Marshall's music, t-cells, t-shirts and more

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:

Dank:
click to read Germany's article about Marshall and the therapy
http://www.blick.ch/news/ausland/neue-therapie-bei-marshall-jensen-mit-hiv-den-krebs-besiegen-id3259691.html

Hvala:
Click here to read Slovenia's article about Marshall and the therapy
http://vizita.si/clanek/bolezni/neverjetno-vbrizgali-so-mu-virus-hiv-in-je-ozdravel.html

Dzieki:
Polish
http://m.fakt.pl/wydarzenia/swiat,4k94w

Ellokepa Sawhay (llokepa saawhe):
Rwanda, Kinyarwanda language
http://www.umuseke.rw/virus-itera-sida-yaba-yica-cancer-zimwe-na-zimwe.html

Thanks:
Africa
http://www.chichinwaafrica.com/2014/11/meet-marshall-jensen-of-utah-who-is-now.html?m=1

Xiexie:
Southern China
http://www.szdaily.com/content/2014-11/13/content_10669792.htm

Tesekkurler:
Turkish
http://www.milliyet.com.tr/kansere-cozum-hiv-mi--gundem-1968913/

Vd'aka:
Slovac
http://m.vysetrenie.zoznam.sk/cl/1000648/1437701/Sokujuci-pozitivny-ucinok-HIV--Virus-zachranil-zivot-mlademu-muzovi

Koszonet:
Hungarian
http://m.hir24.hu/hirek/elet-stilus/HIV-virussal-kezelik-a-leukemiat

Diky:
Czech
http://magazin.aktualne.cz/marshall-jensen/r~08a1fe986a5a11e490f70025900fea04/r~d37e886e6a5711e4b6d20025900fea04/

Xbana:
Serbian
http://www.24sata.rs/vesti/svet/vest/ubrizgali-mu-hiv-virus-i-izlecili-rak/157246.phtml

Kiitos:
Finnish
http://m.iltalehti.fi/ulkomaat/2014111318834559_ul.shtml

Su' cam o'n:
Vietnam
http://m.vietnamnet.vn/vn/khoa-hoc/206970/thoat-benh-ung-thu-mau-nho-dieu-tri-bang----virus-hiv.html

Obrigada:
Portuguese
http://sonoticiaboa.band.uol.com.br/noticia.php?i=5843

And a few of the many English articles:

Medical Daily
http://www.medicaldaily.com/hiv-helped-utah-man-battle-cancer-how-disabled-hiv-turns-t-cells-serial-killers-310344

Huffington Post
http://www.huffingtonpost.com/2014/11/12/leukemia-treatment-hiv_n_6142484.html

Daily News
http://m.nydailynews.com/life-style/health/utah-man-battles-cancer-hiv-article-1.2008018

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

Whirlwinds

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,

                   Marshall 

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 :)



Saturday, August 30, 2014

Gratitude as an Attidude

Greetings from Philly! I received a nice compliment from the cleaning person. Apparently they have been working on this floor for four years and have never seen anyone exercise like I have been. I figure I can't lay in bed all day trying to beat this disease. I've got to get up and fight!

My amazing mother Lucile has kept me company in the hospital when Amanda is busy with our son. It has been a joy to be in her presence, she has always been a great example of compassion and charity in my life. I also have my amazing mother-in-law to thank for her sacrifice. She has uprooted from her down home ranch in Idaho to help take care of our son so that he can be with his mom and dad during this crazy time in our lives.

Love these ladies!
I'd go on to thank my wife now, however it would take several more pages to describe the smallest fraction of the love and gratitude I have for her and the amazing strength she is to me.

What am I trying to say... I'm grateful. 

Yes, it looks pretty grim right now. I can't even close my mouth to swallow without using my finger to help push it shut, but I am grateful :)

In his recent conference address President Uchtdorf reminded us that, 

"It is easy to be grateful for things when life seems to be going our way. But what then of those times when what we wish for seems to be far out of reach?


