A Lesson in Prayer

Marshall Kenneth Jensen passed on to continue his mission with the spirits in heaven at 3:56 EST at the Hospital University of Pennsylvania on 34th street in Philadelphia on November 18th, 2015. Just as he last blogged, while we were busy making our plans to try yet another clinical trial, God had other plans for our beloved Marshall. We miss him dearly. After reading through his journal entries and several other things, it became very apparent that he knew his remaining time on earth would be short. His death was calm, peaceful, and a very spiritual experience for me. Some time I may write about the sacred experience, but at the present it is still so tender in my heart. In true Marshall fashion, the viewing was held on C.S. Lewis' birthday. 


Here is a link to the beautiful services that he wrote:

Please click here to listen to Marshall K Jensen funeral services

That in and of itself is a blogpost enough. I also wanted to share the prayer I was reciting every morning the last few days before he passed. I recited it from a book I was reading about being a praying wife. I had to work hard on my personal praying for quite a while because I felt as though I was drowning and that God was not listening to years of pleading for Marshall's leukemia to stay in remission. Also as I watched Marshall's intense pain get worse even though he was on a huge dose of methadone AND a morphine pump, it hurt SO much to watch; I still can't believe he could bear it and I felt as though my pleadings with the Lord weren't helping Marshall and the pain just kept getting worse.  Now I know that the purpose of prayer is for us to align our will with the Father, not for God to change His mind about what should happen in our lives.  Marshall fulfilled his mission on the earth and even the intense pain and suffering of the last four years with a smile on his face (even when it was paralyzed and he couldn't actually physically smile), music in his heart, and an unshakeable testimony of his Savior Jesus Christ.

Here are the words to my borrowed prayer:

"Lord, You alone know the depth of the burden my husband carries. I may understand the specifics, but You have measured the weight of it on his shoulders. I've not come to minimize what You are doing in his life, for I know You work great things in the midst of trials. Nor am I trying to protect him from what he must face. I only want to support him so that he will get through this battle as the winner.

God, You are our refuge and strength, a very present help in trouble (Psalm 46:1). You have invited us to "Come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need" (Hebrews 4:16). I come before Your throne and ask for grace for my husband. Strengthen his heart for this battle and give him Patience to wait on You (Psalm 27:1-4). Build him up so that no matter what happens he will be able to stand strong through it. Help him to be always "rejoicing in hope, patient in tribulation, continuing steadfastly in prayer" (Romans 12:12). Give him endurance to run the race and not give up, for You have said that "a righteous man may fall seven times and rise again" (Proberbs 24:16). Help him to remember that "the steps of a good man are ordered by the Lord, and he delights in his way. Though he fall, he shall not be utterly cast down; for the Lord upholds him with His hand (Psalm 37:23-24).

I pray he will look to You to be his "refuge, until these calamities have passed by" (Psalm 57:1). May he learn to wait on You because "those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint" (Isaiah 40:31). I pray that he will find his strength in You and as he cries out to You, You will hear him and save him out of all his troubles (Psalm 34:6)."

Here are a few quotes that were shared with me from Elder Bednar's office that I have loved as well after Marshall died. 

President Joseph Fielding Smith (in his remarks at the funeral services for Elder Richard L. Evans)

“May I say for the consolation of those who mourn, and for the comfort and guidance of all of us, that no righteous man is ever taken before his time.  In the case of the faithful saints, they are simply transferred to other fields of labor.  The Lord’s work goes on in this life, in the world of spirits, and in the kingdoms of glory where men go after their resurrection.”

Elder Neal A. Maxwell

“A mortal life may need to be ‘shortened’ by twenty years as we might view it—but if so, it may be done in order for special services to be rendered by that individual in the spirit world, services that will benefit thousands of new neighbors with whom that individual will live in all of eternity.  Perhaps this reality is yet another reason and reminder why we are urged to pray only for ‘our daily bread,’ for disciples must be portable.  Our omniloving and omniscient Father will release us when it is best for us to be released.  But each such release of a righteous person is also a call to new labors” (“All these things Shall Give Thee Experience, 99).

