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Our son Tom, who is now 17-years-old, was diagnosed with an optic pathway glioma, now with pontine involvement, when he was only four. He has been through several surgeries, all at Johns-Hopkins, many, many chemotherapy regimens, all prescribed by NYU and/or Duke University, an experimental clinical trial at Children's Hospital of Philadelphia, and most recently proton beam radiation at Mass General. He was featured in the WABC TV series, "Hopkins 24/7" a few years ago (Episode 5). Up until a few days ago we did not know of CTBTA. It's been a long and at times lonely journey for Tom and our small family. Tom is brave beyond measure and bears the stress of his diagnosis better than we as his parents do. His Mom is a 16-year breast cancer survivor, and I was diagnosed with prostate cancer a few years ago. The only one in our family to have escaped the "big C" is Tom's older brother Sam, who is now 27 years old. Sam has weathered our family's diagnoses news three times and of course has had to exhibit tremendous strength to accommodate. We pray might and day for a cure, as you do. Bless you as an organization and bless those who hold out hope for a day when brain tumors are a thing of the past.
- Submitted by Emily and Frank
Lorie and Matthew Boveroux
Three years ago today, my five year old was recovering from anesthesia introduced during his preop MRI for a non specific brain tumor. The "mass" was resected in May of 2011,in a 12 hour procedure and he was paralyzed postop on his left side. After a brief stay at the Hospital for Special Care, he made a "nothing short of a miracle" recovery and was home in time to be pushed in his wheelchair at the Memorial Day parade. Matthew is now a typical eight year old boy, walking and running and talking and learning.
About two years ago I started feeling some numbness in my cheek. I told my primary care doctor about it and he dismissed it as some kind of sinus thing. I had suffered from headaches most of my adult life and mentioned it to him but it did not seem to connect. Last November I started having bouts of dizzyness and issues with hearing in one ear. After falling a few times and having sensations similar to panic attacks, I decided to go to the Emergency Room. The doctors listened to my symptoms, still not taking it serously and ordered a CT scan. I left the hospital with a diagnosis of anxeity and vertigo and a prescription of valium. The next day I was called back in to the hospital because the radiologist saw something suspicious. An MRI was performed (December 23, 2013) and a large vestibular schwannoma was identified- so large it was pushing into my brainstem. I was in a panic and what was worse, no one was responding to me because of the impending holiday. On a whim I reached out to Matthew's neurosurgeon (Dr. Duncan at Yale) who replied to my frantic email the same evening, 12/23 at 11:30 pm) who referred me to Dr. Joseph Piepmier (and copied him in his response). Within a month I was admitted to remove a "bigger than a Buick" Schwannoma in a 9 hour surgery. I lost my hearing in the involved ear, and have balance and fatigue issues but I am one of the lucky ones. I am about to fight to retrain and begin a couch to 5K program this month.
- Submitted by Lorie Boveroux
During my first year of law school in 2007, I suffered from tremendous headaches and double vision. I wrote it off, thinking it was stress and poor vision so I took some Advil and made it through the year. The headaches and double vision worsened and on July 1, 2008, I was diagnosed with a large intraventricular central neurocytoma.
I was immediately admitted to Yale New Haven Hospital for treatment. After 9 hours of surgery, my neurosurgeon was confident he was able to remove the majority of the tumor, which his team estimated was 3-6 years old. My healthy brain tissue had been pushed off to the side and my optic nerves were being strangled. To complicate matters, I was suffering from hydrocephalus. Four days later, I was rushed back into emergency surgery after suffering from an epidural hematoma and a deadly infection. After my release, I received outpatient rehabilitative therapy at Gaylord Hospital. I went from reading hundreds of pages a night and briefing cases just a month before to not being able to speak a coherent sentence or tie my shoes. My mental capability was assessed at that of a second grader.
My neurosurgery team gave me a last option of inserting a VP shunt to relieve the pressure of my hydrocephalus. They believed this would somewhat alleviate my struggles. In what my doctors deemed a “medical miracle”, I woke up from the insertion surgery with full speech and strength.
