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As it turned out, the following day was indeed a special father-daughter day. Doris accompanied
me on the early morning commute from Fredericksburg to Washington--her first time on a train.
She was awestruck by the majestic Thurgood Marshall Federal Judiciary Building in which I
worked. Staff with the Administrative Office of the U. S. Courts put on a comprehensive
program for the 50 kids in attendance. One of the highlights of the day was a VIP tour of the
United States Supreme Court.
The memory of this day will be forever etched in my memory. Not only because it was a special
day with my oldest daughter but because it was the first time Doris complained of pain in her
foot and lower leg. My wife and I discussed her complaint later that evening and concluded it
must be shin splints. We attributed it to a new pair of sandals that we'd recently purchased for
her.
Only a week later, Doris was ill again, with a fever, severe headache, and extreme lethargy.
During a sunny spring weekend, Doris would go outside to play, only to return minutes later
exhausted, flopping herself onto the sofa to rest. "It must be her allergies," my wife Michelle
said, "every time she goes outside, she comes right back all tired out."
Eleven months earlier we had relocated to Fredericksburg, Virginia from Mississippi. This was
our first experience of Spring in Virginia. Doris' apparent allergies were attributed to the new
location--it provided ". . . just another reason.," my second oldest daughter, Rose, often would
gripe, " . that dad shouldn't have moved us away from our friends."
On May 6, 1998, Michelle called me at work. "The doctor has referred Doris to a pediatric
cardiologist. She may have a heart murmur. Her appointment is in two weeks."
That evening during dinner when the subject came up again, I placed my ear to Doris' chest and
listened. I was shocked by what I heard: her heart was racing. I knew something was terribly
wrong. I told Michelle, "I don't think we can wait two weeks."
The following morning, I took off from work to drive Doris to the pediatric cardiologist at
Medical College of Virginia (MCV) Hospital in Richmond, Virginia. After an extensive
examination and tests, the pediatric cardiologist return to our room and said, "There are some problems with Doris' heart but I
think this is part of a bigger picture. You need to get her to a pediatrician for a complete work-up. She doesn't look well."
On May 8, 1998, after another examination that included blood tests, the pediatrician sat us
down in her office and sadly informed, "Doris, you have leukemia." Turning to me, she sighed heavily and said,
"Her white count is extremely high. So high, in fact, we can't read the count. You must go to
the hospital immediately."
Although the pediatrician had briefly explained to Doris and I what leukemia was, Doris wanted
to hear it from me. Once inside the van and on our way out of the clinic parking lot, she asked,
"Dad, what is leukemia?"
Briefly glancing into the rearview mirror at her sitting behind me, I said, "It's a cancer that's produced in your bone marrow--a cancer of the blood." This was my
description based on my very limited knowledge of leukemia at the time.
"Can I die from this?"
"Yes, you can die from leukemia, Doris, but we can die from many other things. We could be
killed in a car accident--we never know when we're going to die. But, leukemia can be treated
and many kids survive this. That's what we have to do now. Get you to the hospital where the
specialists can start treatment right away."
I looked again in the rearview mirror and saw my sick daughter staring out the side window, crying.
I solemly drove to the elementary school and picked up Oliver and Rose. Then I drove to the child care
center and picked up 3 year old, Heidi. Finally, I went to Michelle's employment and picked her
up after she'd told me on the phone that the car had been quitting on her at each intersection that
morning on her way to work. With our family of six mobilized, we raced 50 miles south to
Richmond.
We arrived at the MCV Hospital's Massey Cancer Center less than an hour later. I had seen the
building the previous day when taking Doris to the cardiologist. Buildings with the words
"CANCER" on them were places I had always sought to avoid both physically and
psychologically. Growing up, a number of my parents' neighbors and friends were stricken with
cancer and had summarily died.
Whenever the subject of somebody's cancer would come up at the dinner table, my dad would
always say, "Once that blankety-blank cancer gets a hold of you, you're gonna die from it sooner
or later. No doubt about it." He would also say, "What that chemo does to a fellow, why hell,
he be better off to forgo it altogether." These words stuck with me into adulthood because
everywhere I'd seen human examples of the physical effects of chemo therapy. I had listened as
friends with cancer described in horrific detail their own side effects from the treatment. I had
seen nothing to contradict my dad's credo. I had even heard myself repeat similar statements. I
had yet to meet any survivors of this insidious disease.