The night before Marshall passed, I went from the 9th floor of the ICU to the 5th floor and found a large, open restroom where I could kneel and pray aloud. In my mind, my thoughts were all ready to say, "Heavenly Father, please bless us with another miracle". To my surprise, when I opened my mouth the words, "Heavenly Father please bless us with one more day" came out instead. For once in my life, my prayer aligned with the Lord's will. I am grateful for that moment and every moment I had with Marshall on the earth. His spirit inspires me to live better, to live as the instrument and purpose that God wants me to, and strive to secure myself to heaven as Marshall and many other spirits lately have. 

How could he have known 2 years ago that some lyrics would describe his passing so well? "In the ink of an eye I saw you bleed, through the thunder I could hear you scream, solid to the air I breathe, open eyed and fast asleep...Ragged down worn to the skin. Warrior raging, have no fear. Restless with an angel's wing, well I dig a grave to bury you. Released from circles guarded tight". You can click on the hyperlink to hear Marshall and I perform this song at a benefit my McKee family held for him, Miracles for Marshall called, "Secure Yourself to Heaven". This song almost describes perfectly what we went through at that time. "No feet to fall, you need no ground. Allowed to glide right through the sun". What a blessed experience to be with him in those final moments.  As he was passing on, I was holding on to his ankles in what seemed like my last ditch effort to keep him on earth a little longer. I was wishing I could just hang on and he would just take me with him when his amazing spirit departed from his body. There have been many moments lately when I wish that last ditch effort would have worked as I sort through my emotions. But I have to 'fasten up my earthly burdens' for I have 'just begun'.  Marshall truly is the winner of this battle and is flying high like the eagles. As much as I wish I was soaring high with him, I have a beautiful little boy who is a mini Marshall and I am blessed with his smiling, optimistic spirit living on through his son. I'm blessed to continue to raise him as Marshall so badly still wants to do. Merry Christmas in heaven Marshall. 

Other Plans...

As Amanda and I continue to search for a cure for my leukemia the words of John Lennon continue to ring true, "Life is what happens to you while you're busy making other plans." 

Nearly four years have gone by and we're still fighting. As I sat down to eat breakfast in my little hospital room this morning I realized just how lucky I am. 

I realized that if someone hadn't donated that bag of blood hanging above my head - I wouldn't be here. As a cancer patient I'm lucky to know how fragile each moment is. It keeps me humble that's for sure and grateful for that special gift - to breath - to be alive. 

When placed in a position of suffering, one often wonders, "What is the purpose of this?" and "What am I supposed to learn from this experience?" If I've succeeded at anything at this point it is getting people to pray. Your prayers are truly supporting a miracle. 

Most recently my fight with not one, but three bacterial infections that sent me into septic shock. A state that has a mortality rate of nearly 50%.

Let's have a look at the culprits:

Enterobacter

Klebsiella

Lactobacillus

Since my trip to the ICU I have been able to fight off the first two bacteria with the right antibiotics. However, the third bacteria (which I'm told is pretty wimpy to someone who has a healthy immune system) has been lingering. My doctors suspect that it is hiding out in the central line in my chest. 

To avoid future complications we inserted two IV lines in my left arm today and tomorrow we are scheduled to remove my central line and hopefully any infection that may be hiding there.

The plan at this point is to pull the line and continue to allow my body to recover from the last round of chemo. It could take a couple of weeks to reach this point but I am getting neupogen shots each day to help speed up the process.

At that point, barring any other setbacks we will proceed with three days of preparatory chemotherapy and then introduce my re-engineered t-cells. Thank you for your prayers. I am ever grateful for your support. 

