Sunday, December 9, 2012

Book - Chapter 4


            Having been told that Ari was not a match for Andrew we knew that our next visit to Children's Hospital would entail some lengthy discussion with our oncologist, and so we invited my parents to come along.   Understanding all the technicalities of an unrelated-donor transplant seemed overwhelming enough, not to mention having to make a decision for, or against, it.  We felt so inadequate to make this decision, and desperately wanted some help in dealing with it.
            My father was a retired pastor, and while he had preached from a pulpit my mother had preached to us children from the kitchen sink.  Both of them had a deep love and understanding for the Scriptures and we felt that their faith combined with their love for us would provide a little more light for us in our darkness.
            Andrew was delighted to have Grandma and Grandpa along on our trip to Children's.  Fortunately the VAD did not need to be accessed and only a poke in the thigh had to be endured which Andrew did bravely enough.  When it was time to meet with Doctor Anderson, Andrew made no bones about preferring the playroom which we gladly allowed him while we adults crowded into the tiny treatment room for a consultation with the doctor.  For the next two hours we discussed the pro's and con's of a bone marrow transplant.  The good news was that four possible donor matches had already come to light on the Red Cross bone marrow registry.  The bad news was that an unrelated match no matter how good, would produce unavoidable rejection in Andrew's body.  Because this rejection called GVH (Graft-versus-Host) disease usually is so severe, a procedure called T-cell depletion is used to remove mature 'fighter'cells from the donor-marrow.  This lessens the immediate effects of GVH but also incurs a greater risk of relapse. 
            Unfortunately GVH can still occur up to a year after transplant, when it is then given the name: Chronic GVH disease because it causes life-long disabilities.  A little boy who had recently been in the clinic had shown all the full-blown symptoms of GVH and more.  He had had a bone marrow transplant with his brother as donor.  The match was not considered a 'perfect' match, but because they were siblings it was hoped that rejection would be kept to a minimum.  Unfortunately the boy had barely made it through the transplant and then recovered with disastrous consequences.  His lungs were continually filled with fluid which caused him great fatigue in speaking and breathing.  His hair follicles were permanently destroyed which made him completely and forever bald.  He had not grown an inch in four years and so at age 6 was the same height as our two year old.  To top it off, he was blind in one eye and was beginning to develop tumors in his brain. 
            Although this was a 'worst-case scenario' we knew that Dr. Anderson was obligated to give us all the risk factors, daunting though they were.  As the conversation wore on the transplant began to seem less and less desirable.   Glancing at my soft-hearted father I saw a stern look fixing itself upon his features.  He was not impressed with our doctor.  In his mind's eye, nobody who caused any grandson of his to go through the torture of a transplant could be fully trusted.  Wanting my parents to see the more caring and compassionate side of our doctor,  I blurted out, "Dr. Anderson, if it was your son what would you honestly do?" 
            The doctor was silent for a long moment looking at us steadily.  We did not know then how well he understood us for he had just recently lost his father to cancer and fully related to our fear of the medical establishment.  Weighing his words carefully he replied, "Beyond the shadow of a doubt, I would go with the transplant." 
            His words fell on deaf ears, and my father remained skeptical.  How could we trust a total stranger with our precious son's life?
            "Could we talk to someone else who's been through a similar transplant?" I asked.
            The doctor's face brightened.
            "There's a patient of mine that's just been through an unrelated transplant.   She's coming in tomorrow for a check-up.  I'll phone and see if she and her parents would be willing to talk to you."  The arrangements were made to meet the following day and we left the hospital.  On our way home we stopped in to see the naturopath that I had called earlier.  He barely looked at Andrew, asked me a few questions, and advised us to continue on with chemotherapy.  I was a little disappointed that no mention was made of ozone treatments or alternative therapies, but obediently purchased the multi-vitamin that he prescribed.
