24 hours with a Brain Tumor

"My 24 hours with a Brain Tumor"

There are haunting moments in life, minutes of time that we cannot unsee or unfeel or simply store in some unretrievable bank of our minds.

The memory of calling my mother from the parking lot of Lonesome Pine Hospital, crying, no wailing, trying to form the words to say that Josh had a brain tumor will never leave me. I can hear her voice, a gasping confusion. I can feel the chill of November air - and the world seemingly stand still.
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And then, a couple of weeks ago, I listened to my voicemail, a nurse calmly relaying my need to come into the office to discuss CT scan results. I can still see the doctor’s face, a resolute, unblinking stare, trying hard to form the words to say that I had a brain tumor.

For twenty-four hours, almost to the minute, I lived with what I believed to be a brain mass, a measurable, 8mm lesion near my pituitary gland.

Sometimes we hear things with an inability to grasp their significance, but I know brain tumors. I know blood vessels that can pool blood into raspberry-like masses. I know craniotomies and cavernous angiomas and the bitter taste of those words on my tongue and on my heart. I know waiting rooms and waiting for news and heads shaved and stitched. I know fear.

Driving home with swirling thoughts and remembrances, I was no longer the watcher and the waiter, but this time the owner of this thing -this 8mm matter that could challenge, could change, could claim, my life.

Inside the house my babies played piano and guitar, laughter floated down the long hall and into the car where I sat, quieted, so unlike me. After blog posts and updated statuses and questions and praises and verses written on notepads and sticky notes and index cards, my voice was silent.

Perhaps HE knew that I needed to listen before I could open the door and tell that man -the one who listened to my past and knew how painful things had been before, how miscarriages and divorce and loneliness and fear had left me raw and grasping. The one who slept alone his first few months of marriage so I could hold a little boy with a stitched up skull whose blond hair the doctor gave to me in a plastic bag just in case I would need something to smell and to touch. The one who counted his son’s nine toes and told me it would be okay and has driven too many eight hour trips to Baltimore to count. The one who stood outside an operating room when my uterus tore during the delivery of his only little girl --and held my hand when I understood that no more babies would be birthed. The one who didn’t leave when anxiety took me under and fear became my mantra.

In those moments- on the way to the office, driving home, in the driveway, if I know me, I was afraid, questioning, shouting unfairness, wondering how many more things needed to be added to my list -my long list of trials and storms.

BUT, I underestimated the JESUS in me.

I cried leaving the doctor’s office, lost my keys and found them in the men’s restroom where I had entered by mistake. I imagined my husband and children’s lives lived without me. I was shaken. But I was not undone.

Something different came to me, something that straightened my shoulders and strengthened my resolve. Something that I couldn’t quite name because I had never quite seen it before. In forty-one years, I’m not sure I’ve rested, settled, quieted as much as I did in those moments.

This thing that came to me was so different from the fear that came in that waiting room in Knoxville, watching for the doctor who said that if I saw him come through the operating room door, he would be bearing bad news -news his nurses couldn’t carry to a young mother. Or the thoughts that came, after only seven months married and eight weeks pregnant, waiting to hear that Freddie’s brain surgery had resulted in no residual damage. So different from the crying times when I let the little ones spend a night away from home, questioning yet another decision made. Or times wanting so badly to simply be accepted -to feel I was good enough. Good enough wife and mother and daughter and sister and friend and teacher and housekeeper and decorator and money saver.

Christ named this thing for me -called it HIS STRENGTH, whispered that I’m not who I was. HE showed me my list from HIS perspective-those powerful storms designed, dealt, given to me -and the name at the top of the page was my name: Highly Favored.

I could see HIS hand working through this stream of difficulties, turning my reliance from myself to HIM, turning my faith from myself to HIM, turning my life from myself to HIM. I could see the JOY shifting from my plan to HIS.

I could feel this letting go that felt like being held.

Mary, she was first proclaimed Highly Favored, dealt a list that included unwed, pregnant teen, worried mother, lonely widower, only family member at the cross. HE took her list and through it, blessed her life -and yours and mine.

On the pages of my list he crossed through each dark moment, each fear, each doubt and wrote above the words in an ink of blood: MY GRACE IS SUFFICIENT.
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I sat in the car still settled, still silent and fully believing that HIS plan was greater-that whatever HE wrote next, whatever HE added to my story would be written for my good, my transformation and for HIS glorification.

I walked into the house to Freddie- and later that night drove to my Momma and Daddy’s house to them and my brother -and to Kelly’s house to her-each time through tears telling the news that I had been diagnosed with a brain tumor.

