Posts Tagged ‘Bone Marrow Transplant’

Social Distancing Revisited

Posted in Leukemia, Life and Ministry, tagged , , , , , , , , , on April 17, 2020| Leave a Comment »

SD

We didn’t call it “Social Distancing”.  It wasn’t a darling phrase for the media, social or otherwise.  However the reality is that this “new” phenomenon is not so new.  It is rooted in another idea that is not so new “Social Anxiety”.  I have watched this bad boy literally destroy lives.  People who refused to leave the safety of home for years, or even the safety of a single room.  I am guessing that some with Social Anxiety are feeling quite justified right now.  The truth is that the only difference between Social Distancing and Social Anxiety are a few grains of truth.  Both are practiced in different intensities by different people for different reasons. They both separate us from the fellowship that is a hallmark of our faith.

Allana and I battled with those grains of truth, along with battling Acute Lymphoblastic Leukemia.  Social Distancing is not new to us.  In fact in the big scheme of things our current situation is easy going.  Rewind to 2013, Allana is undergoing chemotherapy, innocuously called Hyper CVAD…except for maybe the Hyper part. The grains of truth are rooted in the fact that this protocol all but destroys a person’s immune system.  This was followed by a Bone Marrow Transplant.  Radiation and even more devastating Chemotherapy did in fact destroy Allana’s immune system so it could be replaced.  Social Distancing became a way of life almost literally overnight.  January 3rd we are in the hospital for Allana’s fever and abdominal pain.  January 4th we are in a special ward with its own ventilation system and limited access.  The cancer had already started the damage that the Chemotherapy would finish.  Suddenly, someone, anyone could quite unintentionally kill Allana with a single bacteria or a misplaced virus.  Our introduction to Social Distancing had begun.  It would separate us from our church, ministry, friends and most difficult, our children and family.  A single blessing was our newborn Nisa.  She was only 19 days old when Allana was diagnosed.  I made two decisions. First, I would not be separated from Allana throughout this experience and Second, Nisa would be with her mother for as long as she possibly could.

Allana had little choice but to practice Social Distancing.  The cancer and chemo left her tired and in pain much of the time.  Carefully orchestrated moments with her children and carefully vetted friends and family were in some cases more than she could handle.  Even as I walked the hallways of the hospital, purchasing coffee or food or just walking with the baby while Allana slept, I was acutely aware of the threat that all those around me posed.  Laying in bed at night I would inventory how I felt…was my throat sore…was that a cough…was I getting sick?  Would I have to leave her?  Compulsive hand washing, masks and minimal movement became the routine.  I used hand sanitizer in and out of the room (conveniently placed on the wall just outside the door).

Things became more serious when she did contract an infection.  The uncontrollable fever and then the incoherent imaginings were the warning bells that signaled that something was wrong.  At one point through the night I thought we were going to lose her.  Being in the Blood Cancer ward of the Cleveland Clinic has its advantages and they were able to stabilize her. Fortunately other than the stories I tell, Allana has little memory of this episode and what she does remember consists mainly of the hallucinations and dreams that she experienced.  Social Distancing became social isolation.

As Allana recovered and the new Bone Marrow took hold, we began the long process of finding the new normal.  The new normal still included the fact that someone could quite unintentionally end Allana’s life.  Shortly after being released from the Clinic but  needing to remain in Cleveland, we tried to reestablish a norm, Sunday morning Church.  We picked a campus of a large AG church in Cleveland not far from where we were staying.  The pastor would be glad to know that his people were incredibly welcoming.  Unfortunately it was terribly terrifying.  I was unable to establish a perimeter (six feet or otherwise) around Allana.  One especially well meaning woman rushed up and gave her a big hug.  Social Distancing became Social Anxiety just that quickly.  While there were grains of truth in our Social Distancing there was a fundamental change in us.  That is the Social Anxiety part.  It honestly forever changed who we are and how we operate.  Fortunately God is good and there has been much recovery.  This recovery was a matter of years not days or weeks. It followed Allana’s physical recovery to some degree but the discomfort and avoidance of social situations have not evaporated as quickly as the grains of truth have faded in meaning.

All this is to say that Covid-19 and the introduction of a culture of Social Distancing has forever changed all of us.  The normal  expectations of health and safety are assaulted by every news article and political speech.  When the rules subside, the fear will still be there…especially for those who became desperately ill or had a loved one become desperately ill.  There are grains of truth in the distancing and in the fear.  However as those grains fade in importance we will as a people and most particularly as the people of God need to recognize the change, the impact on who we are and follow the Holy Spirit’s leading out of the wilderness.  We can be the pillar of fire and smoke that will lead others out of their wilderness.  It will be a time for the Church to step up and truly be the body of Christ led by the Holy Spirit and full of Healing.