While for the most part I may be recovered, I still struggle with my brain tumor’s effects. I have developed periodic seizures, for which I will take medication for indefinitely. I returned to law school and graduated with my J.D., but I have been unable to pass the bar exam due to permanent cognitive impairments. Most recently a regrowth of the tumor was discovered for which I underwent gamma knife surgery, which I hope will lead to the end of my battle forever.
I am committed to helping find the cure to this terrible diagnosis that I have experienced firsthand. I want to do whatever I can to assist the cause and raise awareness.
If you want to find out more about me and my personal experience with a brain tumor, please enjoy my blog at greymattersblog.com.
- Submitted by Chris Cusano
My Fiance Tim and I started dating in 2010. For a few months things went really great until he started to complain of soreness in his joints and always being tired. On August 19, 2012 he started to lose his vision and went to the hospital only to be diagnosed with end stage renal disease. He was on dialysis and needed a kidney transplant. His Uncle Kenny decided to be a true hero and donate the kidney and on April 3, 2012 he received his transplant. This did not stop the constant throwing up and headaches. He always complained that there was a whooshing noise in his head that wouldn't go away. We went to over 100 different doctors and all of us were told that it was part of the kidney transplant and not to worry that over time it will subside. Almost a year to the day on August 06, 2012 he started to lose his vision again. The emergency room finally listened and gave him a CT scan of his brain which showed a brain stem tumor blocking the fourth ventricle causing fluid build up in his brain. That is where we met Dr. Michael Diluna who took on the major challenge of operating on a 33 year old man with no immune system to try to save his life. Pathology showed that this was a grade one astrocytoma located on the brain stem. It was removed successfully but he suffered from a major brain infection which caused him to be in the hospital for almost 2 months and rehab for 2 months to learn how to walk and talk again. August 09, 2013 was his one year brain tumor free celebration and if it wasn't for Dr. Michael Diluna of Yale New Haven Hospital Tim would not be here today restoring a sports car and enjoying life to the fullest everyday. We are planning out wedding September 2014!
- Submitted by Jacqualyn Bianchi
I would like to thank the CT Brain Tumor Alliance for their generous donation which helped purchase Cinema Vision Goggles for the MRI machine at St. Francis Hospital.
This past winter, my 5-year-old son needed an MRI due to frequent migraine headaches and a newly found eye problem. Doctors were concerned that the problems he was having may be due to a brain tumor and they ordered him to have an MRI. Because of his age, policy at the children's hospital is for him to be put under general anesthesia. It is very difficult for a boy who just turned 5 years old to sit still for any length of time. Anybody who's ever had an MRI knows you have to lay completely still until it's over. So, for children, general anesthesia is usually the answer.
There are risks involved with having general anesthesia, however, I had an even bigger reason for not wanting my son to go under for the MRI. I have a disease called Malignant Hyperthermia, which is a rare, life-threatening condition that is triggered by exposure to certain drugs used for general anesthesia. When I was young, I was put under general anesthesia and almost lost my life. My children have a 50% chance of inheriting this disease. The test for this disease is a muscle biopsy, which can give faulty results. Results are never 100%. So, instead of putting all my children through muscle biopsies, they are treated like they have the disease.
When I found out about the Cinema Vision Goggles that the CT Brain Tumor Alliance donated to St. Francis Hospital, I decided to give it a try. Having an MRI at St. Francis with the Cinema Vision Goggles meant that my son did not have to put under anesthesia. He brought his favorite DVD to watch and handed it to the technician. She prepared him for the MRI, put "Harry Potter" on, put the goggles on him, and my son did not even realize he was entering the MRI machine because he was already a few minutes into watching the movie! The goggles completely covered his eyes, even the sides so he couldn't see out. He lay completely still for the duration of the MRI. Amazing! No anesthesia and no moving around!
