Resources
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The Milton Marks Family Camp
Frequently Asked Questions
1
Who can attend?
Families being treated at UCSF Adult Neuro-Oncology clinic with children living at home are invited to apply. Camp is designed to allow patients, their spouses and their children to connect with others living with a similar disease.
2
How much does it cost?
Camp is free! The Milton Marks Neuro-Oncology Family Camp is provided without charge to patients, their spouses and children.
3
When and where is camp?
Camp is held in the Fall, after the start of the school year. Dates are publicized far in advance to provide an opportunity to plan ahead.
4
What are the accommodations for families? Are meals provided?
Each family has their own room or cabin at camp, with access to a private bathroom. Healthy meals and snacks are all provided (allergies and dietary restrictions are taken into account).
5
What do we need to bring?
We will provide you with a complete packing list a month or two before camp.
6
Does my entire family have to attend?
Yes. The camp experience is designed around every member of your family (living at home) attending camp.
7
Must we stay for the entire camp or can we arrive late or leave early due to work/school?
The ability to attend for the entire camp session is a pre-requisite for attendance. Camp is designed as a multi-day experience and so families are strongly encouraged to arrive as specified and stay until the conclusion of the camp.
8
What if the patient's health declines during camp?
Members of the UCSF Neuro-Oncology medical team are on staff 24/7 during the camp. They are available to triage changes in a patient’s clinical condition and make recommendations regarding new symptoms. Paramedics would be called for a serious change in condition and if needed, patients would be transported to the local community hospital.
9
I'm interested in coming -- what's the next step?
If you haven't already, please contact Margaretta Page, Nurse Coordinator of the UCSF Gordon Murray Caregiver Program, at Margaretta.Page@ucsf.edu for information about next steps.
10
Who can we contact with more questions?
If you have further questions, you may also contact Abby Marks at MiltonMarksFamilyCamp@gmail.com.
Resources for
Brain Tumor Patients with Children
Groups and Camps
American Brain Tumor Society Careline
For more information contact
(800) 886-ABTA (2282) or visit www.abta.org.
American Cancer Society
For more information, contact
(800) ACS-2345 or www.cancer.org.
Camp Kesem
For more information contact
(260) 22-KESEM (5-3736) or www.campkesem.org
Cancer Support Community
For more information contact
(925) 933-0107 or visit Parenting through Cancer or Family, Friends and Teens
Circle of Care
Visit www.ebac.org or to see a PDF for Living with Illness Support Group
Kids Konnected
For more information contact
(949) 582-5443 or visit Kids Konnected.
Books for Adults
With thanks to the University of California, San Francisco Department of Neuro-Oncology for providing this list.
How to Help Children Through a Parent's Serious Illness
BY KATHLEEN McCUE
Offering supportive, practical advice from a leading child-life specialist, this book includes information such as what to tell a child about the illness, how to recognize early-warning signs in a child's drawings, sleep patterns, schoolwork and eating habits, and when and where to get professional help.
A Tiny Boat At Sea, How to Help Children Who Have a Parent Diagnosed with Cancer
BY IZETTA SMITH
This booklet is easy to use and touches on how to support children.
Can I Still Kiss You? Answering Children's Questions About Cancer
BY NEIL RUSSEL
A question and answer book written by a cancer patient who journaled the questions he was asked by his children during his cancer experience. Appropriate for all ages.
Cancer In the Family: Helping Children Cope with a Parent's Illness
BY NEIL RUSSEL
A question and answer book written by a cancer patient who journaled the questions he was asked by his children during his cancer experience. Appropriate for all ages.
When a Parent Has Cancer: A Guide to Caring for Your Children
BY DR. WENDY SCHESSEL HARPHAM
Practical advice along with a companion book for the kids entitled: Becky and the Worry Cup. Appropriate for parents with children ages 3 to 13.
Books for Children
With thanks to UCSF Benioff Children's Hospital's Child Life Department for compiling the following children's booklist.
Moxie
BY HARALD HERRMAN + SARAH NANCE
Helps children understand cancer and their feelings about their parent's cancer. Ages 4 to 12. Available through Kids Konnected. Call (800) 899-2866 or www.kidskonnected.org.
Kemo Shark
BY KIDSCOPE, INC.
A free downloadable cartoon illustrated book, featuring "Kemo" the shark who explains how chemotherapy works to fight cancer. Also available in Spanish. Ages 3 to 12. Available at www.kidscope.org.
