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A Childhood Interrupted by Brain Cancer

Written by Anna Blackwell, Ganglioglioma survivor and Ambassador for Childhood Cancer Awareness Month

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September 5, 2023

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BFTC Categories

Emotional
Medical
Relational

Journey Phase Categories

Emotional - Building confidence
Emotional - Getting from good to great
Emotional - Lack of Resources
Emotional - What Ifs
Medical - Diagnosis
Medical - Ending Treatment
Medical - Exploring Options
Medical - Management
Medical - Post Treatment
Medical - Treatment
Medical: Astrocytoma
Medical: DIPG
Medical: Ependymoma
Medical: Glioblastoma
Medical: Glioma
Medical: Medulloblastoma
Medical: Metastatic
Medical: No Pathology Yet
Medical: Recurrence
Relational - Finding Rhythm
Relational - The Overload
Relational - What If's

Topic Categories

Emotional: Caregiver - Emotions Felt
Emotional: Caregiver - Loss of Self
Emotional: Maintaining Hope
Emotional: Mental State During the Journey
Emotional: Patient - Loss of Self
Emotional: Patients - Emotions Felt
Emotional: Tools for the emotional journey
Medical: Alternate Treatments (Outside SOC)
Medical: Comfortability with Medical Team
Medical: Diet & Maintaining Daily Life
Medical: Ending Treatment
Medical: Finding your Medical Team
Medical: Healthy Coping
Medical: Information Overload
Medical: Standard of Care (SOC)
Medical: Tumor Types
Medical: Understanding Brain Tumors
Relational: Approach to sharing the journey
Relational: Caregiver - Communicating with support system
Relational: Caregiver - Understanding the Relational Aspect of the Journey
Relational: Challenging Topics
Relational: Finding Outside Support
Relational: Patient - Communicating with support system
Relational: Patient - Understanding the Relational Aspect of the Journey
Relational: Struggling to sharing the journey

Subtopic Categories

E: Anticipatory Grief
E: Art & Music
E: Balancing hope with reality
E: Being in Nature, Gardening, and Hiking
E: Caregiver - Asking for help
E: Caregiver - Balancing care and self
E: Caregiver - Balancing my obligations
E: Caregiver - Embracing the time we have left
E: Caregiver - Guilt of having a life outside of caregiving
E: Caregiver - Navigating anger & fear
E: Caregiver - Navigating what-ifs
E: Caregiver - Overcoming anxiety
E: Caregiver - Watch and wait feelings
E: Embracing new caregiver identity
E: Embracing new patient identity
E: Exercise & Fitness
E: Finding a therapist/counselor
E: Finding Support Groups
E: Finding support in Community
E: Finding support in Group Counseling
E: Finding support in Social Media
E: Finding support in Support groups
E: Focusing on the positive
E: Grief and Losing a Loved One
E: How to maintain hope
E: Journaling
E: Leaving A Legacy
E: Mental Health
E: Patient - Believing the diagnosis and overcoming anxiety
E: Patient - Focusing on the fight ahead
E: Patient - Navigating anger & fear
E: Patient - Navigating what-ifs
E: Patient - Watch & wait feelings
E: Patient – Embracing the time we have left
E: Patient- Survivors guilt
E: Prioritizing yourself as a person over identity as a patient
E: Regaining a sense of self as a caregiver
E: Regaining a sense of self as a patient
E: Spiritual Guidance (Prayer, Meditation, etc.)
E: Support Services
M: Appointment Expectations
M: Astrocytoma
M: Brain Tumor 101
M: Brain Tumor Organization 101
M: Clinical trials 101
M: Cognitive function with brain cancer
M: Confidence in Medical Team
M: Daily Living with a Brain Tumor
M: Deciding on a Medical Team
M: Diet with a Brain Tumor
M: Diffuse Intrinsic Pontine Glioma (DIPG)
M: End Stage Care
M: Energy levels with a brain tumor
M: Ependymoma
M: Exercise with a brain tumor
M: Fostering more open dialog with healthcare team
M: Glioblastoma
M: Glioma
M: Knowing when you have a solid medical team
M: Managing Information Overload
M: Medical 101 Information
M: Medical Team Communication 101
M: Medulloblastoma
M: Metastatic
M: Palliative Care
M: Potential side effects of treatment and management tips
M: Questions for Medical Team
M: Recurrence
M: Scans and Tests 101
M: Second Opinions
M: Stable Condition
M: Standard treatment options
M: Symptom Management
M: Tips to Effectively Managing Information
M&R: Insurance
R: Caregiver - Frustration with cognitive impairments
R: Caregiver - Having outlets and asking for help
R: Caregiver - Relationship Changes
R: Caregiver - Struggling to relate with others
R: Caregiver - Topics to discuss with the patient you care for
R: Caregiver burnout
R: Caregiver- Creating healthy communication with the patient you care for
R: CaringBridge
R: Family Planning
R: Financial & Estate Planning
R: General - Asking For Help
R: Hospice
R: Inviting people into the journey 101
R: Meal Train
R: Medicaid
R: Medicare
R: Patient - Creating healthy communication with your caregiver
R: Patient - Intimacy/sexuality
R: Patient - Loss of Independence
R: Patient - Not feeling understood
R: Patient - Relationship changes
R: Patient - Self-esteem/Body Image
R: Patient - Stigmas
R: Patient - Topics to discuss with your caregiver
R: Sharing the diagnosis
R: Sharing the journey with your solid support system
R: Sharing with Children
R: Sharing with Close Friends
R: Sharing with Co-Workers
R: Sharing with Immediate Family
R: Sharing with nosey people and intrusive acquaintances
R: Sharing with relatives
R: Short & Long Term Disability
R: Social Security
R: Social Security Disability Income

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