2012 Mission to Mexico

Last week, my colleague and friend Dr. Michael Lawton (UCSF) and I led a team to Guadalajara, Mexico to serve the underprivileged population there. I am extremely honored to be a part of this trip for the second year in a row.  I sometimes take for granted the conveniences of working in a large state of the art hospital and I’m humbled that we were able to perform six complete brain surgeries (including diagnostic assessment, clinical and academic discussions, surgical treatment in the selected hospital and follow-up) free of charge in our time there. We performed complex cases with only the most basic of equipment. Our patients were of the general population of Guadalajara and we sincerely hope we made a difference in their lives and longevity.

I want to thank all of my patients both at Hopkins and beyond for trusting me with your care, treatment, and surgeries. Being a part of your life means so much to me, and being able to give something back to the world is a terrific and awesome reward. Guadalajara isn’t far from the small Mexican border town I grew up in. To be able to return after fulfilling my dreams, while helping others achieve theirs, is a wonderful honor that I hope to make an annual experience. 

Upcoming Events

We have some exciting events coming up for summer/fall 2012!

Batting For Brains- July 14th, 2012 (Camden Yards)

 Join us for a night at the ballpark as the Orioles take on the Detroit Tigers. Discount tickets available!

To purchase tickets, click here and enter the special offer code BRAIN

Pottstown Roller Derby - July 14th, 2012 (Pottstown PA)

Cheer on the Roller Derby Rockstars as they lace up their skates for our very special cause!

For ticket info and derby times please click here

Mary Lamb's Crab Feast - August 18th, 2012 (Edgewater, MD)

Grab your mallet and join in the fun of good food and friends at Mary Lamb's annual crab feast!

For ticket information and purchase, please email Mary at shelbylamb@aol.com

The Baltimore Half Marathon - October 13, 2012 (Baltimore, MD)

Run, support, or donate as Dr. Q and his team race for a cure. 5k, relay, and full marathon spots also available.

Learn more about joining our team here

Mike Miller

                   

                    Mike and Linda Miller were married to each other for forty years. They were just 15 and 16 when they met in high school and started dating. Linda describes him as a very fun, loving, patriotic, religious, family oriented person. Some of Linda’s fondest memories are of Mike making her laugh so hard at bedtime that she was scared they’d wake up the children. After high school, Mike went to Vietnam and Linda went to nursing school. They stayed in touch the whole time and when he returned from the war, he went into the clothing industry just like his father and brothers. Once they had their own children, Mike became a consummate father and husband. He coached his sons’ little league team and even when the family was low on money, Mike would bring home small trinkets or a bouquet of flowers for Linda. Linda says that “we did not have much money, but we had a whole lot of love.” Mike and Linda watched their granddaughter when she was a toddler and Mike was always willing to get up early and tend to her, just to let Linda get a little more sleep. Linda would often find the two of them dancing to morning cartoons when she woke up.

                     Their long journey with cancer started in 2006 when Mike was first diagnosed with the unimaginable - skin cancer, then prostate cancer in 2007, and a precancerous colon tumor in 2008. He had skin cancer removed from his shoulder, chest, and back area. He then had prostate seeding, which resulted in his PSA level going down. This was a good indication and they remained very optimistic, despite the fact that he had an especially hard time during the colon surgery because the staples caused an immune reaction, leading to the opening of the incision. It also resulted in an infection that he was trying to overcome before attending his daughter’s wedding in October 2008, and his son’s wedding in November at Disney World. He was still quite weak in October, but was doing much better for his son’s wedding in November. That year, the Millers celebrated their children’s weddings and thought the worst was behind them. They’d been tested through three cancers and multiple operations already. Neither could even conceive of the idea that something worse was coming.

