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"What happens when you blow dandelions?" he wrote shakily. I
couldn’t understand what he had been asking and finally as I
read his words, my eyes filled with tears as I realized what
he was trying to say. I looked at him so full of love and pride
and explained to him how the little fuzzy things that blow are
actually seeds and everywhere one landed a new dandelion would
grow. I thought to myself, "What a precious analogy." You see,
my son was dying of cancer. Throughout the 5-½ years he battled
this ferocious disease, he "planted" seeds of love, compassion,
courage, and faith everywhere he went. Everybody who met this
precious angel fell in love with him.
It is my prayer that the story of my son’s incredible life,
short as it was, will offer you hope whatever your situation.
Our faith is ultimately what sustains us...the knowledge that
this is just the beginning of our eternity. May your faith be
strengthened and your life challenged to live to your fullest
potential during this time here on earth. It is my hope that
this website will encourage you in the same way Zachary
encouraged so many and continues to inspire me. This is his
story.
My son, Zachary, was born April 16, 1985 in San Marcos, Texas.
I went through eighteen hours of labor before they decided to
deliver him c-section. I remember being so tired that I couldn’t
even stay awake long enough to see him after he was born. But
when they brought him to me for the first time, I was
absolutely in awe. I remember shaking with emotion as they held
him out to me. When I reached out to hold him, my life changed
irrevocably from that moment forward.
We decided to name him Zachary after a character in a soap opera.
It wasn’t until I began my walk with Christ that I learned his
name meant "Remembered of God" in Hebrew. It was a very profound
moment for me because Zachary truly exemplified the name he was
given. My family was so excited over our new addition. My sister
, who was adamant about never having children, decided motherhood
needed a little more consideration. My mother must have written
ten hot checks that day going to every store she could think of
to buy something for her new grandson. The love affair had begun.
How blessed we were!!!
Zachary was born with a very rare condition called Fryn’s
Syndrome. He had moderate learning disabilities and limited
strength in his hands. But what he lacked in academic abilities,
he more than made up for in other areas. He had a wisdom way
beyond his young years...certainly way beyond mine. And he had
so much compassion that mere words are inadequate to even begin
to describe. Sometimes it was like he was the adult and I was the
child. He never got mad at anyone...I did that for him. He loved
totally and unconditionally. He always gave me a different
perspective...other than the usual, cynical approach we adults
tend to take. He loved life and he loved sharing it with people.
He made me see the glass half full instead of half empty. He
was an amazing person...and he was my son!
Zachary’s passion was fishing. He would rather fish than breathe.
When he wasn’t actually fishing...he was reading about fishing
or begging to be read to about fishing. We took a trip to
Colorado one year and Zach fished all the way there using a
computerized game you hold like a fishing pole. He almost gave
himself a concussion when he accidentally whacked himself in
the head trying to set the hook. He would have big knots on his
head from that game...he was very serious about his fishing!!!
One of the greatest moments I was privileged to share with him
was 2 ½ months before he died. He was still able to walk, but
tired easily and spent most of his time resting in bed. We got
the opportunity to go fishing one day at a private tank. It was
exciting for us because he just hadn’t been feeling well and
wasn’t up to doing much. We all loaded up and headed for the
tank. It didn’t take long before Zach was reeling them in. He
was in his element. A newfound strength overcame Zach and you
would have thought he could conquer the world. It was exciting
seeing him fight those big fish and at the same time seeing him
have the time of his life. Little did we know it would be the
last time he would ever get to fish. He caught over ten huge bass
the largest of which we have hanging on our living room wall…a
precious reminder of that wonderful day and the lifetime of
fishing he loved.
We lived a rather quiet, mundane life during Zach’s early years.
Weekends were spent finding new places to go camping or fishing.
Zach loved to go. Some laugh and say he was born in the car seat
rearing to go from day one. He would marvel at God’s creation...
whether it be a beautiful sunrise or a field of wild flowers. In
his prayers every night...he always thanked God for the flowers
and the trees. He never took anything for granted and was always
grateful for the least of things.