Zombie-like, we found our way to the pediatric-oncology clinic. It was referred to as the Peds
Hem/Onc Clinic. Immediately, staff members converged upon us: "Are you the Gowens'? Is
this Doris?"
The other three children were wisked away by child life therapists and taken to the recreational
play area. One of the therapist's, Virginia, who we would get to know quite well, said, "We 'll
take care of them, do not worry."
Michelle and I went with Doris into a treatment room. On the door was a plague with a picture
of a deceased child with a "In Memory Of" on the top border. My dad's words echoed in my
head and I quickly redirected my thoughts.
As Doris lay on a table in the center of the treatment room, Michelle and I sat by her side. While
an intravenous line was started and blood drawn for additional tests, various people in addition
to the oncologist came in and introduced themselves--a pastor, a social worker, a play therapist,
nurses, and nurse aides. We didn't realize it, at the time, but we would get to know all of these
people well in the coming days.
I hated watching Doris' chest jumping as she lay on the table. Her heart was pounding so rapidly
it made her entire chest jump each time it beat. Arteries on each side of her neck jumped out in
unison. She was connected to a heart rate monitor which showed her heart rate at 160 beats per
minute. We would soon learn that this was from her anemic condition, one of the many effects
of leukemia.
Once Doris was transferred to the hospital's pediatric intensive care unit (PICU), the news from
the doctors got worse. After the oncologist performed a bone marrow aspiration and a spinal tap
to confirm the diagnosis of leukemia, we learned specifically what type it was and the count.
"Doris has acute lymphoblastic leukemia, early pre-B cell. The white blood cell count in her
peripheral blood is about 550,000. Her bone marrow is packed with leukemia blasts."
"What does this mean? Is that white count high?"
"Extremely high. The normal WBC range is 4,000-10,000. Doris is certainly in record
territory."
"What's the usual count in these types of cases?"
"It varies, but 10-25,000 is average and anything above 50,000 is considered very high."
The next thing that occurred was a procedure called leukopheresis, in which a machine is
hooked up to two separate intravenous lines to patient. Blood is drawn out of one IV into the
machine which filters out the white blood cells (in this case the leukemia cells) and returns the
remaining blood cells back into the body through the second IV. This procedure lasted 4 hours
and cut Doris' white blood cell (WBC) count in half--to about 250,000.
She was administered chemotherapy immediately following the leukopheresis procedure. The
next day we learned that the chemo had produced an effect as well: The WBC had halved
again--125,000.
But more bad news. Tests returned on the spinal tap indicated some leukemia blasts in the
spinal fluid. This also explained Doris' severe headaches and lost eyesight in one eye--increased
intracranial pressure. A MRI of Doris' head revealed the presence of infarcts--small
hemorrhages inside the brain. If I had known all of this earlier, I would have carried Doris from
the car to the clinic, instead of letting her walk. It was amazing that she hadn't went into shock
or started having seizures.
From reading the MRI, the neurologist could not conclusively say that the infarcts were blood
hemorrhages. Thus, it was assumed that the infarcts were clumps of sticky leukemia blasts.
While Michelle had left with the other kids to take care of things at home, I remained at the
hospital with Doris. This would become our modus operandi--we worked in shifts; her or me at
home while the other was with Doris at the hospital. With 4 kids, we had a lot to manage.
During my shift at the hospital, one of the oncologist's led me to an empty patient room. She
reminded me of an auto mechanic as she stiffly and grimly described all of the things wrong
with Doris. Then she followed with what needed to be done, just like they do at the car repair
shop. "Now that I've made the this declaration to you, Mr. Gowen, Doris will require intensive
chemotherapy for about 30 days to induce a remission (induction therapy) followed by a six
month regimen of consolidation chemotherapy. From there, Doris should receive spinal-cranial
radiation and a bone marrow transplant."
"You have insurance?"
"Yes, I am a federal government employee. Why?"
"All of this is very expensive and insurance is often an issue, especially for the bone marrow
transplant. Costs for transplants can sometimes be as high as $200,000."
Within a few days, Doris was transferred out of the PICU onto the regular pediatric unit. This
was a positive step as we'd been told that she would require intensive care much longer. Next,
Doris underwent surgery for the installation of a port-a-catheter under the skin on the left side of
her chest. Because of the frequency of infusions she would need over the next two years and the
fact that some chemo drugs can burn up small veins, a central line was required. After
awakening from surgery, a nurse insisted that she swallow a pill. I knew this was going to be
bad because Doris was nauseated and couldn't even sip water. She took the pill as instructed
and threw it back up instantly along with blood. I held her up during this episode in shock that
this was happening to my daughter.