My husband and I were so thankful for this experience and are happy to say the MRI was clear. He ended up needing corrective eye surgery and is doing very well today.
Thank you so much to the CT Brain Tumor Alliance for the donation of the Cinema Vision Goggles to St. Francis Hospital.
- Submitted by Danielle Plona
Thank-you for your donation to CCMC. Morgan was eligible for funds to help us buy oil this winter. Morgan is currently defying the odds. She’s attending school and doing things most 8 year olds do. Her tumor has gone from bigger than a golf ball to thumb nail size! Thank you for your support – Wishing you all a happy 2012.
- Submitted by The Platt Family
My 30-year old brother was diagnosed with a brain stem Glioma almost 5 year ago. He has been through Chemo, radiation, trial of surgery to remove the tumor and now is on a successful immuniotherapy trial sponsored by the Voices Against Brain Cancer foundation. He is a tribute to strength, positive attitude and a desire to fight. The miracles are real and the medical advances are getting there. We still need to work together to make sure that the money is always there for more trials and research. Donate, donate , donate.... I'm so proud of my little (but bigger than me) brother!
- Submitted by Kristin Carroll
Lois is a woman of honor, good faith and unconditional love…a strong example for family and all around a mentor and a leader. She has been a part our lives for many precious years and many more to come!! She has just been recently diagnosed with a sudden brain tumor. She is in great hands with the most amazing surgeons, as she is currently at Johns Hopkins University hospital, going into surgery tomorrow early afternoon. We have the utmost faith, as she is a very strong woman that will overcome this surgery with the best spirits we all positively live by. Most of all she will defeat this disease that frustrates the reality of lives ever so much. Please all join me in the prayers and strong influences you may have in your faith to overcome this awful disease with Lo.
Lo is one of the most amazing, positive women that I have been so blessed to have in my life.. I say all this with the support of my sister, Jennifer Pace as I would never be so hopeful and confident that Lo can beat this without my sister, her support for Lo and the amazing story of the fight against brain cancer Jennifer has fought… More importantly the courage to be healthy and live life to enjoy all her family and loved ones around her.. She (Lo) reminds me of Jennifer and I know the both of them will fight through this forever as long as we all can exist together!!
Aunt Lo, I have so much confidence that you will beat this, truly.. Be that strong women we all know you are, we are all here for you.
All our love and prayers to you Aunt Lo, the Butler and Penrose families. Tomorrow will be a great day!!
- Submitted by Jill Norton
Giana Marie Cardonita
March 2011...My 9 year old daughter Giana had been vomitting since she was in kindergarten. It wasn't anything alarming to her pediatricians since it was only abt once or twice a month. Prior, she would come down with extremely high fevers over 105 degrees but they would only last a few hours with no other symptoms. The vomitting started becoming more frequent, about two to five times a month, but only at night after she was in bed for a 1/2 to 1 hour. At her 7 year physical, it was noted that she had only gained 1 pound & grew only 1/2" in one year. She was sent for a bone study (an x-ray of her wrist) that showed she was 1-1/2 years behind in growth. We were sent to an endocrinologist who sent us for a 4 hour Growth Hormone Stiumulation Test. Her pituitary was releasing the growth hormone but not at full capacity. It was said that maybe she was just going to be small because I am tiny or that she may just be growing at a slower rate. It was also thought that Giana needed reading glasses but just for the right eye. Read on...
Still vomitting, we went to a gastroenterologist who sent her for a colonoscopy, endoscopy, & biopsies of her stomach, intestines, etc. to rule out Chrohn's Disease (my father, John, had Chohns, RIP) and Celiac's Disease. All tests came back negative. Not that I wanted a positive result, but I knew something wasn't right and was getting more upset with every negative test. I started keeping a journal of what she ate on the nights she threw up. I cleaned her room from top to bottom thinking it may be something making her sick. I thougt there might be mold somewhere in her room. She also went for a lactose intolerance test. This came back severely positive! I didn't believe it for a second. For one, she never had diarrhea. She ate lactose products & only sometimes would vomit but again ONLY at night. Someone that is LI would be immediately affected by lactose not hours later.