            The next day we eagerly anticipated our appointment with Megan B.  She was the only teen in the clinic that day and her short, 'peach-fuzz' hairstyle on her bald head immediately identified her as a cancer patient.  Dr. Anderson introduced us to her and suggested we find a quiet corner to talk alone.  A nurse directed Megan, Harry, and myself to a tiny room in another part of the hospital while Andrew remained in the clinic.
            Megan's smile put us at ease as she asked in a friendly manner, "What's your son's name?" 
            "Andrew," I replied.
            "Does he want the transplant?" she continued.
            "He's too young to make that decision, which is why we want to talk to you.  Tell us how it went for you," I answered.
            "Well," she warned, "it's not easy.  I got terrible mouth sores that spread down into my esophagus and my stomach.  They were murder but I forced myself to keep eating.  If you keep him eating solids he will do much better.  Once they put you on TPN (intravenous feeding) you can get really sick."
            She went on to describe her daily routines in the isolation room, her later recovery at home, and their correspondence with her donor.  After chatting for almost an hour we reluctantly drew the conversation to a close.  I had just one more question.
            "Megan, was it worth it?  Would you choose that route if you had it to do over again?"
            Her eyes sparkled as she answered confidently, "Absolutely!  It was the best thing I could have done!  I feel great now.  I'm also getting acupuncture treatments in California and they are giving me totally new energy." 
            We thanked her for her willingness to talk with us and slowly returned to the clinic.  A nurse approached us.
            To our surprise she said, "Megan's folks are seeing Dr. Anderson right now.  If you wait in the far treatment room I'll send them to you when they're done." 
            After a short wait the door slowly opened and an attractive couple slightly older than us peeked in.  We got up to welcome them in and Mrs. B. immediately put her arms around me.
            "Oh, you poor things.  We know exactly what you're going through.  It’s such a terribly difficult decision to make, isn't it," she sympathized.
            At last we had met someone who understood!  We seemed not to have to ask any questions as they described the very same struggles we were facing.  They too had considered alternative methods.  They had visited naturopaths and herbalists in conjunction with the medical professionals.  They had left no stone unturned in making the decision.  And so they credited their daughter's success to all the various methods that had been used. 
            We drank in every word of advice as thirsty wanderers in a barren land.  Our neediness touched them and they generously gave us their home phone number, work number, and even their California number, encouraging us to call them at any time.  We were notified that Andrew was ready for his spinal tap, and so we bid the B.'s a heartfelt goodbye.  Our interview with them had encouraged us and armed us with helpful advice.
            As the doctor and nurse readied Andrew on the bed for the spinal tap, I resolutely stood beside the doctor, determined to watch him with an eagle eye.  As he inserted the long syringe into Andrew's back, I heard Andrew moan and squirm.
            "He's not fully sedated yet,"  I insisted.  "Let's wait another minute."  The doctor acquiesced and withdrew the needle.  A second try wasn't much better and we waited once more.  On the third try Andrew seemed more comfortable and the spinal tap and bone marrow test went without a hitch.  Slide specimens were made right there in the room and we were told that as soon as Andrew had regained full consciousness we could leave.  We would receive a phone call with the results.  This particular test was to determine whether Andrew had gone into remission yet. 
            Back in Richmond we helped Grandma set the table for supper and had just sat down when the phone call came.  His bone marrow was in remission and tomorrow we would begin a new cycle of treatment.
            Since the next day was Saturday, the clinic was closed and we had to go upstairs to the 3B cancer ward for Andrew's chemo.  This would be the first time that Carol would not be the nurse accessing his VAD.  We were somewhat apprehensive as was the ward nurse, but Andrew remained calm.  He followed a simple routine of deep-breathing exercises and the drugs were quickly and efficiently administered.  We were just leaving when Dr. Anderson came by and suggested we talk again.
