Ever since Austin was born I have had a terrible feeling that something bad was going to happen to him. I could not shake that eerie feeling and it frightened me. At 3 weeks old, Austin had emergency surgery for mid-gut volvulus. It was scary but he did great. But that eerie feeling never left. I would wake up in the middle of the night to check on him. That nagging thought was always in the back of my mind.
Summer 2005 – Life was good. Austin was potty trained and was sleeping in his own bed through the night. Sean (6) and Austin (3) were healthy. They were happy boys who approached the world with love and curiosity. Wyatt and I were done with the baby stage and it was getting easier in some aspects. The boys played well with each other and they could entertain themselves and they didn’t need us for every little thing. We enjoyed a fun week at the beach in Tampa, FL. We truly had no complaints.
August 3rd – Austin began throwing up and continued to throw up. After several visits to the pediatrician and radiologist we had ruled out stomach virus, reflux, intestinal problems, gall bladder issues and anything that might have been affected by the mid-gut volvulus surgery.
August 19th – I was telling a friend about what had been going on and I told him that if this was someone else’s story (and if you could be emotionally detached) it would sound like cancer. It was not normal to be throwing up for 3 weeks. But how do you say that out loud about your own child?
August 22nd – That afternoon Austin asked me, “Why is the planet tipping?” That’s when I knew that something was seriously wrong. After talking to the pediatrician, my husband and I took Austin to the ER. In the ER they performed a CAT scan on his brain and that’s when we got the news. The ER doctor told us, “There is a mass at the back of his head but we are not sure if it is an artifact or truly a mass. There needs to be a follow-up MRI with a neurosurgeon consultation. We don’t have a pediatric neurosurgeon so I would recommend you go to Children’s Medical Center in Dallas. There is definitely fluid on the brain and without an MRI we cannot tell how much pressure, so we cannot dismiss you. Austin will need to be transported to Dallas with EMT supervision.” Wyatt and I consented, so the doctor went to work out the details of the transfer. We looked at each other in shock. This could not be. Our baby could not have a brain tumor. There was no family history. These thoughts were racing through my mind and all I wanted were answers….someone to tell me with 100% certainty that my baby boy was going to be fine, that this was a terrible mistake and a very scary dream, and soon I would wake up and life would be back to normal. But instantly I knew that this was for real, this is what the scary feeling was about all along. The results were going to say brain tumor. But what I did not know was how it was all going to play out. Was Austin going to die, was he going to live but without any quality of life? How were we going to explain this to him and to Sean? How do you make a three year old understand that yesterday you could walk and play but today you can’t and it is just bad luck? What was this going to mean for Sean? Would this deprive a six year old of a carefree childhood? Would it make him grow up overnight? Would he come out of this calloused or compassionate? How do you accept this fate for your child? What is a brain tumor? How could it be so common if I did not know anyone with a brain tumor? Is the neurosurgeon a good one? Why is this happening to my family? Will I have to quit my job? Will Austin be in pain? Will we make it as a family? Is my baby going to live or die…I need to know. WHO can I talk to about this? WHO will understand my fears? And that is when Nancy from the OKBTF came into my life.
Dylan is a four time cancer survivor. He was first diagnosed in 2004 when he was fifteen years old with a malignant germinoma in his brain. Since then he has fought three more battles, going through weeks of radiation, over a dozen rounds of chemo, and a stem cell transplant. He has recently been declared in remission again.
Now 20 years old, Dylan has completed his freshman year at OU, but had to miss this year due to treatment. He plans on pursuing a degree in mechanical engineering when he returns next spring.
Having cancer has given him a new perspective on things that many might take for granted. He values every day, and tries to take advantage of any opportunity presented to him. He enjoys simple things like hanging with friends, listening to music, and spending time with his family. He has fun harassing his 15 year old brother. Dylan says his mom has been there every step of the way, and his dad and stepdad have done hours and hours of research about his specific kind of cancer. They are all very important to him.
I was diagnosed with Glioblastoma Multiforme Stage IV on October 28, 2008. At the time I was 32 years old. I did 10 weeks of radiation along with infusion chemo. Right now I am going through oral chemo. I am on my second month of twelve treatments.
