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

Wednesday, November 26, 2014

Thanks and Obrigada

This post is completely a post of GRATITUDE and THANKS for the amazing blessings we have received and for every person that has helped us get to the point we are today in the last 3 years.

When we arrived home, our neighborhood greeted Marshall like a true warrior! So many welcome home signs, and big, yellow ribbons tied around all the trees and posts! I couldn't have imagined anything like it and it was INCREDIBLE! Thank You!!

It's been a little overwhelming how Marshall's story has gone viral. He has had reporters from all over the world contacting him, but some stories have not been exactly accurate. I think the headlines like to pick up something that will wow people- as it should because this therapy is amazing and has great potential to cure all types of cancers in the future. We hope his story going viral (or retro-viral as Keith punnily said) will help many cancer patients in the future around the world. Here are some international articles about Marshall found by his mom and us saying thanks in each language. Each story is different, not just a translation to another language of the same story.  You can click translate on their respective pages if you'd like to read them in English:

click to read Germany's article about Marshall and the therapy

Click here to read Slovenia's article about Marshall and the therapy


Ellokepa Sawhay (llokepa saawhe):
Rwanda, Kinyarwanda language


Southern China







Su' cam o'n:


And a few of the many English articles:

Medical Daily

Huffington Post

Daily News

Marshall is doing well. He is back at work and he has already flown back to Pennsylvania once. We are speaking at a Leukemia and Lymphoma Society event in Vegas in December.  His next appointment is the third week of December in Philadelphia and he will have another bone marrow biopsy. Praying it will all go well so we can attend my brother's wedding the end of December!

Again if you are reading this we just want to thank you, thank you, and thank the Lord who inspired the men who truly are compassionate and God-fearing men, to pursue this treatment.

Wednesday, October 8, 2014

The Calm Before The Storm

It has been a week since T-cell Tuesday. Over the weekend I had some flu-like muscle aches and a mild fever. Other than that and some mild headaches, I don't have much to report. Today is day 9 since I received my re-engineered cells. Truth be told they are not exactly "my" cells, they are the cells that were generated by the stem cells I received during my second transplant. I often feel like a walking medical experiment, but hey - at least I'm still walking!

Air-drumming while I ride my bike.
I now have three different forms of DNA in my body (mine plus two donors), in addition to cells that were re-engineered using the Human Immunodeficiency Virus or HIV. Luckily I am not at risk to contract HIV or AIDS. I may however, test as what they call a "false positive" for the virus. You heard it right folks, we are now using HIV to fight cancer!

T-Cell Tuesday!
Yesterday we were privileged to be visited by Dr. June. He is the doctor primarily responsible for developing the medical technology they used to re-engineer my cells. I found him to be a very humble and genuine human being. You can tell that he is earnest in his efforts to find a cure for cancer. 

The medical staff inform me that I am most likely to reach the cytokine-storm between day 10 and day 14. So here I find myself at the top of the waterfall - day 9. Either in tragic irony the cure will kill me, or by some miracle mix of God and science my raft will survive the plunge and I'll paddle from the mist cancer free.

It's a strange situation to be in. There's no turning back now - the cells are inside me and they are going to do whatever they are going to do. As a side note, if you want to see some really cool pictures search, "kayak over waterfall" on the internet :) To close I decided to share a poem that I wrote.

Dust and Blood

Lab coats and acronyms, making rounds, tapping pens.

Flashing, beeping, lack of sleeping.

Tattooed, tagged, poked, poisoned.

Shaved and radiated, scarred and isolated.

Sustenance suspended, pumps and bags. Germs defended, gloves and masks.

Cellular warfare, remission, relapse. Balding, bleeding, syringes and caps.

Still before storm, rain before flood. Clash before cure, dust and blood.

Saturday, September 27, 2014


I just finished what will hopefully be my last chemotherapy treatment ever. Rather than lay back in bed while it was infusing Amanda encouraged me to walk a mile for the Cure Search Walk back home in Salt Lake City. Special shout out to my fellow cancer fighter Madeleine Martineau who also took part in the walk.

Today is technically day minus 3 for me on the Cart19 study. This means that I finally receive my re engineered t-cells in 3 days! Prior to the treatment I'll have a bone marrow biopsy on Monday. We've been joking that this week will start with Supplication Sunday, and then continue to Marrow Monday, and T-Cell Tuesday :)

After I receive my t-cells it is uncertain when or how I will react. Some patients have had a reaction within 24 hours while others it may take over a week. Symptoms and side effects may include: high or low blood pressure, tumor-lysis (too many dead cells clouding up the blood stream and other parts of the body), high fevers, kidney damage, liver damage, and neurological problems. I am facing a whirlwind of dangerous possibilities. Ironically these potential ailments are my path to being healed from this terrible disease.