           While Andrew and Ari played happily in the playroom, the doctor  and Harry and I sat down in the nurses' lunchroom for a consultation.  He was curious about our visit with Megan and her parents and we reassured him that it had gone very well, but that we were still uncertain about the transplant.  Dr. Anderson nodded his head sympathetically and then asked us a startling question.
            "How about your faith?  How does it come into all of this?"
            I spoke up first. 
            "I'm glad you asked," I said.  "That's partly the reason we cannot wholeheartedly accept the transplant.  You see, we believe that God is ultimately the Healer but the medical profession has turned their back on God and refuses to acknowledge Him at all.   That is why we feel we can't fully trust the medical profession."  I then launched into a long diatribe of the dangers of chemicals in modern medicine, and the avariciousness of pharmaceutical companies.  When I finally finished, flushed and somewhat breathless, Dr. Anderson looked down thoughtfully for a moment and then said, "You're right.  God is ultimately our Creator and our Healer."
            Harry and I stared in wonder as his words crashed through our defenses.  With trepidation pounding in my throat I forced myself to take the bull by the horns.
            "Are you a Christian?"  I blurted out.
            He nodded, "Yes. And I agree that the medical profession is not always acting honorably.  The fact that they are willing to commit abortions shows their utter disregard for the sanctity of human life."   For two hours we sat and discussed our similar outlooks on life, our spirits bearing witness that we indeed had more in common than we realized.  When we finally left, I felt that an important corner had been turned.  We could no longer use the godlessness of modern medicine as a reason to reject transplant because we now knew that our son was in the direct care of a Christian nurse and a Christian oncologist.
            Our minds began to accept the option of a transplant.  However, there was one more obstacle to overcome.  That was the tacit disapproval of my parents. 
            I had shared all my newly gained health food knowledge with them, allowing my indignance and cynicism towards the medical establishment to influence their thinking.  Now, as God was giving us peace about the transplant we realized that my parents were unconvinced.    Our drive home that night was a quiet one as Harry and myself remained deep in thought.     
            The next morning was Sunday and I went to waken the children. "Andrew, I have a special surprise for you," I announced.  He looked at me sleepily.
            "Is today Sunday?"  he asked.   I nodded.
            "Can I go to Sunday School?" he asked as he did every Sunday morning hoping against hope that this time the restrictions would be lifted.  The chemotherapy suppressed his immune system and so he was denied many public activities to avoid contracting infectious diseases.
            "Today you are invited to stay with Auntie Tilly while we go to church," I said smilingly. 
            "Oh, goody!" he shouted with glee.  One of his favorite places to go to was the home of our friends, Stan and Tilly,  whose two boys were close friends with our boys.  Auntie Tilly had planned a special activity and story time just for Andrew while the rest of us were at church.  After dropping him off with many thanks, we continued on our way to church where we looked forward to the strength we received from being with fellow believers.
            I was feeling particularly anxious about requesting prayer for the upcoming testicular radiation that was starting on Tuesday.  Even though I was beginning to feel hopeful about the transplant, my heart was still not fully at peace about the radiation.  I had read too many stories of its grave and frightening consequences. 
            The testicles are a notorious hiding place for cancer cells that have somehow eluded the chemotherapy.  In Andrew's case a few stray cancer cells had evaded the three years of chemotherapy and lodged in the testicles.  There they started multiplying into a tumor and then had spread into the bone marrow where they continued to reproduce until they were finally spotted in the peripheral blood (i.e. veins).
            At church we ran into our friend and small group leader, Dave Beck, who immediately asked about Andrew.  After sharing our confusion over making a transplant decision and the upcoming radiation treatments, our friend said, “God has laid it on my heart to pray and fast for you.   I will do that on Tuesday while you’re at the radiation clinic.” 
            We could hardly find words to thank him.  Coming alongside us in prayer was the very thing we needed.  It humbled us that someone would fast on our behalf.  What a gift he was giving us!  