                     In the summer of 2010, Mike started acting strange. He had a hard time finding the right words for what he was trying to say. At first, Linda and Mike didn’t think much of it. They chalked it up to aging and Mike even cracked jokes about his forgetfulness, saying that he had “Oldtimer’s” instead of Alzheimer’s. Mike finally changed his tune when he came home one day and said to Linda “I think you’re right, there is something wrong with me.” He was obviously very upset and when Linda asked him what was wrong, Mike replied “I can’t remember my grandchildren’s names.” They decided to talk about this with his doctor at his next appointment on July 28th. Mike’s doctor immediately knew something was wrong and was upset that nothing had been done sooner. Mike was moved to a local hospital in downtown Baltimore and was given a battery of tests including an MRI. By the 4th of August, they had the results of the MRI and they were told for the first time that Mike had a Grade IV Glioma. Linda has a nursing background and realized that out of all brain tumors one could have, that one was the worst. As if that was not enough of a challenge, the hospital did not want to offer him surgery because his prospects of doing well were too slim. Linda sometimes felt like the hospital just wanted to send him home. The Miller family had been through so much with his previous cancers, but they had never been told that the odds were against him. Linda refused to simply accept that prediction and instead began to look for other option. With the support of family and friends, they started to search for any options open to them.

                     She not only had to find a surgeon who would be willing to operate, but also needed to garner financial support because despite being a war veteran, the government refused to pay for a surgery. They did, however, start chemotherapy. Around the 20th of August, they got in touch with Dr. Quinones for the first time through an acquaintance of Mike’s brother. Following that, a friend of Mike with some good connections was able to find financial support for the surgery. The money coming through was a godsend, because the tumor wasn’t waiting. On the MRI of early August, the tumor was around 2 cm in size. By the time Dr. Q finally operated on Mike in early September, he was bearing a 9 cm mass that was pushing his brain completely to one side. Prior to removing the tumor, Dr. Q had to relieve some CSF pressure that had built up because of brain swelling. If Dr. Q had not operated on Mike when he did, it’s very unlikely that Mike would have made it through the month of September. While Dr. Q could not provide a cure, he was able to give them time; and time is what the Miller family needed. Mike was present for all of their children’s birthdays as well as the winter holidays in 2010, and he was able to spend time with ten of his twelve grandchildren.

                     Mike’s daughter Jennifer tells me that she had always seen her father as a very strong and healthy man. However, the change was very apparent with the brain tumor. He became very frustrated that he could not communicate with others. Mike didn’t want people to help him finish his sentences and often would lose patience and give up. Witnessing her father as vulnerable as he was when he was diagnosed with a brain tumor was very difficult for her. When I asked what the scariest part of it all was she replied with a voice full of emotion, “it was the knowledge that there was not much time left.”

                     On his 62nd birthday in January of 2011, Mike was on the couch with one of his sons, who was trying to chat with him. His son quickly noticed that Mike was not himself. He was not paying attention and all of a sudden had to grab on to a chair. That was Mike’s first seizure. They had to call 911 and Mike was transported to the local hospital in Bel Air, MD. Linda insisted that they transfer Mike to Hopkins and that Dr. Quinones see him personally. She didn’t know exactly what the seizure meant for Mike’s recovery, but Linda says that “if there were no options left, I want Dr. Q to tell me that.” After another MRI, Dr. Q confirmed the family’s worst fear. The tumor was growing back. Dr. Q offered them the choice between going back to the OR and trying to remove another portion of the tumor or not proceed any further. When asked what he would do if it was him, Dr. Q told them that “if Mike was my father, I would want to give him another chance.”

                     It was a very difficult decision to make, and they were pressed for time. Despite Mike’s difficulty communicating, he decided with Linda to go through surgery again. The family trusted Dr. Quinones and from the very first moment they talked, they felt the confidence in him. They felt he treated Mike like a person and not a number or just another surgery. Dr. Q almost became part of the family. Everybody felt that way, including Mike. “That is how Dr Q makes you feel; it means an awful lot.” The surgery was successful, but the recovery was difficult. He stayed in rehab for a while, but Linda could tell that he wasn’t getting any better. One day she asked him if he just wanted to go back home and Mike nodded “yes.” They went home the next day, and four days later, Mike passed away. Linda recalls that for some mysterious reason, everyone started showing up at their house the evening he passed. Only one son was not able to make it during that time because his wife had just been in labor. Two days before passing away, Mike got to see a picture of his eleventh grandchild. On the phone, Linda was very emotional when describing her last moments with her lifetime love. Right before passing away, she was at the head of his bed providing him with some pain medication, when Mike started looking around but could not find her, she stepped down to get in his field of vision and Mike gave her a last hug.

