Posts Tagged ‘leukemia’

I wrote most of this piece five years ago.  We had recently gotten back to Toledo after 4 months in Cleveland following Allana’s bone marrow transplant and after weathering what was easily the greatest test of our lives.  I can remember hearing this song that morning and feeling the impact of the words more than I had ever.

TisSoSweet

Tis so sweet to trust in Jesus,Just to take Him at His word, Just to rest upon His promise and to know ‘Thus saith the Lord’

Wonderful words penned by Louisa Stead over 200 years ago ring true today.  She lived in a world that served up tragedy on a regular basis just the same as we do today.  Even as we struggle with the trial of Leukemia the trials of this world impact so many others all around us.  A young bride is bereft of her husband on the way to her honeymoon.  A mother and grandmother passes away.  A child is desperately ill.  Families are losing their homes.  All these things rock the carefully manicured lives that we try to prepare for ourselves and those closest to us.  It is in the midst of grief and turmoil that the words of this great hymn begin to make sense Jesus, Jesus how I trust him.  How I’ve proved him o’er and o’er.  Jesus, Jesus precious Jesus oh for grace to trust him more.”    It really makes sense because it is grace that makes our trust possible.  I have in my life attempted to trust by study, by effort and by ostrich (sticking my head into the sand).  I can attest to the fact that these paths to trusting our Savior do not work.  In the end they magnify the turmoil and most often leave one sensing an ever increasing gap between God and oneself.  We end up feeling unloved and that God has somehow failed to keep up his end of the bargain.  Thoughts like, “But God I have done everything you asked…”; “Lord I don’t know what you want from me I can’t do anymore…” tear at our faith and bring in a spirit of defeat that can be more devastating than the tragic events themselves.

It is when by grace we detach our faith from circumstance and effort, relying on the Holy Spirit, simply fanning the flame of the gift that God has given each of us through whatever circumstances occur because we are convinced that He will guard us and the Gospel He has entrusted with us through the Holy Spirit (1 Timothy 1:6-14).  Paul follows up this impassioned guidance to Timothy with the difficult circumstances that Paul found himself in and the sustenance that God provided to Paul.  I think that even in his chains Paul would have sung Louisa Stead’s lyrics with an honest heart.

I’m so glad I learned to trust Him,
Precious Jesus, Savior, Friend
And I know that He is with me,
Will be with me to the end.

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Our Story

There are times

in the Christian walk when it is clear and obvious what God is doing in our lives and the lives of those around us.  However those times, at least for me are few and far between.  When God asks us to walk a particular road there are times when we never (perhaps until we are in the glory of His presence) know the rest of the story.  There are other times when we are far past that path and have moved to other roads of His choosing that He honors us with a glimpse of the rest of the story.

Sometimes we are “the rest of the story” for someone else.  Early in Allana’s battle with Leukemia we were both in a dark place.  The realities of Chemotherapy had begun to set in. We were separated from our children because of the epidemic levels of illness in the Toledo area and Allana’s dropping immune levels.  The nature of the Leukemia and the length of the battle ahead was becoming apparent.  The response of our faith community, friends and family was amazing.  They were all definitely the boat that God provided to keep us afloat in the storm, but still the waves, the wind and the darkness were overwhelming.  Into this storm walked a young nurse.  She was not one of our regular nurses, in fact we never saw her again.  She came in to the room during her shift and told us that she had heard we were believers and asked if she could pray with us at the end of her shift.  The prayers of many, all kinds of prayers, have been a comfort and strength throughout many trials in our lives, so of course we said, “of course”.

