Thursday, January 8, 2015

Can you ever stop being a mother?

Jan 5, 2015
We arrive at US Border Customs with a mixture of attitudes:   I am feeling anxious and saying things like—'Aaron should have brought his school letter along...what if they become suspicious about his trip to LA';  Harry is slightly annoyed by my anxious comments and grips the steering wheel more tightly, and Aaron is blissfully confident that nothing can go wrong.  Boom roasted!    Everything does go wrong!  The cheerful customs official hands us a pink slip at the very end of his litany sending us (still with a cheerful tone) into the Customs building.  Never trust a cheerful man at lunch time! The woman who greets us inside the building looks like she just had her lunchs and it didn't agree with her.   Her tone is stern and somewhat sarcastic as though she knows exactly where she is going with her questions.  However, in the end there was nowhere to ‘go’ with the questions and Aaron’s story has to be accepted as accurate. 

Now, with this 45 minute delay we are bound to miss Aaron’s flight.  We do our best, passing cars on the 2 lane highway with great decorum, speeding up at yellow lights as inconspicuously as possible, and keeping a sharp lookout for state troopers.  Aaron gives directions to the airport at lightning speed and Harry practises his Nascar skills with great dexterity.  At the Departure doors Aaron bounds out of the car with back-pack, pillow, and suitcase flapping alongside.  I hurry after him 

Inside the departure area he runs directly to the passenger line up.  Only no one is lined up of course.  Only one 30-ish Latino woman is sweetly saying, ‘Good-bye Mummy’ as Aaron dashes past her.  I glance at ‘Mummy’ an older Latino woman in her 50’s, heavily made up and dressed in her Sunday best.  She smiles at me and says with a heavy sigh, ”My daughter.”  I smile back understandingly.  It is always hard to say goodbye.
As my eyes anxiously follow Aaron’s progress through security, I say to her, “Children should stay close to home, don’t you think?”  
“Yes,” she says emphatically with tears filling her eyes.  I want to give her a hug but don’t want to lose sight of Aaron. So I move closer to her while keeping my eyes on Aaron.
“I told my 3 sons that it was an unspoken rule that children should live close to their parents,”  I go on to say confidingly. 
She nods, but then informs me that even though her daughter is returning to El Salvador they call each other every week.  She says, “My daughter always tells me, Mummy, I need you every single day. I will always need you.”    I tell her she is lucky to have a daughter.   But no, there is more.  She has a son too who calls her from Canada. Every single day!  I stand in awe of such loyalty.  How did she produce such loving kids? 

As I see Aaron grabbing his stuff and running for all he's worth towards the gate and out of sight,  I feel extremely anxious.  I walk over to the lobby to study the Arrivals and Departures screen.  Did he make it? How will I know?  Should we wait?
From a distance I hear, “Lady!   Good bye!”   I scan the lobby and see my Spanish friend waving as she leaves the building.  My heart is warmed and I wave back enthusiastically.   I see the secret of her loving family.  She is a loving person. 

I tell my husband we will wait a few minutes to make sure Aaron made it on the plane even though he was 5 minutes late for boarding.  To our dismay he returns within minutes.  He did not board.  It was too late.  But we say nothing and wait for him to re-book.  We all remain calm in spite of the stress we have felt for the last hour.  I am thankful to have my son with me a little longer even though we just wasted a $150 plane ticket and he had to pay $75 for another one.  Some things just can't be measured in dollars and cents.  And one of those is a mother's love.  I will never stop being a mother, I guess.