Zach was 4 ½ when I became pregnant with his sister. He was
elated with the prospect of having a sibling and made it very
clear to us he preferred a sister. On a visit to the doctor one
day, Zach and my husband joined me because we were going to have
an ultrasound. Zach could barely contain his excitement hoping
we would be able to find out what we were going to have. My
husband and I had initially decided not to find out...we just
wanted to be surprised...but Zach was adamant about knowing. So
as the doctor was performing the procedure, he asked us if we
wanted to know and Zach and I both emphatically said yes, while
my husband voiced a very reserved no. Zach and I won and the
doctor typed "baby sister" on the screen. Zach’s eyes lit up and
looked at me with the most wonderful, proud look on his face. He
was so happy.
When our daughter was born, Zach anxiously awaited her arrival
in the waiting room. While I waited in recovery, Zach stood
stoically at the nursery window hoping to catch a glimpse of
his baby. My mother said the nurses finally felt sorry for him
and brought Telie up to the window for him to see. He was
mesmerized by this tiny new addition to our family. It was love
at first sight. He kept a constant vigil at the nursery window
and put up a fuss when he had to leave. He loved his baby!
Our perfect little world came to a crashing halt when we
discovered Zach had a malignant tumor under his nose. For six
months I had watched this little knot grow. I had taken Zach to
three different doctors each telling me it was absolutely
nothing to worry about. But as a mom, something just kept
gnawing at me. It wasn’t going away and seemed to be getting
bigger. Finally, I took Zach to another doctor who referred us
to an ear, nose and throat doctor.
In early April 1993, we saw an ear, nose and throat specialist.
When we got to his office, there must have been twenty people
waiting. Our appointment was for 10:00 am. We didn’t see the
doctor until after 12:00 pm. We get taken back to the exam
rooms and wait another hour before being seen. The doctor
finally comes into the room. His demeaner is rough and hurried.
Upon quick examination, he told us the lump was a cyst and we
needed to remove it; more for cosmetic reasons than anything
else. We made all the necessary arrangements for Zachary’s
surgery. We left the doctor’s office tired, cranky, yet relieved
it wasn’t anything more serious.
On April 22, 1993, Zachary had the surgery to remove his cyst.
The doctor came out of surgery and told us it wasn’t what he
thought it was, but he was 99.9 percent sure it wasn’t cancer.
Just hearing that word sent chills up my spine. We took Zach
home that day. Bless his heart, his lip swelled up ten times
its normal size. But he never complained. Two weeks later we
went in for his post-op visit. I remember my mother calling me
early that morning and asking if she could come along. I was
thrilled she wanted to go and anticipated a wonderful day of
being together with her and my children. We just needed to get
that silly doctor’s appointment out of the way!
We arrived on time and settled into the usual routine of waiting
to be seen. Finally, an hour later, Zachary’s name was called
and we all fell in line to be directed to an examination room.
As quickly and abruptly as the doctor came in on our initial
visit, he came in with a folder, never made eye contact with us,
and proceeded to tell us that the mysterious "cyst" turned out
to be malignant and we would be referred to a pediatric
oncologist. We sat there absolutely stunned; shocked beyond
words. I found myself losing my composure. I was trying
desperately not to fall apart in front of my son. My mother
looked at me sternly and said, "Be strong." I was angry at the
doctor for being so insensitive and telling us that kind of
news in front of Zach. We had no time to prepare ourselves and
the last thing I wanted to do was scare Zach. But Zachary was
always so perceptive and could tell when something was wrong.
He told me, "Don’t worry Mom…be happy!"
Our lives changed from that moment on. We began a new life
governed by chemotherapy, blood transfusions and frequent
hospital stays. Before starting treatment, Zach had a catheter
surgically placed in a large vein in his chest to be able to
deliver the drugs that were supposed to save his life. It was
covered by a 4" x 4" tagaderm which had to be changed every
other day. Imagine having that sized tape on your chest and
having it ripped off every other day. It was very painful. I
told Zach he could say his favorite bad word when we did dressing
changes. That always scared the nurses…but when they found out
his favorite bad word was "shutup"…they always let out a big
sigh of relief! He even came up with a name for his cathetor.
Being a big Arnold Schwarzenegger fan he decided to name it "The
Terminator". Quite appropriate I thought! His line had to be
"flushed" twice a day to keep blood from clotting and blocking
the line. This became our daily ritual for the next almost 6
years.