Could I suggest that we see gratitude as a disposition, a way of life that stands independent of our current situation? In other words, I’m suggesting that instead of being thankful for things, we focus on being thankful in our circumstances—whatever they may be."

I continue to contemplate Joseph Smith's experience in Liberty Jail. Under the most horrific conditions he received some of the most amazing revelations that are recorded in the doctrine and covenants. In a CES fireside about the topic Elder Jeffrey R. Holland stated the following, 

"You can have sacred, revelatory, profoundly instructive experiences with the Lord in any situation you are in... In the most miserable experiences of your life. In the worst settings, while enduring the most painful injustices, when facing the most insurmountable odds and opposition you have ever faced."

 
When we show gratitude and humility to the Lord, he can and will edify us in any circumstance of life. Holland continues, "Every experience can become a redemptive experience if we remain bonded to our Father in Heaven through that difficulty."

In this way our gratitude becomes an act of faith. Faith that we trust in God's will and his plan for us. I am grateful because I have faith in an eternal plan of happiness.

D&C 78:19 "And he who receiveth all things with thankfulness shall be made glorious; and the things of this earth shall be added unto him, even an hundred fold, yea, more."

Tuesday, August 19, 2014

Now is the Time to be HEADstrong!

Last summer while struggling for a cure in Houston my heart was touched by an amazing community who united in love and gave of their time and talents for our family. Simultaneously three warriors had begun a journey across the entire country to raise money for cancer research and awareness. These two forces united in the heart of the city and my life was elevated. Within only two weeks of treatment I had already reached remission. 

I realized that I still had Miles 2 Give.

Although he can run for miles Kezman is never short on hugs and smiles!
Just when I thought my cancer journey was complete, I was shocked to find that I had only reached an apex; my cancer coaster came crashing down another cliff. We recently found that the leukemia has found its way into my brain. Irony... No... This is Destiny!

Now is the time to be HEADstrong! 

Tis' time for cancer to walk the plank!

As strong as I need my head to be in order to overcome this most recent challenge I am unable to ignore my heart. I want to thank my wife for sharing this scripture with our family the other night.

Proverbs 3:5

"Trust in the Lord with all thine heart; and lean not unto thine own understanding." 

As I'm amidst my third year battling cancer,there is much that I have found difficult to understand. What i do know is that I have seen more kindness, goodness, and selflessness; more of the pure love of Christ in my life than I have ever before. I am grateful to the Lord for his tender mercies each day, and thankful to each soul who has touched our family with your love.

Thursday, August 14, 2014

Remember, Remember, Remember

Early last week I had the opportunity to talk to Cheryl Colleluori, the President and CEO of the HEADstrong Foundation. She is also the mother of Nick Colleluori, a cancer warrior who devoted his final days to something bigger than himself. It is because of his desire to serve and his wonderful family that carried out his dying wish to create Headstrong, that we have a place to stay while I'm being treated in Philadelphia.


As I spoke with her last week I shared my gratitude, and let her know that I had been thinking about the sacrifice their family has made. I explained that it must be challenging to be reminded of her son's death every day. That I had lost a brother to suicide, and that even though the circumstances are not comparable, the heart ache from the loss of a loved one never really goes away.

I admitted that I almost felt guilty that I have days in which I become so distracted with my day to day activities that I don't really think about it. The thing is, the Colleluori family doesn't have that "luxury", they are surrounded by their son's legacy every day, and I'm sure that there are times when it is difficult. I told Cheryl that I admire her for that.

As I reflected back upon our conversation later in the week, I was reminded of another parent who lost a dearly beloved child. 

"For God so loved the world that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." St John 3:16

'Carry your World' by Landon Cooper
It reminded me that I lost another brother, even Jesus Christ. He died on the cross and overcame death by the power of the resurrection that we too may share in this wonderful gift. It reminded me that when I was baptized I made a covenant to always remember Him and keep His commandments. 

Accordingly, in a poignant parallel,as the Colleluori's remember their son and brother every day, even when it's hard, even when it hurts - they remember and turn it into something beautiful and benevolent; I to will strive to remember every day, my brother, my Savior, my God, and turn sin into sanctification, suffering into serenity, and great worry into good works.

