Saturday October 25, 2014   
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Meet Mona Leingang

 

Mona and Gary picture VABC mona and Gary picture VABC 2

Mona’s bio about Gary:
Gary and I were married for 33 ½ years and we dated 2 years before marrying.  It’s hard to believe there’s a time in my life when I didn’t know Gary.  I think my life really began when I met him.  A friend said she liked Gary from the day she met him because he was the guy who made me smile.

We met in Sociology class at the University of New Orleans. He sat right behind me on the first day of class clicking his pen. When I let him know it was bothering me, he clicked it more.  Then in 2 weeks we were dating, and 2 years later we were married.  Gary’s teasing went on for all our life together. One way he teased was that almost every night when I got up for water or the bathroom, when I returned to bed, Gary had hidden my pillow.  Then as he got sicker, the hiding stopped.  About a month before he died, when I came into the room, my pillow was missing.  I was so happy, my Gary was back.  It would be the last time.

At UNO, Gary carved a heart with my name in it, in a tree.

We had the best wedding I’ve ever been to.  We had a lot of guitar music, Beatles’ songs, and Gary and I even sang part of one of the songs with the singers.   And in the same way, I think we had the best funeral I’ve been to, and many people told us they felt the same.  We had guitar music like at our wedding, and the kids and I closed his casket, as a last moment of taking care of him.  It had not been planned, but as we stood by him getting ready to sit down, one of the kids asked me if we could close the casket.  I went over to ask if we could, and so we did.    That felt very meaningful to us all.  We were the ones who would take care of him as long as we could.

corrected family picture wedding

Gary and I worked on religious teen retreats as retreat counselors when we were dating and for a few years after marrying.  I guess until the babies started coming.  I thought I knew Gary, but I didn’t really know him, what  he was made of, until we had children – our David, our Janet, and our Paul.  Gary was made to be a dad.  He was so in love with his children. When they were babies, he took off time from teaching to stay home with them. Friends teased him, but he didn’t care. I’d come home to find him crawling on the floor on his stomach so he could be at “eye level” so they could look right at him. They played peek-a-boo around the sofa, and down the hall in and out of bedrooms.  Or he might be lying on the sofa with the baby asleep on his chest. He couldn’t wait to tell me all about their day! He and I never felt that there were  “mom things” or “dad things”, just parent things.  (Except of course for mopping -me, or cutting grass -him.)  Gary did homework, housework, sports, chess, speech , whatever he could to just be with his kids.  He even started a soccer league and as one neighbor said, he brought all the parents into their children’s lives.

Gary had to take care of me a lot during those 33 ½ years.  I had chronic fatigue and was prescribed 3 shots a day.  Gary learned how to give me those shots, and was very good at it.  Of course he was good at it.  He was good at most things he did.  He learned how to cross stitch, and the backs of his work was almost as perfect as the fronts, a goal of most good stitchers.  He made a cross stitch picture for each baby when they were born, made one for me when I was pregnant, and made them as gifts to family and friends.   Again his friends teased him, but he didn’t care.   We wanted a backyard play structure for the kids, so Gary drew his own plans, determined the supplies he’d need, length of boards, etc, and built an amazing, super sturdy structure for climbing and swinging,  with a top deck for sitting in.  He added a room to our house, and every ceiling fan was installed by him.

Gary took care of me when I was on chemo.  I had a mastectomy 6 weeks after Gary had his first brain surgery, the one when he got the diagnosis of GBM.  I was more ill from my chemo than he was from his, so he did what needed to be done.  He gladly cared for me.  He cried one day because he said I never got to feel about my cancer and mastectomy like other women do,that I had to just think about his cancer.  I hugged him and said I wished his could be removed completely like mine, that he would get well like I would.

I can’t talk about Gary without talking about Disney World.  Gary loved Disney World.  It was easy for Gary to get excited about playing and riding roller coasters and the fantasy of Disney World, (DW).  We took many family trips there. Gary even went to DW by himself after he was diagnosed.  He had a good time and I think he spent time too thinking about his life coming to an

end.  Gary had a childishness that made him fun to be around.  He laughed out loud, hugged everyone, and was just comfortable being Gary.  He’d sing with the Tiki Birds, (tweet tweet tweet), a favorite attraction of his.  Did I mention yet, that he could be stubborn when he “knew he was right,” he could be controlling, and was also human?  No he wasn’t perfect, and I’d give anything to let him win an argument again.  Or leave his shoes in the middle of the den, or clothes on the floor in the bedroom, etc.