You Say Goodbye and I Say Hello

Goodbye Utah, Kez, friends and family, house, cars, dogs.  Hello Philadelphia, City of Brotherly Love, Hospital University of Penn, and T-cell Try Number Two! We at least made it across the country. There were many days that I wasn't sure if we would even make it this far so this is a step in the right direction and a feat that was not easy! As many of you know, Marshall had been in the hospital back in Salt Lake for quite some time with severe pain. He was pretty much only released Thursday so he could pack and fly out to Philly early Monday morning. The severe pain is the result of the leukemia growing out of control over many spots in his body namely his hip, knees, ankles, wrists, and back.  We flew here with the help of wheel chairs and first class flights (thank you Jones)!  Our flights took all day Monday and the plan was to meet with the doc Tuesday and admit Marshall Wednesday to start prep for t-cells. As we are now used to, the plan all changed...

Overlooking the Delaware River

Tuesday morning Marshall awoke in our hotel room and could not move. He informed me (or more like cried and screamed to me) that he could not get out of bed; that we would have to call an ambulance because he could not so much as lift his arms to get dressed. I didn't like the idea. We've had our fair share plus some of emergency room experiences and the one here in Philly was by far the worst. Waiting in the ER for five hours while my husband screamed in pain then waiting another half day or so for a room to open in the hospital did not seem like the best option to me. Don't get me wrong, I was listening to him as he begged me to call an ambulance, but it seemed to me he was in a state of anxiety and panic. He hadn't slept much the night before due to his pain. I seriously pep talked him for about 3 hours which is odd for us because usually he is the peppy one. I told him if he could just roll to a wheel chair I could get him to the appointment with his doctor and we would ask the doc to admit him TODAY.  I also assured him that if he was not able to roll into the wheel chair that I would dial 911.

He did it. It hurt. It was painful, but I helped him dress and roll over into that wheelchair. We took a taxi to the hospital and after meeting with the doctor we were told Marshall is not ready for t-cell treatment due to the cancer being so out-of-control as I'd predicted he'd say (we only heard that a few times last year). If he were to receive t-cells at this stage either the t-cells would reek havoc OR they would take a while to react if they work and they would have to treat the cancer with steroids or chemo that would kill off the t-cells.  So last year, there wasn't enough leukemia to create the reaction wanted. This year there is too much. I pray we can find that sweet spot and try this treatment again. So as the plan is now, we will wait for Marshall's counts to tank, then recover, then go on to what we planned. That means we won't be home for Christmas. As we know, that could definitely change too.

Today is now day 3 out of 5 on a chemo called clofarabine. It's used to treat patients with refractory disease. He finished his third bag so that means he is now officially half way done with treatment. We are not newbies to this, so we know most side effects come about a week later. His counts are definitely dropping, but they were super low prior to this due to cancer building up in his marrow. He finally had a break today from transfusions, but up to this point in the hospital he has had to have either a blood transfusion or platelet transfusion or both every day since he was admitted. The first 2 days the pain did not let up and I was nervous the chemo would do nothing to the disease.  Finally today he seems a little better. He walked a little without the use of a wheelchair. In fact he is walking to the bathroom without his walker right now and I'm telling him how proud of him I am.

Marshall's first walk day 2 in the hospital. He made it half way down this hall.

Some moments I realize how trapped and consumed I've allowed myself to become in this cure crusade. I do think it is noble to lose myself in helping my husband and the search for a cure, but I also have come to realize that it's caused me to become depressed at times and not myself. Dear friends, I am sorry I often cancel plans, but click here if you want to know more of why caregivers often cancel.  I feel like I've lost many friends over the years (although the friends who have stayed in touch are golden friends- the kind that you want to surround yourself with because they love and help when life is hard and keeps being hard) because my time is completely consumed with this. When it isn't, it's with my little boy or my work. Speaking of our little boy, my heart hurts missing him so much! He chose every single time I asked him to stay back home where he could go to pre-school and soccer and be with grandma. They have a very special bond and I am so, so beyond grateful to my mother for sacrificing so much so she can care for him and our dogs while we are battling on across the country. We watched his Halloween program the other day and he did such a great job. We also watched his last soccer game. I know this takes a toll on him, but we FaceTime him about five times a day (sorry mom). If Marshall can get stable enough I will fly home to see him or we will fly him out here to us.