Coming across the Oklahoma Brain Tumor Foundation has been a blessing, along with all the people at OU Medical Center who have spent their time and effort to study and learn more about all the tumors that have impacted our lives in every way.
I am 52 years old and was diagnosed with cancer in April 2004 after they removed a tumor from my brain. My husband had taken me to St. Anthony’s emergency room one night after he thought I was having a stroke and the wonderful physician noticed that the nerve behind my right eye was swollen. The doctor asked my husband if he could run a CT scan, Henry allowed it and they found a cyst the size of a racquetball growing behind my eye. Early the next morning Dr. Gumerlock drained the cyst and made immediate plans to remove the growth. I spent 4 days in the hospital, went home for the weekend and came back for my surgery. I did great with the operation and my doctor was wonderful!! It took me a long time to comprehend that the cyst was cancer and a very bad one, GBM.
I had many friends and family and two church congregations praying for my health, and my husband stayed at my bedside 24 – 7. I made all the decisions about radiation and chemotherapy and lived my life as usual. I enrolled at OSU OKC and went back to school after being out for 30 something years. Going through radiation, taking chemotherapy and college Plus my dad had heart surgery during the same time and my mom isn’t well. I didn’t tell them that I had cancer, they had already lost a son to cancer and neither of them was in too good of health so I waited until I was about a year out to talk to them.
This past April I celebrated three years in remission. My MRI scans haven’t shown anything growing after they removed the tumor. I’ve had ups and downs, the cure seemed worse than the disease. I was very lucky to have cancer when I did because a new drug Temadar was just released. The radiation wasn’t much better with my fear of closed places, but with medication and the techs we made it through 34 sessions.
I‘ve done really well with my journey and some might think I am a little flippant about my cancer but when you live with it you become less afraid. After all it’s true “Laughter is the only medicine” and I’ve learned to laugh.
My name is Angel. I am a 34 year old single mother of two of the greatest kids on Earth.
In 2005 I was visiting a friend in Georgia when I awoke to paramedics in the room where I was sleeping. I had a grand mal seizure in my sleep for first time that I was aware of. A golf ball size tumor was revealed in my frontal/temporal lope that night.
Upon returning to Oklahoma, a craniotomy was performed for biopsy purposes. Because of the location of the tumor (around my middle cerebral artery) only a very small portion of the tumor was removed and the actual type of tumor could not be determined. After seeing 5 different doctors in Oklahoma, no one could decide the best course of action and I was told due the location of the tumor further surgery would most likely leave me a vegetable.
I then went to MD Anderson in Houston, TX where I was urged to have surgery to attempt to remove the tumor. After three months of consideration and prayer I agreed to the 10 hour risky surgery. My doctors told me they felt they would be able to get about 80% of the tumor out. After surgery, the doctors told my family they were not able to remove the entire tumor, but did better than expected. Three days after surgery, the MRI showed no signs of a tumor. I was clear! It was determined that the tumor was a grade 2 Astrocytoma.
The last two years I continued to go back for regular check ups. At my first three month check up a small spot was spotted on my MRI, a doctor felt it was scar tissue from the surgery. Last March I began to have focal seizures again and my MRI showed signs of the tumor coming back. I started chemotherapy in July. I believe will all my heart that I will be OK and that as God has promised I will see my children’s children for it is his will we all be well!
— Angel Looney
On May 30, 2008, my mommy and daddy were told that I had a mass in my brain. The next week we found out my tumor was between the size of a ping pong ball and a golf ball. My parents were worried about my vision since the tumor was growing off my optic nerves but the neurosurgeon said she would do her best to save my vision. The surgery was around 8 hours, it was a success; what was left was about a section that was one inches by two inches. I was in the PICU for two days and in a regular room for two days. In September, I went to a brain tumor clinic and the tumor had started to fill in the hollowed out section. We began the chemo a month before my 5th birthday. I have had chemo almost every week since then, we started in February going to four weeks on and two weeks off.
I had to have an infuse-port put in because my veins are so tiny. My vision has been monitored by the Dean McGee Eye Institute by a different doctor. My left eye does turn in some and I have a good deal of problems with my peripheral vision. My mommy says I am small for my age, I weigh 29 pounds and I am 38 inches tall. My 16 month old sister, Bridget, is almost as big as me.