“but for you who fear My name, the sun of righteousness will rise with healing in its wings; and you will go forth and skip about like calves from the stall.”     Malachi 4:2

 

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The Nineteen Days 2018

Posted in Leukemia, Life and Ministry, tagged , , , , , , , , , , , , , , , , , , on December 16, 2018| Leave a Comment »

19

Nineteen days,  who knew that nineteen days would ever come to be so meaningful to me. I am not going to digress to the back story that builds the significance of these days.  You can get a sense of the whole journey here.  It represents the realization of on incredible Miracle in our lives and the beginnings of another.  Day 1 will forever be a joyous day.  We will celebrate the birth of Nisa Faith year after year.  Day 1 is the culmination of nine months of a melange of concern, faith, fear, trust and surrender.  It was a day of arrival, of life, of completion.  It was a day of overt blessing.  December 16th of 2012 was a joyous day.  What Allana and I did not know, what we could not have known was that it was a day of provision, a day of strength given.  I would be lying if I said that I sat at this computer with a solid thesis or a planned allegory.  The reality is that when I wrote this it was my first opportunity to truly experience and embrace the nineteen days.  When they occurred they were simply another nineteen days in the Christmas season and in 2013 we were still too deeply embroiled the Allana’s battle against Leukemia and the recovery from the Bone Marrow Transplant for me to experience them the way that I did as I was writing.  Now, five years out we sit at a new crossroads.  We have moved from sickness to health and out of the ashes of cancer God is teaching truths of life and ministry that are new every day.

Day 1 was not without its difficulties, ask any mother and she will tell you that this particular joy comes with its own brand of pain.  Two dear friends who were expecting when I originally posted these thoughts, engaged in a tongue-in-cheek argument on Facebook concerning any man’s ability to truly conceive of the trials and eventual pains of pregnancy and birth.  I do not even pretend (or desire) to really understand, preferring to stand by Allana’s side than in her place for this particular event.  Chayla’s birth was a stroll in the park, Nisa’s was more like a kick in the gut and then a short sprint to the finish line (a race in which Nisa beat our doctor and surprised our nurse).  Still, there she was, perfect, beautiful, a miracle from the hand of God.  We basked in the joy of the now.  We knew it was day one, but not that there were only 18 days left to this paragraph of our lives.

The frenzy of the night (Nisa was born at 9:40 pm) and the flush of the first day gives way to a wash of relief. The tensions of the past nine months; the fear at each ultrasound appointment; the waiting for the pronouncement that a new cycle of loss and grief would begin; they all fall away.Nisa Day 2

We joyfully prepare to bring Nisa home.  I am not sure that my words can express Day 2 any better than the twinkle in Allana’s eyes.  This Christmas gift is probably the best that we have ever received.  The whole family rejoices at the absence of that fateful “talk” with Robert, Sami and Chayla.  Each of us in our own way process the losses of the past in the joyous light of Nisa’s arrival.  We cannot help think of the siblings in heaven, from the Crashing resonation of Josiah’s passing to the unheralded passing of Ezra Matthew.   Day 2 becomes about rest, enjoyment and blessing.  The gathering storm is still beyond the horizon.  There is no sense of the deadly changes perhaps just beginning to take place.  Still what would come does not erase the joy and peace of Day 2.  It only serves to highlight it and to make me more thankful for God’s grace than ever.

NisaHome

 

 

The frenzied posting, calling and emailing is over.  Nisa Faith has been announced to the world.  As we approached the day that we celebrate our Saviors birth, we finally get to truly celebrate Nisa’s coming.

D. A. Precious: And those cheeks! I’m so happy for you!
December 19, 2012 at 1:48am · Like

Allana Belrose Guidry: I know. They are getting lots of kisses
December 19, 2012 at 1:54am · Like · 2

Nisa’s cheeks are getting a lot of kisses.  Allana is feeling a little more tired than usual….but then she just had a baby and she is not as young as she used to be.

We were prepared for all of the life changes that a newborn brings.  Bassinet, Pack n Play, bottles, formula, car seat, diapers etc….  What we did not know was that God had also prepared us for the changes that most likely even on this day six years ago were beginning to take place in the depths of Allana’s bones (weird to type that and not mean it metaphorically).  Eleven years of growth through struggle as a family, as individuals and as children of the Living God was about to be tested in a way that we had not imagined even in our wildest nightmares.  Still even as we were prepared for Nisa’s arrival, God had prepared us for that which we could not have even begun to be ready for.  So many crossroads where God directed what seemed the long and windy path.  It seemed so foolish, as foolish as buying diapers and preparing a nursery for a baby that would never come.

Nisa was here, and the long and windy path would soon be clear.

 For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need.

Hebrews 4:15-16

The frenzy of birth fades in the light of our celebration of our Saviors arrival on the scene.  These days are filled with wonderful preparation and quiet enjoyment (with little sleep).  We are blessed by the generosity of so many of you who will read this, as we were suddenly and unexpectedly blessed this year.  Then as now I don’t know why I am surprised when I pray for provision and it comes in abundance.  Presents are wrapped as Nisa is loved and coddled by so many.  The preparations made over the previous month are in full use now.  Allana is enjoying her Christmas blessing, drinking in Nisa’s presence having desired this particular beverage for so very long.

She wakes on Day 7, a little sore, her throat a bit raspy and maybe just a touch of fever.  Not to worry, she did just give birth and the crazy weather is enough to make anyone a bit….