Chemotherapy ravaged Zachary’s frail body and in some ways seemed
more insidious than his disease. He got so malnourished that we
had to start feeding him through a nasogastric tube, which goes
through his nose into his stomach. Can you imagine having that
done and having to live like that 5 days a week. When they
decided that 5 days wasn’t enough, we asked about different
options and they finally agreed to put in a gastrostomy tube
which is surgically placed in the stomach giving instant access
for liquefied food and medicine. It was a blessing in disguise.
His first day of chemo was rather uneventful. I was so amazed at
how relaxed Zachary was. As long as he could play nintendo…
everything was cool! We went home that night and still, he was
doing great. I thought…we can do this!!! Then around mid-night,
Zach woke me up throwing up. He was so sick and would look at me
so pitifully. He would cry and tell me he was sorry. That broke
my heart. I desperately wanted to change places with him. Why
couldn’t it be me??? We woke up the next morning to a phone call
from my mother. We hadn’t been asleep very long, Zach was sick
most of the night. Mom asked how things went and all I could do
was cry. "Mom, he was so sick," was all I could say. I know she
was fighting back tears…but she was so strong. She encouraged me
in the loving way she always did and told me everything would be
okay. I know as soon as she got off the phone she would burst
into tears. But whenever she was around us, she was a rock.
Almost a month to the day Zachary was diagnosed with cancer, my
mother died suddenly of cardiac standstill. The day after my
mother’s funeral, Zach was hospitalized. His little body was
shutting down from the chemotherapy. The thought of losing my
mother and my son in the same week was beyond my mental ability.
I felt so helpless, so distraught, so numb. I felt like this was
all a dream and I would wake up and my mother would be alive and
my son would be healthy. It wasn’t to be. This was about the
time I reached out to God. I always believed…but I didn’t take
an active part in forging a relationship with Him. My mother was
gone…I had to be a grown-up now and my son depended on me. Who
could I turn to for strength and wisdom? I know that God was
holding me in the very palm of His hand…like He has throughout
my whole life…I just realized that for the first time. I credit
my sister with the awakening of my walk with Christ. She planted
the seed, and God watered it. She always told me that God sends
people out in two’s and she and I were destined to be not only
sisters but spiritual partners as well. When one’s faith would
weaken, the other was strong.
There were many times she would have to get stern with me and
remind me to focus on God and not our circumstances. She was my
rock and I am so thankful for her. I have to wonder how people
get through these times without God…it is unimaginable. It was
during this time that God sent us a very special angel named
Carol. I got sick and could not stay with Zach because his white
cell count was so low and we couldn’t take the risk of infection
. Everyone I knew that could stay with him was unable to. My
friend Sarah called to talk to me and I told her of my situation.
I was desperate and didn’t know what I was going to do. A little
while later, she called again and asked if I minded if her
niece Carol stayed with Zach. I had known Sarah for 20 years and
felt comfortable with her recommending her niece. Little did I
know that Carol would soon become integrated into our family.
Zachary loved her…absolutely adored her. She had a way of making
him feel like the most special boy in the whole world. I am
eternally grateful to her for that.
Zach eventually recovered to the praise and glory of our God.
But the chemotherapy ravaged his little body. He got to where
he couldn’t even walk or hold a glass to get a drink. He had to
hold his head back to see because he was too weak to even hold
open his eyelids. But the one thing he could always do was smile.
As tired and stressed as I could get, one smile from Zach would
energize me for hours. He was amazing. He never got discouraged.
He found so much joy in the simpler pleasures of life that most
of us take for granted. A leisurely stroll in his wheel chair
just to see the sunshine or feel a warm breeze...it didn’t take
much to make him happy.
I was so naïve about cancer treatment. I thought we would go to
the hospital, get chemo, come home and get sick then start all
over again. I didn’t realize how this disease would invade our
lives and restrict Zach in so many ways. When we weren’t in the
hospital getting chemo, we were in the hospital for complications
from the chemo. It was frightening knowing the poisons put into
his little body to fight this disease could cause a number of
complications including death. I was horrified to find out that
many cancer patients don’t die from cancer but the treatments
used to fight cancer. When nurses would administer his
chemotherapy, they would have to wear protective gloves.
Zach completed his first year of treatment. It was exciting and
scary all at the same time. Our life returned to a quasi-normal
state…never to be the same after the year we had just been
through. But, our reprieve was short-lived. Only six short
months later, Zach’s cancer returned. We were all sitting around
talking one night and I told Zach he needed to spit out his
candy because we were fixing to go to bed. Zach looked at me
funny and said, "Mom, I don’t have any candy in my mouth." He
opened his mouth big and wide to show me and all I could stare
at was this huge knot that seemed to appear over night. The next
few days would confirm my suspicions…Zach’s cancer was back. We
started a very intense, aggressive therapy for the second time.