Monday, November 26, 2012

Book - Chapter 3


            Christmas was nearly here and we had missed most of the seasonal banquets and church function.   It was traditional for our friends from church to have a potluck dinner, but this year we were hesitant about joining in.  Since we had just been informed that Ari was not a donor match for Andrew our hearts felt too heavy to celebrate and we did not want to spoil the dinner for others.  But our good friends, Ed and Annette, refused to take no for an answer and so we went. 
            Being with close friends fed our spirits and when we had a time of prayer after the meal, I felt myself lifted up into that quiet hiding place near to the heart of God.  I realized with a start that I needed to talk less about Andrew's situation and be more intent on waiting quietly on the Lord.  All my rehashing of medical treatments and statistics simply stirred up fear and anxiety within me.  Through the fervent prayers of our friends, God was applying His mercy to me by gently pulling my thoughts back to Jesus, the precious Lamb, slain from the beginning of the earth.  His sacrifice was the solace to my pain, His victory over death the foundation of my hope, and His name my tower of refuge in times of trouble.  

             Christmas Eve, as usual, was spent with my parents opening gifts and celebrating the Christmas story in some special way.  All my siblings lived within 5 minutes of each other and though we attended different churches, we would all hurry to Mom and Dad's after the Christmas Eve service every year.  The house would be dressed in all its Christmas splendor both inside and out.  Outside, the windows were festooned with tiny wooden Christmas trees twinkling with mini-lights.  The tables in the kitchen and dining room were laden with food, and in every corner of the family room there lay large piles of packages.  With a total of 18 family members the gifts amounted to the size of a small department store.  Before any presents were opened though, we spent time dwelling on the true meaning of Christmas.  In the past the children had dressed up and acted out the Christmas pageant with Rusty, my brother's pony, making a guest appearance.  On one occasion we had visited the farm where my sister and her husband lived,  to read the story amidst fragrant bales of hay and watchful calves.  This year, however, no one had the heart to plan a special surprise; we were too disturbed by the thought that this might be Andrew's last Christmas with us.   I was content just to be with family and to watch Andrew's happy face as he played with his cousins. 
            Once the gifts had been opened the adults sat down around Mom's dining room table for a late-night snack while the children ate and played in the family room.  Looking around the table I was grateful for my supportive family.   My sister Liz with her unflappable, calm personality had confessed that she spent the first few days of Andrew's relapse in continuous tears.  She and her husband Dale as well as Ed, my hardworking brother, and his gentle wife Linda generously took our other two sons into their home time and time again when we were in the hospital.  Ed and Linda’s second daughter, Brittany, was Andrew's favorite cousin and always seemed happy to spend long hours sitting beside Andrew when he was too listless to play. 
            Rob, my extroverted and lovable youngest brother, gave evidence of his anxious inner feelings with an increased show of affection.  Theresa, a friend of the family, who was present at all our family gatherings, often commented that our family had brought healing to her fragmented life.  Now, I could understand the depths of her gratitude.  A warm, loving, Christian family was a safe harbor in the wild and stormy sea of life.  Every small gesture of love refreshed our tattered souls and prepared us to venture out again into the storm. 
            That night Dad led us in a time of prayer and my spirit was lifted once again as each member of the family prayed for us.   Knowing that we were loved and cared for truly helped ease our burden.
            Christmas Day was a disjointed day with Harry and me taking turns staying at home with Andrew while also trying to attend an extended family gathering.  We all managed to get some Christmas dinner as well as more hugs and love from our many supportive relatives.          
            On Boxing Day we met with Harry's family in Richmond, and although our visit was interrupted by a brief chemo appointment at Children's Hospital, we were again encouraged by the love and support we received from the family.   After my mother-in-law’s superb turkey dinner our brother-in-law, Michael, suggested that we have a time of prayer together as a family.  It was another powerful moment of peace for us in the midst of the busy Christmas season. 
Our visits to the Hospital continued on unabated over the Christmas holidays.  So far they had gone very well.  Andrew's new VAD in his chest was the greatest invention since scented felt markers.   Or so we thought until the needle, which was still inserted since surgery, had to be replaced.   With trepidation we prepared Andrew for his appointment. 
            "It won't hurt, Mommy?" he kept asking anxiously.
            "Well, its not supposed to," I hedged. 
            "I wish I didn't have to have pokes.   I know its going to hurt."  We were losing ground.  As we parked the car I could tell Andrew was near tears.   Harry and Andrew and I held hands as we entered the elevator.  Terror was written all over his face.  Inwardly, I struggled with a hopeless feeling of anger.  How can I help him deal with this?  I'm just as scared as he is.  This isn't fair! 
            As the elevator door closed us in I said the only thing I could think of doing in face of our fears, "Let's pray one more time."    Lifting up our son to the Lord we asked for His mercy once again.