The preparations made over a lifetime by an all knowing God are about to be tested.  Quiet joy and praises rise from home and ministry wrapped in one.  So much has been put on hold as we waited for Nisa.  We are already making plans for the Spring and Summer, mapping out what our lives and ministry will look like.  We did not know that in less than two weeks everything would change, but God had been molding us into “change managers” for some time.  Early in our journey to full-time ministry when I had left the Hospitality industry God had given me a word that I would only know what I would be doing and how we would be living 30 days at a time.  It was frustrating and difficult but it prepared me for the runaway train ride that was coming.

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.

I am going to follow this up with more posts around The Nineteen Days.  I too often forget to lead with the fact that Allana came through treatment well and has been cancer free for over 5 years now.  While we have weathered short forays into ministry together through the past years,  we are again engaged together in His service.  Grandchildren have come.  Children have grown, married, prepared for High School and College.  Nisa turned 6 today.  We walk the Hupomone road following His guidance and blessing.  We are so thankful for all of those who have held us when we were weak and walked with us as we have traveled.

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A Lesson in Hope: Reprised

Posted in Leukemia, Life and Ministry, tagged , , , , , , , , , , on September 13, 2018| Leave a Comment »

The Chemo Tree

For in hope we have been saved, but hope that is seen is not hope ; for who hopes for what he already sees? But if we hope for what we do not see, with perseverance we wait eagerly for it.

Romans 8:25-26

 

Cancer for all its evil, all its robbery, is a great teacher of true hope.  As I sit here preparing to fly to Florida for the memorial service for my mother I am reminded of God’s lessons in hope, God’s lessons in Hupomone.  “Is this the sum of all your fears, or the truth of all your hope?” Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me. (John 14:6)  My mother is with the Father.  She stands in our family as the truth of all our hope.

I have wrestled with this post for weeks. In fact I am still struggling with it and will probably continue to struggle with it. It is not meant to be doctrine or even counsel. It is simply emotional and spiritual transparency from a moment in which God spoke into my life.

Some time ago Real Hope with Perseverance sat next to me. He probably does not even realize how profoundly he impacted my life. God is so amazing in the way that he pairs the events of our lives with the biblical truths that he is laying on our hearts. This man and his loved ones walked the path that Allana and I, along with our family and so many of you walked over the past 18 months. He road the rollercoaster of emotion. He even walked the same hospital hallways. He prayed and was prayed for. He held those he loved and was held by them. A few short weeks before I met him the vibrant woman of God, his beloved wife, whom I will only meet when I get to stand in the presence of my God died.

As I sat there with my lovely Allana across from me God whispered in my ear…ok maybe he shouted. “Is this the sum of all your fears or the truth of All your hope.” “But if we hope for what we do not see, with perseverance we wait eagerly for it.” Hope and perseverance are inexorably entwined for the believer and it is not hope in the visible and perseverance to the seen but a hope that is embedded in faith. ” Now faith is the assurance of things hoped for, the conviction of things not seen.” Hebrews 11:1

All the numbers that I had heard and read rolled through my mind, percentages of life and death. Grief and fear walking alongside faith and hope as I stood with my beloved. The same grief, fear, faith and hope that I saw sitting next to me. “Is this the sum of all your fears or the truth of All your hope”

Blessings,

Sam

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Five Years

Posted in I'm Just Sayin', Leukemia, Life and Ministry, True Beauty, tagged , , , , , , , , , , , , , , on June 12, 2018| Leave a Comment »

June 18th

Another great piece by my wife and ministry partner Allana.

5 years. It’s a big deal. It’s a little surreal being here in this moment. Isn’t it funny how when you are walking through the thick mud of life that it can feel like it’s inching along, but then it seems as though you blink and you are standing on the mountain top and you just marvel at how far you’ve come.

I knew from the moment that I was diagnosed with leukemia that the road would be a difficult one to travel on. But I wasn’t the least bit ready for HOW difficult and to be very honest, how lonely this road would be.

FightThe fight inside yourself between who you used to be, who you want to be, and who you are is extremely tiring. This is real. I’m going to be totally transparent.

I’m thankful for every single person in my life who reached out to me during that time. The love and support, from so so so so many helped me through! I will be forever grateful. Even to those who never spoke to me and yet still prayed for me and my family. Each one of you made the way a little easier.

A few have continued to be an active part of my life through these years of cancer and transplant recovery. You know who you are. Thank you so much for supporting me, loving me, praying for me and endlessly cheering me on. Thank you for caring enough about the old me to press through to love the new me…. even when it took me SO long to accept and grow to love the new me too.

Thank you for seeing me as strong and courageous, even though those who are closest to me saw my very strong and very real battle against sever anxiety. You didn’t judge me. You just loved me where I was, yet continually giving me messages of God’s truth. For this I am grateful because it has helped me heal from my fear.

Thank you for understanding that it has been a very slow process for me to even want to leave my house. After being away from my home for 100 days while in Cleveland, and that doesn’t even count all the hospital visits before that and a couple afterward, as well as the monthly trips to Cleveland over the past 4 years…. when I was home, I just wanted to be home and not go anywhere. This is for sure a new me. I know for some, especially for Samantha, this was extremely difficult to get used to. We were always busy doing something and going somewhere and it was weird to have mom just want to sit on the couch and snuggle with her family.