Last April conference Elder Neil L. Anderson spoke about whirlwinds, both physical and spiritual. He explained that, 

"Trees that grow up in a windy environment become stronger. As winds whip around a young sapling, forces inside the tree do two things. First, they stimulate the roots to grow faster and spread farther. Second, the forces in the tree start creating cell structures that actually make the trunk and branches thicker and more flexible to the pressure of the wind. These stronger roots and branches protect the tree from winds that are sure to return." 

He completes the analogy, "You are infinitely more precious to God than a tree. You are His son or His daughter. He made your spirit strong and capable of being resilient to the whirlwinds.of life." 

Finally, he quotes the following scripture to remind us of the source of our spiritual strength:

Helaman 5:12

"Remember, remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall."

There are days we may all feel like we are being dragged down to the gulf of misery. Whether it be a physical or spiritual challenge that we are faced with, Jesus Christ is the rock of our salvation, He is the Redeemer. He is the Way, the Truth, and the Life.

My battle with cancer has definitely been a whirlwind. Our family has been whipped by the winds of physical, emotional, and spiritual challenges. One personal challenge has been my inability to attend church and worship with my congregation. Notwithstanding, even nearly 2,000 miles away from home we have still been blessed to partake of the Holy Sacrament (also known as Communion) thanks to worthy priesthood holders who are willing to bring the bread and water to our home or hospital room.

I can't express how important this blessing has been in my life. Although, the internet and social media has helped me keep in touch with friends and family, it often paints a picture that is not entirely accurate. I have my sins, struggles, and follies - and I look forward to that weekly reminder to remember my Savior, that his atonement covers my sins, and the covenants I have made with our Heavenly Father.

Sometimes it is difficult to endure the whirlwinds of life. It takes faith in Jesus Christ to realize that it is only through his atonement that this is possible. I am often encouraged by these words shared by Elder Lawrence Corbridge in October Conference 2008.

"Don’t think you can’t. We might think we can’t really follow Him because the standard of His life is so astonishingly high as to seem unreachable. We might think it is too hard, too high, too much, beyond our capacity, at least for now. Don’t ever believe that. While the standard of the Lord is the highest, don’t ever think it is only reachable by a select few who are most able.

In this singular instance life’s experience misleads us. In life we learn that the highest achievements in any human endeavor are always the most difficult and, therefore, achievable only by a select few who are most able. The higher the standard, the fewer can reach it.
But that is not the case here because, unlike every other experience in this life, this is not a human endeavor. It is, rather, the work of God... Therefore, while the Lord’s invitation to follow Him is the highest of all, it is also achievable by everyone, not because we are able, but because He is, and because He can make us able too...
Life is hard, but life is simple. Get on the path and never, ever give up. You never give up. You just keep on going. You don’t quit, and you will make it."
It doesn't matter so much that you fall, in fact you will fall, what matters is that you dust yourself off and keep on going. Life's whirlwinds will come, it may be hard, but if you build upon the rock and endure it well, God will exalt you on high and you will triumph over all your foes.
D&C 122:9
"Therefore, hold on thy way, and the priesthood shall remain with thee...Thy days are known, and thy years shall not be numbered less; therefore, fear not what man can do, for God shall be with you forever and ever."

Monday, September 22, 2014

Dear Nick,

I've heard it said that "life isn't fair" but I disagree. Life is beautiful, painful, joyful and sorrowful but life is a blessing. Death, it's death that's not fair. It's not fair that cancer took you from us. It's not fair that someone so young and active can be afflicted with this disease. You were at the prime of life, a student planning a future with your sweetheart, a division one college athlete, a teammate, a friend, a brother, a son.

I wish I never knew you because that would mean that you may still be here. I wish that I didn't know your story because maybe that would mean that I wouldn't have mine. I wish that cancer considered the circumstances of those it afflicts before it overtook them.

I don't know if I would have been cool enough to hang with you and Michael but I think we would have got along. Growing up several of my close friends played lacrosse and I always enjoyed going to their games. I played basketball in high school and I was a good defender, a "scrapper" - I had to be at my size. My coach used to put me in the game just to shut some player down on the other team. You might even say I was "relentless".

I want to thank you for letting my family stay at your house. I feel privileged to stay here and get to know your family. As you know they are doing an amazing job with HEADstrong. I don't know if you realized how many lives you would change, but your drive and vision have effected countless individuals and their families. The ripples of your influence continue to extend.

I wouldn't be surprised if you're teaching and inspiring others in the world of spirits. I've had the impression that you are allowed to check in on my family from time to time. It's good to know we have a special guardian angel with a lacrosse stick :)

With love,


Sunday, September 14, 2014

Our Hail Mary Pass

The expression began in the 1930's at Notre Dame; the football team referred to a long range desperation pass with little chance of success as a "Hail Mary" pass. When Amanda and I found out I had relapsed again and sought out the CART19 treatment I began joking this was our "Hail Mary" pass. In other words, my cancer and I have been battling back and forth; now it's the fourth quarter and time is running out, it's time for that perfectly placed touch down pass!

