The Brain Injury Alliance of Kentucky welcomes you. We define brain injury as any infjury to the brain including infjury received from a fall, a stroke, trauma, anoxia, infection, BRAIN TUMORS or other illnesses. There is always help available to you and your family. BIAK is a non-profit 501(C)(3) organizations based in Louisville, Kentucky. Our sole mission is to serve Kentucky through advacacy, education, prevention, research, service and support.
The Michael Quinlan Brain Tumor Program is dedicated to empowering those persons who have been affected by brain tumors. The MQBTF Program provides support through educational, emotional, financial, and spiritual services.
The Michael Quinlan Brain Tumor Foundation was a 501(c)(3) non-profit organization based in Lousiville, Kentucky. The Foundation was formed in April of 2001 in memory of Michael J. Quinlan. Michael passed away from an aggressive cancerous brain tumor called Glioblastoma or commonly referred to as a GBM. He lived for a short 10 1/2 months after diagnosis and was 45 years old when he passed. Receiving so much hope, encouragement and comfort from family, friends and the community at large, the family wanted to return the goodwill. The Michael Quinlan Brain Tumor Foundation was created to give back and build hope for others on the same path.
The Michael Quinlan Brain Tumor Foundation has merged with the Brain Injury Alliance of Kentucky. We welcome you to our netwok of friends and family sharing hope and providing support. Cindy Rosser, the support coordinator for The Michael Quinlan Brain Tumor Foundation Program meets with patients in the hospital, coordinates support groups and provides information and resources. You can reach her at cindy.rosser@biak.us or call her directly at 493-0609 x 27.
The Michael Quinlan Brain Tumor Foundation Program/Services:
Educational
*Disseminates information regarding National Brain Tumor Centers and Organizations
*Advocates for public awareness and healthcare reform for brain tumors
*Maintians a free library of brain tumor specific materials
*Conducts internet seracher for new innovaions in brain tumor care including current clinical
trials and informs its members
*Provides basic "How To..." resources for patients and caregivers
Emotional
*Provides brain tumor support groups for patients, survivors and caregivers
*Conducts grief support sessions for individuals and groups
*Offers caregiver support for individuals and in group sessiosn
*Conducts in home visits for patients, survivors and caregivers
*Offers couseling services for individuals or in a family setting
*provides individual on-line and phone support
Financial
*Assists with financial aid in Kentucky and Southern Indiana
*Informs patients, family and caregivers of national and local resources for financial assistance
Spiritual
*Offers pastoral care counseling for individuals or in a group setting
*Provides non-denominational printed materials and books
Brain Tumor Quick Facts
*There are over 600,000 people in the US living with a primary brain tumor and over 28,000,ofthese cases are among children under the age of 20. 1
*Metastatic brain tumors (cancer that spreads from other parts of the body to the brain) occur at some point in 20 - 40% of persons with cancer of the brain tumor. 2
*Over 70% of all reported primary brain tumors in the US are amoung children under the age of 20.3
*Each year approximately 210,000 people in the US will be diagnosed with a primary or metatatic brain tumor. That's over 575 people a day:
*An estimated 62,930 of these cases are primary malignant and non-malignant tumors. 3
*The remaining cases are brain metastases (cancer that spreads from other parts of the body to the brain).
Among children under age 20, brain tumors are:
the most common form of solid tumor 2
the second leading cause of cancer-related deaths, following leukemia 2
the second leading cause of cancer-related deaths among females 4
*Among adults, brain tumors are:
The second leading cause of cancer-related deaths among males up to age 39 4
The fifth leading cause of cancer-related deaths among women ages 20-39 4
*There are over 120 different types of brain tumors, making effective treatment very complicated.
*Because brain tumors are located at the control center for thought, emotion and movement, their effects on an individual's physical and cognitive abilities can be devastating.
*At present, brain tumors are treated by surgery, radiation therapy, and chemotherapy, used individually or in combination.
*No two brain tumors are alike. Prognosis, or expected outcome, is dependent on several factors including the type of tumor, location, response to treatment, an individual's age, and overall health status.
