Saturday, November 17, 2012

Book - Chapter 2



CHAPTER 2

           
            Within two days we noticed an improvement in Andrew.  The number of cancer cells in his peripheral blood (i.e. veins as opposed to bone marrow) had dropped by 50%.  He had a better appetite and had more energy.  He was not as frightened of hospital procedures at this age because we were able to explain things and he was able to understand.  I remembered him as a two year old, just after his diagnosis in the same hospital, shrieking for his coat
            "Coat!  Go home!"  he begged over and over again.  His vocabulary was limited but he made his desire clear.  Any stranger, whether it was a nurse or a visitor brought immediate terror to his frightened little heart.  Because the medical staff wore ordinary street clothes he learned to trust no one, never knowing when a friendly face was simply a visitor or a nurse ready to stick a needle into him.  Most nurses understood this and did not take his rebuffs personally.  However, his very first ward nurse fell in love with him and was so determined to win his trust that she refused to be present at any of his blood tests or I.V. insertions.  She would ask me to take him to the treatment rooms, hoping that he would associate me and not her with pain.  She pampered him to no avail—he refused to trust her.  I, on the other hand, did not have the option of absenting myself from his painful procedures, and hated the helpless feeling of standing by while Andrew's big brown eyes and frantic cries begged me to rescue him.  Still, I could not leave him alone with strangers as so many parents did--seeking relief and escape from the heartbreaking pain of watching one's child suffer over and over again.  Instead I learned to seek God's strength, and it was often in the hardest moments that I received the greatest strength.  What a friend we have in Jesus!   He never leaves or forsakes us.
            His presence gave me the determination to be cheerful,  and I would launch into my role of distractor—talking a blue streak about our house, our trail, our puppy, our cousins, our toys, our grandparents, our friends, our church—until I felt sure that the entire medical staff knew everything there was to know about us.  Whether my monologues had really helped two year old Andrew I didn't know, but I was confident that my presence was of utmost importance to him, and telling stories about our home life gave me purpose and resolve to face each ordeal with him.
            Andrew was three years older now, and able to talk things through.  When it came to shots and medicines, explanations could make the ordeal easier.  When it came to explaining why he was sick again, explanations were much harder.  We had the first of many similar conversations in the cancer ward that first day.  
            "Mommy, why did God make me sick again?" he asked.
            "I don't know, Andrew, but He has a purpose for you," I replied.
            "But I don't want to be sick.  I want to be like Ryan," was his complaint.
            "I know, honey.  But someday Ryan will have to suffer, too.  Everyone suffers at some time in their life."
            He paused for an instant, and then said, "Well, God must not love me very much to make me suffer when I'm little."  
            "Andrew, you know that God loves you very much," I insisted, wondering what to say next.  
            "Just think how much He loved you to send His Son to die for you," I went on.  Andrew grew quiet.  
            "When they put the nails in Jesus' hands, it must have felt like my pokes," he reflected.
            "I think it would have hurt more," I suggested gently.
            Andrew quietly nodded, then said, "He really suffered."  To my relief Andrew seemed satisfied with that thought and our discussion came to an end.
