Posts Tagged ‘leukemia’

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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Marrow

…knowing that you were not redeemed with perishable things like silver or gold from your futile way of life…,but with precious blood,as of a lamb unblemished and spotless, the blood of Christ.  1 Peter 1:18-19

Ask any blood cancer or disorder survivor about the value of blood and you may get a more intense answer than you were expecting.  As a rule we don’t think about blood much unless it starts coming out (and then we are kind of disgusted) or when it fails us.  God established the value of blood from the beginning when he created the universe.  It has been interwoven into the fabric of his covenant with mankind over the millennia, taking shape in the Law and being fulfilled in the person of His son Jesus Christ.

God tells Cain that Abel’s blood is crying out from the ground. (Genesis 4:10).  Reuben sees the judgment for Joseph’s blood (he didn’t know what had happened to him in Egypt) when Joseph tests the brothers. (Genesis 42:22)  Blood on the door posts signaled the angel of death to pass by the homes of the Jews and. (Exodus 12)  Blood figures prominently in the sacrificial worship instituted by the Law of Moses, including being dabbed onto the ear lobes, thumbs and big toes of the priests.  The shedding of blood is God’s reason for not allowing David to build His temple. (1 Chronicles 19:10)  Solomon writes in Psalm 72:

He will have compassion on the poor and needy, And the lives of the needy he will save.  He will rescue their life from oppression and violence, And their blood will be precious in His sight;

The prophets decry the spilling of innocent blood over and over. Ezekiel describes its cleansing properties.  They set the stage for the compelling atonement to come in the person of the Messiah,

Jesus would proclaim “For My flesh is true food, and my blood is true drink.” establishing a new standard of life for mankind, redeemed life, shortly before He is sacrificed on a hill outside of Jerusalem.  This fulfills the enormous body of blood theology that God through the inspiration of the Holy Spirit inspired many different men to write, establishing the great value of the tainted blood of creation. They gave just a taste of the value of the blood of the perfect Lamb, without spot or blemish;  all God …all Man…all love…come to be the savior of humanity.  He provides us a pathway to renewed relationship with our creator.  It is the relationship that we were created for prompting the author of Hebrews to say:

“how will we escape if we neglect so great a salvation…” Hebrews 2:3

This is the value of blood, that God values the blood of every human being and desires that the atoning blood of his Son will restore the relationship so long broken.  This is so great a salvation and so great a power in the blood of the lamb how can we who know not proclaim it to a lost world.

“My hope is built on nothing less than Jesus’ blood and righteousness…”

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Even the sparrow has found a home, and the swallow a nest for herself, where she may have her young— a place near your altar, LORD Almighty, my King and my God. Psalm 84:3

maphome

Turn right onto 140.  Take a slight right onto Highland continue through the S Curve onto North Vine St.  Turn left onto Reservoir Rd. and then make a right onto Violet Circle…

Going home really doesn’t seem such a big deal to most of us.  Simple directions like those above bring us….home.  Well at least they bring us to a place where we have a roof over our heads.

“Honey when you are home, you are not really home.”  Allana’s words stung.  Of course I was home.  I knew my address and could navigate my way.  The reality of this statement was both so much more subtle and reached so deeply into who I was that it would not be until years later that I would see the truth in it. This particular disability strikes deeply separating us from the Hupomone God who loves us just as it separates us from those around us who would do the same.  We cannot remain under or about a place that we have never really been.  As I look back I can see God calling to me so many times “Beloved, when you are home, you are not really home”.

Walking through the motions of “getting home” does not cut it.  There is an undeniably spiritual aspect of HOME. More importantly it takes a spiritual intentionality to enter into a HOME relationship with anyone, but especially one with God.

Then the Lord said,
“Because this people draw near with their words
And honor Me with their lip service,
But they remove their hearts far from Me,
And their reverence for Me consists of tradition learned by rote,  Isaiah 29:13

Israel knew the way HOME.  If you asked them, they would tell you they were HOME.  They followed the traditions, they followed the law, they sacrificed, celebrated; they did all these things and believed it meant HOME.  They were wrong and there would be consequences just as there are for all of us.

Therefore behold, I will once again deal marvelously with this people, wondrously marvelous;
And the wisdom of their wise men will perish,
And the discernment of their discerning men will be concealed.”  Isaiah 29:14

I wish I could say that today I am an expert at being home, that it comes naturally.  The truth is old habits die hard and the technology of the 21st century makes easier than ever to not be wherever you are.  Being home requires an ongoing commitment to God, to my family and to all the people God brings into my life.

Jodi King of Love and the Outcome has perhaps more opportunity than any of us to miss being home.  The life of a musician on the road and in the studio, constantly having to be new and fresh for the fans could certainly leave one with little time to be home.  She recently started video blogging on Mondays and this is one that touched my heart and gave me the ending for this blog (that I initially wrote over 6 months ago, so thank you Jodi!)

 


 

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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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