When the end of her shift came, she arrived as she said.  She was so young and seemed so small in comparison to our plight.  Don’t get me wrong we appreciated her heart and the prayers of everyone who lifts us up to God’s throne, but our expectation was perhaps a little wind for our sails.  However God knew that at that moment we did not need a little wind in our sails.  We needed light to shred the darkness and we needed to FEEL the presence of God.  This little nurse began to pray and called down the fire of heaven into that hospital room (and yes I am crying as I type this).  The darkness and the storm shredded in the light of God’s presence.  I can certainly imagine the joy of a mariner caught in a seemingly endless storm when the sun breaks through to warm his face.  I honestly don’t remember what happened next, it is lost in the overwhelming presence of God. I am sure that we thanked her.  I doubt that she realized the importance of her obedience to God in our battle.  I have told this story a number of times, but I don’t know if she has ever heard the rest of the story.  I hope so but that decision rests in the hands of God.  We are so blessed when He imparts the rest of the story into our lives but as His children we can be assured that the rest of the story is amazing.

 

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As I sit here waiting for Allana’s last appointment here at The Clinic for some time, I am reflecting on God’s intervention in those early days of treatment. After a tumultuous first round of treatment at Flower Hospital where God intervened in a miraculous way, we were referred to the Cleveland Clinic.

Caring bridge Post 02/08/2013:

…This is not to say that Thursday morning went super smoothly, the keys to the rental car that my parents were driving ended up locked in the trunk right at the time that we were supposed to leave. But God had it under control, AAA arrived in record time and the hospital said they were able to shuffle things for us. He brought Jeff T and Larry B to our door on a prayer walk and they prayed for both Allana and I this brought us peace in this moment of turmoil. However neither of us had peace as to which way to go. I wanted
her admitted and the treatment started right away, but I knew it was out of fear NOT out of an understanding of God’s will.

Allana seemed to be strongly leaning towards delaying or even discontinuing treatment, especially if all the tests were clear. She so desperately wanted to stand on complete healing.

After the bone marrow test and the discussion with the doctor it was time for the rubber to hit the road.The doctor started to move on the assumption of admission and I stopped that and said we had a few questions.We asked our questions but they were really immaterial to the prayers of our spirits with the Holy Spirit for clarity and peace.

I waited for Allana to make her objection and prepared to engage the doctor for her, but she looked up and quietly said, “let’s do it”. I turned her head towards me and looked her in the eye, ” You don’t have to.It is YOUR decision.Are you sure?””I am sure.” she replied. Instantly the peace of God and the presence of the Holy Spirit rolled over us. The outcome was what I had wanted all along but the path I had been headed on to get their was not going to bring the peace that I was desperate for, even though the end would have been the same; the road would have brought more fear and lessened my clarity with the Holy Spirit.

We do not serve a God who holds or a faith that promotes that the end justifies the means.  In fact I would suggest exactly the opposite is true.  Our faith in Jesus Christ is one where the means justifies the end. Paul tell’s the Philippians:

Only conduct yourselves in a manner worthy of the gospel of Christ, so that whether I come and see you or remain absent, I will hear of you that you are standing firm in one spirit, with one mind striving together for the faith of the gospel; Philippians 1:27

The verse starts with Monon, only, alone.  This one thing do, Paul says.  It is not about the result.  That is in the hands of God.  It is about the means.  We can arrive at God’s intended result and be so far outside of His peace because we did not conduct ourselves worthy of the gospel of Christ, we did not walk according to the Spirit. (Romans 8:4).

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This is a Facebook post by my wife Allana.  She is my Hupomone partner in life.  Her dedication to God and our family as we have walked the path laid in front of us has been nothing short of amazing.  I started and stopped writing about this day several times.

 

January 4th, 2013 does not hold a Facebook post. From Facebook’s perspective it was a day of silence. Yet, when the word ‘Leukemia’ was spoken, my day was anything but silent. Within a few minutes of being told my diagnoses, I was wheeled away for a CT scan and a bone marrow biopsy. I cried through both. All I could think about was my family. How would we tell our four children (Emily Rose Bowman, Robert Guidry, Sami Guidry, and Chayla Guidry). And Nisa…. what about my precious 19 day old miracle baby? I cried through my biopsy. Man, it hurt like heck, but it was my heart that hurt the most. I couldn’t stop crying. When the biopsy was finished the doctor left the room and let me be, but then I felt a hand rub my back and when I turned around I saw a nurse there. She was crying too. I told her I was sorry for losing it, but I was dreading telling my family. She said, “Honey, don’t be sorry, you have every right to cry, just remember, no one here will ever cry alone.” Yes this made me sob.