Gary Regina

Back to DW. That’s where we went on our honeymoon.  We’ve also been there with his sister, with friends, and many times as a family.  So, it’s not really surprising that Gary hallucinated Disney.  His very first seizure, as it began, included him seeing Mickey Mouse ears on the rug and on the TV.  After the 2nd brain surgery, he asked if he could go and ride the  rides.  My Gar, even his hallucinations were sweet.  His dream was for the 2 of us to work there after retiring, and the kids and grandkids would come.  We’d get to show them all around!

His favorite song was the song from 50 First dates, What a Wonderful World/ Somewhere Over the Rainbow mix.  He’d play it over and over.  We played it for him during his last hour as we surrounded him. His favorite show was The Big Bang Theory.

Gary was spiritual and religious but not often very vocal about it.  He’d say the rosary at night, even had a special knotted string kind that would keep your place if you fell asleep, which he did.  When he couldn’t say it himself anymore, I said it for him, until he just couldn’t really listen or follow and just wanted to sleep.

I loved all our vacations.  We didn’t have much money, but building those memories was a priority we had.  One year all we could do was something small, using whatever money, coins, we had saved over the year in a big container.  In the first days of summer vacation, (kids were off from school and we were too since we were both teachers), we dumped out all the change on the den floor.  Everyone made piles of dollars, and then we counted it.  We had enough for a day at a putt putt course, and bumper boats, other games.  It was a good vacation-at-home day!  We had fun.  We also went to the beach sometimes. Gary loved the beach.  We could take day trips to the coast about 45 minutes away, play all day, maybe have friends join us, and then come right back home.  I was afraid of roller coasters, water slides, and swimming.  It’s a good thing they had Gary.  He loved it all and they loved it too.

Gary always wanted everyone to be comfortable around him after his diagnosis.  He’d bring it up first- “Can you believe I’m going to die?  I don’t look like it.”  When asked how he was doing, he would say, “I’m still here!”  And after the 14 month prognosis date passed, “I’m past my expiration date, so it’s all good.”  He was grateful for the time as we all were, for spending time and talking.  But sometimes, he was miserable from chemo.  Too much diarrhea from one chemo.  And he’d get depressed of course, but didn’t want to stay depressed.  Wasn’t angry because, “I don’t have time to be angry.  And who would I be angry at.”  He wasn’t angry at God.  Neither of us felt that God gave him this, or that it was God’s will.  We thought that this bad  thing happened and God would carry us through it.  He spent a lot of time on the computer looking for some cure that the doctors might have missed.  He wanted to be alive for all the things that were ahead with me and the kids.  He didn’t want to die but he accepted it and was ready at the end.

He picked out his funeral home, his casket, where the funeral mass would be, and his pallbearers.  He started hospice at home, with the hospice he picked out and even went on his own to talk to.  But we moved him to a hospice in Baton Rouge where the kids were so he could see them every day, as much as possible.  He needed us to all be with him and the kids needed him close too.

The nurse told us when he had about an hour to live.  He was in a coma that whole day.  We surrounded him and put on his favorite song.  I held his hand.  We talked to him and touched him as his breathing changed.  Then at about an hour, at 3:43 in the afternoon, he lifted his head and shoulder off the bed turning toward me on his right, looked right into my eyes, and let out his last breath.  Janet said that I was his soul mate, so he looked at me as his soul left his body.  I believe somehow he knew it was his last breath and he looked at me to say “I love you.”



David Leingang son of Mona and Gary

When I knew my dad was going to die, all I could think of was how much  I was going to miss him. Over the last 10 years he had become one of my best friends. I was always so excited to talk to him and tell him what was going on in my life. I realized more and more as I was growing up, the kind of person he was.  I hadn’t realized everything he did for me, like coaching and being so involved in my life. But I realized that he was the type of dad that was always there, and wanted nothing more than to be with his kids. I hope one day to be the kind of father that he was. I also hope to be the type of husband and friend was.

Family hiking

I miss playing golf with him, but I am so thankful that I had gotten to spend so much time with him.  Dad and I played golf the day before I married Regina. I will always remember that he made the craziest par on a par three. One thing I wanted my dad to know was that he was the most amazing dad. If I can be half the dad my dad was, I will be proud. When he had his first seizure and we thought it was a stroke, I remember thinking that he was going to die. But the second seizure, that was one that really scared me.  Dad surpassed all expectations and fought the most impressive fight against cancer that we could have hoped for. We got to do a lot of great things after dad was diagnosed. The whole family went to Vegas and that was lots of fun. But I am most glad that dad got to the Niagara Falls. I have always known my dad had great friends and family. But in July 2008, I realized just how great they were. Dad always wanted the Niagara Falls but had never been. So we decided to send mom and dad there for their anniversary. When we handed them the tickets, the look on their faces was amazing. Our whole family and friends came together to pay for that trip for them.  We collected enough money so that they didn’t even need money for food or attractions.

