Mukulam Family Support Group
Malabar Cancer Centre (Post Graduate Institute of Oncology Sciences & Research) 

The Mukulam Family Support Group at Malabar Cancer Centre, Thalassery, was established with the primary goal of providing care and comfort to children affected by cancer and their families. The group's core objective is to offer emotional, psychosocial, and other support like academic continuity to families navigating the challenges of cancer. By creating a supportive environment, the Mukulam Family Support Group aims to alleviate distress and improve the overall well-being of both the children and their parents throughout their cancer journey. 

Beneficiaries
Children with cancer and their families getting treatment in the Pediatric oncology division at MCC(PGIOSR) 

Activities
●    Regular supportive group meeting 
●    Advocacy
●    Annual meeting involving Survivors
●    Special programs 
●    Birthday programs 
●    Movie show 
●    Public Awareness 
●    Association with NGOs 
●    Survivor Clinic and Rehabilitation
●    Mukulam Fund 

Support Group Meetings

The Mukulam Family Support Meeting provides care and comfort to children with cancer and their families. Facing cancer is hard for everyone involved, and our goal is to ease the emotional stress by offering a safe space for families to share their feelings and experiences. This group helps children and parents connect with others who understand their struggles, offering support and encouragement. It’s a place to express emotions, share challenges, and find comfort from others in similar situations. We aim to reduce feelings of isolation and help families cope better. In the end, the Mukulam Family Support Meeting is about creating a community where families can find strength, hope, and comfort during this difficult time.

Meeting Sessions 
●    Session 1 - Parent orientation session
●    Session 2 - Parent support group session
●    Session 3 - Child support session
●    Birthday program

Responsibilities 
●    The Doctor/Nurse lead session 1
●    Social worker and Psychologist will be leading the session 2 and 3
●    Other team members like dietician and nursing staff will help in session 3

Timing: Monthly once - 3rd Thursday 

Venue: Conference Hall, Pediatric Hematology Oncology Block

Advocacy

In pediatric oncology, the journey of a child battling cancer is not only challenging for the patient but also deeply overwhelming for their families. Parents often face emotional, financial, and systemic struggles while seeking the best possible care for their children. In this context, parents' support groups play an essential role, not just as sources of comfort but also as platforms for advocacy. By sharing experiences, providing information, encouraging research, collaborating with organizations, and offering peer mentoring, these groups make a significant impact. 
One of the most important contributions of parents' support groups is the sharing of experiences. Families coping with a child’s cancer diagnosis often feel isolated and misunderstood. Through these groups, parents connect with others who have faced similar challenges, finding emotional solace and practical advice. Hearing stories of resilience and success can inspire hope and give families the strength to navigate their own journey. This sense of solidarity fosters a community that supports and uplifts its members.
Another critical role of these groups is providing information. For many parents, understanding the complexities of pediatric oncology can be daunting. Support groups act as valuable resources, sharing knowledge about treatment options, clinical trials, and financial assistance programs. This collective wisdom empowers parents to make informed decisions and become strong advocates for their children’s care. It ensures that no family has to face these challenges alone or uninformed.
Collaboration with organizations further strengthens the advocacy efforts of parents’ support groups. By working with nonprofits, healthcare providers, and policymakers, these groups amplify their voice and influence. They raise public awareness about childhood cancer and lobby for policies that improve access to care and resources for families. Such partnerships enhance the group’s ability to create meaningful change at both individual and systemic levels.
Peer mentoring is another cornerstone of parents’ support groups. Experienced parents guide and support families who are newly navigating the diagnosis and treatment process. This mentorship provides emotional reassurance and practical advice, helping families feel less overwhelmed. It also builds a strong network of advocates who work together to address the unique challenges of pediatric oncology.

