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i have a 2 yr old dauthghter with brain cancer

By January 26, 2011 - 1:34am

for the past 6 months i havent slept through the night, not even once....i dont know what to do with myself anymore... people tell me.."its been 6 months ,you have to move on and live your life" but i just cant.. i cant move on from the fact that my daughter has brain cancer, never in a million years did i think that my baby would be the one, she has nausea, she has lost her hair, she does chemo every week and has to take 3 different medications every night, she cant go to birthday parties with lots of people due to her blood counts being unpredictable, her balance is way off and its very nerve wracking to bring her outside for fear the she will fall... she is always very pale and fragile looking and she is always very tired and she is very calm ..... on the other hand she is an amazing baby, she has always been very advanced, she knows how to count to 13 in english and 100 inn spanish and 3 in chinese, she also knows her abc's and what sound every animal makes, she is extremely funny and smart and very resiliant, i have an amazing child that teaches me what strength really is, and when she is awake and laughing i am okay, but when she falls asleep and im alone i stay up until 5am or whenever my body has had too much.... i fall apart at night and i am never truely happy, i love my husband dearly and he is always there for my daughter and i... it is hard to talk to other people that love hailey about her condition because we all just fall apart... i need to talk to someone, i need to talk to someone

By May 4, 2011 - 10:12am

My eyes well with tears for you as you are experiencing a nightmare in which you are awake to live through bit one thing struck me as important that you may not see within yourself Strength and the ability to see some good despite it all. You have every right to feel terrified and alone as your family has been tramatized,Just remember to continue to take care of yourself and breath.

May 4, 2011 - 10:12am
By HERWriter Guide January 28, 2011 - 10:53am

Hi Samantha

Thank you for your post and I have to say I can't even begin to picture where you are emotionally so I won't pretend to do so.

I am so sorry your beautiful little girl has brain cancer; cancer and young children should never go together but unfortunately, they sometimes do.

Hailey seems to be in the thick of treatment and we wish her the very best. Please keep us posted on how she's doing, anytime you can.

Samantha, what kind of support are you getting aside form you husband? Do you get to take breaks so that you can get some uniterrupted sleep? Sleep is crucial for both your physical and mental well-being. Do you have friends and family who can help?

In terms of emotional support, I think it's very normal to be almost ubable, physically, to talk about it. It's so raw, so frightening and so unknown, that even saying the words out loud can be overwhelming. Sometimes the only time you can express how you feel (aside from with your husband) is with other parents, and maybe especially mothers, who have children going through the same thing. Do you think you're ready to get into a support group like that?

Would you prefer one on one sessions with a therapist who specializes in helping parents going through this kind of situation?

Here is a link to list of support groups for families with children who have brain cancer (brain cancer is specified and the list is the last one) : http://www.acor.org/ped-onc/resources/supportorg.html

Additionally, Samantha, here are support groups for families who have children with cancer, in general, and you can click on their websites right here:

Candlelighters Childhood Cancer Foundation

PO Box 498
Kensington, MD 20895-0498(800) 366-CCCF

Founded in 1970, Candlelighters has more than 40,000 members worldwide. Some of the free services provided by Candlelighters are a yearly bibliography and resource guide, quarterly newsletter, and various handbooks to help families of children with cancer.

Candlelighters Childhood Cancer Foundation Canada

National Office
55 Eglinton Avenue E, Suite 401
Toronto, ON Canada M4P 1G8
(800) 363-1062 (Canada only)
(416) 489-6440

Provides some of the same services as US Candlelighters.

Alex's Lemonade Stand (ALSF)

Alex's Lemonade Stand Foundation
333 E. Lancaster Ave., #414
Wynnewood, PA 19096
(866) 333-1213

Alex's Lemonade Stand Foundation (ALSF) emerged from the front yard lemonade stand of cancer patient Alexandra "Alex" Scott (1996-2004). ALSF is now a national fundraising movement, raising more than $30 million and funding over 125 research projects. As of 2010, ALSF has expanded to providing free resources to help get families to treatment. Notably:

The Travel Fund program provides transportation, lodging and meal accommodations for families traveling to 20 major cancer institutions
A Treatment journal to help families stay organized and track appointments, side affects, medications, etc.
Annual Childhood Cancer Symposium.
An Answer Center that answers many questions related to treatment.
Patient Advocacy Committee of the Children's Oncology Group (PAC).