These five especially, they know me -my insecurities, my fears, my anxieties, but that night they heard the JESUS in me -as I allayed their fears and reminded them that HE was always good even when we could not understand.

And that I was NOT afraid.
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The next day, I had an MRI and prayed in that white tunnel until I eventually fell asleep. On the way home, the same nurse called again-this time to simply say that there was no tumor.

My mom is a firm believer that God removed those 8mm of tissue and others believe that the CT was simply misread. I believe that God, in HIS divine Sovereignty, revealed HIMSELF to me through the sufficiency of HIS STRENGTH.

Christ first revealed HIS resurrected body-the TRUTH of the gospel - to Mary Magdalene -and commissioned her to go and tell the brethren. When Christ transforms something within us, HE expects praise!

Glory with me in HIM tonight -and pray with me that HE would continue to perfect that which concerneth you and me -until we see HIM face to face!

And, if you belong to HIM, you are highly favored, too! HE is crafting your list to mold you into HIS likeness!

Fibular Hemimelia and GRACE

After school yesterday, Emily talked of her friend who was so worried about her math test that she cried in class.  “Mom,” she said, “The teachers always tell her that she overthinks things.  Not me! I just go with the flow, whatever floats my boat.”

Sometimes I think that if I could trade places with anyone, it would be this fiery nine-year-old whose attitude, no, whose God given design brings me such JOY.  If you know me, then you know that I’m one of those over-thinkers.  Maybe it’s why I’m pretty good at teaching literature, but over analysis sometimes comes at a cost.

Yesterday, I was reading about the life of Martin Luther –if you know much history, you’ll remember that he started the Protestant Reformation.  He nailed his Ninety-Five Theses to the door of All Saints' Church in Wittenbergh in protest of such practices as buying indulgences that guaranteed forgiveness of sins and ultimate salvation.  He also authored hymns, among them “A Mighty Fortress is Our God.” 

What you may not know is that Luther was an over-thinker, someone who agonized with fear and anxiety related to salvation and eternal life.  He had obsessive thoughts of never being “good enough” for God and, as a result, going to Hell.  These obsessions plagued Luther throughout his life –and he struggled with fear that is hard to be put into words.  Today, he would have been diagnosed with Obsessive Compulsive Disorder –not what many laugh off as a need to be overly organized, but as a disorder that plagues the mind with doubt.  YET, Luther claimed that the only relief, the only remedy from his anxiousness, came from God whispering ONE WORD, ONE TRUTH: GRACE. 

God brought this realization to me yesterday, whispered this truth, His spirit communed with mine: had Luther not suffered, had his life not been characterized by anxiety and struggle, had he not sought truth, not sought God for help, then the entire Protestant Reformation may never have happened.  God, in His Infinite Wisdom, ordained his suffering to bring about a revival of TRUTH, the salvation of many souls. 

Ethan has a “bucket” list on the cork board in his room –among the items on his list: ride a bull, read a chapter book in a day, win a car race.  I noticed an added sheet to his list the other day –and one bulleted statement stopped me for a moment, brought tears to my eyes: no more surgeries. 

Sometimes as parents, as friends, as sisters or aunts or cousins of those who struggle, we wonder why.  We wonder what God is doing –why has my eleven- year- old had six surgeries with more to come? Why does my uncle have Alzheimer’s? Why is one of my former students facing cervical cancer? Why is my friend in a joyless marriage?

And there’s only one answer: GRACE.

God’s grace, if we remember, brought Christ to the cross where He suffered, the Bible says, as none as suffered before or since –and this suffering, this brutal seeming unfairness inflicted on one who had no sin, purchased our redemption.

2 Corinthians 4:17 states: “ For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory.” 

Did you know that your suffering –your God ordained trials and troubles, will one day result in an eternal reward? That one day, you will lay your crown of suffering at the feet of Christ –at the feet of the one who knows suffering –who prayed for the “cup” of suffering He was about to endure to be passed from Him –yet accepted God’s will and took our place.

If I asked, you would say that you believe the Bible to be the inspired Word of God: TRUTH.  Yet, HE plainly tells us that we will suffer. 1 Peter 5:10 states: “But the God of all grace, who hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you.”  He tells us, plainly, that our suffering will PERFECT, ESTABLISH, STRENGTHEN, and SETTLE us.  I want to be perfected, established, strengthened, and settled –and it will happen through suffering.  And, I want this for my son, my uncle, my former student, and my friend.