When Someone Has a Very Serious Illness
BY MARGE HEEGAARD
A cartoon illustrated workbook for kids to color themselves to help them understand their feelings when their parent is ill.
Once Upon a Hopeful Night
BY RISA S. YAFFE
A bedtime tale to help comfort kids who are struggling with their parent's cancer. Ages 3 to 10.
Our Family Has Cancer Too!
BY CHRISTINE CLIFFORD
A cartoon illustrated book that describes a family's experience with cancer and how they coped. Appropriate for ages 3 to 16.
Butterfly Kisses and Wishes on Wings: When Someone you Love has Cancer
BY ELLEN McVICKER
The story is told through the eyes of a child. It also teaches children to realize the power they have to be an active and integral part of a loved one's cancer journey.
Sammy's Mommy Has Cancer
BY SHERRY KOHLENBERG
This book is appropriate as a bedtime story for toddler and pre-school ages, or as an early reader for elementary ages. Ages 2-5.
Our Mom Has Cancer
BY ABIGAIL ACKERMANN
Two sisters, ages eleven and thirteen, describe what it was like for them when their mother was diagnosed with breast cancer and underwent surgery and chemotherapy. Ages 10-14.
Mom Has Cancer!
BY JENNIFER MOORE-MALLINOS
Exposes a young boy's anxiety prior to learning his mother's cancer diagnosis, his ability to adapt to lifestyle changes with honest information and reassurance, and most importantly, his family's resumption of familial ways once treatment is completed. Ages 4-8.
When Someone You Love Has Cancer: A Guide to Help Kids Cope
BY ALARIC LEWIS
Great for young children to help them better understand cancer. Also wonderful for parents and loved ones to help them find the right words and strength. Provides step-by-step realistic outcomes.
Because…Someone I love Has Cancer
BY AMERICAN CANCER SOCIETY
Someone I Love is Sick
BY KATHLEEN McCUE
An activity book for exploring feelings about having a parent with cancer. Ages 9-12.
Appropriate for the very youngest children. Ages 2-6.
When Mommy Loses Her Hair:
It Means the Medicine is Working
BY CRISTEN CERVELLINI-CALFO
Provides advice on how to describe the steps involved in cancer treatment. This book simplifies complex vocabulary and delicately suggests how a child can get involved with a family member's care. Ages 4-8.
Resources for
Caregivers of Brain Tumor Patients
Provided and reviewed by health care specialists at UCSF Medical Center
American Brain Tumor Association
Provides caregiving information and support, including a PDF of the UCSF Orientation to Caregiving Handbook at this website.
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Cancer Support Community
Caregivers can get support and information at this website.
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Cancer Resource Center at the UCSF Helen Diller Family Comprehensive Cancer Center
Information about our Caregiver Peer Support Program can be found at this website.
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Elder Care Locator | U.S. Administration on Aging
Helpful information about long-term care planning and available benefits to seniors and the disabled at www.eldercare.gov.
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Employment Development Department State of California
PFL Information regarding California's Paid Family Leave program can be found at this website.
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Family Caregiver Alliance | National Center on Caregiving
Non-profit agency dedicated to supporting caregivers. Provides support and education as well as information on respite care with educational literature available on various caregiver topics. Information can be found at www.caregiver.org.
Click here for their practical tools and resource guide for caregivers.
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Help for Cancer Caregivers
A personalized self-care web tool for caregivers. Developed by CancerCare, Michigan State, Indiana University, Caregiver Action Network and Wellpoint.
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Lotsa Helping Hands/ABTA
My Caring Link web tool is a collaboration of the American Brain Tumor Association and Lotsa Helping Hands. Visit, www.lotsahelpinghands.com. This site helps you organize support and assistance among friends and family, on behalf of your loved one.
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Medicare's Home Health, Hospice, Durable Medical Equipment and Skilled Nursing Facility Locator
Get information at Medicare's website.
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Needy Meds
This non-profit organization provides listings of available prescription assistance programs. They have a prescription assistance programs database on the website.
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Net of Care
Caregiving resources provided by Beth Israel University Hospital/Albert Einstein College of Medicine.
The information and resources listed here are not intended to be an endorsement, nor are the listings all-inclusive. The resources are provided in hopes that they provide direction as you begin your search for support. Please check with the individual agencies for updated information.
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This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.