Yes, some of these changes haven’t been awesome like I’ve been in an inward fight that has left me more exhausted than I’ve ever been in my life. There has been more times than not that we get to church, I find my seat, I sit through greeting time, once service is over, I basically run to grab Nisa from the kids’ area and out to the car, barely looking anyone in the eye. I am sorry if you have been offended by this. It isn’t personal…. I’ve been tired, I’ve been dealing with things inside, I’ve just needed my space. Thank you for those who have loved me through this very strange time in my life.
I know it’s also been difficult to deal with my chemo brain – man, it is a real thing and something I’ve struggled with so much. Forgetting everything. Like really scary bad forgetting.

But, some of my changes haven’t been all bad. In fact some very good changes have come through my cancer fight and recovery.

I am more bold. I find I say what I think. Though this has been a learning curb to try to keep my sweetness while sharing something tough with someone. I’m less afraid to give my opinion. I have more confidence. I’m even more closer to God because HE has been the only ONE who has been able to walk with me through every single moment. Every single frustrated hissy fit while trying to desperately find the old me and hating the new me. He has stayed with me speaking truth to my heart when I was feeling unlovely. I’m so thankful for a personal God who loves me even when I’m being difficult and that He still finds me precious. There are no words to describe my gratitude of God’s love. He continues to rescue me and save me and this is why I cry so much through worship. He’s such a loving God.

For Sam and I this has been a very strange and difficult journey. Yet, one we both feel so blessed to have gone through it. It’s been… well… interesting…. trying to figure out our roles with each other – where does husband and wife fit in with caregiver and patient?! We both have had to go through some freak out moments and time to heal from the whole experience. Cancer changes people. Not just the patient but everyone in the family. It’s been frustrating and scary and yet exciting and wonderful to take our commitment to each other and fall in love with who we both are today. Our marriage is held together with so much Holy Ghost Duct Tape – there’s not much that could break us apart now 😍

Yep. This sure has been a journey. A painful yet joyous roller coaster journey. 5 years. There’s so much more to share…. I’ve been pretty quiet over the last couple years….. I have a feeling, that may change. 😉 I think I’m ready to start speaking again.

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Results vs Relationship

Posted in Leukemia, Life and Ministry, tagged , , , , , , , , , , , , , , , , on June 8, 2018| Leave a Comment »

BMT Departure

This is Allana’s Facebook post from five years ago on June 5th as we prepared to head out to Cleveland Clinic for her Bone Marrow Transplant.

Today is the day Samuel and I will pull away from the house, hand in hand, but with so many questions not answered. Our kids will wave to us goodbye, but with so many things unanswered. I will not go into this thing cocky and say it will go this way or that.
But this is what I am sure of –
God completely adores me.
God is walking with me.
God is my healer, my complete healing may be here or in heaven, but either way, He heals.
God will help me during the lonely times, the times I miss my kids.
God will give strength to my husband.
God will help my family here in Toledo.
God is going to be very God. I’m not sure what THAT will look like but I know He will show HIS glory in this.
This journey has taught me a lot and is teaching me still.
I will give God praise forever.

And now 5 years later…..

5 years ago today was THE very hardest day of my life.

Samuel’s brother, Paul, came all the way from Boston to drive Sam and I 112 miles away from home. I got in the car, smiled through the tears and waved goodbye to my 5 kids and my mom and we drove to Cleveland for my Bone Marrow Transplant.

I knew the risks. I knew there was a chance that this could be the last moment my kids saw me alive. Once we drove out of sight of the house, Paul put on some worship music and even though none of us said much, I know my mind was in a state of constant prayer. I hated leaving my children. Even baby Nisa had to stay at home this time. It would be too dangerous for us both for her to be there with us. I would be in Cleveland for 100 days.

After some time driving, Paul and Sam went to get coffee. This song came on and it touched my heart so much.

Are you standing in the midst of a crossroad? Do you know which way you are going but you have no idea what to expect there? Have you had to say goodbye to someone you love? Is your heart filled with deep pain you aren’t sure how you are ever going to get out? Are you in a fight for your life? For your heart? For your soul?

I want to encourage you to listen to this slow song that declares truth. It’s funny that the guys were gone through this entire song. I listened with tears streaming down as my heart once again stood back up and walked forward with courage to do what I needed to do.

5 years later, I can tell you… the battle was difficult. Being away from my kids for so long was torture. Living day by day not sure if my family would see me again was scary. BUT GOD. But God was there in every moment. God helped me and gave strength to walk to my 9 sessions of full body radiation. God gave me courage to go through the hardest chemo treatment yet. God helped me hold on to the hope in HIM while the docs destroyed my bone marrow to give room for my new marrow. God helped me when I ended up with an infection that circled quickly through my blood and they weren’t sure I was going to make it. God gave strength to my husband to endure watching his precious wife get a hair away from death.

But what if…. what if I had died? Would God be less faithful? No. God would still be faithful. I would be dancing on streets of gold while HE took care of my family. I’m glad our story is different. I’m thankful that my family didn’t need to endure THAT type of trust and faith in God….