I knew that with each relapse, the chances for survival were
dramatically decreased. But we had God on our side and I chose
to trust Him and not the bleak prognosis doctor’s felt so
compelled to remind us of all the time.
Zach seemed to tolerate this regimen of chemo much better than
the regimen he was on the year before. Midway through his
treatment, however, he started having horrendous leg pain.
Everytime he would get chemo, in a matter of hours his legs
would start hurting. I had come to accept our life with cancer,
but the hardest part for me was seeing Zach hurt. I would talk
to the doctors and they would tell me it was "psychosomatic". It
was infuriating. Zach was the kind of kid who would suffer
silently. He never complained unless he was really hurting. I
remember Zach looking at me saying, "Mom, I’m trying so hard to
be brave." I told him he was the bravest person I had ever known…
he was my hero!" My relationship with his doctors became very
strained. The last week we were in the hospital, his doctor
didn’t come into his room once the whole time we were there. She
told our nurses that Zach’s pain was not real and simply didn’t
want to deal with me. After that final treatment, I packed our
stuff and we never went back to that hospital again. I made up
my mind that I would never let another doctor intimidate me again
. I had lost my trust in our doctors and with something as
serious as cancer, I could not afford to waste time fighting
over my son’s care. That is when we started going to Scott and
White hospital in Temple, TX.
I will never forget my first meeting with Dr. Frankel. He was
obviously not thrilled about taking on a patient who had left
their previous hospital on such bad terms. Nonetheless, he took
our case. He seemed so cold to me and there were times when I
questioned my decision to go there. But I was impressed with
his thoroughness and the way he communicated with me. I was
treated like a partner in Zach’s case instead of like an
irrational mom the way the other doctors had treated me. If I had
a concern, it was taken very seriously. If I had a question, it
would be answered in a direct, informative way. If he didn’t
have the answer, he would find it for me. And, he was honest
enough to tell me if he didn’t know the answer. I always felt
informed…and that was so important to me.
Zach was in remission for a year and a half. We would go for our
quarterly check-ups and ct scans. When six months passed, I held
my breath…but everything came out clear. We praised God for
Zach’s healing. But it was to be short-lived. Zach and his sister
bumped heads one day and a big goose-egg formed on Zach’s jaw.
I wasn’t too alarmed at first, but it never went away. Dr.
Frankel was very concerned and ordered an immediate biopsy.
Our biggest fear was confirmed…Zach’s cancer had come back again.
I was beside myself with grief…I knew we didn’t have many
options left. Dr. Frankel was so compassionate. His tough
demeaner faded…and you could see he really cared. That meant a
lot to me.
Zach’s case was referred to the "tumor board"…a group of doctors
who specialized in cancer care and putting together treatment
options. Dr. Frankel told us they wanted to remove Zach’s jaw
and start intensive chemo immediately. He talked them into giving
him 3 months to see if chemotherapy would even affect the tumor
before they removed Zach’s jaw. Zach had also been under the
care of Dr. Pinkston, an ear, nose, throat doctor. He was the
most patient man and would explain everything to Zach so he
could understand. Zach always loved seeing him. He would be the
one who would remove Zach’s jaw. The thought of this surgery was
frightening. I was glad I would have a couple of months to
prepare for it.
In the interim, we spent more time in the hospital than we did
out of the hospital. This chemo was the worst yet. His white
count would bottom out and he would get an infection around his
gastrostomy tube. The best analogy for this would be an earring.
Imagine how painful it is when your ear gets infected. He would
lay in bed and just cry. I would talk to Dr. Frankel, but he
felt it was more anxiety than real pain. I was nauseaous. How
could this be happening…again!!! One day, after a sleepless night
in the hospital, Dr. Frankel came in making his rounds. I
confronted him with Zach’s pain. We had a very heated debate.