I finally gathered myself enough to get wheeled to my bed that waited for me down the hallway, but when the nurse opened the door, to my great surprise, there was my OB, tears running down her face and she was apologizing for not getting here in time to be with me for my tests. My OB is the one who sent me to the hospital when things just didn’t look right. And here she was. Crying at the door. She knelt down beside me and hugged me and prayed over me. Seriously, what kind of doctor does this?

As I was pushed closer to my room, I saw my husband talking on the phone, repeating again what at that moment seemed to be the darkest word in our language, “Allana has leukemia,” standing near him in the door way, was Nate Elarton. The look in his eyes is one I will never forget. It was one of sadness, deep love, and the tattletale signs that he was screaming on the inside wishing this moment was anything but true. He isn’t just our pastor, he is our friend.

Then as I came into the room, there I saw one of my best friends, Lisa K Shaull, holding my precious Nisa Faith, who was only 19 days old. Some how though I know Lisa was torn apart inside, on the outside, though I saw concern, I mostly saw a place of peace. When I was placed in my bed, I noticed another dear friend, one who is truly like a brother to me, Tim Rabara. Out of the three, he looked the most devastated, but I remembered he smiled and joked around that all the attention was on me, AGAIN. Trust me, in the months to come, Tim’s humor, though most might misunderstand, helped me A LOT!

As the day wore on, my room became silent, and Sam and I began to pray. God gave me the vision:

When I opened my eyes, I saw a beautiful music box, you know the one that has a beautiful ballerina spinning on top. He told me to come closer. As I did, I saw that it wasn’t a ballerina but a little girl dancing with her daddy. I smiled at the beauty they held, and yet a little bit of a hurt because I had never experienced such a thing. He told me to come closer. As I did, I saw that the little girl’s feet were on top of her dad’s. Tears formed in my eyes at the precious scene they made. He told me to come closer. As I did, I became that girl. His arms were gentle and yet strongly wrapped around me. My feet upon His. He said to me, “My precious daughter, I adore you. I cherish you. You are my prized possession. This road is going to spin us around and around. Keep your feet on mine; put your arms around me. No matter how fast we spin, I will never let go.”

My Heavenly Father kept His promise. He was with me every single step. I don’t look at this day, now 5 years ago as the most devastating thing that has happened to me or our family, oh sure, it was life changing! One of the most difficult journeys yet. The difference is that my faith in the One who held me never wavered for a second. I didn’t doubt His love for me. I didn’t doubt His faithfulness to be with me.

If you find yourself in a life spinning event, please allow me to encourage you… God loves you, more than you can comprehend. It doesn’t matter how much you doubt Him. It doesn’t matter how much you have pushed Him away, He still adores you. He finds you truly precious. He is calling to you, asking you to trust Him. This doesn’t mean your dance will stop or end, but it does mean that you can trust Him to never leave you or forsake you. He is faithful! He isn’t just faithful because I’m now looking at my cancer fight from a 5 year span, God is faithful because He is faithful. It’s that plain and simple. If He had chosen to take me home to be with Him, He would still remain faithful and He would be there with my family and help them through. Let God fill you with peace. Trust = Peace. I know. I lived it. He is so so good!