Monday, August 11, 2014

How to Speak Like a Philadelphian

After spending over a month in the city of brotherly love I have started to pick up some of the local accent. I thought I would share this tutorial with anyone who is interested in speaking the local language.


Replace the hard "A" vowel sound as in Ant with "ee-A"

Examples:
Ya = Yee-A
Cat = Kyat
Pants = Pyants

Precede the soft "A" sound as in Awesome or Drop with a short "oo" sound. The "oo" and "ah" should only take up one syllable. Shape your mouth like your going to say "oo" and then open up to the "ah" sound.

Examples:
Water = Woo-ah-der
Bought = Boo-aht
Audio = "oo-Ah-dio

The vowel sound in words that end in "or" such as Floor should also be pronounced this way but only open up half way to more of an "uh" sound.

Examples:
Door = Doo-uh
Fort = Foo-uht
Board = Boo-uhd

Finally, talk (t'oo'ahk) about your local sports (sp'oo'uhts) team with resentment, and then cheer for them like you can't (kyant) remember how many times they've let you down.

 

Sunday, August 10, 2014

Double Your Fun...

The headache started Tuesday night and greeted me promptly in the morning. After they prescribed some maximum strength headache meds my oncology team and I tried to figure out why these hives are lingering. Following a great deal of speculation they scheduled me to meet with the dermatologist. He put my mind at ease when he explained that it is not uncommon for hives to persist for several weeks. The downside to that however is that they don't want to give me my CART-19 cells while I have hives. Long story short - more delays.

They drew a lot of labs on Wednesday!
To complicate matters I began to have bouts of double vision that afternoon. They increased in duration throughout the week and by Friday I felt like I was living in a double mint gum commercial. We met with an Ophthalmologists at the Eye Emergency Department on Saturday. After extensive examinations, hours in waiting rooms, and an MRI, surprise surprise... they had no idea what was causing my ailment. Apparently causes of double vision are almost as difficult to decipher as causes of hives!


Things grew even more exciting at about 3:00 AM when I woke up with a headache like I'd been smacked in the back of the head with a two by four. Then I looked in the mirror I realized that I couldn't move the right side of my face. The fun part was that I got my first ride in an ambulance, although I must say it's probably more exciting in the drivers seat where you can see all the traffic move aside as you cruise through red lights.

There's a first for everything...

Well that's pretty much the update. I have more testing scheduled for tomorrow, Currently we're just hanging out on the 6th floor at the University of Pennsylvania hospital. I'm squinting at my laptop with one eye closed (otherwise it appears like I have two laptops). Which reminds me of a couple good things about double vision: one, you have twice as many friends come visit you in the hospital, and two, when you open up your wallet you have double the cash!

Valley Forge Fun
 

Friday, August 1, 2014

Thank You For Loving Me Enough to Cut Me Down

Earlier this week I had the privilege of going to dinner with my friend Aymon. We met in the hospital on my first trip to Philadelphia back in June. I was waiting to have my t-cells extracted for the CART-19 study, and he was awaiting an infusion to help treat his multiple sclerosis. Initially we were all staring at our "smart" phones, then somebody made a joke about it and we began interacting like people used to before the invasion of "social" technology - and I'm glad we did because it gave me the opportunity to meet a truly awesome individual.

We found out that our diseases are nearly opposite - his immune system has gone out of control and attacked his nervous system; my bone marrow has gone out of control and my immune system doesn't do anything about it. We swapped hospital horror stories, and found that despite the differences between our ailments we had undergone several of the same chemo therapies.

 
Aymon has been dealt what some would consider a tough hand, but he manages to keep a smile on his face. He was a long distance runner in high school, but at age 24 he was diagnosed with an aggressive form of MS. He is now confined to a wheelchair, has gone blind in his right eye, and is beginning to lose control over his arms and hands. Notwithstanding all this, he related the following to me, "If I had the choice to be healed today, or to go back to when I was 24 and never fall ill with MS I wouldn't go back. I've had too many amazing experiences. I've learned so much. I wouldn't trade it."