I do want to take a moment and ask you to say a prayer for the mothers and fathers, brothers and sisters, sons and daughters, husbands and wives, who have had to say goodbye to someone, especially those who have died from cancer or from a complication from a cancer fight. Another cancer warrior, Amy Beth, that I met in Cleveland had a similar story to mine, only she was pregnant while diagnosed, passed on from this life to another leaving her husband and young son. She went through her transplant just fine but the complications afterward took her life. My thoughts are with Amy Beth’s family and so many of my friends on here have had to say goodbye to a family member or close friend to cancer.

I would love it, if you would place in the comments the name of someone you love who has won the battle of cancer in heaven so that today I can pray for their family and friends. Also put a name down of yourself or someone you love who is currently fighting against cancer or if you/they are in the midst of the 5 year recovery. I would like to pray for you/them also.

God does hold everything in His hand. It doesn’t always turn out the way we want, but HE is Always Faithful! HE is always there to help us. I believe it.

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Tis So Sweet

Posted in Bible Study, I'm Just Sayin', Leukemia, Life and Ministry, tagged , , , , , , , , , , , , , , on April 17, 2018| Leave a Comment »

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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The Fire of God

Posted in Bible Study, Life and Ministry, tagged , , , , , , , , , , , , , on June 15, 2016| Leave a Comment »

 

FIFM

 

“The angel of the Lord appeared to him in a blazing fire from the midst of a bush; and he looked, and behold, the bush was burning with fire, yet the bush was not consumed.”  Exodus 3:2

There is a fire that comes as a gift from God.  It is a fire of empowerment.  It is a fire generated from the unlimited love that God has for mankind.  God presents this fire to man as a guide, as inspiration and as an internal power to effectively serve Him.

“For this reason I remind you to fan into flame the gift of God, which is in you through.   the laying on of my hands. For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline.” 2 Timothy 1:6

Power, love and self-discipline are the hallmarks of this fire.  It is a fire that sets God’s people on a path of redemption, for themselves and for those to whom God sends them. It is in fact the very fire of redemption for those who believe.  The fire redeems with a view to service.

“Then one of the seraphim flew to me with a live coal in his hand, which he had taken from the altar.  With it he touched my mouth and said,’See, this has touched your lips; your guilt is taken away and your sin atoned for.’  Then I heard the voice of the Lord saying, “Whom shall I send?  And who will go for us?”  And I said, ‘Here am I.  Send me!” Isaiah 6:6-8

It is not a fire that is a once and done event in our lives.  It needs to be cultivated and nurtured.  We fan that flame as we develop our relationship with God.  I think of all that has transpired in our lives since God spoke 2 Timothy 1:6 into our lives in 2005 and gave us the name “Fan Into Flame Ministries”.  It is in the difficulties of life that we are able to build the flames of the Holy Spirit inside us.  Paul goes on to say, “That is why I am suffering as I am. Yet this is no cause for shame, because I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day.” 2 Timothy 1:12.  

Yesterday was the third anniversary of my wife Allana’s bone marrow transplant.  It was both a moment of life and the beginning of one of the most difficult periods in my entire life.  As I look back I can see the Holy Spirit working through the difficulties, stripping away self-reliance and providing opportunity for me to grow in Him.  Timothy was experiencing incredible difficulties in his work in Ephesus.  Being one in urban ministry I can appreciate his experiences and understand his desire to throw in the towel.  Even more so as we walked the path of Leukemia there were times that I felt like I simply could not continue.  However it was at those moments that God provided Paul’s in my life, to uphold me in prayer, wisdom and love.  It creates an interesting cycle.  As one fans into flame the gift of the Holy Spirit, the Holy Spirit enables us to guard the very relationship that fans into flame the gift.  “What you heard from me, keep as the pattern of sound teaching, with faith and love in Christ Jesus. Guard the good deposit that was entrusted to you—guard it with the help of the Holy Spirit who lives in us.”  2 Timothy 1:13-14

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A Lesson in Hope

Posted in Leukemia, Life and Ministry, tagged , , , , , , , , , , on August 18, 2014| Leave a Comment »

The Chemo Tree

For in hope we have been saved, but hope that is seen is not hope ; for who hopes for what he already sees? But if we hope for what we do not see, with perseverance we wait eagerly for it.

Romans 8:25-26

I have wrestled with this post for weeks. In fact I am still struggling with it and will probably continue to struggle with it. It is not meant to be doctrine or even counsel. It is simply emotional and spiritual transparency from a moment in which God spoke into my life.

Some time ago Real Hope with Perseverance sat next to me. He probably does not even realize how profoundly he impacted my life. God is so amazing in the way that he pairs the events of our lives with the biblical truths that he is laying on our hearts. This man and his loved ones walked the path that Allana and I, along with our family and so many of you walked over the past 18 months. He road the rollercoaster of emotion. He even walked the same hospital hallways. He prayed and was prayed for. He held those he loved and was held by them. A few short weeks before I met him the vibrant woman of God, his beloved wife, whom I will only meet when I get to stand in the presence of my God died.