As you know from our previous post we had a scary trip to the ICU just after Labor Day. With my immune system at zero I fell victim to a nasty, and nearly fatal infection. I am convinced that the faith and prayers of so many carried us through. I was released from the hospital on Thursday. I am extremely weak, and often tired, but I am alive and grateful.

On Friday I had another lumbar puncture with chemo. We pray it will come back clean as the last three have. We're just trying to stay busy and not worry about the results. We should know by Tuesday. If/when it is clean then we can finally move forward with the T-Cell treatment. Until then I am focused on regathering my strength and energy. I was uplifted by the following scripture this morning:

Isaiah 40:29,31 "He giveth power to the faint; and to them that have no might he increaseth strength...they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk and not faint."

Finally, I am so grateful for my amazing wife/friend/companion Amanda. I often feel that her journey is more difficult than my own. I've received such kind and inspiring words from friends and others but the real hero is my wife. She carries the burden of the unknown, the "how longs" and "what ifs". Trying to raise a son and care for her husband 1700 miles away from home in a strange city. Sleepless nights on awkward hospital furniture with blinking lights and monitors. Managing medical bills and insurance claims, medication infusions and aches and pains. Abandoning all other plans to be a caretaker, fundraiser, and nurse. Yes I may have ALL but she does it ALL. 

I love you Sweetheart, you are the most amazing person I know. Whatever I try to do "it wouldn't be enough" - but I'll do it anyway :)

Sunday, September 7, 2014

I Went Three Days Without You

This week there were three days that were the hardest days I've ever had so far in my life. They even trump the three days I was in the hospital in labor with Kez (I was admitted on a Thursday and didn't deliver until Saturday). We almost lost our dear daddy and husband to septic shock.

Keith, his dad, was taking a turn to stay with Marshall at the hospital one night. Marshall had finished a round of chemo and was waiting for his counts to recover and was completely neutropenic. When I am away from Marshall at the hospital I am not able to sleep well. That night I just finished watching Gravity and Marshall wanted to play a game of Ticket to Ride. That is one way we have to connect on our phones when we are apart and to help the time in the hospital seem to go faster.

We had finished our game around 12:30 am. At 3:16 am Marshall texted me saying he woke up with joint pain and a fever. I woke up right away and texted that I hoped it was a neutropenic fever (sometimes when you have no neutrophils, you get a fever). I asked him if Keith was asleep or if he knew what was going on and he said Keith knew. He proceeded to text about chest x-rays and antibiotics. I fell back asleep and at 5:27 I woke up out of nowhere and texted him to ask if he was able to get back to sleep. He did not respond so I went back to sleep thinking that's what he'd done. Fifteen minutes later my door opened abruptly by Lucile saying "Get up we are going to the hospital. Keith called and they are taking Marshall to the ICU because his blood pressure dropped". I was surprised with how calm I was for the drive, but I do remember saying, "I hate cancer!"

I kept texting and calling Marshall with no response so I knew something was really, really wrong.

When we got to the ICU Marshall was having an "episode". An episode where his whole face and neck were bright red, his blood pressure was critically low, and he was writhing in pain. He said it felt like bursting pressure in his face and neck. It was extremely scary. He was already on 2 vaso pressers (blood pressure meds) and right away they had me as his agent sign some consent forms for a central line, an arterial line, and a ventilator. A doctor came in making sure that Marshall wanted to be resuscitated if he lost consciousness.

Keith and Lucile (Marshall's parents) were there and we were all rushed out to the family waiting room while they did the procedure. When we were finally able to come back in Marshall had a large cable with many protruding lines out his neck. It surprised me because they told me it would go in his chest. The doctor explained they placed it there because it makes it easier to access his vital organs. He was also in the middle of another "episode" explained above and they were unable to give him pain medications because they would lower his blood pressure even more.

They quickly pulled the picc line out of his arm in case that was the source of infection. The rest of the day and into the night his blood pressure was terribly low. I was tense all over. Not as tense as he was. I hadn't eaten and when Keith got us some Jimmy Johns sandwiches in the afternoon I admit it tasted like cardboard, but I ate it knowing I needed to take care of myself so I'm not a bigger burden to the situation at hand. A very kind member of the church came to help Keith administer a blessing to his son. The blessing was promising and for the first time that day I remember having some feeling come back to my body and crying. Up to that point I had been numb without realizing it. Lucile went to take Keith home and said she'd be back.