*An estimated 35% of adults living with a primary malignant brain or CNS tumor will live five years or longer.2
*Brain Tumors in children are different from those in adults and are more often treated differently. Althugh over 72% of children with brain tumor are often left with long-term side effects. 2
*Symptons of a brain tumor can include headaches (recent, new, or more severe than usual), seizures (in a person who does not have a history of seizures) cognitive or personality changes, eye weakness, nausea or vomiting, speech disturbances, or memory loss. While these are the most common symptoms of a brain tumor, they can also indicate other medical problems.
Sources:
1 CBTRUS (2008). Stataistical Report: Primary Brain Tumors in the United States, 2000-2004. Central Brain Tumor Registry of the United States Hindsdale, IL. website www.cbrtus.org.
2 Soffietti, R., Ruda, R., & Mutani, R. (2002). Management of Brain Metastases, Journal of Neurology. 249 (10), 1357-1369. doi:10. 1007/s00415-002-0870-6
3 CBTRUS. (2010). Statistical Report: Primary Brain Tumor and Central Nervous System Tumors Diagnosed in the US, 2004-2006. Central Brain Tumor Registry of the United States, Hindsdale, IL. website www.dbtrus.org.
4 Jermal, A., Siegel, R., Ward, E., et al. (2009) Cancer Statistics, 2009. CA: A Cancer Journal for Clinicians, 59, 225-249.doi: 10.3322/caac.2006
Frequently Asked Questions From the Newly Diagnosed
What will happen to me?
What will happen to my family?
Will I recover?
Will life be "normal" again?
How will I/we manage financially
Should I get another opinion?
What are my options for treatment?
How much should I talk about with family and friends?
WHY did this happen to me?
The truth is, not even your doctor can tell you exactly what will happen to you in the long term, or how you'll recover from surgery or other treatement procedures. Everyone is different depending on the type, size and location of their brain tumor, and their general health, regardless of age. Brain tumors do not discriminate. They're "smart" because of the blood brain barrier and are often not detected until symptoms are prevalent. Cognitive, emotional, behavioral and physical deficits vary from person to person, from mild to severe.
Though a person may appear to be 100% recovered from surgery and treatment, that person knows something in "not right". Only you will know. Medications are most often needed long term for brain tumor survivors. Steroids, anti seizure drugs and antidepressants are common. Finding the right medication/s can be trial and error. Work with your doctor and be patient with yourself. Find your support network, pray and hang on for the ride! Things will change. That much is for sure. It's up to you to carry a positive, hopeful outlook and do only what you can on any given day, always striving for more. Be good and patient with yourself and others. Your family and friends will take their cues from you.
It is highly recommended that you seek a second opinion, jusst to be sure your satisfied with your doctor and plan of care. Ask about your options. Surgery? Radiation? Chemotherapy? Stereotatctic Radiosurgery? Meidcations? Other treatment centers? Your doctor iwll tell you the best protocolfor your particular tumor type and in general what to expect as far as side effects and time span of recovery. You have the option of seeking complimentary treatments that will help you feel your best in recovery, but never without your doctor's cooperation. treatments like light touch, message, reflexology, and nutritional enhancements can help you feel better. Educate yourself as much as possible before surgery or other treatment.
Be open and hoest iwth your friends and family. That will help them partner you better on your brain tumor journey. As much as possiblre, have your affairs in order before surgery or other treatment begins. This will give you and your family peace of mind. Living wills, trusts, finance plans, etc. are essential. If you are under financial stress, see a care manager or case worker at your hospital or treament center, of local social services. Keep your medical records iwht you. Ask for copies, They can be transferred to a medical ID USB data card, which will be easily accessible to your doctors offices and hospital admitting department. Log questions for your doctor and don't be afraid to ask. The more prepared you are, the better you and your family will manage.
Talk, talk, talk. choose a counselor, spiritual mentor, trusted friend or someone with a like diagnosis. Seek out support groups and organizations, like us (BIAK), that will offer you supportive fellowship, local and national resources you need to navigate the "system" and get the help you seek in every facet of your need. There ae plenty of resources to ehlp you and your family rise about hardship and adjust to a new "normal". There's no need to travel your brain tumor journey alone. We can't tell you why this happened to you. There are many suspect causes. You have a brain tumor becuase you are human. Flesh and blood. Remember, your diagnosis is not a dealth sentence. Live life fully in each moment. Your journey may be rough, but you are never alone.
Cindy M. Rosser, M. Div.
Family Outreach Coordinator
Brain Injury Alliance of Kentucky
Michael Quinlan Brain Tumor Program