Poems and songs about Halloween

Speaking of hurting hearts, these four years have taken a toll on my health as well in the form of chostrocondritis. It's not terrible- just a condition every once in a while where my heart literally hurts. It's usually only brought on when there is a lot of stress and I am sure it will go away completely if/when that gets better.  I haven't talked about this much on our blog, but I read two other blogs that made my heart hurt. One was comparing infertility to cancer by saying that because those experiencing it don't talk about it much, it hurts even more. The other was comparing depression to cancer for a similar reason. I wanted to scream from my hurting heart that cancer often causes both infertility and depression. This has been the case with us. We tried two cycles of in vitro that failed this year. We've stared at hospital walls that have felt like prison walls. I don't say this to compare burdens. In fact, that is what bothered me about it so much in the first place.  The fact is, we ALL have our struggles. Be they small, large or somewhere in between. If you're experiencing some kind of burden in your life click here. I was reminded recently at a Peace Retreat of that popular analogy that if we were to all write down our problems on a piece of paper and throw them in a pile we would want to grab our own right back after seeing the others!

When you're going through a rough patch which can be years or a whole lifetime, just remember that often posts on blogs, FB, instagram are not the whole picture.  In the age we live in sometimes it can feel like our lives suck compared to those perfect posts. One of my favorite lines from Marshall's songs says, "There was a wise man who could only see the way the world was supposed to be". Talking about it is one thing but doing it is a whole other. I'm not a good talker, but I'm a good listener. It's important to talk about the hard things. I aspire and try to be a good doer. Einstein invented the equation E=mc^2 to try to help the world. If he'd known that it would have been used for that atomic bomb he probably would not have lifted a finger. Sometimes we portray our ideal world through words and pictures, but often it isn't reality. I'm guilty of this too, but it's important to be real and personal. 

I'm grateful for being able to share my sorrows AND joys through this blog. Through the crowning atonement, we can come together AT ONE. One thing I have learned to appreciate more about my brother and Savior is that he didn't see himself as a victim despite all that he had to endure and his world and friends crumbling around Him. He forgave his crucifiers and endured his pain for a greater cause of peace in life, death and good will to men. He went into his mission knowing that it wouldn't be an easy feat! That it would mean torment and pain, but would also give joy and life. He allowed so much pain so we could all learn to serve each other instead of hurt each other. If we remember Him more throughout our lives, through him our sorrows and burdens can be eased. That equals less pain for him in that atoning moment. Less comparing. Less hurt. More love, goodness, and help.

Back to the Future Day

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

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

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

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

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

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

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

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

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

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

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

Gaucho  

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

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

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

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

The Worth of Souls is Great

Family Pics 2015

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

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

RAINY DAY BOOK

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

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

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

"When Mom says, I HATE RAIN,

Nate says, Rain Brings Frogs.

When Ben says, Not enough,

Nate says, Enough to share.

When his sister says, It's SO UGLY,

Nate says, It's so warm.

When Charlie says, KEEP OUT,

Nate says Room For All.

When dad says, MUD, MUD, MUD,

Nate says, Rainbow, Rainbow, Rainbow.

When Casey says, I lost,

Nate says, I finished.

When Liz says, I NEED MORE,

Nate says, I need one.

When his friends say nothing to do,

Nate says enjoy the view.

When everyone says We see clouds.

Nate says, Behind the Clouds I SEE SUN!"

You Choose Your Tude

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

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

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

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

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

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

MY WHY

Hello world! It's been about three weeks since my last post. I hope I didn't depress everyone. I was pretty bummed out to find that my leukemia made its way back into my brain fluid. This frightened me because I do not want a recurrence of the facial paralysis I suffered last summer - which I am still recovering from - but things are much better as you can see from this comparison...

August 2014

August 2015

My smile is still a little "slouchy" on the left side but we're getting there. Luckily Amanda is absolutely adorable no matter what so she helps even things out :) 

As mentioned in my last post we have proceeded with the spinal taps twice a week and although yesterday's sample was not quite cancer free, we are very very close. Once we get a month of clean results I will be able to proceed with the t-cell treatment back east.

