May 15, 2014

May's Dragon Slayer - "So You're Saying There's a Chance"

Everyone struggles.

Everyone has trials they have to overcome, dragons they must face.

Some fall.  Some give in.

But there are those who fight.

Not only do they fight, they do it with a laugh of courage, brandishing a well-worn sword and screaming with the fury of the righteous.

They may fall.  In fact, they often do.  But each time their knees hit the ground, they raise their eyes to the heavens and filled with the prayers of the faithful, they rise.  

And they advance.  First one step.  And then another.  Determination in their stride and conviction in their gaze.

For they know, the battle is not won by giving up or giving in.  It is not won by halfhearted tries and cries of pain and self-pity.

It is won when the dragon is the one to fall.

And they will not stop until it does.

They are no mere mortals.

They are the Dragon Slayers.


Luke

This is Luke Call, Dragon Slayer extraordinaire - in miniature.  His family calls him Mr. Smiles because no matter what life throws at him, he never stops smiling for long.

Luke during a conditioning regimen to prep for his second bone marrow transplant.

According to his mom, Katie, on his GoFundMe account - "Luke was diagnosed with a rare type of leukemia when he was just shy of six months old.  By 10 months, he had undergone his first bone marrow transplant.  Unfortunately, his cancer has returned and he's facing his second bone marrow transplant right at his second birthday."


While I consider myself a proficient writer, nothing compares to the heartfelt words his mother uses on his blog entitled, "So You're Saying There's a Chance".  So I'm quoting her for a good portion of this post. (If you want to read his full story, I recommend starting with this post - Luke's Story: The Prequel.  Warning - if you read every entry on his blog, you may cry.  A lot. I know I did.)



"Did I just hear 'mass' and 'biopsy' in the same sentence?"

Luke at five months old before receiving his diagnosis.

At five months old, Luke was already displaying warning signs something was wrong.  Katie recorded in their family blog:

"This last month for Luke has been marked by yet another ear infection, a round of antibiotics, and two rounds of ear drops.  Earlier in the month, Luke just quick sleeping again.  It took me three nights of being up with him every hour before I realized that the only other time this had happened, he had an ear infection that we didn't realize he had until his ear drum ruptured.  Oops.  I had this realization on a Friday night, and we already had an appointment set up for Monday morning.  Luke needed a weight check after his well-child appointment to make sure he was gaining weight again after the stomach virus he had before that appointment.  Seriously, I think Luke is definitely our sickest baby yet!....But even with all this sickness for Luke, he's still just the happiest baby we've ever known.  He's still our Mr. Smiles!"

It was just the beginning.  Katie recalls:

"Danny and I were hardly sleeping at all, and it was the beginning of Danny missing work more often than not because one or the other of us had been up with a crying Luke most of the night.  We have an amazing pediatrician, Dr. Nisha Baur.  We were obviously dealing with the ear infection issue, but when he stopped eating and sleeping we couldn't find a smoking gun.  But she never dismissed my concerns.  She would call me almost daily if I wasn't in her office to see how we were all doing.  Once that ear infection cleared up, Nisha was able to get a good look in his left ear.  It still didn't look right, but it didn't look bacterial.  I'm so grateful she trusts her intuition, because she told us that even though she had never personally seen a fungal ear infection in a child so young, she was fairly certain that was what it must be.  So she referred us to an ENT for verification.  Sure enough, it was a fungal infection.  This diagnosis resulted in a week of more ear drops, and a follow-up visit with the ENT.  During that week, Luke really started to tank.  It got to the point where he refused to nurse or take a bottle at all, so I was pumping and we were feeding him with a medicine syringe.  We were desperate to get anything we could down his throat.  He cried all day and all night, and Danny and I knew he was in pain."