            The third day, Sunday, was our day of rest before the storm.  The only foreboding we experienced was an unannounced visit from a surgery technician who came to 'chat' with Andrew in the morning about his upcoming surgery.  Unfortunately, I was not in the room at the time and when I returned, the technician was gone and Andrew was in a somber frame of mind.  He was not inclined to talk and it took me the better part of an hour to uncover the reason for Andrew's melancholy. 
            Some man had come to talked to him about being "cut open" and now he worried over what that would feel like.  We had said very little to Andrew about his upcoming surgery since we knew very little about it ourselves.
            He was scheduled to have a Vascular Artery Device (V.A.D.) inserted under his chest.  A V.A.D. consisted of two plastic chambers, the size of pop bottle lids, sitting side by side in a hard  plastic case.   The top of each round 'lid' was not covered by the plastic but by a thick layer of rubber.  These two,  round, covered openings were called 'ports'.  Special needles were designed to puncture these ports and connect the V.A.D. with I.V. lines.  Inside the case, the two 'pop bottle lids' opened into a soft rubber tube which protruded from the plastic case.   In surgery, the doctor would cut open the patient's chest, insert the V.A.D., thread the rubber tube into an artery near the patient's neck and then close up the chest again.  
            Because Andrew's veins in his hands and feet would never be able to stand up to the rigorous chemotherapy, this device would be used for all intravenous medications.   The intravenous needle would be stuck through the chest into one of the V.A.D. ports and not need changing for up to ten days.  When not in use the V.A.D. could remain undisturbed and free from infection because it lay under the skin.   
            This was a great improvement over more commonly used 'central line' which protruded through the skin and needed daily flushing to prevent infection.    Although central lines were still being used in transplants, our oncologist had recommended a V.A.D. for Andrew.   Andrew had been looking forward to this great little invention that would eliminate the painful  intravenous needles in his hands and feet, but now his anticipation was changed to fearful anxiety.  
            As I was pondering how to ease his anxiety,  a nurse arrived to show Andrew the V.A.D. needles that would be inserted into his chest during surgery.  I put my foot down!
            "No one talks to Andrew about any more medical procedures," I announced.  "He's not emotionally strong enough to process all the information and just ends up worrying himself into a quandary over the unknown."   The nurse looked at me doubtfully.  She tried to explain that  it was just a tiny needle.
            I put up my hand to stop her.  "He's had enough for now.  And please check with me before sending a medical professional in to talk to Andrew.   I would rather talk to them first and then filter the information back to him at the right time in the right way."  
            The nurse was reluctant to give up her pep talk on V.A.D. needles but seeing my determination on the matter she acquiesced.
            There was no more talk of the surgery and we were happily distracted by the arrival of Daddy and the boys.  They were excited because they had seen players from the Vancouver football team—the B.C. Lions—out in the hospital foyer.  Apparently they were making a visit to the Hospital with a special surprise for the sick children.  We waited to hear them arrive on our floor.  First a public relations agent came to our room to receive our written consent for film footage of Andrew.   Then suddenly the room was filled with two large football players and several camera men.   We shook hands all around and then everyone tried to make room as The Surprise got squeezed past the camera men and onto Andrew's bed.   It was the GREY CUP!  We looked in quiet awe at this football legend that spoke of great moments of triumph in the history of football. 