As a matter of fact I spoke to the research nurse in Pennsylvania yesterday and she said the F.D.A. is likely to approve the new protocol for my treatment sometime this week. As soon as it's approved I will fly to Philly and sign the consent. Once the consent is signed they will begin re-engineering my t-cells in the lab - a process that can take about 4 weeks. 

If we can time it just right I will get my 4 weeks of clean spinal taps during the same 4 weeks they are engineering my t-cells and we won't give the leukemia any exra time to cause trouble. The odds of us pulling that off would be pretty incredible - but here's to hoping!

Speaking of my leukemia causing trouble, last week we found another tumor growing in my right forearm. Not only does it hurt, but you can actually see a large bulge developing on my inner tibia behind my wrist.

Yesterday we blasted this tumor with a little more power than my last one. Hopefully it works too because that's my guitar strumming wrist! The radiation has left me a little nauseated/wiped out but hey if I can "run" a 5k with a bag of chemo going I think I can handle this ;)

Not to brag or anything - if you want to know a real hero you should meet my friend Derek Fitzgerald. Not only is he a cancer survivor, the chemo messed up his heart so bad he had to get a new heart as well. You'd think it'd be enough for him just to get up and eat a bowl of cereal in the morning but this guy decided to run Ironman triathlons! Seriously, he just finished one this summer. They call him the 'Tin Man' because he is a heart transplant recipient. He and his wife LeeAnn helped us out through some of the tough times in Philly last summer. We adore them and their sweet daughter. Here we are at the Green Light Gala in March.

I may not be up for an Ironman competition anytime in the near future but I do try to take my dog out for a bike ride when I have the energy. Recently, the following song popped up on my playlist and gave me an extra ounce of inspiration to fight the battle:

Fight for Greatness

"Come alive, who are you to think it's over

Fight the fight, discover what you're really made of

There is no try, this battle is raging

Choose your side, this is the fight for greatness

Oh this is critical and I choose life

All life is beautiful and I choose life"

Jeremy Finlay - Bloom

Although the chemo, radiation, and spinal taps have been grueling and unpleasant I have recently been guided by this bit of wisdom from Neitze, 

"He who has a why to live for can bear almost any how."

With that in mind I would like to share a couple stories with you that will give you a glimpse of MY WHY. 

Three weeks ago (the same day I was released from the hospital) I was scheduled to perform at the American Cancer Society's Relay for Life for Davis County. About 20 minutes before I went on stage Miss Davis County sang, "the sun will come out tomorrow..." 

Then it was my turn; unpracticed and feeble from a long stay in the hospital I took the stage and began to sing. After about three songs a huge wind surge blew the microphone stand right off the stage and rain began coming down in sheets. We packed my guitar and ran for the parking lot to take refuge in our car as waves of rain pummeled us from the side. 

Drenched and shocked from the ordeal our little family giggled and joked as we waited for the storm to settle down before we drove home. Thanks to Kezman's Grandma Hunt we had warm banana bread and hot chocolate when we arrived.

The next Friday I was scheduled to play at another event - this time in Weber County and true to the lyrics of the song the sun did come out "tomorrow". The best part - having these two with me rain or shine :)

And finally, about a week ago after putting Kezman down for bed I slouched down into the couch to watch the evening news and wind down. As soon as I was nice and comfortable I heard a soft, little voice from the hallway, "daddy?" expecting his usual 4 year old antics to delay bedtime I ignored the quiet plea. Fifteen to twenty seconds later, still soft and tender, I heard it again, "daddy?" This time I relented, leaving my comfy perch to find out what excuse Kez had come up with to stay up.

In one of many moments where my child has become my teacher he humbled me with these words, "Daddy, I'm scared. Can you show me how to pray for the Holy Ghost?" I put my hand on his shoulder and we walked back to his bedroom and knelt in prayer asking for the Holy Ghost to bring comfort, peace, and protection. With tears in my eyes I tucked my little guy back in to bed and he slept soundly through the night.

Oh how grateful am I for my beautiful family. For tender and lively experiences that leave me surprised by joy amidst a backdrop of uncertainty.