As I sat there with my lovely Allana across from me God whispered in my ear…ok maybe he shouted. “Is this the sum of all your fears or the truth of All your hope.” “But if we hope for what we do not see, with perseverance we wait eagerly for it.” Hope and perseverance are inexorably entwined for the believer and it is not hope in the visible and perseverance to the seen but a hope that is embedded in faith. ” Now faith is the assurance of things hoped for, the conviction of things not seen.” Hebrews 11:1

All the numbers that I had heard and read rolled through my mind, percentages of life and death. Grief and fear walking alongside faith and hope as I stood with my beloved. The same grief, fear, faith and hope that I saw sitting next to me. “Is this the sum of all your fears or the truth of All your hope”

Blessings,

Sam

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A Patient’s Story: Managing Change

Posted in Leukemia, Life and Ministry, tagged , , , , , , , , , , , , , , on May 20, 2014| 3 Comments »

Today Allana and I had the opportunity to share our story at the Patient Experience Summit here in Cleveland.  It was such a blessing.  Amy and her crew  from Jamie Belkin Events made the whole process wonderfully smooth even if we did get bumped up 30 minutes.  As always everyone from The Cleveland Clinic did an incredible job making us feel comfortable.  Because of the nature of the event video or audio of the session will not be available but I wanted to post the transcripts here to share with all of our friends and family.  We thank you for all of your support throughout our journey!

(The numbers are PowerPoint transitions and Allana’s piece is in Blue- so you can imagine the blue with lots of tears and emotion 🙂

The PowerPoint if you would like to see it (nothing fancy)

The Video

Introduction: Sam (1)

Good morning!  I am Sam Guidry and this is my wife Allana.  We are very excited to be here this morning!  We would like to thank Dr. Cosgrove and the Cleveland Clinic for inviting us here today to share a little of our experience with you.  I would also like to thank Dave Braun from the Cleveland Clinic Media department and his entire staff for that wonderful video!  Though I do want to clarify one thing.  SHE cried often throughout the filming that went on, I had one weak moment and of course….But seriously Dave and his team did an incredible job of capturing the essence of our story while also being incredibly sensitive to the rollercoaster of change that is the Leukemia and Bone Marrow Transplant experience.

The first definition of Change at Mirriam-Webster.com is(2):  “To make different in some particular; To make radically different; to give a different position, direction or course to”   This is an ongoing process for everyone.  What this process entails, how it occurs and what we believe about it impacts every aspect of our lives.  Why don’t I let Allana tell you a little about the “change” in our lives.

Background:  Allana(3)

Sometimes change alters your entire life in a single moment. 

Like when I was 22 and looked down at the positive pregnancy test. I knew the course of my life was forever changed.

Sometimes change happens slowly, but when you look back you can pinpoint the moment that was going to change everything.

Like shortly after my 23rd bday.  I simply jumped into a yahoo game of gin rummy. I didn’t know it at the time, but this event would change my life forever.

9 very short months later, on December 15th 2001, I married my Internet sweetheart.  I became step-mom to Sam’s two boys, John was 16 and Robert was 6. Sam became step-dad to one year old Samantha.  Change happened rapidly as Samantha and I moved from MI to PA and then we all moved to Indy.  And I can’t forget the blessing of our little family blender, Chayla Louise, was born on April 21st 2003.

Every patient has a story, and this is mine…

Sam and I tried right away to have more children, but I was unable to conceive. Until November 2005 when we rejoiced at finally becoming pregnant again.

March 9th 2006 was another huge moment of change.  We went to our 20 week docs appointment.  We were hoping to find out the sex of the baby.  However, we weren’t the least bit prepared for what was going to take place.  I laid on the table, waiting for my doctor to use her little Doppler to find the heartbeat.  She moved one way, then the other, up high, down low.  But no heartbeat was found.  She got me in to have an ultra sound. As I looked at the ultra sound screen, my little jumping bean was completely still, there was no heartbeat.   

This was the start of our heartbreaking journey of change as we lost 6 more babies in a 4 year span.  August 2010 was our last loss.

From that moment on life changed for the good.  Sam and I became associate directors of a small outreach center called The Lewis House.  It was great restarting our lives helping others.  The Lewis House was all about caring for those around us.  We were a safe place for the kids in the neighborhood to hang out after school.   We gave out food and clothing and other household items.  We loved working together as a family helping those in need.  2 years passed by without me being pregnant, so I figured I was done, and just used my longing to have more children to pour into the children in our area.

April 2012 the waves of shock hit once again, staring down at a positive pregnancy test.  Let me tell you, fear struck hard.  Every milestone was agonizing – 12wks was milestone number one.  5 out of the 7 babies had passed away between 12-14 weeks.  Going in for our ultra sound was frightening.  But there on the screen was a precious heartbeat.  20 weeks was another milestone.  I wish I could say that the baby’s movement was enough to not let me worry, but it didn’t.  Fear overtook.  I shook all the way to the ultra sound appointment, I shook while waiting in the waiting room.  I shook as I laid upon the table, but there it was, a beautiful strong heartbeat, our sweet little girl alive and well. 