(a special thanks to Dani Herrera for taking the picture from my head onto paper)

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I am not sure what happened with my previous post but the photo I included caused most of the post not to be visible.  I have fixed that glitch and the whole post is now readable (I hope!) here

The fevers worsened.  We moved through Christmas and towards the New Year.  Sore throat spread to body aches and stomach pain.  These days so close to the day that everything changed are barely a blur in my memory.  I can remember little of what happened outside of the progression of the illness that we didn’t even know was there.  Even with the fevers and discomfort there was a blissful ignorance as to the journey that we were being called to embark on.  Just to put the whole piece into perspective, Nisa was born at 9:40 pm on December 16th.  The 17th is day one and we move on from there.  So we are looking at December 25th through January 1st.  As I review the various posts on Facebook I see faces of joy and innocence.  The fevers are a footnote to the joy of the season made even more joyful by the arrival of our miracle baby.  Allana even downplays the intensity of the fevers putting them at 102. By the night of the 31st they are spiking between 104 and 106, or maybe not wanting to worry her too much I fudge the numbers a little, I do not really remember..  A trip to the ER is only forestalled by the fact that the Ibuprofen is knocking them down into safer territory.  Still by New Years Day it was enough.  We called Allana’s OB office.  The doctor on call prescribes a heavy duty antibiotic and some anti nausea medicine to mitigate the side effects.  We start it right away, but of course she does not get better.  By January 2nd Allana is very sick.  The pain in her belly has gotten much worse.  We suspect a postpartum infection but don’t understand why the antibiotics do not help.  January 3rd is a Thursday.  We arrive at the OB office at 10:00 am and are ushered in to the examining room.  Our Nurse Practitioner listens patiently to the story, but as the physical exam progresses her demeanor changes.  There is an urgency to her motions as she feels the abnormal swelling in Allana’s belly, the tenderness and lumps at her joints.  I can feel my apprehension risings, but still there are so many pills, shots, treatments…a quick fix is in order…

“I have called the Flower Hospital, they are expecting her.”  What…we need to get some tests… “No we are admitting her.”  We have plans can it wait until Monday… “No, I want you there within 2 hours, go home settle the children and pick up what you need.  Once you are there they will begin running tests to see what is going on.”

FlowerJan3Well if you have to be in a hospital you might as well have a beautiful view and a beautiful woman to share it with.

It was only shortly after this picture was taken that I would hear the word “Leukemia” for the first time, mixed in with a couple of other potential causes for Allana’s test results.  If the fevers were the relentless clacking as the rollercoaster climbs the first rise, then this was the ominous pause before the first drop.  The ride would not stop for almost a year.  However while the emotions and physical aspects rode the speeding rails, God remained rock solid and faithful.  The outpouring of love from God’s people was incredible.  Even in the midst of the myriad of “spiritual” advisers who decried our lack of faith for continuing treatment or saw this as a sign of trouble in our walk with God; His love overwhelmed us. “Traveling deeper and deeper.  Closer closer to God”  Allana’s words would ring with truth in a way that neither of us could ever imagine.  Deeper and Deeper. Closer, closer to God…there was no where else to go.

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The LORD, the Psalmist’s Shepherd.
A Psalm of David.
1 The LORD is my shepherd, I shall not want. 2 He makes me lie down in green pastures; He leads me beside quiet waters. 3 He restores my soul; He guides me in the paths of righteousness For His name’s sake. 4 Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me 5 You prepare a table before me in the presence of my enemies; You have anointed my head with oil; My cup overflows. 6 Surely goodness and lovingkindness will follow me all the days of my life, And I will dwell in the house of the LORD forever .

So here is the reality of The Nineteen days.  We never know when we are living them out.  The Guidry’s are not really unique in this experience.  I would guess that everyone of you has walked through their own Nineteen Days, innocent of the storm that was just over the horizon.  The fact is that this was not my first journey through the Nineteen Days, but it is my first journey through them where I truly understood David’s heart as he penned this Psalm.  How we walk out the Nineteen Days is a function of this Psalm.  Sentence by sentence it is a guide written by a man who walked through his own Nineteen Days many times over.