"The day came for our follow-up visit with the ENT.  I remember it was a Friday...the Friday before Veteran's Day.  The visit went well.  The ENT said that Luke's ear was looking better, but that we should do the drops for another week and then see him again.  We were almost out the door when I remembered we wanted him to check Luke's throat.  He did, and then he turned and gave me the strangest look.  My stomach hit my throat, and I asked him what that look was supposed to mean!  He said he wanted to take another look at Luke's throat.  He did, and then told Danny and I that there was a 'large, angry mass' on the back of Luke's tongue that shouldn't be there.  He wanted to schedule a biopsy so he could take a look at what it was.  I was stunned.  Did I just hear 'mass' and 'biopsy' in the same sentence?"

That day was only the first in a roller coaster of doctor's appointments, hospital stays, sleepless nights, and tearful prayers for Katie and her husband, Danny.  But they never gave up hope.

"I can't remember now the exact sequence of events, but it was into the second week of our admission that we received our diagnosis.  We had to get a crash course in biology just to understand what they were telling us!  Basically, there are different subtypes of leukemia depending on which type of cell is cancerous.  They were able to easily eliminate all the most curable subtypes of leukemia...of course. :)  But where Luke was unique was that they really couldn't nail down exactly which type of cell was mutating, or at what point in the cell genesis the mutation was taking place.  So the name they finally gave to Luke's cancer was poorly differentiated leukemia.  Dr. Luke told us that he could work his entire career and not see a diagnosis like Luke's.  Somehow, that didn't make me feel better. Another doctor told me that Luke was literally one chance in more than a million that he would have this diagnosis.  Hence the web address for this blog (oneinmorethanamillion).  I remember a sobering conversation with Dr. Luke where he told us that while there had been significant strides in treating childhood leukemia, increasing the survival rate to 90% or so, that didn't apply to Luke.  That was for children diagnosed between 1 and 10 years of age.  And certainly not with a complicated diagnosis like Luke's.  He never offered numbers when it came to Luke's chance of survival, and we never asked.  It didn't matter, really.  But he told us there was definitely hope.  There was always a chance.  And what came into both mine and Danny's mind was the scene from 'Dumb & Dumber' where Jim Carrey's character, after being told by his love interest that there is maybe a one in a million chance that they'd get together, enthusiastically exclaims, 'So you're saying there's a chance!'.  Hence the title of Luke's blog. :)"

 Luke underwent his first bone marrow transplant in March of 2013.  

"
Luke on the first day of his first bone marrow transplant on March 5, 2013.
 They were able to bring him home soon afterwards with a ceremonial ringing of the bell and more happiness than they could express.

Ringing the bell to signal Luke's return home.  Love those huge smiles!  April 20, 2013
"Ring this bell three times real well, its toll to clearly say: My treatment's done, this course is run.  Now I am on my way."


"The Conversation We Never Thought We'd Have"
 
But their happiness didn't last.  Only a few months later, they learned Luke's cancer returned.  If they chose to continue treatment, it would be a long, rough road - far worse than the one they had just traveled.  

"I remember thinking I should be crying at this point, but I couldn't.  I was in too much shock, but at the same time my mind seemed very clear.  I felt the need to make sure we weren't beating around this terrible bush, so I asked Dr. Boyer what it meant if we didn't continue with treatment.  What would that look like for Luke?  He told us that Luke's immune system would eventually be completely compromised, and essentially a sickness would end his life.  Likely something along the lines of pneumonia.  When we asked what kind of time frame we'd be looking at, he told us a matter of weeks...2-6 weeks was his estimate.  Danny and I were floored.  We were not expecting that.  I watched Luke smile and play on Danny's lap and wondered how in the world it could be true.  He seemed healthier than he had ever been!  How did the cancer come back so aggressively?  How could it have survived the chemo and radiation we did to prepare for transplant?  For goodness sake, LUKE barely survived it all!  I remember talking more about what the plan would be if we continued treatment.  It would be pretty nasty chemo, and they would want to start just as soon as we could bring Luke in.  As he was talking, I knew in my heart that we weren't supposed to continue treatment.  I knew we were supposed to take Luke home.  Take him home to die.  I kind of tuned out the rest of what Dr. Boyer had to say, and wondered how I would express those feelings to Danny.  I could only assume that Danny was ready to do whatever it took to give Luke a chance at survival.  How could I tell him I knew in my heart of hearts that was the wrong thing to do?  How could I tell him to let Luke die?"