I was inspired by his words. I told him I have never considered my cancer diagnosis in that way and that I would need some time to ponder it. As I've contemplated this interesting proposition throughout the week two things came to mind:

First, was the Lord's council to Joseph Smith as he endured the horrendous circumstances of Liberty Jail,"If thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; If fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good." (D&C 122:7)

I don't know about you but in my mind that scripture conjures up visions of some of the darker scenes in The Lord of the Rings! That said, I've never had the elements combine against me, or the jaws of hell gape open after me, but if those terrifying scenarios can be for one's good, then I suppose I too can gain experience and learn something from my trials.


Second, is a story related by Hugh B. Brown that has come to be known as, 'The Currant Bush'. These are his words,

"I was living up in Canada. I had purchased a farm. It was run-down. I went out one morning and saw a currant bush. It had grown up over six feet high. It was going all to wood. There were no blossoms and no currants. I was raised on a fruit farm in Salt Lake before we went to Canada, and I knew what ought to happen to that currant bush. So I got some pruning shears and clipped it back until there was nothing left but stumps. It was just coming daylight, and I thought I saw on top of each of these little stumps what appeared to be a tear, and I thought the currant bush was crying. I was kind of simpleminded (and I haven’t entirely gotten over it), and I looked at it and smiled and said, “What are you crying about?” You know, I thought I heard that currant bush say this:

“How could you do this to me? I was making such wonderful growth. I was almost as big as the shade tree and the fruit tree that are inside the fence, and now you have cut me down. Every plant in the garden will look down on me because I didn’t make what I should have made. How could you do this to me? I thought you were the gardener here.”

That’s what I thought I heard the currant bush say, and I thought it so much that I answered. I said, “Look, little currant bush, I am the gardener here, and I know what I want you to be. I didn’t intend you to be a fruit tree or a shade tree. I want you to be a currant bush, and someday, little currant bush, when you are laden with fruit, you are going to say, ‘Thank you, Mr. Gardener, for loving me enough to cut me down. Thank you, Mr. Gardener.’”

 
We often think we know the Lord's plan for us only to be disappointed when things don't turn out how we expected. We may be tempted to complain, "How could you do this to me? I was making such wonderful growth." It can be difficult, or even painful, but sometimes the Lord has to remind us that He is the gardener, He knows what we are to be, and if we could only see from His eternal perspective we too would say, "Thank you [Lord], for loving me enough to cut me down."

Wednesday, July 30, 2014

My Golden Birthday

According to urbandictionary.com one's 'Golden Birthday' is, "the birthday when you turn the same age as your birth date. My wife tells a fantastic story of how on her 23rd birthday (her golden birthday) she visited a church in Brazil that was completely made of gold. Well, it just so happens that my golden birthday is coming up - I turn 30 on August 30th. While many individuals dread their 30th revolution around the sun, I will be more than thrilled if I can live to the ripe young age of thirty! Allow me to explain...



We met with Dr. Porter on Tuesday morning. The bone marrow biopsy from last week revealed the 5 weeks of chemo I endured before leaving Utah brought my cancer to a mere 6%! My blood counts are great, my weight is up, and my lungs sound good - no more bronchitis. I'm still tapering off of prednisone due to my bought of hives/emergency room visit last week. Dr. Porter recommended we wait for one week to ensure they don't return after I'm off steroids. This means I am scheduled to start chemo the second week of August, and I will receive my t-cell treatment the following week.


This puts me right amidst a cytokine storm as I approach my 30th birthday. What's a cytokine storm? Wikipedia explains it this way, "A cytokine storm, also known as hypercytokinemia, is a potentially fatal immune reaction consisting of a positive feedback loop between cytokines and immune cells." This immune reaction is not necessarily a bad thing, it basically means that my new "mighty mutant ninja t-cells" are going "incredible hulk" on the "criminal leukemia" in my body. If they are victorious in this epic battle of cellular superheros - I get to celebrate my golden birthday!