Wednesday, August 6, 2014

BOOK - Chapter 6



Chapter 6


The next day was Andrew's first radiation appointment.  We had decided to leave Ryan and Ari with my mom so that Harry and I could give Andrew our undivided attention.  We arrived at the large Cancer Clinic in Vancouver and took the elevator upstairs to the Radiation Department.  A long hallway stretched to the left with a sign hanging from the ceiling that read "250 KV".  That was the designation for the machine which could produce 250 kilovolts of radiation.  It was one of the less powerful machines and looked innocuous enough, but my spirit was fearful as a technician approached us.
            "Are you Mr. and Mrs. Schroeder?" she asked.
            "Yes,"  we both answered at once.                                                                                                               "I'm Dr. Godard," she introduced herself.  "I understand you're not sure whether you want to go ahead with radiation today." 
            Harry and I glanced at each other a little surprised that our concerns were being addressed by every sector of the medical establishment.  As we hesitated over what to say, she went on.
            "It can certainly be postponed,"  she continued.  "You shouldn't feel pressured."
            "What happens if we choose not to do the radiation immediately?"  Harry asked.
            "The testicular radiation can be added to the radiation your son will get later just before his transplant.  It makes no difference to us, or to his prognosis.  However, if he has the radiation in separate batches it will give his skin time to heal up in between." Again, Harry and I both began to speak, then stopped.
            Dr. Goddard looked at us searchingly.
            "Would you like a little time to think it over?"  she asked.  "You can come back tomorrow if you like."  The thought of having driven all this way in vain bothered me and yet the door to confusion had now been reopened.
            "Can we have 5 minutes right now to make up our minds?"  asked Harry.
            "Certainly," was her gracious reply.  "Feel free to use this little room and let me know when you've decided.  It’s no problem to reschedule his appointments." 
            Leaving Andrew with some toys in the waiting room we entered the small treatment room and closed the door behind us.  Harry felt that having come this far and knowing Andrew would have to have this radiation anyways we should probably go ahead with it.  I nodded my head.
            "Let's just pray before we go back out there,"  Harry suggested.  As we lifted our voices in supplication for our son, we were reassured that friends at home were praying with us including our friend Dave who had promised to fast and pray for us that day.  Later he told us that at the exact moment when we were getting our peace,  he was receiving confirmation that our indecision was over and that we would be alright. 
            Back at the cancer clinic we re-entered the hallway to be met by a pretty, dark-haired technician who introduced herself as Alex and asked us to follow her.  In the treatment room Harry lifted up Andrew onto the bed where a few measurements had to be taken before positioning the radiation machine.  Before we left the room Alex put a beautiful plush white teddy bear into Andrew's hands.  It had a red satin bow around its neck that contrasted with the bright whiteness of the soft bear.
            "Andrew, Teddy here is going to stay with you in this room while the machine takes pictures of you.  Can you lie really still all by yourself?"  Alex asked.
            Andrew nodded his head seriously.  He was always very quiet and very good when in the presence of medical staff. 
            "Would you like to hold Teddy?"  she asked.
            A nod was his only response.
            "Teddy, this little boy is Andrew and he would like to be friends with you.  How would you like to lie on the bed beside him?"  Teddy nodded vigorously.
            The two were settled down together and the rest of us all left the room.  The heavy white door clicked shut and I felt tears pricking at my eyelids.  How could we do this to our little boy?  It broke my heart to think that we were forever closing the door on Andrew's ability to have children.  He had been such a blessing to us.  Now he might never experience the blessing of fatherhood himself.  Through my hurting thoughts I heard someone speaking to me.
            "Mrs. Schroeder, you can talk to Andrew over the intercom if you like," Alex suggested kindly.  I sat down in the office chair and pressed the intercom button.
            "Hi, Andrew, can you hear me?"  I asked.
            "Yes," came a tiny faraway voice.
            "Isn't this fun to talk to each other through the walls.  How's Teddy by the way?"  I went on.
            "He's okay."
            "Have you thought of a name for him yet?"  I asked.
            "No."
            "How about Snowflake?"
            "No."
            "Did you see all the stickers on the machine?"
            "Yes."  I was running out of steam.
            "Tomorrow I'll bring a book and read you a story,"  I promised.  With relief I saw the red light on the monitor go out and the treatment was finally over.  After saying goodbye to Teddy and receiving some flashy stickers for being a good boy, Andrew was allowed to leave and we headed for home.  It had gone better than we'd expected and slowly our anxiety about radiation settled down.  Little did we know how painful the side effects would be.