The vomitting continued. Giana had a routine. We would hear her vomitting & she would get out her pail & sleep on the floor as to not soil her bed. This is what she was used to & we began to believe that this is a child who has a weak stomach & throws up a lot. She began to believe that this was normal.
The vomitting at night stopped for almost 2 months. We thought that maybe she grew out of it! Wrong! She then started to vomit bile but ONLY in the early morning hours. I started keeping another journal. Then she came into our bedroom one morning grabbing her hear complaining of headache. Then another headache. Then 2 mornings in a row. That's it. I took her back to the pediatrician & they finally sent her for a CT-scan. We went the next day and I heard the news that dropped me to my knees. "Donna...it's a brain tumor." OMGosh, my grandfather, Ralph Pannone, died from a Gliobastoma back in 1988. I was numb.
We immediately were sent to Yale Children's Hospital where we met our hero, Dr. Michael DiLuna, Pediatric Neurosurgeon. It was like he had a halo around his head. On 8/26/10, Giana went thru a 7 hour surgery to remove a Craniopharyngioma, a very rare slow growing benign tumor the size of a tennis ball. It was located in "prime real estate". It picked the worst part of the brain. She was either born with it or has had it for a long time.
The tumor left Giana legally blind in her right eye & no peripheral vision in her left eye because of the pressure on her optic nerve. The doctor had to almost take apart her eye to get at the tumor. Some think the eye doctor last year should have saw the pressure when her eyes were dialated. The stem of her pituitary gland had to be removed since these tumors tend to attach to them. She has Panhypopituitarism with Diabetes Insipidus DI, Central Adrenal Insufficiency, Hypothyroidism, & Growth Hormone Deficiency. DI is the loss of DDAVP. Without this, she will output copius amounts of urine & become severyly dehydrated. WIth CAI, her body doesn't make cortisol that helps us deal with physiological stress like fevers, infections, vomitting, dehydration, burns, injuries etc. This can become life threatening for her. She is on 3 medications now & will start growth hormone injections 6 times/week next month. She will be life-dependent on these meds & must wear a medical alert bracelet at all times.
We count our blessings every day. Giana's outlook is positive & she has an even greater spirit. Giana is brave & strong & courageous. She was adopted by the Yale Bulldogs Women's Ice Hockey team as part of the Bulldog Buddies program, a new program that pairs children with brain tumors to one of Yale's athletic teams. This has been the best thing for her. She has gained 22 big sisters & the story was covered by WTNH News 8, The New Haven Register, & AOL Fanhouse.com. A short documentary was also made for the Yale Neurosciences Department (on youtube under "Giana's Story"). Giana has also been granted a wish thru M-A-W Foundation of CT.
Giana is a survivor. And, vomit-free since surgery!!! I hope that doctors will learn that a tumor can affect children differently & that a headache doesn't have to be a symptom. My daughter suffered for almost 4 years with vomitting! The tumor should have been caught sooner!
- Submitted by Donna Cardonita
Georgia is my cousin through marriage she is 50 yrs old and as had a few surgeries do to neck surgery and then knee surgery. After receiving anesthesia for the knee surgery she had serve headaches, after 2 attempts to the local hospital here in Poughkeepsie NY she was sent home saying maybe she was dehydrated. She ended up going to a neurologist who ordered a Brain MRI and within 12 hrs of the MRI she received a call from the Dr. and went to the office for her results, the Dr. explained that the Tumor was the size of a grapfruit and that it was a glioblastoma and told her she had only 1 yr to live. After receiving this devasting news she went to NYC to a hospital to see and neurologist and they did a biopsy can it came back as a grade 2 astrocyetoma, en operable, it is a slow growing low grade tumor. We have bee waiting for answers from these doctors since December of 2010 and still have nothing to go on, as of treatment. We have so many questions and cant seem to find anyone or group to help prolong her life. The last appointment was she was told it may now be a grade 3 and will start radiation. Can you please give us so information or someone possibly a survivor of this form of tumor so Georgia can try to get on with some sort of normal life. I being a Breast Cancer survivor of 8 years makes it easier for her to talk to, I know how it feels to wait for the most important call of your life, is the UNKNOWN.