I told him I did not believe Zach deserved to spend one minute
of his precious life in pain. He countered by telling me he
didn’t want to get into an adversarial position with me. I told
him to take care of Zach’s pain. He was worried that Zach would
get addicted to morphine. I told him at this point in the game,
I really didn’t care. Besides, studies show that you won’t get
addicted to morphine if there is real pain. He countered again
stating he felt it was Zach’s anxiety and not real pain. I was
furious. He thought I had gone over the edge. The next day he
came in with a social worker. I guess I must have scared him.
Zach’s gastrostomy tube was very swollen and was oozing blood.
He looked at me and said, "That does look painful." I could see
his remorse and I appreciated the fact he was able to say he was
wrong.
Zach’s surgery was scheduled for September 9, 1997. The plan was
to remove his mandible and replace it with a bone from his leg.
When I spoke with Dr. Pinkston the night before Zach's surgery,
I told him I was praying for him. He smiled and told me he
would be doing some serious praying too. After hearing that, I
felt such a peace. Zach told the doctor he wanted his teeth
back because the tooth fairy always brought him movies. The
nurses all chipped in and bought him some movies. I will never
forget that. I remember walking with him down to surgery and the
nurses wheeling him away on his bed. I watched as they navigated
him down the hall and he was looking back at me and smiled. I
wouldn’t see him again until 13 long hours later. When they
finally allowed me into PICU…he was still asleep but laying
there flat on his back without any clothes on; tubes everywhere.
He was so white, he didn’t look real. He was on a ventilator
hooked up to his tracheastomy. His head was wrapped up like a
mummy. It was all so intimidating, but I was just relieved to be
with him. We were told after surgery that they were unable to
get a clean resection. We asked what that meant…and none of the
doctors could look us in the face. It was apparent by their
response what that meant for Zach. I fell completely apart. I
eventually dismissed the treacherous invasion of my senses. I
could not imagine Zach dying.
I had really gotten into alternative medicine. Conventional
medicine had given up…but I couldn’t. I found a Christian
hospital in Mexico who specialized in treating cancer. We had a
benefit to raise money to go. One family, to whom I am eternally
grateful, gave us the majority of the money to go. They stood by
us and believed in us when everyone else had given up hope. We
spent a month in Mexico and Zach and Telie entertained the other
patients while we were there. Zach would skate on his IV pole up
and down the halls. Everybody loved him.
We returned home on December 19th. We walked in the door and my
husband had gotten the kids a Christmas tree and had it all ready
to decorate. They were so excited! It was so good to be home.
It became more and more evident that the treatment in Mexico had
been unsuccessful. We took him back to Dr. Frankel and he and
his colleague Dr. Thompson came up with a new regimen of chemo
that offered a little hope. Immediately, we noticed a difference.
But it didn’t last very long. In May Dr. Frankel informed us
that the chemo was not being effective. He told us of an
experimental case study and asked if we wanted to pursue
something like that. We felt in our hearts that it needed to be
Zachary’s decision. That night as Zach lay in bed working on
his puzzle book, my husband and I sat down beside him…one on
each side…and told him what the doctors had said. We told him we
could either pursue more chemotherapy, or we could simply turn it
over to God…that it was his choice. His little chin quivered and
tears welled up in his eyes and he looked at his Poppa and me,
stretched out his arms to us and said, "Let’s not worry about it,
let’s just have fun." The next few months were the hardest we
had ever been through. We watched Zachary slowly and painfully
deteriorate before our eyes. His pain would get worse and worse
and I would have to fight Dr. Frankel to increase his pain
medication. Finally, after many nights of staying up to push the
button that would give Zach an extra boost of morphine every 30
minutes…our pharmacy (who had become like family) suggested we
go to Hospice. I didn’t have the energy to fight with Dr. Frankel
about Zach’s pain anymore. The tumor that once looked like a
tiny pimple had now consumed the whole left side of Zach’s face.
It oozed with blood constantly. Other tumors throughout his body
became evident. But, throughout all his pain and suffering, Zach
never gave up…he never complained. He would raise his hands and
praise God. And that smile…that beautiful smile would melt my
heart.
I will never know exactly how Zach felt. All I know is how he
handled every treatment, test, infection, invasive procedure and
ultimately dying. His strength and maturity is a testimony to
his innermost character. I feel so privileged God chose me to be
Zachary’s mom. I will never understand why Zach had to die. The
pain of his absence is constant; tempered only by the hope I
have in Jesus that we will be reunited again.

 
There has been
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You are listening to "Fly" by Celine Dion!
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