Missy Layfield
Patient Advocacy Committee
Children's Oncology Group
440 E. Huntington Dr. Suite 300
P.O. Box 60012
Arcadia CA 91066-6012
Email: cog-pac@cfu.net

American Cancer Society

1599 Clifton Road NE
Atlanta, GA 30329-4251
(800) ACS-2345

Has a national network of employees and volunteers who implement research, education, and patient service programs. Although programs differ according to state and province, some widely available programs are patient-to-patient visitation, transportation to appointments, housing near treatment centers, equipment and supplies, support groups, literature on a large variety of topics, summer camps for children with cancer, research and educational programs.

Canadian Cancer Society

565 W. 10th Avenue
Vancouver, BC Canada V5Z 4J4
(888) 939-3333 or (604) 872-4400

Provides some of same services as the US Cancer Society.

Childhood Cancer Ombudsman Program

P.O. Box 595
Burgess, VA 22432
Fax: (804) 580-2502
Email: gpmonaco@rivnet.net

This free service helps children with cancer and their families who are experiencing difficulties in gaining access to appropriate education, medical care, healthcare cost coverage, and meaningful employment. Services include medical library searches, a second opinion program, and help resolving problems with insurance or discrimination.

National Children's Cancer Society

The National Children's Cancer Society helps children with cancer and their families by providing financial assistance, advocacy, education, and emotional support.

The National Children's Cancer Society
1015 Locust, Suite 600
St. Louis, MO 63101
314.241.1600 (telephone) or 1-800-FAMILY
314.241.6949 (fax)

Children's Cancer Society Inc.

"Our mission is to provide financial support to families that have a child with cancer and the costs of the cancer treatments are causing financial difficulties. If your family is having financial difficulties do to a cancer illness, we maybe able to help. We can run special fundraising programs for you and try to raise money to help you."

Children's Cancer Society Inc.
765 Mountain Ave. Suite 368
Springfield, NJ 07081
908 - 301 - 9717
Children's Cancer Society

Starlight Starbright

Starlight Starbright helps seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities. Not cancer-specific. Good sections for teens (see Starlight Starbright on the teens page.)


Chai Lifeline


Chai Lifeline believes that seriously ill children (including children with cancer) need and deserve as happy and normal a childhood as possible. Their programs include: Camp Simcha, professional case management, learning programs, family retreats, insurance support service, wish granting, sibling support, and community services such as volunteer training. Families are invited to contact Chai Lifeline at 1 877 CHAI LIFE or email info@chailifeline.org for more information.

Emmanuel Cancer Foundation

Emmanuel Cancer Foundation

The Emmanuel Cancer Foundation (ECF) helps New Jersey families cope with the emotional, material and, in some cases, financial burdens that arise when struggling with a diagnosis of pediatric cancer.


CancerCare is a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance.

Gilda's Clubs

Different Gilda's Clubs have different programs for children with cancer and their families, but potentially a clubhouse could have groups for children and teens with cancer, groups for siblings, and groups for parents. Also a big part of Gilda's Club is workshops and classes - anything from art workshops to informational type things (like Ask the Doctor, Insurance Q & A, etc) and social events. Visit the Gilda's Club Worldwide website (www.gildasclub.org) and check if there's a Gilda's Club in your area, then call the individual clubhouse to find out what they offer.


I'm not sure where you live so I've included all the links. I know it's a ton of information so take your time to look into seeing what may be right for you. I also hope some other women here who have (or have had) children with cancer can join in this discussion.

Also ask in your hospital if there is a support group for mothers who have children with cancer; and ask Hailey's specialists. They usually have good information.

I really hope you can connect with others who can really understand what you are going through. If one on one therapy is what you'd prefer, we can look into that too.

Please let me know if this infomation helps you and I do hope you come back and talk with us more. The stronger you become, the stronger your whole family will become. We're always here for support too. We wish you, your husband and Hailey the very best and I look forward to hearing from you-
Our best,

January 28, 2011 - 10:53am

Group Leader

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