Georgia is still with us as of today
- Submitted by Karen
My name is Ebony Adams and I am an African-American and a 3-year survivor of a rare, malignant life-threatening brain tumor. I had something called cervicomedullary ependymoma. In late December 2007, I was having these very bad excruciatingly painful headaches. It felt like something was pulling or pushing something on my brain. The headaches were so bad that I can't even explain what the pain felt like. I also was having a lot of upper back pain.
That December I found myself going to the emergency room. Little did I know when I was admitted the following morning that it would be my last time walking or being around my children. My doctor at Uconn hospital, Dr. Patrick Senatus, came to me that night and I got the diagnosis that would forever change my life. He said, "Mrs. Adams, you have a tumor growing from the back of your brain onto your spinal cord." When he said that to me I was looking at him like, "Are you serious?" My heart paused for a long time. I took a long deep breath. What I felt was a sense of relief finally knowing what it was but nothing could prepare me for the answer to the question that I asked. I asked him was it life-threatening and he said it was. I cried like a baby. We had just lost my sister 10 months earlier. I wasn't so much afraid for myself. I was more afraid for my parents and my 2 kids.
I had 5 surgeries done to the back of my neck for them to remove the tumor from the back of my brain and then they had to take part of my spine out to unwrap the rest of the tumor which was as big as a lizard. Then they found that my brain began to leak fluid. It turned out that I also had a ventricular cyst that had also grew in my brain so they had to also put a shunt in my head.
I spent 3 months in Uconn under a medical coma and then I spent 3 months at a hospital for special care for rehab. I had to relearn how to walk, talk, feed myself and communicate because my illness took away my independence. I moved in with my mom and kids in 2008. I also started outpatient therapy at Easter Seals and in Februrary 2010 I was recognized as Easter Seals traumatic brain injury of the year. I think that it's very important to fight for this cause.
- Submitted by Ebony Adams
In 1997 I experienced a grand mal seizure and was hospitalized. I had two surgeries that year. My husband was by my side the entire time and my daughter was in a daze. 2004-2005 I started chemo and my husband was diagnosed with stage 4 colon cancer. I broke my tibia and fibula and had to go on Temodar. It worked.
My daughter came down with Crohn’s disease and the dog died. My father and brother in law died in fire . . . I could go on and on. I know that Jesus kept me going. The one thing I want now is to go to Hartford Hospital for possible treatment with the Trilogy. You see, the tumor came back in November of 2008. I did not say anything because I had to wait until my daughter fin-ished her finals. I then went to Duke and had surgery. Same grade, same diagnosis. I spent the last year on chemo but now it is back again. I am going to Massachusetts General Hospital this Wednesday to see what they can offer in terms of radiation, but I know in my heart that the best place for me is Hartford Hospital.
- Submitted by Pat
It was another otherwise normal drive home from a hockey rink with my 15 year old son, back in late April of 2008. Nothing out of the ordinary... cold rink, warm car, long ride home. Suddenly, I felt queasiness in my stomach and a slight headache...probably shouldn’t have eaten the McDonalds at that last rest stop. Forty five minutes later, we’re home at last. It’s off to bed, hoping that I would be fine in the morning, but I wasn’t. After a few days of pain, I was off to see Dr. Krebsbach’s , my Ear, Nose, and Throat physician, where his diagnosis was migraines. After repeated visits, Dr. Krebsbach assured me that I would have to live with migraines. He suggested an MRI to rule out anything serious. I’ll never forget his words…Don’t worry, there’s nothing to be concerned about, like a brain tumor!
