Bigler Family Story

The Dominique Bigler Family

(THON 2016 Family Speaker)

Hi, we are the Dominique Bigler family. I’m Marsha, this is Gary, and we have two beautiful daughters, Dominique and Natasha. Well, Natasha is hanging out down at Burger King until family hour is over if anyone wants to see her, she said for me to let everyone know. And Dominique well she’s in Heaven, but I believe that she is right here with us because THON was the most important weekend of her life and she wouldn’t miss it for anything. Our family has been coming to THON and almost every THON event since 2009. You could usually find Dominique at each event next to her sister, laughing with Family Relations, her organization, and other families and students. She would usually be the first one here, the last one to leave, and stay all 46 hours with you. Standing for almost that whole time without ever complaining about her pain, but simply loving every minute. Over the six years that Dominique fought cancer, she wrote about her journey. My speech is going to be a little different than others because what I’m about to share was not written by me, but by Dominique herself. Today it will be her voice and words you will be hearing. Her friends, her heroes, her greatest inspiration to keep fighting came from the people she met here at THON, the hospitals, and various camps she attended. You may have seen some of her pins being worn around, with her picture that says, “I live for and because of THON”. It was a dream of Dominique’s to speak at THON, and while she didn’t get the chance while she was here, being able to share her story today helps bring that dream of hers to life.

So, this is for you Dominique…

Trampolines, Bicycles, and Cancer Treatments (written January 24, 2013 – age 19)

When I was thirteen years old, there was nothing I loved more than riding my bike, jumping on the trampoline, and just being outside. My two best friends, my sister, and I would spend hours and hours in the backyard playing games, wrestling, and talking about life like we had it all figured out. Unfortunately, my two greatest joys in life, bikes and jumping, would often cause me severe pain in my left hip. We would be jumping on the trampoline and suddenly I would collapse and scream in pain. The pain only lasted a few seconds and then I was fine, so I rarely mentioned it to my mom or dad.

On one beautiful sunny day, my dad and I went for a bicycle ride around our neighborhood; we were riding in the field behind the church when I jumped down off my bike and then started crying in pain. Again, this only lasted a few seconds but my dad was worried, so my mom made me an appointment at the local family doctor’s office. The doctor immediately wanted to do an MRI, during the MRI you have to lie perfectly still the entire time. Well, that didn’t work so well for me because my hip started hurting and I couldn’t keep still. The radiologist saw something he didn’t like, (he showed my mom the screen, it was a large mass), I was sent to Hershey, our local children’s hospital, to have another MRI the next day. That day I met Dr. Fox, the orthopedic surgeon. He didn’t like what he saw either because within a few days I was back again for a biopsy. I had the biopsy on the 30th of October 2008. I was a wildlife warrior that year for Halloween and little did I know that in a few days, I would have to become a cancer warrior.

The few days later came and I found myself traveling back to Hershey, but this time with the whole family in town. My mom, dad, sister, both sets of grandparents, and myself all crammed into a tiny waiting room. As we were sitting there, I couldn’t help but notice the pamphlets and flyers about childhood cancer and teen CANCER. I was horrified and knew exactly why I was there; it was the worst feeling in the entire world. A nurse then came and shuffled us all, except for my little sister Natasha, she stayed with the child life specialist and watched movies. The rest of us were crammed into a teeny, tiny, examining room. We were then joined by a scruffy looking doctor, a medical student, a child life specialist, and the head nurse. Dr. Freiberg was his name and he told me the most horrifying and momentous news of my entire life to this day. I had synovial sarcoma, a rare and difficult form of cancer. I was 13 years old and scared out of my mind, but there was no way I was going to let anyone know so I tried to be brave. It didn’t last long, as soon as I found out I had to have surgery to get a port placed; I kind of exploded with emotion. I mean, what in the world is a port anyway? I didn’t know. Everything and everyone were new and strange and a little bit scary. I was in a whole new world.