I was a supervisor of student workers on the college campus that I was attending. One day one of the student workers said to me that I was the type of person and boss that he aspires to be. I took that as a compliment of dad because I modeled my life after him.  I’m the kind of person I am because of him. I aspire to be like him. I love and miss my dad so much but I know he is always with me.


Regina Leingang married to Mona’s and Gary’s son David

Due to Mr. Gary being taken too soon, he had only officially been my dad, (Father-in-Law) for about four years. In those four years we experienced quite a few highs and lows. Looking back on how he enriched my life, I almost cannot put it into words. First I’m so grateful for him creating the most wonderful man I have ever met, who I am so blessed to have as my loving husband. I know that I have Mr. Gary and Mrs. Mona to thank for raising David to be the man he is. When I think about everyone he has had a hand in raising, including myself, it is a true testament to the person and father he was. Reflecting on the last few years with the Mr. Gary, I recall many fond memories of our time together. Like when we went to New York and we stood in line together for hours waiting for “cheap” tickets to see the Little Shop of Horrors musical on Broadway, and ended up sitting across from Ray Romano.  I also remember the amazing toast he gave at our rehearsal dinner. We were very fortunate to share many wonderful memories together as a family.  We had our trip to Las Vegas and Disney World which was Mr. Gary’s favorite place on earth. We like to say that he is in heaven constantly riding Splash Mountain and listening to the Tiki birds. We were also very blessed to be able to organize a trip for Mr. Gary and Mrs. Mona to Niagara Falls.  It was so incredible how all the family and friends came together and gave so much to make this dream trip a reality for them.

Since day one of meeting me, Mr. Gary accepted and embraced me and I am so thankful for that. I will never understand why God let him be my dad for such a short time, but the love and kindness he showed me will last a lifetime.

I am sorry that he didn’t get the opportunity to be a grandfather.  God knows, he would have been the best!  I know that David will be the most amazing father because of Mr. Gary.

I love him more than words can say, and I am thankful for every moment we experienced together.


Paul Leingang Mona and Gary’s Son

This is a story not about my dad, Gary. If you read my family’s stories you will learn what an amazing person he was, and what a terrible loss the world endured when he died. This is a story about how cancer is a family disease.

But first, a little about my father. My dad was a lover. He loved his children more than anything else in this world. My mom has told stories of getting home from work to find that my dad had left work early and pulled my siblings and me out of school/day care. Why? Just so he could spend the day and play with us. He has coached more sports teams than any man alive. Only so he could as involved as possible in our lives. In middle school, I competed in Speech and Debate; however, the high school I went to did not have a speech and debate team. So what does my dad do? He starts one. He did any and everything he could to make sure we could do whatever our hearts desired. And he did any and everything to be in our lives.

Nothing can prepare you for what it’s like to see your father being carted down a hallway, unconscious, with tubes coming out of his mouth. I wanted to throw myself at him. Jump on top and scream for him to wake up. I needed him to wake up so I could tell him that I loved him. “Just one more time before he dies,” I thought. I don’t know who held me back, but I think they knew what I was thinking. They too were probably thinking the same thing. My aunt, his sister, and her family joined us along with some family friends in the waiting room the next day. We learned that tonight, my dad would survive with only minor, temporary cognitive issues.

We heard different reasons for what was behind my dad’s health issues: brain swelling, meningitis, his heart was throwing clots to his brain, more reasons than I can remember. Finally, the culprit was found: a brain tumor. After a battery of tests, the doctors assured us that the tumor was not cancerous. They were certain that with a steroid regiment to keep swelling down and routine scans, my dad would live a long happy life. I remember hearing this and taking a deep breath, looking up to the sky, and whispering thank you. After so many months of uncertainty, I finally knew that everything would be fine.

David dad

Unfortunately, after one of my dad’s routine scans, we got a call saying that something had changed and he needed to be in surgery right away to remove the tumor. To this day, I still don’t know what they meant by “changed.” It didn’t seem to matter, because what it really meant was cancer. They told us about the different types of cancer it could be. Some had survival rates of 10+ years, others less than 5 years. There was one with a survival rate of 12 months, but they told us it was very unlikely he had this kind of cancer.