                     One can hardly imagine the hole that was left in Linda’s life. Mike had been with her for three quarters of her life and now he is gone. Despite her loss, she and the rest of her family are very grateful to Dr. Q for giving them more time. In June 2012, the Miller family will be hosting a fundraising event in memory of Mike and for brain cancer research in Dr Quinones’ laboratory. Linda knows firsthand how important brain cancer research and eventually finding a cure for brain tumors is, and she is positive that helping to find a cure is the sort of legacy Mike wanted to leave behind.

http://doctorqmd.com/get-involved/fundraisers/mike-miller/

BILL BECKER READY TO DIVE BACK IN

At 25, Bill Becker began a furniture company BDI (Becker Designed Inc) and serves currently as the CEO. Twenty-seven years later, he lives in Washington, DC with his wife and two children. Bill enjoys scuba diving and has had a passion for biking since he was a kid. Our conversation turned to Europe at one point, and he told me about the many countries he visited on a bike trip in 1982. Starting with England, he rode his bike through the Netherlands, Belgium, Germany, and France. A small child riding his bike around the neighborhood feels a giddy sense of glee. The champion cyclist feels the power of his body working together with the rhythm of the bike. They both feel free. Being diagnosed with a brain tumor is the opposite of those feelings. Your body rebels against itself. The childlike innocence is gone and replaced with worry, fear, and doubt. The rhythms you count on are disrupted in one terrible instant.

For a couple of years, Bill had low testosterone levels and experienced occasional blurred vision. He visited two general practitioners and one endocrinologist, he received injections to raise his testosterone levels, but no one could give him a diagnosis. He became disenchanted with the doctors who couldn’t answer his questions or tell him what was going wrong in his body. For an active person, there is no greater frustration than a body out of whack. In 2008, Bill met a doctor while relaxing at a spa in Massachusetts. As Bill was telling the doctor about his symptoms, the doctor suggested that Bill had a pituitary tumor. Bill recalls thinking to himself that somehow this diagnosis made complete sense. While the prospect of a brain tumor was dreadful and terrifying, Bill grasped onto the small glimmer of hope than he may soon have an answer to his medical problems. As soon as he came back to DC, he had an MRI and was told that indeed he had a very large pituitary adenoma tumor and needed brain surgery. He was shocked by both the news and the way he learned of it. After all, he says with a laugh, “You don’t expect to find a diagnosis by sitting down with a doctor at a spa.”

After the MRI, he went online to research pituitary tumors and educate himself. What he found gave him hope. He found that it was a fairly common tumor and that it had better outcomes compared to other types of brain tumors. “I wish it was the case for every brain tumor, but I know it is not like that.” As a member of an entrepreneur organization, he was familiar with the “Healthnetwork” foundation. The purpose of this foundation is to provide business leaders with the world’s leading hospitals and specialists. He called the foundation and was referred to Hopkins and eventually to Dr. Quiñones-Hinojosa. That was the first time he had heard about Dr. Q, and immediately began searching for information about him. After reading about Dr. Q online and watching his segment on the Peabody Award winning Hopkins show (ABC 2008), Bill felt lucky to have found Dr. Q.

Bill found out that he would need surgery in 2008, and again felt the rhythms of his life disrupted. Bill values knowledge and learning, but there was no way to predict the outcome of a brain surgery. The what-ifs of brain surgery hit hard. His research on Dr. Q, and the doctor’s warmth, knowledge, and compassion at Bill’s pre-operative appointment filled him with confidence in Dr. Q’s surgical skills and enabled him to keep a positive attitude. He felt grateful that he did not need to have as much apprehension as other brain tumor patients. Right after the surgery, Bill had a severe sodium imbalance, which could be deadly. He had to return to the ER and was admitted to the hospital but after incredible work by the endocrine, the neurocritical, and the neurosurgery team lead by Dr. Q, he recovered. After that first surgery, Bill had a huge improvement in his peripheral vision, as well as a significant decrease in ocular migraines. More than three years later, Bill’s world changed again when the tumor reappeared on a follow up MRI. He was now facing a second major surgery. His prior experience with sodium imbalance only fueled his apprehension for another surgery. His first surgery was successful, but Bill worried about the odds of another surgery going as well. However, after an appointment with Dr. Quiñones, Bill once again felt a strong confidence in Dr. Quiñones’ skills. Bill’s positive attitude and faith in his surgeon helped him make it through his second surgery without any issues.

