and physical burden on Marshall. We are fighting every day for a plan! For a crack at this t-cell thing again. Usually, the Philly doctors would not try again, but Marshall's case is unusual in that he was accidentally in complete remission before they gave him his t-cells and he had no cytokine storm. We flew to Philly and yes! His doctor thinks it's worth another shot! It's a lot more complicated than that though. The FDA is regulating this trial and in order for us to try the t-cells again when Marshall is not in remission, the FDA has to be petitioned and a whole new protocol for Marshall has to be written. So as of now we are trying to buy him some time for all that to happen if possible. It's a little tricky with an aggressive, chemotherapy-resistant leukemia.

The plan is now high dose chemo and blinatumomab to try to keep the disease at bay. The blinatumomab and chemo have been really hard on his liver and we had to stop treatment to give his organs a break.

We are very happy that he can try the t-cell therapy again, but getting there is proving to be difficult. Marshall's body is soooo tired from his long fight and is definitely more beat up and not as
up-beat this round. We are trying to distract ourselves with other happy things and not let cancer take over every moment. It's a bit hard when you are in a hospital for weeks, but we have faith this blinatumomab can work again and that Marshall can get through albeit with some bumps and bruises.

Philadelphia collected his t-cells for a second time because the way they administer them is being done differently: in 3 different doses, starting with a smaller dose and ending with a larger. Marshall had one small dose- 1/10th of the units they initially planned to give him. We also have faith that this immunology could still work! If it does not, our back up plans could be stay on blinatumomab until it stops working or even try a haploid transplant. Marshall doesn't know how to give up! He is fighting on and has all my love and support.

Our wonderful friend Matt is helping us start a fundraiser: "Give 'till you FEEL it". He's amazing and we are amazed by our family and friends that have stuck by our sides through the years of difficulty and burden. They have helped us lift this heavy load and are truly workers of Christ on the earth as they have helped make our heavy burden light. I loved during general conference when a speaker said people are sent from God and ordinary people are working as God's hands when they make ordinary gestures.  We are so grateful for the people who have truly born the burden with us. It's hard for me to see some friends disappear with time. The road seems to get a little more lonely for me each relapse. It may be because our story is getting harder to tell and live. I'm reading a care giving book right now that suggests that people just don't know what to say or do. It's hard to relate to a difficult journey sometimes when you're trying so hard to keep yours happy and full of life and light. I understand that some people simply process it differently or just can't process it. Most days I wish I could ignore it all and not have to deal with it too.

We did have one marvelous day on Friday, March 13th. Marshall received the honorable Nicholas E. Calleluori award for being relentless. You can read about it and watch his speech here: http://www.utahlacrossenews.com/2015/03/nicholas-e-colleluori-award-honors-utah-man-at-headstrong-gala/
also the video that was made while we stayed at Nick's house: https://vimeo.com/109292530. His facial paralysis has gotten much better and is mostly just on the left side now. We LOVE our HEADstrong family! Check them out by clicking here: HEADstrong. That night gave us the determination to battle on for the fourth time.

Marshall was able to fly to Texas and re-baptize his brother Jordan which also put us on cloud 9 that weekend! What a miracle! I love the hope that comes from the atonement. Marshall is going through so much physically now and has been for years. Literally, he has been battling death from the front lines. Through the atonement, there will be no scars. Sometimes my cares for this world and battle have choked out God's words and promises and I really need to remember to focus on those at times. Marshall and I (especially Marshall) are very tired this round. We are reaching for and trying to grasp any light we can find no matter how dark or seemingly hopeless this cancer can be. We are trying to find our strength again in that light. It was so wonderful to see friends and family come out to support us at Chili's a couple nights ago! You help us dispel our fears and have some peace. I loved Bednar's talk about being empowered to hush our fears! Some of that peace can only come through Christ and the hope for a resurrection and eternal life. Many people have asked me how I have not gone crazy yet. I find that strength and stability when I believe in Jesus and trust in Him. Even when our lives are not ideal, we have promises in the life to come.

I still trust that God is the architect of our story and hope to help future cancer patients by going through this trial.



Sunday, January 4, 2015

Three years!

"When we doubt your miracle-making power, Lord, show us the ordinary miracles of seasons, of hope regained, of love from family and friends, and of surprises that turn out to be miraculous simply by remaking our lives"

On this very day 3 years ago Marshall was diagnosed with ALL and this cancer crusade began. He's now fought leukemia 3 times in those 3 years and I still find myself staring at him wondering how he is alive after all he has been through. I have learned so much from him and all his supporters. More than I could ever write on a paper, but in honor of those three years, I will write three things I have learned. 