I was scared and confused and felt all alone. I soon found out that I was definitely not alone; there were lots of other kids with cancer too. At first, I hated being bald but I got used to it and it is actually a lot easier and convenient than having hair. They gave me too many rounds of chemo to count, but there were always fun things to do and people to play with in the hospital. I loved all my doctors, well most of them. Ha-ha. My radiologist was really cool; he gave me 25 treatments of radiation to shrink my tumor. Then I met my orthopedic surgeon, I didn’t like him so much at first, hahaha. He put me through a 14 ½ hour surgery. Now I have a titanium hip and femur, but he saved my leg and got rid of that nasty tumor. In the middle of all this craziness, my pediatric oncology doctor, (Dr. Freiberg), told me about the most amazing thing in the universe, THON. My first THON was in 2009 and I’ve gone to every one since. I met all my best friends at or through THON. Without it, I would not have had a reason to keep going. I live everyday so excited because I know that one weekend in February is worth having to take chemo pills every day and getting blood draws every week. Because THON is the most amazing and wonderful thing in the entire universe and beyond. I love it so much and I especially love all my THON family.

In the past almost 4 years I’ve relapsed 3 times, twice in my lungs and now behind my esophagus. I’ve had 3 lung surgeries; the last one they took out the lower lobe of my right lung. Now I’m doing some new kinds of chemo at St. Jude and its working really well. They shrunk my tumor to a third of its original size and it is currently stable and not growing. But they still don’t compare to Hershey, at least not on my rating scale! Well, that’s about it. Thanks so much for helping THON! Because that’s what I live for! ❤FTK

There were endless doctor’s visits, nurses bugging me, needle pokes and nasty medicine. I had too many rounds of chemo to count, 5 weeks of radiation, and then they decided to try to chop my leg off. Thank goodness I had such a wonderful orthopedic surgeon though; he saved my leg and my life. But it wasn’t over yet, I relapsed 3 times. Twice in my lungs, I’ve had 3 lung surgeries and the last was an inferior lobectomy. Then the most recent recurrence happened just last December, but luckily I got into a trial at St. Jude and now I am cancer free!

During all this madness, there doesn’t seem like there would be much time for gladness but oh there definitely was. You see, my main hospital is Penn State Milton S. Hershey Children’s Hospital and there is this organization that pays whatever the insurance won’t pay, for the kids with cancer there. It is called the Four Diamonds Fund and it was started in 1972 by a dad and mom who lost their son to leukemia that same year. His name was Christopher Millard, and he is my hero because without him I would not have been able to get the cancer treatments that saved my life and many other kids’ lives over the past 40 years.

I bet your wondering “how is this the gladness and fun she was supposed to be talking about?” Well, I am about to get to that part. I really love to be outside but most of the time I felt too sick to go out. So, when I did feel good, I went fishing and did anything to do with animals. I really didn’t have that much interaction with people other than immediate family and until my oncologist told me about the coolest thing on the planet Earth, THON.

It is THON, the largest student run Philanthropy in the world, and it is done by the students at Pennsylvania State University. Every year about 15,000 college students from PSU are involved in this amazing 46-hour long dance marathon, where there is no sitting or sleeping for the dancers and it is all For The Kids. I can’t even explain in words the love and commitment, friendship, hope, and inspiration that there is in this one building full of 15,000 college students, hundreds of kids and their families all there for one purpose. And there’s more, they have events all year round so the students, kids, and families can all get together to just be kids and have fun. But it’s much more than that. The emotional support and friendship that they gave me was the reason I kept going. Without all my newfound friends, I would not have a reason to fight. My two best friends abandoned me right before I was diagnosed and so I had no one, until I met THON. I had 15,000 new friends, not to say I knew all of them personally, but they were there for me and cared. I did meet several people that will forever be my best friends and I love them more than anything. Because of THON I live, and because I live, I THON so I can give back and help all of the other kids that are still fighting. I have met so many new and amazing people through my experience with cancer. All my best friends are Penn State students or graduates and I met them either at or through THON.

Cancer is a terrible thing and I really wish that it never existed, but I would not change what happened to me for the world. I have been blessed with cancer and I would never give that up.