Her fears Danny wouldn't agree were unfounded - he agreed.  So, with heavy hearts, they took Luke home.


An Unexpected Miracle

But Luke wasn't done fighting.  Instead of growing weaker, he grew stronger.  Time with his family proved to be the medicine he needed.

"Really, it was all about spending time together having fun.  And allowing Luke to enjoy life.  Over and over again, we were reminded at how little of life our Lukie-Son had been able to experience.  He continued loving life, and his counts continued to improve.  Week after week, we held our breath as we waiting for his lab results.  And week after week, we were shocked, humbled, and so incredibly grateful as we watched his lab work get increasingly normal.  A trend we shouldn't have been seeing.  By the time we reached 4 weeks since Luke's terminal prognosis, we realized we were breathing easily again.  We were starting to just live again....I can say that through all the tears and fears, I am grateful for the last year.  I have seen miracle after miracle, and have had such incredible spiritual experiences.  Thank you, Luke.  Thank you for being willing to go through all that you've had so you help us learn these precious truths.  We will love you forever, Son."

What a handsome dragon slayer!



Facing the Dragon Once More 

After another round of chemo in March, Luke began preparing for his second bone marrow transplant.

Giving Katie love on Mother's Day.
This time, the donor is his father, Danny.  Katie says, "If Luke was a Daddy's Boy before, I can only imagine that will intensify when Danny's blood is literally coursing through Luke's veins."

Taking advantage of the view from his room while he can and scoring some daddy time.
  "Luke will have a 13 day conditioning regimen to get him ready for transplant.  Whenever you undergo a bone marrow transplant of any type, you have to go through a certain amount of chemo and/or radiation to kill the diseased marrow...in its entirety."

This last Friday, May 9th, was Day One.
 
After a brief scare on Saturday - you can read the details here - Luke bounced back and is on his way to another chance to slay this dragon with the help and faith of his loving family.

"On Saturday morning, my heart was gripped with fear and I was ready to stop all of this.  But my son is so good at reminding me to trust, and be of good cheer, and know that there are brighter days ahead.  I know there will be more dark moments in our future.  Like Elder Joseph B. Wirthlin reminded us, the Friday of Christ's crucifixion was the darkest day known on the earth.  But with as dark as that Friday was, Sunday came with the promise of all that was broken to be healed, and to hurt no more.  I know there will be 'Fridays' during this transplant process when I feel like all is lost.  When it will feel as though all is broken.  But our Sunday will come.  Because of the resurrection of our Savior, I know that death is not permanent.  Because of the covenants we make in the temple, I know that my family will never know a true end, but only beginnings.  I am so blessed to be the mother of this mighty spirit, who is suffering so much to teach me."

Obviously, Luke isn't the only one brandishing a sword.


One Final Note

When I originally asked permission to post Luke's story, I never realized the emotional journey I would undertake.  Knowing I needed to do research in order to represent Luke's battle faithfully, I began to read his blog.  Three hours later, I emerged, red-eyed and sniffling, with a greater understanding and deeper respect (bottomless, really) for the trials he and his family are going through.  Even as I wrote this post, the tears flowed freely.  I am proud to share his story with you and I hope it touches you as profoundly as it has me.

It is my fervent prayer that Luke will be able to slay his dragon once and for all.

Keep laughing, little dragon slayer.  And keep fighting.



If you would like to help the Call family, you can donate to their GoFundMe account here.  They've asked for a mere $10,000, which must be a small fraction of what they truly need.  I would love to see that amount doubled, tripled, and even quadrupled!  So please share this.  And donate whatever you can.

If you know of a dragon slayer you would like featured here, please contact me at LysandraJames.author@gmail.com

Thank you.

~ Lysandra

2 comments:

  1. Thank you so much for writing this, Lysandra! You captured my little dragon slayer perfectly. Much love!

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    1. I'm honored to have done it. Thank you for allowing me the privilege. Much love to you, too!

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