Posts Tagged ‘leukemia’

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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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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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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