Firstly, to be EVER so grateful for the 'Normal' days. Normal days are actually glorious days in the book of my life now. A day when I can read, clean, do laundry, and actually raise my own child is a glorious day. It's not one spent in a hospital room worrying about numbers, germs, medications, and how many breathes my husband may or may not have left or if my son would know his daddy.

Secondly, God is in charge! I wish I was as powerful as my Eternal Father. I still desire and believe in doing all that I can and learning all that I can and trying to be more like Him and His son. But I am not him. He will direct our paths if we put our trust in Him. He will bless us according to our desires. And He knows what is best for us eternally and not just in our short time on Earth. I have much more faith in Him to take the wheel and steer my life toward the direction it should go and to the people we are supposed to know. He's a way better driver than I am even and especially if we hit some really rocky and dangerous terrain along our way. Sometimes that is when we see the most beauty in the world and in others. Believe in his miracles because they still happen, but mostly he allows them to happen through other people. He allows us to be the actual body of Christ, to be His reaching arms, His healing hands, and His love. Through these means we come to know Him better than we ever would had he reached His physical hand out to heal with one touch in one moment.

Thirdly, our own bodies can be restored. Even from the dust, despair, even death. Restorative powers aren't limited to what has been there before either. Our bodies can be added upon and enhanced in ways never before imagined. Marshall went from having one set of genes to another, and yet another from overseas, to now a completely reengineered (with HIV nonetheless!) cell that lives in his body. Incredible. When the chemo gave Marshall neuropathy in his hands and feet and took away Marshall's ability to play the guitar, I looked to the heavens and thought, "Why would THIS happen!?"  I couldn't fathom how He could take away something that had literally gotten us through some of the toughest days and a most developed talent. Music. Nothing could ever stop Marshall from singing. Until something did. When the cancer made it to Marshall's brain and he was completely paralyzed on both sides of His face. I admit to succumbing to a bit more fear than faith at that point. Probably because the look on most doctors face after seeing his paralyzed one was that of, "this guy is not going to make it". Marshall kept his faith- what a faithful man I married! Sometimes the amount of faith we have does make a difference. I don't believe in can'ts anymore. I'm still baffled that months later, the neuropathy went away in his hands (he still has it in his feet). The right side of his face recovered and slowly every day I am blessed to see tiny improvements in the left side. Restoration! We can all be recovered, renewed, resurrected from the dust. 

In chemistry, there is a law that states for every action there is an opposite and equal reaction. I have sometimes been compelled to move. Actually, a lot in the last few years. First to Houston, then Philadelphia, and finally home. We have met some INCREDIBLE people along the way. You know who you are (Bennett's, Durfees, Edwards, Calleluoris, Fitzgeralds, Gibsons, Goldsteins, Miles2Give peeps, our very own neighborhood and family, Brother Landis, many doctors and nurses, and all the names I didn't add) and I might add have done some INCREDIBLE and incredibly hard things along the way too. Here's to the last three years and to the hope that this t-cell treatment will continue to work without too many side effects for Marshall and that we will get to be able to stay with our son and out of the hospital this year!









Saturday, December 6, 2014

What Happens in Vegas...

It has been said that "what happens in Vegas, stays in Vegas" however, I hope that what happened this last week at the Leukemia and Lymphoma Society South-West Regional Conference gets spread around the country!


Amanda and I were privileged to speak to a number of regional representatives that participated in raising money for the research that saved my life in Philadelphia. We hope they were able to see that the work they do does make a difference and in a very personal way.

Relaxing in our hotel room after the speech.

Amanda spoke first and already had the room applauding before I began. We shared how we met, the shock of being diagnosed with cancer, and the revolutionary t-cell treatment I took part in. I even played a couple of songs on my guitar. I was asked to post the lyrics to the song I wrote entitled, Miles 2 Give:

Last night I witnessed love and charity
I wondered how I would return the kindness I’d received
I found it’s not a debt I’m to repay, but rather how I choose to live each coming day

In this life we all have miles to go
Some move fast and some move slow
Be grateful to your maker that you live
And find within your soul that you have miles to give

Give your time, give your love
You’ll find out you’ve got enough
Be a friend, be sincere
Perfect love cast out all fear

No one ever left this world regretting their kind deeds
Or wishing they had spent less time serving those in need

In this life we all have troubling times
Don’t give up be strong and just keep on trying
Give thanks for every breath that lets you live
And find within yourself that you have miles to give

Give your time, give your love
You’ll find out you’ve got enough
Be a friend, be sincere
Perfect love cast out all fear

When dark clouds fill up your sky and rain begins to fall
Remember there’s a glorious light still shining above it all

In this life we all have miles to go
Some move fast and some, they move a little bit more slow
Be grateful to your maker that you live

And find within your soul that you have miles to give