He went in to surgery which lasted for hours. My family took up the entire waiting room. Cousins, aunts, uncles, friends, there were more people than we could count. We passed the time by playing games, telling stories about dad, and laughing. So much laughing. We were a family trying to be strong. It felt as though I had been injected with hope. I was so optimistic that everything was going to work out this time. This time, we would get a definitive answer; and it would be the answer we wanted.

The surgeon came out and called my mom over to speak to her alone. My brother, sister, and I held hands as we stood staring at my mom’s face. We were trying to read anything, get any sort of hint as to what the surgeon was saying. But she wasn’t giving anything away. She just stared at him blankly nodding. Then she broke. Tears came pouring out, and we heard a hysterical cry that I had never heard come from her before. My brother and I rushed over. She looked up at us, and quietly said between sobs, “It’s the bad one.”

I don’t fully understand my memory of the next few minutes. Suddenly I found myself siting in a chair, staring off across the room. I don’t remember thinking anything. I didn’t feel sad because I didn’t feel. Finding out my dad had about one year to live was too much to handle, and I went catatonic. Someone placed a hand on my shoulder. Someone told me it would be okay. But I was completely unresponsive to everything.

The next few months were filled with chemo, radiation, scans, and another surgery to remove tumor growth. He was, for the most part, fine for about a year. His memory began to fade, along with his motor skills. And then, about 16 months after his diagnosis, I decided it was time to take a semester off from college and move home. My dad had deteriorated so much, that my mom needed help to care for him. This was to be my role for the next 4 months until his death: hospice nurse for my dying father.

Whenever I think of a 54 year old man dying of brain cancer, I think of an adult nurse caring for him. But, unfortunately, this is not always the case. Many times it is those who love the person, who must watch the cancer take everything from them. Sometimes a 19 year old child is forced to grow up far too fast. I did things during my father’s death that no child should have to do. I had to be a rock for my mom, who was finally beginning to break down under the weight of her husband’s death. I was, of course, more than willing to care for him. But I should not have had to. No one should have to.

family birthday

I will describe to you a specific day, which I remember very vividly, to show how cancer forced me to become an adult very quickly. My brain has shut out many of my memories of those four months. I think if I had been fully aware of the situation at the time, I would not have been able to do the things that needed to be done. But there are some moments so painful and so terrifying that I was jolted back in to reality. This one day encompasses what it was like for the 19-year old me to become an adult in 4 months.

On my dad’s last trip to MD Anderson to see his neuro-oncologist, my dad was not fully aware of what was happening anymore. My mom and I drove to Houston while my dad sat in the back staring blankly out of the window. At his evaluation, I watch as the doctor instructed him to raise his right arm while he lifted his left. The doctor told him to kick out his left leg while he turned his head. I watched my dad and realized that we would never be coming back to the hospital again. I realized that my dad would be dead soon. I asked questions about what it would be like at the end. My mom, the doctors, and I talked about what the next few weeks would bring. We talked about his death in front of him. And he was completely unaware.

We left the doctor’s office and went to the food court. My mom and I made small talk while my dad stared blankly at his food. Suddenly, he said “I have to go to the bathroom.” There was so much panic and fear in his voice, that I knew this was an emergency. I told my mom we would be right back, and I wheeled him away from the table. He kept saying, over and over again, “I have to go to the bathroom. I have to go now.” I rushed as quickly as I could, but then I heard it. I heard him defecating in his pants. He was no longer repeating that he needed the bathroom.

I wheeled him in to a stall and he said to me, “I got it.” Trying to let my dad hang on to some of his decency I left the stall and closed the doors. I stood in silence, waiting. He wasn’t saying anything, but I could hear him struggling. I opened the stall door, and what I saw broke my heart. I saw loose stool covering the inside of his underwear. “I got it,” he said sternly as he tried to reach behind himself with toilet paper. His hand was smeared with stool, and his arm so shaky and weak, that I knew he had tried once already. I quietly whispered, “Dad, let me help.” “No,” he replied. “I got it.” I walked up to him, and stopped his hand. “Dad, you have to let me help.” He said nothing, but he dropped his arm and handed me the sheet of toilet paper.

The defeated look in his eyes crushed me. I knew that at this moment, my dad was aware. He was aware he was dying. He was aware that cancer had taken everything from him. And he was aware that his youngest son was about to wipe him after he defecated in his pants. I wanted to scream. I wanted to punch a wall. I wanted to curse cancer for taking my father from me too early. But I couldn’t. I had to be strong for my dad. I had to show him that I would always take care of him. I had to pretend as if I was okay. So all I said was, very calmly, “Dad, I need you to lean forward.”