The next day, it was off to my MRI, an experience I would never forget, claustrophobia and anger all wrapped into one. Forty eight hours later, Dr. Krebsbach called the house. He stated that the MRI report had something that necessitated a consultation with a Neurosurgeon. What? Why? It seemed like I couldn’t stop asking questions. At the Neurosurgeon’s office, (he shall remain nameless) I was escorted to a room where a P.A. informed me, quite tactlessly, that I had a brain tumor. I felt the room spin. I asked her to repeat what she just said. Same words…brain tumor. The MRI report read: Large aggressive tumor on the right side of brain, consistent with a Glioblastoma Multiforme. God, how could this be happening…my wife and 3 children…how would they survive without me. After telling my wife of the news and crying in each others’ arms, I knew what my next move was. I had a very short time to put my affairs in order, and prepare my wife for a life without me. My next course of action was to call my attorney and tell him of my demise. He was distraught. “Take this number down. Call a former client of mine…Tracy Fanning. She is part of a brain tumor alliance group, and has more knowledge about this than anyone else. I now know what human compassion was all about. The Brain Tumor Alliance Group arranged for me to have a consultation with Dr. Piepmeier at Yale University the very next day. I only realized how much of an impact that gesture was a month later.
The next day, my wife and I set off to meet with Dr. Piepmeier and Betsey. What a sweet lady, she put us at ease the first day we met. A few minutes after giving Betsey our information, Dr. Piepmeier walked in. Every time I say this I get goose bumps. When I saw him the first time, he had an aura around him, like a bright light. As crazy as it sounds, the minute we left the office, I turned to my wife and said, “I feel better”. That wasn’t just a line to put her at ease, I really felt it. Three days later, I was in the operating room. I woke to Dr. Piepmeier’s smile and assurance that everything went well and that he believed that he removed 100% of the tumor. He wanted to wait for the biopsy report to make any further evaluations. We went home and prayed. The next day, the phone rang, and it was Dr. Piepmeier. “Hi Dr., how’s everything going?” “ Charles, do me a favor…go out and get a bottle of champagne. What you had was not a Glioblastoma. It was a benign meningioma. It didn’t come from anywhere else in the body nor does it look like it spread. You my friend are what every Neurosurgeon hopes for with every operation. You won’t need any further treatment Congratulations… enjoy the rest of your life”. Within two weeks, I went from nearly dead to re-born. I would have never received the medical care I did if not for the Ct. Brain Tumor Alliance and especially Tracy Fanning and Susan Lemkuil…my angels…Charlie’s Angels!!!
- Submitted by Charles Izmirlian
Tarae Alexandria Postell
My niece Tarae is 10 years old and she suffers from Brain Stem Giloma. She was diagnosis with it in November of 2009. She has recieved radiation treatment which strunk the tumor about 20% but in May the tumor started growing very rapidly. She is now on Kemo but it isn't working. I don't know what she is considered to be she didn't died yet and she hasn't overcome the cancer. I call her a fighter! She is fighting for her life to remain here on his earth. If thee is anything you can do to help her out please let me know. Thank you.
- Submitted by Trinene Davis
This actually isn't my story it's about my mother, a 2-year survivor of Glioblastoma Multiforme. She was diagnosed in May of 2007 on my parent's 31st wedding anniversery. She had her first surgery in June of 2007 followed by several smaller surgeries under the Cyber knife at St. Rapheals hospital and many Chemo treatments at home. She has lost a portion of her long-term memory, sometimes she can't even remember our names. Her short-term memory has also diminished, so she repaeats herself or asks a lot of questions. over and over. As a family we struggle with it everyday but then we realize, good or bad, these are the best times. Her team at the hospital said she is a miracle because this type of cancer is terminal and she was stage 4 when they removed the tumor. It has come back every year since then but still she finds the strength to keep going. I look up to her as a role model and heard about this site on the radio and decided to share her story as one of hope and courage. I hope this will be useful, you are doing a wonderful thing. Thank you.
- Submitted by Kathrine Butterfield