What if, through your suffering, like Luther’s, God will bring many souls to salvation? What if HIS plan really is BEST? What if HIS WORDS are TRUTH? What if we just TRUST HIM? What if we simply seek refuge In God, our MIGHTY FORTRESS and give HIM glory through our pain?

Fibular Hemimelia -Decisions

In the next few months, Freddie, Ethan, and I will have to prayerfully make a decision regarding Ethan’s future surgeries. The weight of this decision feels physical, pressing on my heart and mind, bringing tears to my eyes even as I type.  His left femur is projected to be 2 ¼ inches shorter than his right at the end of growth (it’s over an inch shorter now), and we have two options:  1) to lengthen the femur internally -which involves a major surgery, therapy, and about six months of his life, but is a much easier procedure and less risky than the external lengthening he has already endured - or 2) to slow the growth in the right leg -which involves a minor surgery on his otherwise healthy leg, resulting in the loss of a bit over two inches of height.  

Such a strange decision to be placed in our hands:  how tall will your son be.  

God mercifully chooses our babies’ eye colors, the outline of their precious faces, the color and number of hairs on their heads. So I see this decision as a heavy one.  Ethan’s wise, we know that, and practical, and his voice will be heard. But can you imagine even making this choice for yourself? Would you endure another surgery? Would you permanently alter your stature?

I’ve preached to young girls many times -and daily to myself -that God created your body, formed it perfectly. Whether it be full hips or boyish figures, we’re fearfully made.  And Ethan is, too- masterfully knitted by the hands of God.  And God has walked this before us, I know, and will answer our prayers for peace.

And when I think of all of the decisions we make each day -and their implications - I know that this one, though weighty, is not life. And simply pales in comparison to the decision we saw those young students make this week - the decision to stand in the face of fear and boldly choose Christ.

Each day, though, whether we acknowledge the fact or not, we make the same choice -we either choose Christ or we don’t.  Second Peter tells us that the Christian walk should be a diligent one - a continual choosing of holiness over unrighteousness, a pressing on toward godliness, an adding of attributes: faith, virtue, knowledge of God.  Be sure of your calling, he warns -because those who are assured look and live differently than those who are not -not because of our innate goodness, but because of the God who indwells us -who compels us -toward Himself -who promises to finish the work that He’s started -who promises to keep us from falling and to present us faultless before His glory!

He alone is WORTHY of our PRAISE!

And He Alone will help us decide what’s best, I know.  

But He also calls us to pray together -to stand together -especially here in these last days (or so they seem to be) -to finish together. So, pray for us and our decision -as your examine your decisions each day.  Let’s compel each other, each day, to choose Jesus -and to be so BOLD in our choosing that a lost and dying world might yearn for the Christ in us! Let us live each day radically choosing Jesus, so that if our death comes in martyrdom, it will be a fitting end to a life lived daily proclaiming His name, choosing Him over hatefulness, over worldliness, over selfishness, over bitterness - over all sin.

Fibular Hemimelia: a pictorial of Sixteen years

I wanted to compile a chronicle of pictures of Ethan's journey thus far.  Sometimes it's helpful when thinking of the future to realize how far we have come!

I wish I had taken many more baby pictures of his feet and legs!  When Ethan was born, his nine toes surprised us, but doctors did not provide a diagnosis of fibular hemimelia until Ethan was 9 months old.  This was after I noticed his leg length discrepancy when he was three or four months of age -obvious in the pictures below! (2004)

By five-years-old, his discrepancy was about 5-6 centimeters, and we had made our way to Baltimore and Dr. Standard.  He experienced no problems or limitations -aside from an occasional knee pain or two (probably caused by his valgus (knock-knees).


 

Ethan's first surgery was performed four months before his 7th birthday; this involved the placement of an external fixator on the tibia/fibula and an 8-plate insertion.  The first six weeks were rough -as he lost the ability to bend his knee without excruciating pain.  After much therapy, however, he began to make great gains.  His leg was quite cooperative, and aside from a few pin site infections, things progressed rather smoothly.  We stayed in Baltimore for 10 weeks post-surgery in order to be near Dr. Standard and the physical therapy department. Ethan had land and pool therapy three times a week and x-rays every two weeks! We were able to watch his leg grow 6 centimeters as new bone developed (2011)

 

Six months later, Ethan had his second surgery - to remove the fixator and replace it with a thigh-high cast. (2011)



Though a bit cumbersome, wearing a cast for eight weeks was a sigh of relief in comparison to the ex-fix!

