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!