            Two more days of radiation followed during which Andrew began to complain of a mouth sore and I began to feel sick with the flu.  By Friday I was becoming more and more fatigued, my food was going straight through me and Andrew seemed unusually irritable.
            Since we had invited a couple over for Friday night Mom and Dad suggested that the three boys stay at their house.  I accepted the offer, wanting to have a quiet visit with our company.  They were complete strangers to us but had been through a similar illness with their three year old daughter and were willing to share their experience with us.
            The boys went happily to Grandma's and I put on the coffee for company.  When Les and June arrived we sensed that they were still grieving the loss of their daughter and that this visit was difficult for them.  It was less than a month since their little daughter had suddenly died and their wounds were still very fresh.  With very little preamble they bravely launched into their story. 
            Little Britney had been diagnosed with an aggressive form of leukemia with very limited time left to treat her.  The only medical option was a transplant with her 6 month old baby sister as donor.  The parents were horrified when they researched all that a transplant entailed for the donor.   The baby was too young to endure the procedure.   Les became zealously consumed with the need to research the disease and uncover every possible treatment.  As a result they had relocated to another city on the other side of the country to seek the help of a reknowned naturopath.  He attained a measure of success in restoring Britney to health briefly, however, the reprieve was short-lived as she passed away suddenly while still being treated. 
            As Les and June told us their story we were amazed at their vast knowledge of cancer and alternative remedies.  They had a comprehensive grasp of both conventional medicine and natural remedies.  They offered us literature to read as well as the phone number of the naturopath they had used.  We talked well into the night asking questions and absorbing information from this young, grieving couple.  We could not know the emotional toll this visit had on them, causing them to relive the last tragic months of their daughter's life so soon after her death, but we saw the grace of God at work in their lives and stood in awe of their peaceful acceptance of His will in their lives.
            The next day was a trying one for me.  I had been awake most of the night as I replayed everything that had been said the night before.  Once again doubts began to creep into my mind regarding the transplant.  We could still avoid it and choose the less painful route with natural medicine.  But would it be less painful?
            Meanwhile I took the opportunity that morning to see my general practitioner without the children.  Dr. Pauls warmly welcomed me and eagerly asked about Andrew.  I told him that we were facing more chemo, radiation,and a transplant.  I did not mention my inner turmoil but added that the transplant was only giving us a 30-40% chance of success. 
            Dr. Pauls responded with words that, unbeknownst to him, carried great significance for me, "You can have the transplant and God might heal him.  Or, He might not."   The thought came to me that here again was a member of the medical profession giving glory to God.  Was this God's way of directing us?  The much slandered medical profession was proving to be far more God-honoring that we had anticipated.
            Dr. Pauls finished writing out a prescription for me and as he handed it to me said sorrowfully, "I could just cry."  He turned away abruptly and reached for a kleenex, his shoulders heaving silently. 
            "You're going to get me started if you do that,"  I said fumbling for my own tissue.  "We'll be okay.  We know God is with us and He's in control," I added.  Dr. Pauls nodded.
            "Can I give you a hug?"  he asked.
            "Absolutely.  I need all the hugs I can get," I replied. 
            I left his office with a lighter heart and drove to Mom's, unaware that my words would soon be tested. 
            Ari came running to greet me with a hug while Mom met me with worried eyes.
            "Andrew hasn't eaten a thing since last night," she said in a  low voice.  "He's just been lying on the couch all morning.  He keeps complaining of a sore mouth."  I pulled off my coat and hurried over to the couch. 
            "Hi, Andy-bandy!  How're you feeling?"
            "My mouth-sore hurts,"  he mumbled softly.
            "Is that why you're not eating?"  I asked.  "Or is it because you're not hungry?"  He shrugged his shoulders listlessly in response.
            "What would you like for lunch, Andrew?"  coaxed Grandma.  "Can I make you a hot dog?"
            His eyes brightened briefly as he nodded his head.  While mom got the hot dogs ready I set the table and told her of my visit to the doctor.  Calling the children to the table I went to Andrew's side.
            "Can you get up to come to the table, honey?"  I asked. He shook his head lethargically. 
            "Maybe I better take a look at that mouth,"  I suggested.  He obediently opened his mouth a little.  "Can you open a little wider?"  I asked.  He started to cry.   "Ok. We'll get a flashlight, honey," I soothed him.
            Grandpa, who had come in for lunch, quickly brought me a flashlight. 
            I was shocked by what I saw in Andrew's mouth.  The insides of his cheek were bright red and inflamed.  At the base of the gums was a white canker sore that had already eaten away a deep hole into the flesh. 
            "You're not going to be able to eat are you?"  I asked Andrew.  He shook his head.