Mukulam Annual meet

 The annual meet-up is a vital aspect of the group's efforts to improve coping mechanisms and reduce stress. By connecting children and parents who are in different stages of treatment, the event fosters a sense of solidarity. Survivors share their stories of triumph and resilience, inspiring those still undergoing treatment. It helps families realize that recovery is possible and that there is always hope, even in the darkest moments. The annual meet-up serves as a reminder of the power of community and the importance of coming together to support one another. For children, survivors, and their families, it is an opportunity to heal, grow, and share in the hope that cancer can be overcome. Mukulam Family Support Group provides invaluable support to children and families affected by cancer. Through its annual meet-up, the group helps to improve coping strategies, foster adaptability, and reduce stress, ultimately empowering families to better navigate their cancer journey. By offering a space for emotional connection and healing, the Mukulam Family Support Group plays a critical role in ensuring that children and their families are not only supported during treatment but also given hope for a brighter future.

Participants 
●    Survivors and their parents
●    Children on treatment and families
●    MCC team
●    Supporting NGOs

Responsibilities 
●    The social worker will be leading the program
●    Other team members like dietician, psychologist and nursing staff will help in the whole session. 

Program 
Session 1 
    a.    Inauguration of the event 
    b.    Cultural events of children, parents, staff
    c.    Experience sharing of survivors parents and children 
    d.    Christmas celebration 
Session 2 
      Game session for family  

Timing: Annually during Christmas Vacation 

Venue: Seminar Hall, MCC

Special celebrations

One of the significant aspects of the Mukulam Family Support Group is its commitment to fostering a sense of community through the celebration of special occasions. Following events are marked with enthusiasm and joy.

• Doctor’s Day
• Nurses’ Day
• Nutrition week
• Onam
• Women’s Day
• Father’s Day
• Independence Day
• Childrens Day

These celebrations provide an opportunity for families to momentarily shift their focus from the challenges of cancer treatment and immerse themselves in moments of happiness and togetherness. By organizing such events, the support group not only promotes emotional well-being but also strengthens the bonds between families, creating a network of mutual care and encouragement. These shared experiences remind the children and their families that they are not alone in their journey, instilling hope and resilience in their fight against cancer.

Responsibilities: The social worker and Psychologist will be leading the programs

Birthday Program

During each parent support group meeting, we celebrate the birthdays of children whose birthdays fall within the same month, providing them with birthday cake and gifts to bring joy and encouragement during this difficult time. This celebration helps create a positive and uplifting atmosphere, allowing both the children and their families to feel happier, more comfortable, and supported as they navigate their challenges together.

Responsibilities: The social worker and Psychologist will be leading the programs.

Movie Shows

A weekly movie screening is organised for children affected by cancer and their parents. In addition, IPD and OPD patients are included in the movie show under the guidance of doctors. Doctors assess the condition of the children in the IPD and select those who can participate in the movie show and all nearby patients are participating.  The screenings take place every Thursday in the pediatric block of MCC Hospital. The purpose of these movie screenings is to foster a sense of togetherness and help children reduce their distress in a relaxed and comforting environment.

Responsibilities 
●    Social worker will be arrange the show 
●    Other team members like dietician and psychologist  will help in arrange the movie show  

Participants and Time
●    Time: The movie takes place every Thursday at 2 PM in the pediatric block of MCC hospital.
●    Participants;
       a.    The Nearby childrens and parents participate in the movie show 
       b.     IPD patients and their families participate  -  Doctors assess the condition of the children in the IPD and select those who can participate in the movie show 

Public Awareness 

Public awareness programs play a crucial role in breaking the stigma and ignorance surrounding childhood cancer. February 15, marked as International Childhood Cancer Day, is a global initiative to shine a light on this issue. It serves as a reminder of the importance of early detection, proper treatment, and emotional support for affected families. Similarly, September, recognized as Cancer Awareness Month, provides another opportunity to amplify the voices of children and their parents while educating society about the realities of living with cancer.

During these awareness campaigns, support group organize events in various locations using creative and engaging methods. These include educational sessions, fundraising activities, art exhibitions, and public seminars. Social media campaigns and community outreach programs further extend the reach of these initiatives, ensuring that more people understand the importance of standing in solidarity with children and families affected by cancer.

Awareness programs not only educate society but also inspire collective action. They encourage individuals, communities, and organizations to contribute to cancer research, provide financial assistance to families, and advocate for better healthcare policies. They also help dispel myths and fears, replacing them with empathy and understanding.

