The AYJ Fund was proud to be a sponsor of this conference. Leading medial specialists and researchers presented research findings and GC families and foundations collaborate to plan future support for patients and research next steps.
The research was exciting, the discussions impactful. We have lots of work to do before our next conference in London in 2025.
Once Upon a dream
Children's Princess Concert
was a dream come true!
Where to get care for Gliomatosis Cerebri?
As with all pediatric cancers, care should be delivered at specialized centers where multidisciplinary teams can provide not only expert diagnostics and experienced medical, surgical and radiation oncologists, but also psychosocial support, neuro-psychological testing and specialized school plans, all delivered in a child- and family-sensitive and friendly environment.
Our personal experience was at Dana-Farber Cancer Institute / Children’s Hospital Boston. We received the very best medical care available from a complete team of brilliant and caring professionals and highly recommend this facility. We had the availability of multiple treatment options, access to the most recent research options and support for our medical, social, emotional, and financial needs. Mark Kieran MD PhD Director of Pediatric Neuro-oncology was involved in Anna's care. Kathy Warren MD PhD is now Director of Pediatric Neuro-oncology at Dana-Farber
Pediatric NeuroOncologists - Not all hospitals have Pediatric NeuroOncologists who specialize in Brain Tumors. You want to be treated by a Pediatric NeuroOncologist. They specialize in treating brain tumors and therefore have a greater opportunity to have more experience and the ability to stay more current with research and treatment options.
Support services / programs for children and / or teens – the social and support aspects of treatment are very important in addition to the clinical treatment you/your child will receive. It is important for many to be able to meet others and have a support network. Most major cancer treatment centers will have age appropriate support programs, as well as psychologists and psychiatrists to support the emotional burdens of this difficult disease.
Availability of Clinical Trials – not all patients will respond to the standard treatments of radiation and traditional chemotherapy. You want to be in a treatment center which offers you the option of Clinical Trials of new treatment options that are not yet approved by the FDA. You may decide not to opt in to a Clinical Trial, but these are the facilities which make these options available to you.
Hospital’s participation in one or more national programs of collaborative research such as:
The Children’s Oncology Group (COG), a National Cancer Institute supported clinical trials group, is the world’s largest organization devoted exclusively to childhood and adolescent cancer research.
Pediatric Brain Tumor Consortium, a group of 11 institutions in the United States investigating novel approaches to the treatment of this and many other types of brain tumors.
Pediatric Oncology Therapeutic Experimental Investigators Consortium (POETIC), a collaborative clinical research group offering experimental therapies to patients with relapsed or refractory disease.
Availability of MRI machines in the OR – this is not available in many hospitals yet, but is becoming more available. Having an MRI in the Operating Room allows the Neurosurgeon the ability to check the location of a tumor, plan the best approach to a tumor in a difficult location, as well as in a non-infiltrative tumor, being able to check that the tumor is fully removed.
Additional Specialists and Complementary or Alternative Medicine - Many specialized brain tumor treatment centers have now added experts in complementary or alternative medicine (CAM). These treatments, including acupuncture/acupressure, therapeutic touch, massage, herbs and dietary recommendations, can also help to control pain and side effects of therapy. Talk to your child’s physician about whether CAM might be a viable option of treatment.
You may also find the services of Physical Therapists, Occupational Therapists, Speech Therapists (for swallowing issues) and Dietitians to help with nutrition and feeding issues. Music and Art Therapists are also available through many Visiting Nurse Associations, Palliative Care Programs and InPatient Programs.