            "Does it hurt to talk?"  I questioned.  He nodded.  By now my lightheartedness had completely dissipated and the familiar gnawing of fear started up in the pit of my stomach.   I choked down some lunch wondering if the churning monster of fear would forever stalk me.  But then courage came to me as I remembered Les and June and their strong determination to make informed decisions for their daughter.  In the inspiration of that moment I tried to follow their example by calling up a local herbalist.  I wanted help and I wanted it right now.  The cancer clinic was closed for the weekend and I had nowhere else to turn.            
            The herbalist was understanding and helpful, suggesting some remedies that I could begin immediately.   We also made an appointment for a consultation with her.  I dashed off to the nearest health store and bought a number of bottles, returning to Mom's house with renewed hope.   Andrew refused to swallow any of them.  The pain in his mouth was so great that he could no longer open his mouth to talk.  I was frantic.
            Grabbing the phone once again I called my sister Liz.  As a registered nurse, she was the medical expert in our family and the one we all went to for advice.  She listened quietly as I poured out my fears and then in her calm way asked if the hospital had provided me with anything to counteract the effects of radiation.   My mind stopped short.   How was that connected with Andrew's symptoms?  
            "I've been given some bottles of medicated mouthwash but I think he's past getting any help from them,"  I replied.
            "Keep using those, Marilyn, I'm sure they will help,"  she insisted.  I sighed as we hung up, wondering how I would get Andrew to open his mouth never mind trying to swish and rinse it out. 
            The next day was Sunday and after church everyone met at Mom and Dad's for a big family dinner.  When Liz and her family arrived I drew her into a quiet corner where we reviewed Andrew's situation.  She went to Andrew, who was already lying on the couch, and put her arm gently around him.  Talking softly she got him to open his mouth partially while I held the flashlight.  After a quick look inside she too looked worried and asked whether we were using the medicated mouth wash.  I decided to make the best of this opportunity hoping that someone else's coaxing would help Andrew to submit to a mouth rinse.  Liz helped me draw Andrew to the sink while I readied the mouthwash.  Grandparents, cousins, aunts and uncles came to surround Andrew with their support and encouragement.  To please his crowd of onlookers Andrew swished and spit while we cheered him on. 
            As soon as the rinse was done he collapsed back onto the couch.  However, to my surprise he admitted that his mouth felt a little better.   By evening, after a second mouth rinse he was able to sip a little juice. 
            Unfortunately things didn't improve much over the next day and I began to feel stressed out.  My stomach was still not digesting food properly, our sleep was always being interrupted with Ari crawling into bed with us, and during the day I still had to keep homeschooling the boys as well as continue the daily household chores.  Added to this was the pressure of remembering all of Andrew's medications, organizing our schedule around his many appointments, and trying to read yet one more health book in my 'spare' time.   The frequent trips to Vancouver required constant packing and unpacking since we always went the night before to avoid the horrendous morning rush-hour traffic.    Now with Andrew experiencing unfamiliar side effects I was seized with new worries. 
            Two days of not eating and only sipping juices from a straw made him hungrier and hungrier.  I prepared his favourite foods as he waited hopefully, and then with his first tiny bite all appetite fled in the face of burning pain.   
            For once I was relieved to be going to Children's Hospital and could hardly wait for his next appointment.  In the morning I wakened early to have my quiet time. 
            Rubbing my eyes sleepily I opened my One Year Bible.  Skimming over the Old Testament passage for the day I hurried to the New Testament section which was Matthew 14:13-36.
            "When Jesus heard what had happened, he withdrew by boat privately to a solitary place."
            A sigh escaped my lips as my spirit joined with Christ in his sadness.  He had just received word of his cousin John's gruesome death and in the grief of that moment He wanted to be alone.  I imagined that He wanted to pray and perhaps weep, but my imagination was left wondering because by the time he reached land a large crowd was already there to greet Him.  No time to pray and weep.  Instead He healed the people, then he fed them with five loaves and two fish, and finally sent off his weary disciples while He dismissed the crowd.  At last there was time to pray.  But the needs of others came calling once again as He noticed that the disciples' ship was being buffeted by wind and waves.  Off He went to attend to their needs.  His compassion and servant-spirit never quit.  Nowhere could I find a shred of resentment or even discouragement in Jesus during this time of obvious sorrow in His life.  He took moments of solitude where He could but never ignored the needs of others as they intruded upon Him.
            Fully awake by now, I prayed for a pure heart and resolved to look to Christ for my strength, and to my husband for help in ordering my priorities. 
            After dropping off Ryan and Ari at Mom's, Harry, Andrew and I finally set off for Vancouver.