            At the clinic we spotted a new nurse with a familiar face.   It was our friend, Carol, from the oncology ward.   She had been transferred from the ward, downstairs to the clinic.   Distracted for a few minutes from our upcoming ordeal I chatted with her happily.  Then it was time to take Andrew into the treatment room.  He sat on my lap clutching my hands with his cold ones.   Harry leaned against the wall watching carefully as the nurse removed the dressing.  It pulled a little and Andrew cried out sharply.  His skinny little chest was still grossly swollen on one side with a black bruise covering the entire site where the VAD lay hidden.  The two inch cut was a black gash tightly held together with large stitches.  As the nurse grasped the plastic wings of the VAD needle, Andrew again cried out in pain.  With a tough tug the needle was out.   Slowly the pain subsided only to be aroused afresh as the new needle went in.   Andrew screamed.  The nurse looked anxious.   Why wasn't the needle going in?  She pulled it out.  More screams!
            "Please not again," Andrew cried.   "Don't poke me again!"  My stomach started its familiar ascent into my throat.   I prayed fiercely.  The nurse readied the needle for another assault.  It went in part way and then again reached an impasse.  Opening the valve on the attached tubing she tried flushing the needle to see if the saline solution would enter Andrew's body.  Nothing happened.   She could not draw blood out or push in a flush.  The needle had not found the opening to the VAD.  Meanwhile my heart shrieked its anguished echoes to Andrew's cries of pain. 
            Harry tried to calm Andrew while throwing questions at the nurse.   She became more withdrawn and as I watched her face I couldn't decide if it was determination or fear that formed the lines on her brow.  Without a word to us she readied the needle and  plunged it a third time into the bruised flesh.  Missed  again!  Andrew's hysterical screams rose a pitch higher and my heart fell into a dark pit of utter hopelessness.   God was not answering.   He was not there.   He had turned His back on us and all the screaming and pleading in the world was not making one speck of difference.  I was betrayed.
            "Take it out!" barked my husband.   "Andrew needs a break."  The grim-faced nurse acquiesced and after pulling out the offensive needle she quietly left the room.  There was no calming Andrew.   Hysterically he screamed,  "Please don't poke me again!  Please, Mommy, please!"  Tenderly Harry picked him up and held him.  I stroked his hair knowing that his pain was not yet over.   Arms wrapped around each other we prayed for our son until the cries and pleas subsided to heart-wrenching sobs.  Feeling utterly alone in our misery we asked God to send us relief. 
            Within minutes the door opened and in walked -- Carol!  We all sighed with relief.  Carol was our favorite nurse, partly because she was one of the few nurses we had known from the beginning of Andrew's treatments, but mostly because she was a Christian. 
            "Look, Andrew," I rejoiced.  "It's Carol.  Now everything will be fine."
            "Don't assume too much," replied Carol.  "That other nurse is the expert on VAD's so if she couldn't do it, I'm not sure that I'll be any better."
            "Just do your best," said Harry encouragingly.
            "We've prayed about it," I added, "And God will help you."   Carol nodded and proceeded to scrub up.
            As she steadied the needle I sent up one more quick prayer while Andrew began to whimper in frightened anticipation.  This time the needle plunged in quickly and surely, piercing the swollen skin and finding its mark in the buried VAD.   Once blood had been drawn and the I.V. pole was connected Andrew's tears subsided.  Although the crisis was over, all of us felt weary and battle worn.  We stepped out of the treatment room and immediately sensed an unusual hush in the rest of the clinic.  No one moved or spoke.  The usually busy nurses were quietly gathered together in the nurses' station, while the waiting families sat silently with their sick children.  Every eye was on us as we slowly made our way back to our seats.  Seeing their looks of sympathy and concern I smiled weakly, realizing that Andrew's terrified screams had unsettled everyone.  Later on, as we travelled home my mind replayed the trauma we had experienced that afternoon.  I kept reliving the horror of that fateful needle plunging over and over again into Andrew's swollen chest while he screamed, "Please stop! Please take it out! No! No! Not again!  Please, not again!"  The pain in my heart grew to overwhelming proportions until at last the dam broke and my tears started to flow.  At first I cried for our helplessness.  Then I cried out of anger--anger at the nurse for being so incompetent, anger at ourselves for standing by helplessly, and finally, anger at God for letting us down.  We had prayed before the poke, we had prayed during the poke and it had still gone awry. 
            Seeing my quiet distress, Harry tried to reassure me of his faith in God's ability to heal Andrew but I was unconvinced.  If God would not answer my prayer over a lesser issue such as a poke, how could I be sure that He would answer bigger prayers such as the healing of Andrew's cancer. 
            For the first time in my life I felt that my faith had been shaken to the core of my being.  The Rock of Ages no longer seemed sure and firm, but unpredictable and even elusive.  As I allowed my feelings of betrayal to grow, it seemed as though another burden had been added to my already laden heart--the burden of doubt.  Yes, God was real, but was He in control of everything?  Was He truly interested in the small details of our lives?  Why did He sometimes clearly intervene in answer to our prayers and other times remain distant and uninvolved?
            For three days my anger consumed me and then God in His fatherly way, laid His hand upon me.  Lovingly He convicted me of my anger against Him as I read Psalm 51:
            "Have mercy on me, O God,
            according to your unfailing love;
            according to your great compassion blot out my transgressions.
            Against you, you only, have I sinned
            and done what is evil in your sight,
            so that you are proved right when you speak
            and justified when you judge.
            Surely I was sinful at birth,
            sinful from the time my mother conceived me."