December 11, 2012

I was 13 years old when I got sick and I got really close to my mom because she always stayed with me in the hospital. I never let her leave my sight, even to go down to the cafeteria or do laundry. She was always with me and helped me do everything.

My dad was another story. I feel like we did get closer but not in the same way. He wasn’t there all the time like my mom because I made him leave one time right after I had my first major surgery. I was in the hospital screaming my head off from the pain and my dad was standing there. I just stopped screaming and said, “Daddy go home, I make you sad.” Then I started screaming again. I don’t remember because of the chemo, but I do remember that it made my sister sad. I probably wasn’t the nicest to her during all that time, but she was nice to me. She’s my younger sister, so it must have been really scary to see me go through all that horrible stuff. We didn’t get to be normal anymore and had to grow up really fast.

December 2013

My name is Dominique Bigler and I have cancer. I was diagnosed with synovial sarcoma on November 2, 2008 when I was 13 years old. I had chemo, radiation, a partial hip and femur replacement with a softball sized tumor resection, and more chemo. Then in June 2009, I was N.E.D. (no evidence of disease) until on a routine CT scan in July 2010 where they found a small tumor in my right lung. It was treated with surgery and I was again N.E.D. So, when I went to MD Anderson in Houston, Texas they couldn’t do anything for me. Then in April of 2011, they found another tumor in my right lung and did a thoracotomy of the lung, tumor resection. But it turned out that they took out a piece of scar tissue and missed the tumor. So, in June they did a right inferior lobectomy, (they removed the whole lobe), to make sure they got the tumor that time. I was once again N.E.D. until December 2011, when they found a tumor behind my esophagus beside my heart. My doctor told me that I could just go home if I wanted to. I told him that I never, ever, give up! So, I went to St. Jude in January 2012 for a clinical trial. I was on 3 different types of chemos and had radiation too. I was flying to Memphis, TN every 3 weeks. Then in September 2012, the side effects of the chemo finally got to me and I could no longer take it. But the tumor was dead, so I was once again N.E.D. Until April of 2013, when they found a tumor in my left lung during a routine CT scan. It was removed and I was N.E.D. until July. I went for a checkup at St. Jude and they found another tumor behind my esophagus beside my heart. I was then put on a new chemo called Pazaponib, which I could get back at home.

So, I was now back at Hershey and taking chemo for a month until they took me off it because I got a large pneumothorax and had to have a chest tube placed. At the time they believed that it was caused from the chemo. So, I went to Memorial Sloan Kettering in NYC for a clinical trial with one kind of chemo. I had to travel back and forth every week to NYC. Then, after the 7th week there, I started having bad chest pains when I breathed. Sloan Kettering did an early CT scan to see what was wrong and they saw a bunch of fluid on my lung and 2 new tumors. One was right against my heart and the other was between my lung and esophagus. I’ve been in the hospital the past week and yesterday they inserted a semi-permanent drain tube in my chest to keep the fluid off my lung. While in the hospital, my oncologist came to me and asked me what I wanted to do if my treatments didn’t work. If I wanted to be in the hospital or at home. I told him that I would find another treatment. And that I would travel the world until I find a cure, and I will NEVER EVER give up no matter what he or anybody else says.

If I had a time machine and a chance to change it or make my cancer have not existed I wouldn’t.

March 29, 2014

Cancer. It’s a scary word for most. A child would hear the word and think nothing of it, as would many adults, that is, until you hear these sentences. “You have cancer,” or “Your child has cancer.” Suddenly you are thrown into the world of pediatric oncology. It’s a world filled with big words, sharp needles, endless scans and tests, strange people, debilitating medicines, and the sudden realization of mortality. Of course, no child should be subjected to such torture, but thousands are every day.

I was thrown into this ever-growing world, when I was diagnosed with synovial sarcoma, at the ripe old age of thirteen years. At the time, I had no idea what synovial sarcoma was, all I knew of cancer was that you get a Make-A-Wish, because people that get cancer, die. Thank God that I was wrong; I soon found out that cancer is not always a death sentence and there are many pediatric survivors that are now happy and healthy adults. The first nurse I ever had gave me a pin and this was written upon it, “Cancer is a word, not a sentence.” I have tried to live by this saying ever since and it’s not always easy, but nothing in life ever is.