Childhood cancer awareness is not just about shedding light on a disease but also about empowering children and their families to face their challenges with hope and resilience. Through the efforts of support groups and public campaigns, society can work together to create a brighter future for children affected by cancer. Let us unite on International Childhood Cancer Day, during Cancer Awareness Month, and beyond to show that no family battles cancer alone. Every step taken toward awareness brings us closer to a world where children with cancer can thrive.
 

Associating with NGOs

Several NGOs collaborate to provide comprehensive support to children with cancer and their families. Each organization plays a unique role in addressing specific needs:

1. Hope Child Cancer Care Foundation: This foundation provides two dedicated staff members, including a pediatric psychologist and a social worker, to offer mental health support and guidance to children and their families. Additionally, it arranges stay support for families during the treatment period, ensuring they have a safe and comfortable place to reside.

2. Cuddles Foundation: Focused on nutrition, the Cuddles Foundation provides dietitians and essential supplements to support children’s nutritional needs during their treatment, enhancing their overall well-being and recovery.

3. CanKids: This organization plays a critical role in offering financial assistance to families, helping them cope with the often overwhelming costs of cancer treatment.

4. Kannur  Cancer Control Consortium (KCCC): Volunteers from KCCC offer various supports, providing a comforting presence to both children and their families.

5. Dreams Foundation: To ensure continuity in education during treatment, the Dreams Foundation provides teachers who work closely with children, helping them stay engaged in their studies and maintain a sense of normalcy.

6. Other NGOs: Various other organizations extend their support in different ways, contributing to the holistic care of children undergoing treatment for cancer.

Through this collaborative approach, the support group and partnering NGOs address the diverse needs of children and their families, ensuring they receive comprehensive care. This collective effort not only eases the burden of the cancer journey but also empowers families with the resources, guidance, and emotional strength they need to navigate this challenging time.
 

Survivors Clinic and Rehabilitation 

Support does not stop when treatment ends. After two years of completing treatment, children are enrolled in a survivors’ clinic. In this clinic, we monitor their progress and collect important information about their health. This helps us understand how to better care for survivors in the future. The support group also helps children recover after cancer treatment. Rehabilitation programs are provided to help survivors regain their strength and confidence. These programs make it easier for them to return to normal life. Survivors also play an important role in helping others. They help organize programs and give support to children who are still receiving treatment. Their stories give hope to children and families, showing that recovery is possible.

Mukulam Fund

A separate fund is set up in MCC-PGIOSR to improve the care of children with cancer in various domains. It can help the children in the following way.  
1.    To help the children and their families in various domains during and after treatment through activities mentioned below
2.    To improve the care by enhancing infrastructure/ manpower
3.    To allocate fund for research/training which can improve the treatment

To help the children and their families in various domains during and after treatment

Activities presently done at MCC which require support
1.    Parent support group (Mukulam) meeting - Monthly
2.    Monthly birthday program
3.    Annual meeting
4.    Childhood Cancer Day program for public awareness
5.    Programs on special occasions like Onam, Christmas

Activities planned in future at MCC which require support
1.    Educational support
2.    Rehabilitation support
3.    Accommodation support
4.    Treatment support for children ineligible for Govt schemes (like out of state)
5.    Skill development programs for survivors
6.    Picnic/Outing of kids
7.    Grant a wish program

Other uses
1.   Providing Medical equipment
2.   Supporting life saving medicines

To improve the care by enhancing infrastructure/ manpower

Enhancing infrastructure
  1.   To enhance infrastructural requirements to improve patient care
  2.   To enhance infrastructural requirements to improve child-friendly environment
 Enhancing manpower resources
  1.  The payroll of additional health care or supportive care staff
  2.  Facilitating capacity building of health care providers

To allocate fund for research/training which can improve the treatment

1. To facilitate research in the field of pediatric oncology 
   a.    Providing grant support
   b.    Providing IEC fee, publication charges
   c.    Providing a trial coordinator
2. To Facilitate training of health care providers involved in pediatric oncology
   a.    Conducting conferences in the field of pediatric oncology
   b.    Sponsoring the logistics of attending national/international conferences

Account Details

MALABAR CANCER CENTRE SOCIETY CHILD CANCER CARE FUND

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