Bill is relieved to have the second surgery behind him now and is relying on Dr. Q and his team to monitor the tumor and develop a proactive strategy to keep the tumor from returning. He is feeling great and is so thankful to be able to live life to its fullest at less than 5 weeks since the surgery. When asked what it felt like to be diagnosed with a brain tumor, he says that he is “very thankful that his tumor was operable and non-cancerous and that he found such a skilled and caring surgeon.” Bill is currently doing very well, and has already booked his next scuba diving trip.

Amy Frondoso

“We have a pretty small family; cancer took everyone,” says Amy Frondoso with a nervous laugh. Her family has a long history of cancer- her mother had pancreatic cancer, her grandfather had lung cancer, and her aunt had lymphoma, and a few years ago she was diagnosed with thyroid cancer. Amy was also recently diagnosed with and underwent surgery for a brain tumor, but this is not her defining quality. Amy is a mother of two daughters, a swimmer, yoga practitioner, and avid reader. She is a Baltimore native, raised by her grandparents with two siblings.

In early 2011, she had a sudden “pop” of pain in her head followed by a terrible headache. The pain worsened and she eventually blacked out at a grocery store. On her way back home, she brushed it off as a migraine, but the pain would not go away. Amy eventually went to the hospital, and had a lumbar puncture, a CAT scan and an MRI. It was found that she had a brain hemorrhage which had caused the pain and her collapse. At the same time, the MRI showed that she had a pituitary tumor that was unrelated to the hemorrhage. When she was told that she had a tumor, she was very worried that it was cancerous. However, she tried to remain realistic and positive. While she was upset, saddened, and frightened, she was not shocked by the news of the tumor because of her family history. “When I was first diagnosed with cancer, there was no initial shock, because I knew that cancer ran in my family,” she remembers. Amy tried to approach her new diagnosis with the same positive philosophy by which she lives her life. She recalls that her family members rarely had a positive attitude and that they deteriorated very rapidly from their disease; she believes that “if they had a more positive attitude, they would have done better.”

When she fought thyroid cancer, Amy was able to remain very strong because she never had visible symptoms, and did not deteriorate or suffer much pain. But with the pituitary tumor and the hemorrhage, her daughters could see for the first time a vulnerable side to her, and this frightened them. They rallied around her with love and support, and Amy says that the support she found in her family meant the whole world to her. She fondly recalls that “My daughters became my mothers.” At Hopkins, she was referred to Dr. Quinones, whom she had already learned a great deal about. She recalled watching an inspiring PBS show about Doctor Quinones and telling herself that she would love to meet him. Little did she know that she was about to become his patient.

In February 2011, Dr. Q was able to resect her tumor and Amy was relieved to learn that it was non-cancerous. When asked if she had any regrets, or ever considered seeking another opinion, she said: “No, Hopkins and Dr. Q have been so wonderful. He is that light that you see at the end of the tunnel, but also that light that was with you throughout the tunnel.” Her advice to all brain tumor and cancer patients in general is to always keep a positive attitude, “Put some laughter in your life, be around your family and friends, and just make the situation light.”

Amy is also a great advocate of the Reiki Healing program. She describes it as a healing energy that you acquire through a form of meditation. As a cancer patient, she used to go to Reiki circles to re-energize her body. She says, “It removes pain, help you relax and stay positive.” She is now training to become a certified Reiki practitioner. Amy and her daughters have recently committed to run the Baltimore half-marathon with Dr. Q to support brain cancer research. Amy and her family are powerful reminders of what can be accomplished with love of life, support of family, and a positive attitude towards our hurdles.

INSPIRING STORIES: THE MIRACLE OF LIFE

             When I first met Lida and Charlie I could directly tell that they were charming people, but what I could not tell was the incredible battle they had been fighting over the past two years.  Lida Dickinson lives in Pennsylvania with her husband, Charlie, and has four children and numerous grand-children.  In February 2010, Lida started having excruciating headaches and joked around with her co-worker that she probably had a brain tumor.  Her youngest daughter, Stephanie, lives in New York City but she could tell that something was wrong.  Stephanie recalls that on the phone, her mother “sounded odd and even hung up on [her].” The next day, she found out that her mother did not show up for work and was not at home either.  Instead of going to work, Lida had driven herself to an urgent care center and had gotten into minor accidents on the way there and on the way back.  At the medical center, they told her that she had a sinus infection and gave her some pain killers.  Lida does not remember those events, but it was enough for Stephanie to show up at her mother’s house and send her to the ER at the Lehigh Valley Hospital.  A CAT scan of her head revealed a brain tumor.  