            I realized that my anger was unwarranted.  God is good;  He had already proved it by giving his own son for my salvation when I had done nothing to deserve it.  He had also proven it many times in the past by answering other prayers. Just because my son was experiencing pain did not mean that God did not love us.  I had to trust Him, just as Andrew had to trust me when I took him to the hospital.  Somehow God would make everything work together for good.
            As I confessed my sin of anger and self-righteousness to God He led me tenderly through the rest of the psalm:
            "Create in me a pure heart, O God,
            and renew a steadfast spirit with me.
            Do not cast me from your presence or take your
            Holy Spirit from me.
            Restore to me the joy of your salvation
            and grant me a willing spirit to sustain me."

My burdens lifted and as peace once again filled me I was suddenly reminded of Christ's words on the cross,
"My God, my God, why have you forsaken me?"  What a solace that was!  Christ himself had felt just like me--abandoned by God in his darkest hour.  I resolved that in the darkness I would hold on and have faith.  Little did I know that the darkness would last several months and that my resolve would be tested many times.
            Two days later I got strep throat.  I also received my first book on health food alternatives from a concerned friend.  Feeling ill myself, I was impressed with the book's claim that a juice fast could cure almost any cancer.  More health food literature found its way into our home and I was stunned to read that the big pharmaceutical companies were purposely withholding a cure to cancer for greedy gain.  Obviously a cancer cure would eliminate the need for chemotherapies and other medications in the treatment of cancer. 
            At the time I found these magazines and books to be credible because, after all, I had often used vitamins to alleviate my chronic strep throat.   I read the fascinating story of ESSIAC--a herbal tea originating in Canada--which had gone through many legal battles for ownership because of its power to heal cancer.  As I read on I became convinced that we needed to seriously consider other options besides conventional medicine.  Andrew was already booked for minor radiation to his testicles and I was feeling very uneasy about that decision.  Radiation is a big 'no-no' to health food experts because of the damage it does to cells and its propensity to produce tumors.  We were also facing the possibility of total body radiation for a bone marrow transplant and I felt that all this radiation was flying in the face of current information I was receiving. 

            A visit with another couple who had used only alternative treatments to bring their terminally-ill daughter into remission became another argument in my mind against conventional medicine.  They had spent weeks thoroughly researching her illness, and then had chosen to fly across the continent to another city where a reknown naturopath treated her with unconventional methods.  Her diet was immediately eliminated of all dairy products, white flour, refined sugar, salt, meat, and any processed foods.  She was put on high dosages of vitamins and natural food supplements.  As a result she regained her ability to walk and seemed to be going into remission.   On a brief trip back home for the Christmas holidays she suddenly, and mysteriously, passed away.  Perhaps not so mysteriously, for an autopsy showed that all internal organs were filled with leukemia cells.  The parents were convinced though that although their chosen method of treatment had not prolonged her life, it had improved the quality of her life. 
            Feeling very confused, I discussed my indecision with my parents and close friends.  Although Harry remained ambivalent on the issue of health remedies, my parents became strong advocates of alternative therapies and urged us to avoid transplant at all costs.
            Armed with my new knowledge I decided to make a call to a well-known naturopath and get some real answers.   To my surprise he returned my call the same day and seemed pleasant enough at first as we discussed various health products.  However when he discovered that our son had cancer he became more reserved about his ability to help us. He closed the conversation by saying, "I can't promise you that I can do anything for your son.   Everybody has to die sooner or later.”  This left me feeling strangely uncomfortable.          That night as I read the story of Hagar and her dying son, Ishmael, in the desert, I noticed God's prominent role in their lives.  First, He heard the boy crying.   Then He sent comfort to Hagar in the form of an angel.  Next, God opened her eyes to see His answer to her dilemma--a well of water.  And lastly, scripture states that God was with Ishmael as he grew up.  The story touched the deep inner part of my heart that was still crying out for my son.  I still wasn't sure which treatment would cure Andrew, but for the moment my inner confusion was held at bay as I claimed this story for my comfort.  Surely God could hear Andrew's cries and questions, and surely He would open our eyes to the right path.

Saturday, November 17, 2012

Book - 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.