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!