            Our first stop was the cancer clinic for another radiation treatment.  Alex, the technician, greeted us warmly.
            "Teddy sure missed you over the weekend, Andrew,"  she said.  Andrew smiled weakly as he quietly climbed onto the bed.  Alex gave him Teddy to hold while the machines were readied above him.  As Alex and I left the room she remarked on his paleness.
            "He's had a sore mouth all weekend,"  I told her.   "It's kept him from eating."  She nodded sympathetically as she turned on the intercom for me to communicate with Andrew.  When I looked up from my TV monitor at the end of his treatment I noticed that Alex was gone.  Another technician turned off the radiation machine and together we went in to help Andrew get dressed.  Teddy was placed back on the shelf until tomorrow and Andrew picked another sticker for his record chart.  We put on our coats, met Harry in the waiting room and headed for the elevator.  To our surprise we saw Alex there waiting for us.   In her hand was a large present for Andrew
            "You need a little something to cheer you up,"   she smiled handing a kit of play dough to Andrew.   
            "Thank you," Andrew whispered.  I thought I saw tears in her eyes but she quickly waved goodbye and walked away.   This was not the first gift he had received from the radiation nurses, but it was the biggest by far, and it warmed my heart perhaps even more than Andrew's.  Alex had once told me that she, too, had a little boy Andrew's age and I suspected that these gifts were prompted by a mother's heart.
            When we arrived at Children's the usual blood test was to be taken.   Unfortunately the blood would not draw properly and so Andrew's VAD had to be poked twice.  While we waited for the results I discussed his mouth sores with the nurse who instructed us to continue diligently using the medicated mouth rinses and to step up the mouth care to every two hours.
            Three hours later we finally received the blood results.  All his blood counts had dropped radically and we were informed that he would require a red blood cell transfusion the next day. 
            From the hospital we drove to the naturopath's office where we waited another 45 minutes to see him.  It was our second visit and I experienced a growing feeling of uneasiness.  When I had first contacted him on the phone he had responded with aloofness and what seemed like disinterest. 
            "I can't heal everybody," he had told me brusquely.  "We all have to die sooner or later." 
            At our first appointment he had been a little warmer and strangely enough, encouraged us to take the course that the medical doctors were advising us to follow.  He indicated that his role would be to simply supplement the conventional treatments with his herbal remedies.  Now, during our wait I observed the literature in his waiting room regarding many alternative remedies that he offered, and it disturbed me even further.  As the three of us entered his consultation office he appeared jovial and conversational.  He spent a fair bit of time discussing his other patients with us and virtually ignored Andrew.  As Harry tried to redirect the conversation back to our son the doctor began a litany of do's and don'ts for us to follow.  No dairy products, no white flour, no sugar, and on it went.  Somewhere in the list a question was raised in Harry's mind.
            "Excuse me, sir, but you just said no dairy products and yet at the same time Andrew is allowed yogurt?   Is yogurt not a dairy product?"  
            For some unexplainable reason the naturopath exploded.
            "Did you hear me say yogurt is a dairy product?"  he responded with unusual energy.  "I never said yogurt is a dairy product!  Do you think yogurt comes from a cow like milk comes from a cow and cheese comes from a cow?!  Let me tell you where yogurt comes from."    With loud, condescending deliberation he then proceeded to tell us more than we ever wanted to know about bacterial feces and the ensuing result of yogurt.   Suffice it to say, it was a long time before I was able to enjoy yogurt again.  It was also one of the last times we went to see that doctor.
            Reaching Abbotsford we stopped in at Grandma's to pick up the other two boys and found a hot supper waiting for us.  We gratefully ate, although Andrew barely touched it, and then carried on home.  While Harry got the boys ready for bed I packed a small overnight bag in anticipation of what the next day might bring.  Something inside me felt that Andrew's serious mouth sores would finally merit some serious attention and that would undoubtedly require a stay in the hospital.
            Once the boys were kissed and prayed with and tucked in, Harry and I sprawled out in our sitting room to review the days' events.
            "It seems to me that we've got to continue seeking God and His Word rather than running after natural remedies," was Harry's comment after we replayed the yogurt episode.  "Look at how Les and June spent precious time researching their daughter's disease and trying radical remedies only to lose her anyways.  Now that knowledge is useless. And it certainly won't help little Brittny anymore.  I would rather spend these months digging into God's word and making memories with Andrew than sitting in a library in Vancouver pouring over medical books."
            I nodded in heartfelt agreement.  God was already confirming my priorities through my husband and the tension I felt from the visit with the naturopath was rapidly dissipating.  We would trust in the Lord our God and no other. 