 He makes me lie down in green pastures

What a lovely picture in words.  We can all envision ourselves laying out in luxurious grass, running our hands through it and wiggling our toes.  I certainly do not want to ruin your revery but lets get back to the imagery of David’s psalm as a whole.  It is easy to do when we go back to the Hebrew.  Deshe’ Naveh, is translated “green pastures”.  The imagery is a little more direct and specific.  Deshe’ is not the color green but specifically refers to fresh grass, as opposed to withered, dry grass.  It is the kind of grass that a shepherd would recognize as healthy and nutritious for his sheep.  Naveh is a specific reference to a dwelling place for both sheep and shepherd.  Nathan the prophet tells David that it was God who took him from the sheep and the “Naveh” to make him king.  Scripture repeatedly uses this word for The Lord’s “habitation” or “dwelling place”.  Deshe’ Naveh is not about a fuzzy, feel good place, it is about a place that promotes real health and wellness for us in the presence of our great shepherd, in the presence of our God.  Like sheep we are all too ready to eat whatever toxic plants look good at the moment (yes sheep will poison themselves if left in an environment with plants toxic to them).  It is only when we follow our shepherd that we will find the Deshe’ Naveh that we so desperately need.

So by now you are probably asking, what does this have to do with the Nineteen Days?  It is easy to see and feel the Deshe’ Naveh in the sunny calm of the nineteen days.  Too often we spend the Nineteen Days wiggling our toes in the grass instead of taking in the nutrition and wellness that is the provision of the Good Shepherd.  Then when the fuzzy comfort of the sunshine is suddenly replaced by bitterness of the storm we think that the Deshe’ Naveh is gone and we run.  Like silly sheep we run from the very place of health and wellness that God has made our habitation over some wind, thunder, lightning and rain.  We are tempted to eat the toxic greenery, just because there it feels like the sun is shining.  We break our legs in the rocky crags as we run to what appears to be shelter.  Will the good shepherd track us down and beckon us back to the Deshe’ Naveh, even carry us while we heal?  Amen and Amen YES!  But he also honors our free will and if we do not surrender to the arms of the shepherd the results can be devastating to all.

I pray true health and wellness for you all.  May you always choose to rest with Your Shepherd in the Deshe’ Naveh

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The LORD, the Psalmist’s Shepherd.
A Psalm of David.
1 The LORD is my shepherd, I shall not want. 2 He makes me lie down in green pastures; He leads me beside quiet waters. 3 He restores my soul; He guides me in the paths of righteousness For His name’s sake. 4 Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me 5 You prepare a table before me in the presence of my enemies; You have anointed my head with oil; My cup overflows. 6 Surely goodness and lovingkindness will follow me all the days of my life, And I will dwell in the house of the LORD forever .

So here is the reality of The Nineteen days.  We never know when we are living them out.  The Guidry’s are not really unique in this experience.  I would guess that everyone of you has walked through their own Nineteen Days, innocent of the storm that was just over the horizon.  The fact is that this was not my first journey through the Nineteen Days, but it is my first journey through them where I truly understood David’s heart as he penned this Psalm.  How we walk out the Nineteen Days is a function of this Psalm.  Sentence by sentence it is a guide written by a man who walked through his own Nineteen Days many times over.

The Lord is my Shepherd, I shall not want.

This premise is a must.  It is not a theory, a cute saying or even a prayerful wish.  It is only when you function within this Spiritual Truth without regard to apparent circumstances that you can look back at the Nineteen days without fear.  This passage would of course be out of step if it was talking about a fulfillment of all my personal desires.  The translation of the Hebrew word chacer here as “want” is unfortunate in a modern translation.  This word is really about lacking basic needs (not even cultural and certainly not the “me” generational concept of needs).  It could even be translated “become empty”.  Sodom and Gomorrah were destroyed because they lacked (chacer) ten righteous men.  The reality is that the shepherd does not serve the “wants”/desires of His flock.  He serves the needs of his flock as he guides them in His wisdom and for His purposes.  It is when we release our own will to the Shepherd that we rest in the assurance that we will never “become empty”.

 

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