                The news was a shock for the entire family. Stephanie recalls that she expected her mother to be suffering from some sort of depression and stomach upset, but she had a hard time accepting that her mother actually had a brain tumor.  Charlie says that he did not know a single thing about brain tumors before Lida was diagnosed with one.  It was on a Friday that a surgeon told them that Lida needed brain surgery.  Without answering any questions, the surgeon said she would be back on Monday and left.  Stephanie’s cousin, Leah, was acquainted through her husband with Dan Carr.  “Dan Carr had a brain tumor resection from Dr Quinones and had only AMAZING things to say about Dr Q.”  As the entire family was making research on Dr Q, they discovered that he was a world renowned surgeon with a tremendous amount of experience in this area.  They were able to get Dr Q’s cell phone through Leah and that same night, around 10 pm, Dr Q was in touch with Lida’s family.  The next day, he requested an ambulance to bring Lida to Hopkins; and on Wednesday, Dr Q operated on her and was able to remove 98 percent of the tumor.  Pathology diagnosed a grade IV Glioma, which is one of the worst types of brain tumor.     

                Stephanie recalls how helpless she felt when she was living in New York City and was the only one not living near her mother.  Stephanie has always had a very close relationship with her mother; they talk on the phone every single day.  After Lida’s first surgery, Stephanie tried to visit a few times a week.  Eventually, she concluded that she could not live away from her mother; she packed her bags and moved with her two boys to Pennsylvania.  Stephanie’s husband was very supportive and would travel by train every weekend to be with them. 

                Four months after Lida’s surgery, she developed a high fever because of an infection at her surgical site.  She went back to the local hospital where they admitted her.  Stephanie sent an e-mail to Dr Quinones letting him know that her mother was in the hospital.  Dr Q was on the phone with her within 10 minutes and wanted to speak to Lida’s doctors.  24 hours later, Lida was back in Baltimore under Dr Q’s supervision who determined that she would need her skull flap removed and six weeks of round the clock IV antibiotics.  During that time, all four siblings made sure their mother would receive her antibiotics every 8 hours.  They learned everything about PICC lines, and made sure their mother was well taken care of.  They had a weekly schedule detailing who would be administering the medicine, who would bring her meals, and who would be doing her laundry. 

                After the surgery, Lida was accepted in a clinical trial at Duke.  The doctors at Duke were impressed with Dr Quinones’ resection.  In February of 2011, after an Avastin infusion, Stephanie’s sister drove Lida home.  On the way back, Lida began to shake, her teeth began to chatter, and her temperature began to elevate. Stephanie’s sister eventually called 911.  Lida had gone into toxic shock because of a PICC line infection.  According to Lida’s family, “she had once again, cheated death.”  This clinical trial lasted an entire year, and now two years after her first diagnosis, Dr Q can tell her that she has clear scans and is doing great.  They were both very thankful to him and his team for saving her life and for treating them like human beings.  When asked if they would have done anything differently, Lida and Charlie responded with one voice: “Nothing.”  Lida’s number one advice to all brain cancer patients is to keep a positive attitude.  She also emphasizes the importance of advocating for yourself and making sure what you are told is accurate.  Like many patients, she believes that what makes Dr Quinones so unique is the way he treats his patients. “He treats you like a friend, talks to you like family in lay terms and shows you pictures to support his explanations” says Charlie.

                Stephanie commands her mother for not even once complaining about being sick. “She has never shed a tear over her whole situation.  My mom is truly an outstanding individual and I am so thankful to Dr. Quinones and his team for saving her life.”  When I asked Stephanie what advice she would give to others like herself who have a loved one suffering from brain cancer, she says that one should be a good advocate for his or her loved one, find good resources, and when given a bad prognosis do not simply accept it.  Every day, after putting her kids in bed, she would search more information on internet about the disease and upcoming clinical trials, sometimes until 3 AM.  Perhaps, her greatest advice for the loved ones of a cancer patient is to make sure that he or she always has a strong desire to live and never stops fighting the disease. Stephanie is now pregnant with a third boy; she says that witnessing all of her siblings coming together and taking care of their mother made her want to have a larger family.  The miracle is not only that Lida is alive, but also that their family ties have grown stronger and that in the end life goes on.  