Saturday, January 19, 2013

Book - Chapter 5




CHAPTER 5
           Monday morning after breakfast I phoned the office of our local pediatrician, Dr. Traverse.  Due to the staunch resistance my parents felt towards a transplant, Harry and I had decided that a meeting with Dr. Traverse might settle some of their anxiety.  His receptionist listened patiently as I explained our desire to meet with Dr. Traverse as soon as possible.  She consulted with the doctor and then booked us for a 4:30 appointment that same day. 
            I tried to get the boys started on their school work for the day but my heart was not in it.  In the afternoon the phone rang just as Andrew asked me to read to him.  Worry nagged at me as I watched him quietly return to play upstairs.  He looked so tired and lethargic.  What could I do to make him healthy?  I felt so helpless and so guilty. 
            We had tried eliminating sugar and milk and white flour from his diet.  But it was hard for a little boy to understand why he had to give up his favorite foods.   He did his best though, and stoically denied himself desserts and goodies.  He obediently swallowed vitamins and pills, but detested drinking some of the other herbal remedies.  At times it all seemed so futile to me.  Was it really helping to take herbal products when the chemotherapy was making such an onslaught on his whole system?
            As I answered the phone it was a relief to hear Tilly’s voice on the other end.  I shared my worries with her while she listened quietly.  After hearing me out, she gently questioned whether I should be fretting and fussing when I could be enjoying my son and my time with him.  That helped change my perspective.  She kept the conversation short and again urged me to spend time with the children instead of trying to analyze Andrew’s diet.  I called him back down as soon as we hung up and spent the rest of the afternoon reading and playing games with the boys. 
            At 4:15 a neighbor came over to babysit while I left to meet Harry at the doctor's office.  Mom and Dad arrived shortly after we did and to my surprise had brought my sister Liz along.  As a registered nurse she had informed herself about Andrew's disease and was keenly interested in Dr. Traverse's perspective.  I was pleased to have her there knowing that her medical knowledge could absorb Dr. Traverse's information in a much more efficient manner than we would be able to. 
            Dr. Traverse greeted us warmly albeit with a sober face, realizing the crisis we were in.  He seated us in a semi-circle around his desk and as he sat down Harry began.  "Dr. Traverse, we really appreciate you taking the time to see us.  As you know, we are being advised to treat Andrew with a bone marrow transplant, however, we aren't sure that that is the best option.  Could you give us your opinion of Andrew's situation?"
            "I was shocked when I heard that Andrew had relapsed," Dr. Traverse began.  "In all the years of my practice I have treated about 12 A.L.L. patients and of those 12 only 2 relapsed.  Accute Lymphocytic Leukemia is the most curable cancer.  Few children with A.L.L. die.  The chemo is almost always effective in putting them into remission.  Now, why Andrew relapsed we don't know, but it is highly unusual."
            "What would you say is the best form of treatment for Andrew at this point?" we asked.
            He paused thoughtfully. 
            "You have a choice of chemo--which would be another 2 or 3 years--or, you can have a bone marrow transplant which might take up to a year.  Now if Andrew didn't have a good donor match then you would want to consider chemo, but with the perfect match that they have found for him, you would undoubtedly be better off with the BMT."
            I noticed my father looking agitated.
            "Dr. Traverse, what about going with alternative health methods like ozone treatments, interferon, chelation therapies, and herbal remedies?" I quickly inserted.
            Dr. Traverse's face took on a rather forbidding look.
            "Herbs!  Herbs are fine when you have minor ailments, but herbs will not cure leukemia.  We had a child brought into the emergency room last month.  Her parents tried to cure her with alternative methods and she died!  She died a terrible, tragic death!"
            His dramatic words silenced us.  In the quietness Dad cleared his throat and slowly began to speak.