Friday, July 18, 2014

Bronchitis, Biopsies, and Broadway

Greetings from Philly! On Monday I went in for CT scan because my cough had not let up. At our return visit on Tuesday the doctor explained that it appeared I had a viral infection that had developed into bronchitis. He prescribed an inhaler for when I have coughing fits. He then surprised me and said he wanted to do a bone marrow biopsy right then and there!

Kezman running down our street in Philly.
I wasn't planning on a biopsy but I have been very curious to know how/if the cancer has progressed since I am into my third week without any chemo treatments. I can honestly say I was excited for it - really? excited to have them drill into your hip, extract the marrow and then wrestle out a core of the bone - yes it sounds crazy but maybe I've just grown accustomed to the practice. Amanda and I estimate I've had nearly 20 bone marrow biopsies in the last 3 years and I have the scars on my back to prove it.

This was also a good sign because on Friday last week Doctor Porter said he didn't want to do a biopsy because they still weren't sure when the study would continue. At this appointment he explained that he worked out most of the kinks with the FDA on Monday and there is a very good chance the study will resume next week. If I can kick this bronchitis I may start chemo as early as next Wednesday. It's good to know that they are finally making some headway.


Getting ready for the show to start :)
With the possibility that this may be my last week before I start another debilitating round of chemotherapy and a life threatening treatment AJ and I decided to throw caution to the wind and took the train to New York City to see a play on Broadway. With wifi and cushy seats an 80 minute train ride goes pretty fast. Before we knew it we were standing in line to see the Newsies. Secret revealed; I've been waiting for a stage version of Newsies to show up somewhere since I was in high school. When I caught news that it came out on Broadway two years ago I was extremely excited but feared I may never get to see it. Well, you can mark that one off my list!

I ran into a couple old friends in NYC.
As if that wasn't enough my amazing and talented friend Jessie Davis took the train from Brooklyn and met us for dinner at the London. Her sister works there so the Gordon Ramsay menu prices didn't hit our pocketbook like they would have otherwise. Thanks for the discount Maggy your a sweetheart! We took a walk to central park and Jessie packed her ukelele along.

Trying to play ukelele with numb fingers...
Imagine this; a game of softball winds down across the walking path as you're seated on a park bench listening to a soulful private musical performance, your dream girl by your side, a back drop of the sun sets in shades of orange, purple, and pink behind the silhouette of the city as fire flies begin to sparkle in the grass at your feet.

That was my reality on Wednesday night and for a brief moment I forgot about hospitals and hand sanitizer, tests and treatments, pokes and pills, biopsies and bills, what saves and what kills and the fine line between them in the nightmare that calls itself cancer.

Sunday, July 13, 2014

First Week in Philly

Philadelphia has welcomed us with open arms! Not only do we have an affordable place to stay, the friends of the HEADstrong foundation have provided gift cards for groceries and toys for Kezman. Now if we could just get this treatment underway...

My Lucky Charm :)
We met with Doctor Porter on Friday. He explained that he is meeting with the FDA on Monday, and they are hopeful to get things started. He also listened to my lungs and used the adjectives, "Wheezy" and "Mucky". In hopes to avoid a repeat pneumonia he prescribed some serious antibiotics.

I still have neuropathy in my fingertips. It doesn't completely disable me from playing guitar, but any song that requires a high level of dexterity presents a formidable challenge. It's akin to trying to play guitar with gloves on. Even typing this blog entry is a little tricky - I can scarcely feel the keys and I have to trust my fingers know what they are doing.

Fierce Family
Kezman is definitely a "threenager" now. We are curious to know how much of his acting out is due to the huge change in our living circumstances and how much is typical behavior for a child his age.

Crabby Kezzy
It may sound a little scary or even crazy to participate in a treatment after 3 people just died from it. Keep in mind however nearly 100 other people have undergone this therapy successfully. The harsh reality is that if I don't do something the cancer will win. Although this protocol has its risks (as did my first two transplants) it is the best shot I have at a long term remission.