December 16th 2012 our little miracle baby was born.  The nurse placed her on my chest and I cried right along with my Nisa Faith, she was here, her screams of life echoed in my heart.  The next milestone was taking her home with us. I documented on Facebook placing her in the car.  Then Sam documented us arriving at home and placing her in her bassinet.  Sam and I looked upon our sweet baby, with a higher than high excitement that we actually had a baby. 

Christmas Eve I woke up with a sore throat and headache.  But I pushed it aside and I enjoyed our holidays with our family.  Praising God that our own Christmas miracle had arrived safe and sound.

Every day after that, I felt worse and worse. Fevers started to spike and I started having abdominal pain. I shared on Facebook what I was experiencing and I had a bunch of people tell me that I should go to my doctor, it could be a uterine infection.  So went in to see my doc and was told to go straight to the hospital. 

Not even 24 hours later, 19 days after Nisa Faith was born, the “blood doctor” as he called himself, came into our room with tears in his eyes.  My heart stopped. His face was pale. You have Leukemia.  Nothing made sense after that.  It was kind of like being in a Charlie Brown cartoon. Everything the “grown ups” were saying sounded like a foreign language in a distant land. I was quickly wheeled down to a CAT scan and then rushed off to get my first bone marrow biopsy.   I laid there sobbing.  Yes the biopsy hurt like heck, but it was my heart that was breaking.  Flashes of our past flowed through my mind.  I remembered telling our kids that our little Josiah at 20 weeks in my belly had died.  I remember telling the kids about all the other losses.  I remember the wails each and every time.  I could only imagine how much more painful this was going to be.  I sobbed and I sobbed and I sobbed.  Even when the biopsy was over, I could not stop crying. The nurse sat there the whole time. She held my hand so tightly.  When I finally looked up to tell her how sorry I was for losing it, I cried even harder as I looked up to her own tears pouring down her cheeks, and she said “honey, don’t be sorry… you will never cry alone” – Once I had collected myself once again and got situated into a wheelchair, the nurse opened the door and there was my doctor.  The one who had told me to go to the hospital in the first place.  She too had tears running down her face and she said how sorry she was that she didn’t make it in time to be there for the bone marrow biopsy.  She held me and we cried together.

The time I spent at our local hospital were many moments just like these.  I started my induction right off the bat.  Our life became a whirlwind of change.  Flower Hospital allowed Nisa to stay with us, because she was so little.  3 ½ weeks later I was released a very different Allana, a very different wife, a very different mother.  I was too weak to care for my family.  I could hardly make it to the bathroom 15 steps away from my bed.  The most I could do was let my kids snuggle with me during a movie.  I lost my hair and became very embarrassed by my looks.  And I became sick Allana, sick wife, sick mother, sick friend to everyone around me.  These were the changes I wasn’t prepared for.  I didn’t know how much of me I was going to lose.

Our doctor suggested that we go to The Cleveland Clinic for the remainder of my treatment.  I was extremely scared being so far away from my family and church support.  And for me, it would be a major deal breaker if Nisa couldn’t be with us.  Even though I was a very different mom to her then I was with my other kids at her age, she still needed me and she needed Sam. She needed those precious moments where Sam would lay her on my chest and we would both fall asleep.  After losing 7 babies and finally getting my miracle baby, I was not about to let her go.  She needed me, but I needed her too. I praise God that the Cleveland Clinic was willing to bend rules for our personal experience.  My baby knows me and I know her.  The Cleveland Clinic made our very tragic change bearable by making our patient experience the best it could be.   

 

Managing Change:  Sam(4)

Managing change.  Two simple words, but they contain an almost unmanageable amount of information.  This very moment every single person here is managing a whole array of change, personal, professional, financial, physical, spiritual and probably in areas that I have not even conceived of.  Mapping every facet of change in a single person’s life could possibly exceed the complexity of the Human Genome project.  This is the Patient Experience so we are going to focus here on how as healthcare professionals you can help patients to manage the often overwhelming change in their lives.  However I would be remiss not recognize the importance of acknowledging the impact of change on your own lives even while you are engaging change in your patient’s life.  That brings us to my first point

Embrace the Change in Your own Life(5)

As a pastor I could certainly start preaching here, but I see the fear in your eyes so I won’t.  This will mean something a little different for everyone.  I have to believe that the Cleveland Clinic provides training and or resources in this area because throughout our journey here we were engaged time after time by professionals who embraced the change going on in their own lives.  This is not about engaging patients in one’s day to day issues or engaging in counter-transference.  It is about being a real person even as you are a real professional finding a path for the patient to manage change.    When we arrived (6) at the Cleveland Clinic 16 months ago we were in the midst of a hurricane of change, between the arrival of Nisa Faith into our lives and the exigencies of battling Acute Lymphoblastic Leukemia our world had turned upside down.  This combination of positive and negative changes in anyone’s life can be like warm and cold air crashing together in the atmosphere into a storm of epic proportions.  This is what walked through the door of The Taussig Cancer Center in February of 2013.  By this time Allana(7) and I were over a month into this storm and I had become accustomed to the variety of reactions to our story.  It was in these reactions that perhaps the clearest indication of one’s engagement with personal change manifests itself.  There is a quiet confidence to those who embrace the state of change in their own lives.  Out of this, even as the tears fall or the eyes share grief, there is a stability that says we can forge into this storm and be ok.  It is a stability that provides the platform on which one can build the stairway to change management.  Let’s take a look at those steps that helped Allana and I through our perfect storm.