My Journey with Brain Cancer

I met Don in October of 2007 and began a journey with him. He was a healthy, successful, inspiring marathon runner and he also had Anaplastic Astrocytoma, brain cancer. He had already undergone brain surgery to remove the tumor. Not being fully aware of what the disease had in store for him or for myself, we moved ahead in a relationship. We moved in together a year later, and I made the choice to commit to Don and to brain cancer. Don had an ability to make it appear that he did not have a terminal illness. He was independent, strong, well- traveled, and loved life. He never complained of pain, weaknesses, or the disease itself.

I did some research on brain cancer, but I was not prepared for what the road ahead entailed. Don began to have more frequent seizures, and his right side became weaker and weaker. He came home from a run, and said “I will never run again...” We began visiting more and more doctors, and Don was taking different medications to help with the symptoms of the disease. Don was determined to help himself and continue to live life. While seeking professional wisdom, Don had a seizure that would not go away. I rushed him to the emergency room, and he stayed in the hospital for over a week while different physicians met to discuss options. He lost his ability to communicate effectively and write; he began to get letters and numbers mixed up.

The options that the doctors delivered were always the same; control the seizures and symptoms with a medication cocktail, or have another brain surgery. Don chose medication because he did not want to go through another surgery. His body began to decline more and more each week. We had to install shower handles, move his bedroom downstairs because of his inability to us the stairs, and limit his activity. He was not a man to sit still, therefore he fell a lot and we had to modify our home to fit his needs. He could no longer drive, and took public transportation to and from work. The simple task of walking the dog became impossible for a man who loved to run.

April 27th, 2010, Don had become so desperate for relief of his symptoms and seizures that he chose to move ahead with a second brain surgery. He worked up until the day of his surgery, and went into the hospital like a runner in a marathon. He had fear and anxiety, but his resilience was all you could see. Don came through the surgery, went into rehab and eventually came home after a month and half in the hospital. While in the hospital the pathology came back and the small tumor that Dr. Q removed was indeed Glioblastoma Multiforme. When the cancer got worse, we felt like a knife had ripped opened our hearts and tears fell from our faces. Looking at resources, I knew from the diagnosis that Don would not live longer than 6 months.

He worked so hard to try to build his muscles back on his right side so he could walk independently. He got speech therapy, OT, PT, and saw whomever he could to help him regain strength. He went on different research trials, got more chemo, and took more medication, all the while knowing his disease was literally taking over his body and mind. He began to see his world differently and became confused with simple items that he had always known. . At one point, he picked up his cell phone and said, “What do I do with this?” That is when I knew the disease was doing some terrible things to his mind that I could only see the effects of. Family came in to help, because Don could not be left alone in fear of him falling or hurting himself.

Don never returned to work, and his passion of running was no longer the passion that drove him. His drive was to wake up every day, find his smile and enjoy the smallest things in life. He began to reside in the fact that the disease was taking over his brain and body. We had no choice but to allow hospice into our lives. This was the beginning of the most difficult days ahead. The challenge of knowing he would die from a disease that has no cure became unbearable at times. Don lost all independence, the one ability he prided himself in. Don could barely communicate, but his communication was through his smile and eyes. I was his full time caregiver, bathing him, helping him in every way and watching this man deteriorate before my eyes.

Surrounded by family, Don died with dignity and grace on December 27th, 2011. It was a day of great loss, and our hearts are saddened by what this disease does to a healthy individual. The battle to just wake up every day became the hardest battle of Don’s life. Through all the suffering, challenges and difficulties, Don smiled and showed a heart full of gratitude for all the people who have journeyed with him through brain cancer.

Why should there be awareness? Awareness in all dimensions of this illness is very important, because caregivers, family members, and the patient need to know the general stages of such a disease. Reality is hard, but the patient and caregiver are living through the reality every moment of the day. Research is so important because of the physical, mental and the emotional toll brain cancer takes on individuals and family. It is very sad to watch a person with life begin the slow process of death due to the cells invading their brain. Finding symptom control medications, and one day a cure, will certainly keep the disease at a distance from individuals who suffer.

- Dana