I have cancer but cancer does not have me. Although it may seem that way at first, having cancer is not the end of the world. Yeah, it stinks but it’s not all bad. Life is what you make it and when life hands you lemons, make lemonade. I’m not saying to make cancer juice and I’m not saying it’s easy, but God only gives us what we can handle. It’s not about the cards we’re dealt, but about how we play them that counts. No matter how dark or bleak it may be, if you look for that one little shimmer of light or hope, the sun will shine through. There is a bright side to every situation if you know how to find it.

I didn’t always see the bright side though. Before I was diagnosed, I was terrified of everything, scared of life, scared of death, scared of the world. No matter what the situation, I would think of the worst possible outcome and believe that it would come true, it was like I was preprogrammed to be absolutely hopeless. Well, you can imagine what I must have been thinking when they told me I had cancer. I was positive that I was going to die.

Five and a half years later: I have relapsed five times, been treated at three different hospitals, had four lung surgeries, a partial hip and femur replacement, twenty-six-point-eight weeks of radiation, two ports, three life threatening pneumothoraxes, had seven different chemo therapies, had been told I was going to die two times, was in two experimental studies; one of which caused me to develop two, new, very dangerous tumors, and I have never been happier. Having cancer was and still is a blessing to my life. I always say, If I had a time machine or if I could somehow change the past and not have had cancer or have been diagnosed sooner….I wouldn’t do it. I would not change one thing that has happened to me.

I am who I am, and my life is the way it is because of cancer and I love it. Cancer has been a big influence on the direction of my life. Being exposed to THON, the world’s largest student run philanthropy and dance marathon; has encouraged me to apply to Penn State University. I believe that I would not have had the opportunity to attend college, had it not been for cancer. My diagnosis has also influenced my career choice; I have always been interested in animals, especially reptiles, but now I want to pursue a career in biomedical research and herpetology. I want to use reptiles to help people and by doing so, I can educate people on how these otherwise “unappealing” creatures could save their lives. Then the next time they see a snake in their back yard, they will think twice before running it over with the lawn mower or chopping its head off. My mission in life is to save lives, both human and animal, and to help anyone and anywhere there is a hand needed.

We go through life thinking about I, me, mine, about what I want, or I need, trying to make our life better. What we don’t realize is that it’s not about us, because the most amazing feeling in the world comes from helping others. I thought I was supposed to do what would make me happy but then realized that isn’t important anymore. When you go through an experience where you are helpless and must depend on someone else to take care of you or keep you alive, your perspective changes. If that person or those people dedicated their lives to helping others, then what are you doing worrying about yourself? It’s time to think about others for a change; and there will be change because you just might, save a life.

“What we do for ourselves dies with us. What we do for others and the world remains and is immortal.” –Albert Pike.

Cancer, it is now a known word in my vocabulary, and I use it in everyday conversations. My life has been changed by cancer and it is the best thing that has ever happened to me. It has given me amazing opportunities to help others and see the world in a new light. I am blessed to have been given this opportunity to help, support, and inspire other cancer patients and every person who needs it. To grasp every situation with positivity and enthusiasm, and put others needs before my own. That’s the kind of life I want to live and the kind of person I strive to be every day.

Well, that’s all of her own story, but she went on to raise money for the Four Diamonds and Camp Can Do. She sold homemade peanut butter eggs, made bracelets, hot loop headbands, sold T-shirts, had a hair donation/head shaving event, sold Scentsy candles, and she and her sister bought toys for the kids at the hospital and started the toy table for the Hope Express Kickoff party, that has been continued in her memory. She did all these things while she was fighting for her life.

She did get to go to camp in Montana in June 2014. She couldn’t fly because of all her lung issues, so she and her Dad drove across the country to Camp-Mak-A-Dream to see her friends there, not knowing it would be the last time.