Marshall asked if his wife was in the room. I assured him I was and kept rubbing his feet so he'd
know I was there and trying to help ease his pain in any way. He requested that I go over his advanced directive with his mother and when she came back we read through the document and his end of life decisions with more tears. I studied end of life decisions thoroughly when I was a teachers aid for bioethics in college yet I admitted to my mother in law that it was different with my own husband. My emotions were raw and I knew that my emotions would play a huge part in making a critical decision at that point. Marshall has chosen me as his agent. Probably due to the fact that I am well educated in this field, but at that moment I understood why someone would back down from that position. The pressure of being an advocate for someone I have known for almost six years and three of those we have been fighting cancer was overwhelming. I didn't want Marshall's family to blame me or hate me if they disagreed on a medical intervention. Lucile assured me that they would support me and discuss the critical decisions if needed.

The night calmed with Marshall's episodes also calming. That reassured the doctors that it probably
was the picc line that caused the infection. Lucile and I both attempted to sleep in that tiny room sharing the one pull out chair. I was not so successful because I kept popping up to look at the monitors with every beep.

The morning brought results of gram negative rods growing in Marshall's blood cultures. For those science nerds like me, detailed speciation would later show the specific bacteria as enterobacter. These bacteria are "pathogenic and cause opportunistic infections in immunocompromised and usually hospitalized patients". It's generally caused by some form of mechanical site and in Marshall's case, they believe it was from his picc line. The lab is still growing his bacteria to see which specific antibiotic is killing it most effectively. I think it's awesome they can do that!

They had to pump liters and liters of fluid through Marshall's system in order to keep him alive while his blood pressure was so low. There is still fluid in his lungs. He is working through that with oxygen, lasix, and a spirometer. The bacteria causes the blood from the heart to shoot through the body system extremely fast so the cells and vital organs do not receive the oxygen and nutrients they need. For two days Marshall's limbs felt cold and clammy. The doctor explained that the body tries to compensate for this loss of blood flow by sending what it can to his vital organs so the legs and arms don't get as much blood flow. His kidney and liver numbers were getting higher and higher. If his blood pressure would have stayed down for much longer, there could be irreversible damage to these vital organs. His numbers are looking better each day but his liver levels are still higher than they should be. We are all hoping these levels continue to improve.

Now you may understand why Marshall feels and looks like he's been "run over by a truck" as Lucile says. I really, really appreciated when the director of the ICU himself came in early one morning to tell me, "Your husband is going to be ok. He is turning around." He also expressed his hopes for Marshall doing the CART-19 trial. As badly as I don't ever want to be back in that ICU again it is very possible after Marshall receives his re-engineered T-cells.

Marshall wrote a song called Ten Days last year when we had to avoid each other completely during his treatment because we were both ill simultaneously. While he was going through his ordeal in the MICU (medical intensive care unit), our communication was nearly non-existent and when he finally did try to talk it was very hard to understand him due to his paralyzed face and lack of oxygen. Here is a little play-off the lyrics of that song regarding this week's experience for me:

I went three days without you, and I nearly lost my mind.
I watched your every heartbeat even when you closed your eyes.
I went three days without my command. I went three days without my husband.
I went three days in a dark and lonesome ICU, and then you stabilized and then you spoke.
And you survived.

I went three days without you and I pleaded with others to pray.
Your name was in the temple at least a thousand times that day.
I went three days without your humor, I went three days without my animator.
I went three days in a dark and lonesome ICU and now you're recovering and now you stand.
And you survived.

When he finally was more aware of his surroundings, I had to get out of there! I had to see my son I hadn't seen for 3 days. I'm grateful Lucile was there so I could do that. There have been some moments as Marshall has fought this awful disease these last few years where that has not even been an option for me. I wondered if Marshall would even know I had been there for all that time because in the past when he has been out of it and I have been there he has come around and asked, "Where were you!?" I've had to explain I was there through the really rough moments but you just didn't know it.

This experience has helped me understand Our Savior a little better and reminds me of the poem "Footprints in the Sand". I know Marshall and our family are being carried by your prayers, packages, temple time, phone calls, texts, and any efforts to support and help bear this heavy load. There's another significance to this poem as well. When Marshall and I were dating, I remember on one particular date as we were contemplating being married for eternity in the temple that we were discussing what we want in our eternities together and what we want to create together. I said I wanted "sparkling silver sands" and he wanted "golden oceans". I know even if he hadn't pulled through this one that we would still have that opportunity to create our perfect beach in the eternities since we are sealed in the temple.

Special congratulations to my parents who are celebrating 35 years together today! So sorry that mom is here with me dad. I couldn't imagine getting through this last week without her here to help with Kez at any moment. "There will be nothing in this world that can defeat us" Thomas S. Monson. We could probably even create that sand and water now with the right materials and chemical reactions. Maybe even in about 3 days :)