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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 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.

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