On May 12th, Doris' friends, Kirby and Carla came to visit. Doris was immediately uplifted as shown by these pictures.
It also was uplifting on this day because the effects of the steriod, prednisone, kicked in. Her appetite
returned and she began eating like a horse. A few days later, she developed diabetes, a side
effect of the prednisone along with another chemo-therapeutic agent she'd been administered.
We received training on how to administer insulin. However, once discharged, Doris never
required anymore insulin.
The negative side effects of prednisone soon took hold of Doris. Her emotions flipped flopped
constantly. She would get hyperactive and try to get her mother or me to take her to a movie or
allow her to go to a sleepover with friends. When we refused, she would throw a terrible
tantrum. Sometimes she would start crying for no apparent reason.
She also ate constantly and our food bill doubled. One morning at 5:00 am while I was getting
ready to leave for work, I found her in the living room eating 2 cans of tuna.
Doris started to put on some badly needed weight. She rapidly regained her strength. At one
point she looked healthier than I'd ever seen her. She had no signs yet of hair loss--something
that we'd been told would happen quite rapidly. We felt like she really had a leg up on the
leukemia.
At day 29 of the induction protocol Doris was declared to be in complete remission. We were
all relieved with this news. As I had gathered from the doctors, her initial condition tempered
their enthusiasm on her achieving a quick remission. But she'd made enormous progress from
the first day.
Meanwhile, I had done a great deal of reading and now had full knowledge of the
nature of her diagnosis. Her extreme WBC and diagnosis of CNS leukemia meant that she
would have a hard road ahead of her to survive. She also did not have what is referred to as the
Philadelphia Chromosome translocation on her leukemia cells. This was good news as this
chromosomal translocation is an indicator of a very poor prognosis. On the flip side, Doris'
cells did not have the CD-10 antigen marker which is commonly associated with a good
prognosis. The CNS diagnosis wasn't as severe as it could have been. Doris had only a few
cells in her spinal fluid. The infarcts in her head quickly went away and her eyesight returned.
Step two was the next phase of treatment called consolidation therapy. This entailed multiple
combinations of drugs administered on a rotational basis (on various weeks) for the next six
months. For instance, she would receive an infusion of methotrexate for a couple of days and
then take 6-MP by mouth for a week. Another cycle included VM-26 and Ara-C.
We estimated that Doris would complete the consolidation by Christmas-time and proceed to the
bone marrow transplant. We had all of the other children tested for an HLA match for bone
marrow donation. Only about 35% of patients have a matching sibling donor. Those who do not
have a matching sibling usually search national and international marrow donor registries.
When the search yields no results, patients and their families often initiate marrow donor drives
in their communities. Even when this does not produce a match for the person in need, the
effort is likely to help someone else in need of a matching donor.
Luckily, we didn't have to deal with these issues. Heidi and Rose both were matches on six out
of six of the HLA factors. Since Heidi was only 3, Rose (11) would be the donor when the time
came for the transplant.
Meanwhile, Doris continued to improve. At diagnosis in May, she was five feet tall and
weighed about 65 pounds. By September, she was over 90 pounds and had grown an inch.
Doris remained so strong and resilient during consolidation, I began to question whether a bone
marrow transplant was necessary. In September, she was admitted to the hospital with a fever.
Cultures were grown to check for an infection. None were found. I sat down with one of the
oncologist's and asked some questions about proceeding with a bone marrow transplant. She
told me that there were no definite answers as to which approach was best--either continue with
traditional chemotherapy or go for the transplant. However, since a primary concern in a
transplant is obtaining a matching donor (which Doris had) and the risks associated with the
procedure when one has a partial match or even an unrelated donor, a transplant in Doris' case
would not likely pose any serious problems.
However, something else was bugging me at this time. In retrospect, I now know that I was
worried about a relapse. Doris' bone marrow had not been checked since June. It was
September and here she was in the hospital with an unexplained fever. I asked, "when do you
normally do the next bone marrow aspiration?"
"We usually do one after consolidation is completed."
"Okay, in your experience, when kids like Doris relapse, when does this normally happen?"
"Usually after completing consolidation. It is rare for a patient to relapse during front-line
therapy, especially on this higher dose protocol."
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