And he did. He leaned forward while I cleaned. We had to take breaks because leaning forward was a lot of work for him. So we would sit in silence until he was able to lean again. I don’t remember anything after that. The next thing I know, my mom and I are showering him back in our hotel room. I left the hotel room and went to the bar. My hands were shaky for a while after leaving that bathroom.

The next day, we got ready to leave and my dad was freezing cold (the tumor location threw many of his senses “out-of-whack”). We bundled him up in the back seat and set off home. My mom and I didn’t really say much to each other on the drive. The reality of that trip was too much for us to handle. And it still wasn’t over. “I have to pee,” we heard my dad say from the back seat. We pulled in to a gas station, but it took us a while to get him out of the car because he was so cold. I held him up from behind while he hung on to his walker, and the three of us walked in to the gas station. Everyone’s heads turn as they stared at my dad shivering and shuffling to the bathroom.

This was too much for my mom, and she began to sob. Weeping uncontrollably in the middle of the store, she walked along side. I felt at that moment that I was no longer supporting my dad. It was my mom that I was carrying. Soon my dad would be completely incapacitated and it would be her that needed me the most. I took him to the bathroom where he was unable to pee. We left the gas station and headed home.

That 24 hour period is but a taste of what it was like during that time. Over the next few weeks, I would continue to fulfill my role. I restrained him while a urinary catheter was inserted. I administered sedatives during seizures. I helped give sponge baths. I helped my father die.

I have since had to seek psychiatric help for PTSD from the duties I performed during that time. I used to get woken up in the night with flashes of events such as those I just described. After long and intensive work, I have made my peace with the events that transpired over that time. I have come to be grateful for the ability to ease my father’s passing. And I am now a better person for it. I’ve learned not to take life for granted. This time that we have is precious and I will treasure every moment.

I hope that this story will inspire you as it did me. Brain cancer is a terrible, terrible disease. I used to not share these stories because they were too painful. However, on the 2 year anniversary of my dad’s death I went to funeral for someone who had died of brain cancer. I ended up speaking to the deceased’s daughter for a very long time, swapping stories. She had come in to the very same role as I at the age of 22. It was then that I learned we are not alone. People all over are going through those exact same experiences. And we should not be silent anymore. These stories need to be shared so people can see what brain cancer truly does to those we love. And that it needs to be eradicated.


 

Janet Leingang Ramke – Daughter of Mona and Gary

I am so proud that I was my dad’s daughter. He was a kind and gentle man who loved his family with all his heart. I saw the way he treated Mom and I hoped one day to have a husband who loved me just as much.  And I do now; I’m married to Steve. I know my dad would love him, too.  I was talking to a friend one day about soul mates and I told her that I know my parents were soul mates. I know that there could not have been a more perfect match for either of them. He loved Mom with all his heart.   He was always there for us when we were growing up.  Anything we wanted to do, he supported us.  When I wanted to be on the speech team in Middle School, he not only encouraged me, he became the coach.  No other parent did that.  He never missed a play, a track meet, a speech tournament, or whatever we were involved with. He let us make our mistakes, but was there when we needed him.

My dad loved me unconditionally, and I always knew it.

I wanted so much for my dad to be here when I got married.  I wanted him to walk me down the aisle and tell me how beautiful I was. I wanted him to meet my children.  I didn’t want them to grow up not knowing their wonderful grandfather.  I wanted Dad to be here for every step of my life.

I do know he’s here though.  I’m like him in many ways.  I’m a teacher like he was. I look like him.  He’s a part of who I am.  And I see him in my brothers too. My brothers wear shorts all year long like he did. They walked me down the aisle at my wedding in my dad’s place.  But I wish he could still actually be here.

I took a semester off from college to spend with him before he died, and I am so grateful for that time. I got to know him better than I ever did. Dad was so much fun to be around because he had a childlike spirit.  No matter what we were doing, even watching TV, Dad made it fun.  It was so easy to keep thinking he was healthy even after the cancer because he was so full of life. Many people said they admired how he never lost that spirit.  Through it all, he was so brave.  He never turned away from God, he turned to God.  He handled his cancer so well.

I’m grateful, too, that he included us all in the decisions and never hid anything from us.  I’m sure sometimes he was tempted to not tell us the whole truth because it would upset us.  But he knew we could handle it.  He raised us to be strong.

I love Dad with all my heart, and always will.

 

 

 

 

 

 
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