 



After a couple of months, the first cast was replaced with a removable one, and after almost 9 months, his leg was free!  Ethan began therapy to strengthen his leg and to learn to walk with a normal gait.  As the picture above shows, the valgus in his knee was still an issue after removal, and his scarring was quite prominent. (2012)

 A year after fixator surgery, Ethan had his third surgery to move the 8-plate in his femur to his tibia -to continue working on the valgus in his knee -and ultimately straighten his leg.  Dr. Standard also attempted to release his scars in order to correct the deeper scars that wanted to adhere to the bone (pins from the ex-fix had pushed the skin to the bone). Ultimately, some scars simply were corrected while others returned to the previous "sunken" state. Recovery was surprisingly quick with minimal pain. (2012)



The pictures above show the difference that 8-plates can make in the overall "straightness" of the legs!  However, fibular hemimelia legs are apt to slide back into a valgus position -and that's what Ethan's legs did -requiring another 8-plate transfer -this time from the tibia back to the femur.

This is a pic of the 8-plate that has been so necessary, and yet so troublesome!

Ethan's second 8-plate surgery (fourth surgery in total) was successful, and Dr. Standard again performed a scar release, this time more extensively -so that the scars were reopened and stitched.  This was a rough recovery -being in quite a bit of pain following the surgery. His pain subsided within a few hours, though, and he was excited to finally have crutches, having graduated from the walker! The recovery period involved soreness and about ten days of limited activity. (2014)

 

Less than a year later, Ethan's femur slipped back into a valgus position, so another 8-plate surgery (fifth surgery in total) was required.  Dr. Standard also decided to address his ankle! As the pic below illustrates, his ankle turns in, as it is also in a valgus position.  Therefore, an 8-plate of sorts was inserted in the ankle as well, projected to take a couple of years to correct.

 

 This was the first surgery in which Ethan experienced any anxiety.  He had to be given an IV prior to being moved to the O.R., and he had more questions than usual.  Being ten-years-old, he had a greater understanding of what he faced.  Despite his reservations, recovery was, again, rather quick -aided by the fact that we were snowed in for a few weeks during this one! (2015)

In October of 2015, Ethan had a sixth surgery to have both 8-plates removed -one from the femur and one from the tibia.  Recovery was rather smooth -and he enjoyed spending his P.E. time talking to one of his favorite teachers, Mr. Trent! (2015)

By March of 2017, Ethan's leg had, yet again, slipped into a valgus position, and this time, he was experiencing a lot of ankle pain.  Dr. Standard decided to perform an 8-plate insertion at both the femur and tibia, but to also address the ankle.  He cut part of Ethan's tibia that was impinging on his ankle in order to improve his flexion and hopefully help with the pain.  Because this procedure was more invasive, it required an overnight stay in the hospital.  Following the procedure, Ethan's leg was wrapped tightly, almost cast-like, and we returned to Baltimore in April to have the wrappings removed and replaced with a boot.  This seventh surgery proved to be quite painful for Ethan; the ankle procedure especially gave him a great deal of discomfort. (2017)

In April of 2018, both 8-plates were ready to be removed.  This was a simple, eighth surgery and recovery, and Dr. Standard declared Ethan holds the record for 8-plates! (2018).

In November of 2019, Ethan had his 9th surgery! This was a very difficult one, as Dr. Standard inserted a Precise Nail in the femur in order to lengthen Ethan’s leg 6 centimeters. This process involved the use of a magnet that, when placed on the leg, turned the rod inside and lengthened the bone. We stayed in Baltimore for 3 weeks this time in order for Ethan to receive physical therapy and to go to clinic appointments every two weeks. Once we returned home, we had to make the trip to Baltimore every two weeks for 3 months! Ethan continued physical therapy until May.  

Ethan’s 10th surgery was the result of an accident. Unfortunately in May of 2020, just a couple of weeks after finishing physical therapy, Ethan fell off a scooter and broke his hip! Because of the rod in his femur and the tightening/pressure on his hip from the lengthening procedure, the hip was more susceptible to breaking. Ethan describes this experience as his most painful to date. Dr. Standard inserted screws in Ethan’s hip, and he was in a hip brace for about 2 months. He returned to physical therapy once again to strengthen his hip and work on his gait. This all happened during a global pandemic! Only one parent was allowed in the hospital!

Ethan’s 11th surgery will be in June of 2021. This will be performed in order to remove the lengthening rod and the hip screws.

While you're here with me, can I just say that God has a plan for my son -that his diagnosis of fibular hemimelia -though labeled a "defect" by the world -is simply part of God's plan for his life.  Psalm 84:11 reassures us that God will not withhold any good thing from those who walk uprightly.  God has not chosen to withhold good things from Ethan; he promises, instead, to work all things -including this, to his good!