            "We understand that a bone marrow transplant brings with it much suffering for the patient.  We cannot justify subjecting Andrew to this type of pain when we have no guarantee that the bone marrow transplant would be a success."
            "Yes, there is pain," agreed the Doctor.  "There will be rejection of the body to the new bone marrow cells.  However, even the rejection can be controlled with newly developed drugs and usually burns itself out after a matter of time.  Then, in a year's time you have a child that is cancer-free!"
            "But what if the transplant doesn't work and Andrew dies,"  Dad persisted.
            "That is a possibility but if you don't try it you will have to live with the awful regret that it might have worked.  And if you don't do it then Andrew dies anyways."
            "Yes, that’s exactly my point.  If he's going to die anyways, we want it to be the least painful death," my father emphasized.
            The chilling words that the doctor said next seemed to be God-ordained as they brought about an amazing climax.
            "And you think that Andrew will not suffer if he dies a 'natural' death?"  Dr. Traverse responded.  As the words hung in the air over us waiting for our heavy hearts to absorb them, I glanced at my father and somehow knew that his mind was doing a complete turn-around. 
            "Could you describe what would happen in such an event?" my father questioned.  The tension in my heart was almost more than I could bear.  It felt wearisome beyond belief to be discussing Andrew's death and yet the light was about to break through.
            "Well, he would slowly lose the use of his limbs as fatigue would overtake him.  Then as his blood cells would deteriorate he would surely develop a bacterial infection in his lungs which would kill him.  The other possibility would be hemorrhaging in the brain as his platelets would no longer be able to clot."   These grim words hit all of us--but particularly my father--like a freight train, blowing apart his cherished hope that Andrew could be spared pain and suffering. 
            I saw the flash of understanding cross my father's lined face as he recognized that fact that Andrew would have to suffer regardless of which route we took.  Enough had been said.  There were no more questions.  Our minds and hearts had more than enough bitter food to digest.  We thanked the doctor again for his time, and silently went to our cars.   Just before Liz went to join Mom and Dad in their vehicle she put her hand on my shoulder and said quietly, "Well, that's settled!  The transplant is your only choice, right?"  I smiled ruefully and nodded.
            Later when I met Harry at home his first words were, "Well, that was a waste of time!"
            "Why?"  I asked in surprise.
            "Well, for one thing, Dr. Traverse talked so quietly I'm sure your mom couldn't hear a thing, and for another thing, I couldn't understand a word he said.  It all sounded like technical doctor-talk.  I'm sure it could have been Greek as far as your parents were concerned."
            "I'm not so sure," I responded thoughtfully.  "I thought Dad did a complete 360 degree turn in his mind when Dr. Traverse talked about dying a natural death."
            "You think so?" Harry said incredulously.  "That sure passed me by."
            "We'll find out when we go there for supper tonight,"  I responded.
            Mom's kitchen was humming with family and relatives when we arrived.  An aunt and uncle were visiting and so a family gathering was in order.  There was no opportunity to talk about our conference with the doctor and so I concentrated on enjoying this unexpected visit with loving relatives.  After the meal, as I was carrying dirty dishes from the dining room into the kitchen, Dad followed me and putting his arm around me said quietly, "Mom and I think you're  doing the right thing by going ahead with the transplant." 
            My heart was still singing that evening as I read in my Bible before bedtime,
            "Look on me and answer...
            Give light to my eyes, or I will sleep in death..
            But I trust in your unfailing love;
            I will sing to the Lord, for He has been good to me."
                                                                                    (Psalm 13)

Sunday, December 9, 2012

Book - Chapter 4



CHAPTER FOUR

            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!