When she came back, she was not doing well. The fluid in her lungs had spread and was more than likely filled with cancer cells too. Her heart was pushed to the right side of her chest and she was having problems breathing. We ended up in the hospital where she was put on oxygen; we were home maybe 4 days but had to go back in the hospital because she was getting worse. We spent most of July in the hospital, during her time there she planned a surprise Sweet 16 birthday party for her sister, Natasha. Dominique didn’t want it to be at the hospital but was unable to leave. On the day of the party, I drove 4 and ½ hours to a camp in Maryland to pick up Natasha. It’s a cancer camp for siblings of cancer patients and she was a counselor in training. When I picked up Natasha, she was so happy, but I had to tell her that her sister was back in the hospital. When we arrived at the hospital, they had decorated the Children’s hospital Café for Natasha’s party. Some of her friends and family came to an awesome party with lots of cake, ice cream, and other party food. Dominique wanted it to be special for her sister. She got Natasha the largest stuffed unicorn she could find.

Later that week, on Thursday Dominique and I went to Fox Chase Cancer Hospital in Philadelphia. She was transported by ambulance because she needed oxygen and it was a long trip for her being inpatient at Hershey still. She signed consent for a new trial that was working well for people with her cancer in Europe. We stopped at McDonalds on our way home. The nice drivers took her there because we were all starving. She ate some of her food but not much.

Later that night she started having trouble breathing so they increased her oxygen. I started noticing her breathing had a strange sound, the death rattle, I thought, but no not my child she’s going to beat this. I was not giving up hope. In the morning, Dr. Neely and his crew came in and he sat down next to me. He said, “This is it, she’s dying, and she’s going to have to go upstairs to PICU because she needs more oxygen and probably will end up on intubated soon.” He kept talking but I stopped listening. I ran out of the room, so she wouldn’t see me cry, I never cried in front of her. I ran into the hallway, I think the playroom, and was crying really loud. I was angry and sad all at the same time. How could this happen? She fought so hard and went through countless surgeries and was so happy with life, she had dreams, plans to cure cancer. Then another mom, Julie Hess, came to me and hugged me, and the child life ladies, Julie and Diane, took me into a conference room. I was crying very hard until someone came into tell me that they called code blue, there were lots of people in Dominique’s room, and that I probably don’t want to go in there. I stopped crying, ran and pushed my way through I think every doctor and nurse in the hospital in her room. I went to her and she was awake, they were helping her breathe with one of those hand pump things. She saw me and said, “Mommy what’s going on?” and I said, “It’s ok you just needed a little help breathing.” We were then transferred upstairs to PICU and spent Friday, Saturday, and Sunday with lots of family and friends visiting all weekend. During one moment we had alone, she said to me,” Mommy I’m scared.” And I said, “Me too baby but I’m not leaving you.” On Sunday night our dear friend Joan (Bobby the Newfoundland’s mom) stayed with me and Dominique that night, so I was not alone if something happened. Her breathing continued to get worse, she was put on forced oxygen and a CPAP machine to help her breathe. The next step was to be intubated, (put on a breathing machine). The doctor said if they intubated, she would not be able to talk and it would probably kill her but temporarily keep her alive. Early Monday morning around 7am the doctor was going to intubate her. Dominique said she changed her mind and didn’t want that. She said, “Mommy, you have to let me go,” and I said, “Go where?” She said,” You have to let me die,” I said, “No, I promised I would never ever give up on you.” She said, “But Mommy you have to.” Then at that moment I knew she wanted to go, but I said, “What about your daddy and sister?” She said she couldn’t wait but she did. She waited an hour for her sister and dad to get to the hospital from our house. She talked to us and we said it was ok for her to go. She told us she loved us, we told her we loved her, we gave her kisses and hugs, and then she took her last breath. She passed away at approximately 8:27 am on Monday August 4, 2014, just 6 days after her sister’s surprise party and she never stopped communication with us. She was a true fighter and my biggest hero.

Thank you for all you did for Dominique and continue to do for the Kids! Let’s keep dancing until there is a cure and no other parent has to hear the words, “Your child has cancer.” We Love you Dominique. We Are…..