Listen(8)

I am probably dating myself here but one of my favorite authors concerning change management is Tom Peters.  In “Thriving on Chaos” he makes this statement:

“First among equals is listening…Listening like so many of these apparently simple ideas, turns out to be anything but simple.  Since it must be practiced if we are to survive, it will become a mindset and a way of life for everyone-or else.”

Anything but simple, what an understatement!  I am only beginning to understand the complex web of listening that Dr. Advani and the staff of the CC engaged in when first presented with our case.  Fortunately for us they went far beyond just “listening” to medical history, consultations and the array of tests that precede the formulation of a treatment plan.  They listened to the chronology of change in our lives and the life of our family.  They listened to our emotional evaluation of the changes that had already taken place and our fears of future change.  They continued (and continue) to listen as a regular part of therapeutic procedure on a regular basis.

Evaluate(9)

“The best evaluation I can make of a player is to look in his eyes and see how scared they are.”  If I were a player facing Michael Jordan on a basketball court I think that there would be plenty of fear in my eyes.  However this quote illustrates the need to evaluate more than just the facts and figures.  It demonstrates how the listening process extends far beyond the mundane data and delves into the heart of the matter.  The team at Cleveland Clinic evaluated everything that had been exposed in the “listening” phase.  The treatment protocol was relatively straight forward, Hyper-CVAD with dasatinib.  However the new baby was a wild card.  She did not fit into the policies and protocols.  It is in the evaluation process that “wild cards” are exposed and measured against existing policies and protocols.  Here the team also begins to collate a strategy for change management because the evaluation is so much more than just medical.  Perhaps the most immediately salient non-medical issue is financial but family, emotion, pain and even suffering for not just the patient but caregivers and those to whom the patient had given care are considered.  The reality is that Allana and I pretty much just drifted through this process.  We were (and probably still are) unaware of all of the background activity that went into this part of the change management process.  Out of this activity comes the action plan.  Of course at the core of that plan is the primary objective.  In our case complete remission and recovery.  The final piece of the evaluation step is the riser to the next step in the stairway to positive change management.   It is an evaluation of the communication syntax or structure that will be most effective in the change management process.

Communicate(10)

Tony Robbins said this about communication:  “To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others.”  He succinctly establishes the riser from the second to the third step in our change management process.  As one whose stock and trade involves communication as I look back and can appreciate the evaluation process that took established communication protocols and evolved them to help us manage our lives within this storm that had engulfed us.  I am going to go out on a personal limb here and say that I truly believe that in the area of patient communication The Cleveland Clinic is the very best.  They have managed to create a culture of effective communication.  When a cultural value is established in a positive manner wonderful things happen.  Chemotherapy sucks!  I have nothing good to say about Hyper-CVAD except my wife is standing here today with me.  But from the moment we walked through those doors the communication process began.  The value of communication echoed from the red coats, to the registration desk, to the valets, to the medical staff and in that echo the message that “We Value You!” comes through loud and clear.  The communication process provided clarity, a vision of the other side of the storm or at least a visible path to head in that direction.  It is in this phase that Allana and I began to feel that managing change was again possible even as we entered what was probably some of the darkest days of our life together.

The final step in our stairway builds on all of the others.  Listening, Evaluation and Communication are pretty ineffective without Execution.  While the other steps are more or less passive, this step is the commitment to action.  For us it meant that the staff of The Cleveland Clinic threw themselves into the care of not only Allana, but of myself and Nisa.  While in some ways they bent policy to accommodate us, in many ways they wrote new policy and procedures to ensure the safety and comfort of not only Allana but of Nisa, myself and all of the patients on the floor.  I can only imagine that not everyone was completely onboard with the decision to allow Nisa on the floor with us but that is only my imagination.  After clearly communicating the plan of action arrived at through the evaluation phase, the entire staff executed that plan with commitment and expertise.  Housekeeping, Clinical Staff, Food Service, Hospitality, they all came together in what appeared to us to be a purely organic effort.  They provided that stable platform in the storm for us to begin to get our hands, our minds and our hearts wrapped around the changes that had already occurred and those that were still to come.  It was out of that stability that we could come to grips with the two months we would need to be separated from Nisa through the Bone Marrow Transplant regimen.  It was on that platform(12) of stability that Nisa would thrive, spending much of her first few months of life with us on the Leukemia ward.  Nisa’s presence with us made a bit of a stir I am afraid, perhaps even a little local fame.  It is completely unearned.  I stand here to applaud the entire staff of the Leukemia and Bone Marrow floor of the Cleveland Clinic.  As I said in the video, one day through many changes, I will sit with Nisa Faith and tell her about her other home, The Cleveland Clinic and how they helped her manage change before she even knew what change was.

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