As of today, my tumor is stable it has not decreased in size. I handle this like it is a part of my everyday life. I love pre-k. If you didn’t know I had cancer; you would think I was just a really small five year old. I take everything in stride.
Kirby was exactly 21 months old on August 25, 1997 when she was diagnosed with a malignant brain tumor. (PNET) She was in a coma at the time. Fortunately, she was already in the hospital, admitted for dehydration the day before due to continual vomiting. The day she was admitted to the hospital was the first day that she told me her head hurt.
Unfortunately, the symptoms of a brain tumor are common symptoms for a multitude of other illnesses. Kirby’s only symptom was vomiting. Every morning for several months Kirby would vomit. (This is a classic brain tumor symptom.) Sometimes she would do it several times a day. She would be irritable before she threw up, but afterward she would usually go to sleep for a little while and then when she woke up she would be happy and playful, going about her business like nothing was wrong. Since she really wasn’t talking yet, she wasn’t able to express the excruciating pain that she must have been feeling in her head and how vomiting relieved the pressure for a little while.
After several months of treating the symptom and misdiagnoses, she ended up back in the office of the gastroenterologist that was treating her. She’d had a terrible weekend of vomiting, and had become dehydrated. This time, in addition to the vomiting she had become lethargic, was running a fever and was unable to stand or move around. (We know now that these too are all classic symptoms of a brain tumor.) She was very sick. She was admitted to the hospital for further testing. Meningitis, Rocky Mountain spotted fever and spider bite were a few of the things that were mentioned as possibilities. Never mentioned was the possibility of a brain tumor.
She had seizures for the first time that night in the hospital. She had a terrible night screaming and thrashing. In the morning, I couldn’t wake her. It was terrifying. She had slipped into a coma. She was rushed to have a CAT scan without us and then taken to the ICU. Her pediatrician found us in the waiting room and told us that what they found wasn’t good. He was not an expert in this area. He couldn’t be sure if it was a tumor or an aneurysm. Whatever it was, it was huge. He let us know that her scans had been taken into the operating room where the neurosurgeon, who was in surgery at the time, would take a look at them and let us know what he thought.
A few hours later she was the one in surgery with the same neurosurgeon. We were warned that this tumor was so large, and her condition so fragile that there was a real probability that she may not make it out of surgery. If she did, that she may not recognize us. There was no way to know what kind of damage had been done by the tumor and swelling of her brain, or what damage may be done by the surgery which was necessary to relieve the pressure.
Moving forward almost 12 years, Kirby is a miracle. Not only is she living, she doesn’t have any mental or physical deficits due to the disease or the treatments that she bravely endured for three and a half years. Unfortunately, Kirby’s success at beating this disease is way too uncommon. There are far too few survivors. It is my hope that through Brain Tumor Awareness programs like this one, people will recognize that this devastating disease is not a rarity. When brain tumor symptoms are present, a simple CAT scan done early could save a life. We were lucky. Even though Kirby’s vomiting was recognized as a symptom of a possible brain tumor by her gastroenterologist, she did not receive a brain scan until she was in a coma. We have been blessed and thank God every day for what he has given our family.
In May 2006, an MRI revealed the cause of my headaches. Up until the month before I was diagnosed, there were no signs that ever led me to think that I had a brain tumor. But, driving home from work one day in April ’06, I started to see double stop signs, double pavement lines, and double mailboxes. Along with the vision problems, there were these short-lived migraines that caused me to black out whenever I stood up suddenly. Our family physician recommended that I have an MRI immediately. The results showed a brain tumor (pilocysticastrocytoma) in the optic chiasm. Two weeks later I was having surgery, but they were unable to remove the tumor. I remember hearing from my brain surgeon a couple months later, “I thought you were going to be blind after surgery. I think it’s a miracle that you can still see.” After surgery I eventually went through radiation. Almost three years later, and the tumor is still shrinking.
It is by God’s grace that I see with these physical eyes, but my spiritual eyesight has strengthened all the more through these trials. My faith and trust in Christ has kept me grounded and looking to Him as my provision for the day’s needs.
Words can not express the gratitude that I have for my family. They have been very patient with me during these times. Thank You, Oklahoma Brain Tumor Foundation, for the support group meetings. They have given me an opportunity to meet others who are dealing with the same things that I go through.