            It was worn and dented in places and the shine was dulled but it still had the power to call forth respect and awe from even the most naive and uninformed observer.  That night the evening news showed Harry proudly lifting the trophy while Andrew sat listlessly in the background.  How we hoped to have our moment of triumph, too, to hold up our son as a testimony of God's glory and power.  But it was still too soon, and we had many battles yet to fight.  
           
            "Lord, I have heard of your fame;
              I stand in awe of your deeds, O Lord.
              Renew them in our day,
              In our time make them known;
              In wrath remember mercy."         Habakkuk 3:2
             
            Monday morning brought butterflies to our stomaches.  It was no hardship for Andrew to skip breakfast before his surgery; he was far too nervous to eat.  I was nervous for him, too, and for Ari who was getting blood work done that morning to see if he could be a donor match for Andrew.  When Harry arrived with Ari I left Andrew to accompany them to the blood lab on the second floor.   Ari tried to be brave although pokes were a new experience for him.   He returned to Andrew's room proudly sporting a band-aid, and the two brothers commiserated with each other.    Harry couldn't stay, so promising Andrew that he would return before he woke up from the surgery he and Ari said goodbye.  
            The morning dragged on as we read book after book.   Every now and then Andrew needed reassurance that the operation would not hurt.    Then we would pray and I would ask God to go with him into the operating room to watch over him.  At 11:45 a.m. the hospital porter finally arrived.  Dressed in his housecoat and slippers Andrew padded downstairs with the porter, myself, and his every-present I.V. pole.  
            As we reached the O.R. the porter pressed a button and the double doors swung slowly open.   Another hallway stretched before us with a bend at the end revealing no hint of what was hidden behind its walls.  A nurse hurried around the bend and up the hallway towards us.   She wore a hair net and special O.R. 'booties' on her feet.  
            "Time for goodbye hugs and kisses," she said cheerily.  I drew Andrew close and kissed him tenderly.   Oh, how hard it was to let him go; to let him walk through those doors without me.   Always I had accompanied him to every medical procedure, held his hand, kissed him, talked him though it.  Now, in the face of an unknown and frightening experience, he would have to go without me.  With bent head and drooping shoulders he shuffled obediently after the porter, and was gone.  
            My chest tightened.   I could hardly breathe.  
            "Oh, Lord, watch over my sweet baby,"   I choked out noiselessly.
            Hurrying back to his room I collapsed into tears.     Crying and praying I wrestled with my feelings of fear and betrayal.  Just when I thought I had laid everything into the Master's hands, I was asked to give up yet one more thing.   Wasn't it enough that my son had to suffer?  Did he have to suffer alone as well?   How could a little five year old boy understand the presence of God?   He needed his mother!   
            I sensed already what God was trying to say, but at first I would have none of it.   Oh, that all this suffering would only go away.   In my turmoil I had to admit that if there were no suffering there would be no need for the Lord's strength.   And just the day before God had given me the lovely promise of his strength in Habakkuk 3:19,
           
            "The Sovereign LORD is my strength;  
              He makes my feet like the feet of a deer,
              He enables me to go on the heights."
           
            Two hours later, Harry returned to the hospital and we received the go-ahead to meet Andrew in the post-surgery recovery room.  He was already conscious and smiled sleepily.  His chest was covered with a large dressing and a thin plastic tube snaked from underneath the dressing to the I.V. pole.  I breathed a sigh of relief.  The worst was over and accessing his veins would no longer be a difficult ordeal.  Even getting dressed would be a cinch without having to undo his I.V. lines every time he wanted to change clothes. 
            The next morning proved us wrong, as the dressing was painfully peeled off and replaced.   The three inch cut in his chest was swollen and bruised.  Somewhere hidden under the puffy skin lay the V.A.D., evident only by the protruding needle that was buried deep within.  Andrew shrieked and cried as the blood-stained dressing was removed and I tried to keep from retching as I viewed the results of the surgeon's scalpel.   What a way to start this special day of the year--his 6th birthday!
            I had been determined to make it a good day and had invited six little guests from home to help him celebrate, but now I wondered whether we would be able to coax Andrew out of bed.   He was severely traumatized and wanted only to be left alone.
            At noon Linda arrived with his little friends and I ushered them to the playroom which had been especially reserved for this occasion.  There were balloons and cake that Harry's sister, Ruth, had provided, as well as pizza which I had ordered, but no birthday boy!  


            Halfway through the party Harry finally persuaded Andrew to come and so with his hands clutching the lines coming from his swollen little chest he listlessly entered the playroom.  It nearly broke my heart to see his white, strained face next to the smiling faces of his friends as they handed him their gifts.  We played pin-the-tail-on-the-donkey, opened gifts, and sang "Happy Birthday" as he blew out the candles half-heartedly. 

 Andrew is in the white t-shirt sitting right in front of me.



 I wished I'd waited for another time to celebrate, I wished I could have given him the cowboy party that he had been anticipating with real pony rides on Uncle Ed's horse.  Most of all I wished for the nightmare to end.  Instead, the party ended and Andrew crawled exhaustedly back into bed.
            The following day he was discharged with a bag of medication, extra dressings for his V.A.D. site, and a list of instructions for me.  Besides the schedule of medications, the list contained a gamut of reactions that his body might or might not undergo in response to the drugs.  Since he was beginning an intense protocol of chemotherapy to put his cancer back into remission, we were informed to expect more than the usual side effects.  Fever, mouth sores, low blood counts, increased infections, and chemical imbalances were a few of the results we could expect.  Daunting as the information seemed, we were going home, and that helped ease the anxiety all around.  This was evident that first night back home, when Andrew prayed, "Dear Lord, please help me not to have any more pokes; please help me not to stay in the hospital again, and please help me to be able to play with my toys.  Thank you, Lord, for helping me get better.  I love you, Lord.  Amen."
            Coming home always refreshed and renewed our courage and being away from the hospital filled us with a sense of relief.  Life actually felt a little more normal until the next night.  Andrew chose the bedtime story.   It happened to be the very last story in our children's Bible and the theme was--Heaven!  I read it with a lump in my throat while Andrew's eyes shone.  His childish heart was embracing heaven with its absence of pain and tears, while my heart became once again heavy and anxious. 
            Later, Harry reminded me of the promise he had claimed on the very first day of relapse:
            "Whatever you ask in my name I will give it you."    (John 14:14)
            I longed for the assurance that Harry seemed to have but I was uncertain.  Part of me wanted to pray for healing but part of me wondered if that was God’s ‘perfect will’.  This confusion was partly due to an event that happened years ago when a tragic accident made my friend's husband a helpless quadriplegic.  Her panicked prayer had been, "Dear God, let him live!  Just let him live!"
            He did survive the accident but the devastating results of it produced doubts and regrets in my friend's mind about her prayer.  I feared the similar possibility of facing future regrets over our prayers for Andrew.  And so, I began the search for God's will.
            Since Andrew's birth, I had established a routine of allowing the Lord to wake me in the early morning hours (usually between 4 and 5 a.m.) to read my One Year Bible.  I loved the daily readings which always included a passage from the Old Testament, one from the New Testament, a Psalm and a Proverb.  Because a chronological order was followed, one could easily read through the entire Bible in one year using this system.
            Now my thirst for God's Word had intensified one-hundred-fold and I spent every spare minute reading my Bible.
            As I read the passages for December 22, I came across Psalm 141:8  "But my eyes are fixed on you, O Sovereign Lord;  in you I take refuge--do not give me over to death."  The words stirred up a poignant memory of three years ago, when Andrew was first diagnosed with leukemia.  It was our first day in the hospital and he was about to have his first bone marrow test.  Trembling with fear I picked him up out of the hospital bed and held him close to my heart.   Slowly I walked down the hall to the treatment room, carrying him in my arms.  As my feet moved mechanically forward I groaned, "God, are you there?"  The silence of the empty hallway echoed back mockingly.  When I reached the door of the treatment room I stopped and closed my eyes.  I wanted to feel God's presence but seemed unable to pray.  In that instant of downcast eyes I saw His hands.  They were the hands of a Father, stretched out toward His child with the full intent of giving comfort and love.  The wonder of it all was that I was that child.
            My heart immediately quieted itself and as I opened my eyes I remembered something else about His hands.   They had a word written across them, "Mercy."  The word comforted me in an unexplainable way.  The explanation came to me later in the evening after the tests had been completed and the diagnosis had been pronounced and the tears had been shed.  
            Sitting beside my sleeping son with the lights turned low, I opened my Bible to the daily reading.  It was Psalm 123:1,2.
           
            "I lift up my eyes to you, to you whose throne is  in heaven. 
            As the eyes of slaves look to the hand of their  master,
            As the eyes of a maid look to the hand of her mistress,
            So our eyes look to the Lord our God, till He shows us His mercy."

            Now, like a sweet refrain those words had returned to remind me to keep my eyes fixed on Jesus, and to wait for His mercy.
            Of course, the mercy I desired most was healing for Andrew, and so in my next Bible reading I began to express my desires through Scripture.
           
            "I cry aloud to the Lord
            I lift up my voice for mercy
            I pour out my complaint...
            Before Him I tell my trouble,
            It is you who knows my way.
            [Andrew is in desperate need.]
            Rescue him!
            Set him free, that he may praise your name.
            Then the righteous will gather about us because of your goodness to us."
                                                            (Psalm 142:1-7)

            But before healing would come, our heavenly Father had other ways of showing His mercy that he also wanted us to experience.
           





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