Coping with Desmoplastic Infantile Ganglioglioma Childhood Tumour Treatment

Executive Summary

Desmoplastic Infantile Ganglioglioma (DIG) Childhood Tumour treatments results into causing various side effects and alterations to the patient’s body. The results of treatment show variations as per the individuals. Sometimes the same treatment strategy used for a particular disease condition evolves with different effects. Hence, it is difficult for predicting the outcome and impact of a specific treatment. Therefore, coping-up strategies are adopted to mitigate the treatment’s side effects. Open communication with the expert regarding new signs or symptoms experienced by the patients helps plan ways to manage and relieve these symptoms and side effects effectively. The patients can seek professional therapies for mitigating the adverse emotional impacts during desmoplastic Infantile Ganglioglioma (DIG) Childhood Tumor treatment. General physical side effects of each treatment option for early-stage and locally advanced desmoplastic Infantile Ganglioglioma (DIG) Childhood Tumor are addressed by adopting supportive or palliative care provided by the healthcare team. Patients and their families are motivated to communicate with the medical team about their financial concerns.

Several services help patients manage such a group of people in treating desmoplastic Infantile Ganglioglioma (DIG) Childhood Tumor . Caregivers play an essential role in caring for a person with desmoplastic Infantile Ganglioglioma (DIG) Childhood Tumor . Effective communication of the patient with the healthcare team is maintained regarding the side effects.

Coping-up Treatment for Desmoplastic Infantile Ganglioglioma Childhood Tumor

Desmoplastic Infantile Ganglioglioma (DIG) Childhood Tumor treatments can cause various side effects and alterations to your child’s body. The effects of treatment vary from one individual to another. Sometimes the same treatment strategy used for a particular disease condition creates different effects. Hence it is hard to predict the outcome and impact of a specific treatment on people. So, coping with desmoplastic infantile ganglioglioma treatment side effects is important ​1​.

Children and guardians can feel anxious about treating a condition like Desmoplastic Infantile Ganglioglioma, which is quite natural. Side effects- short term or long term are an inevitable part of such treatments. Parents or guardians must know that managing and relieving symptoms and side effects is integral to treating childhood DIG or any disease condition. The health care team will devise strategies to prevent and cure possible side effects of treatment. And this is what is called supportive or palliative care. It is an essential, inevitable part of treatment, regardless of the tumor type, disease gravity, patient’s age or gender.

Coping with the physical side effects of Desmoplastic Infantile Ganglioglioma treatment

Treatment for Desmoplastic Infantile Ganglioglioma, Childhood Tumor can cause many physical side effects. It can bring a range of changes to your child’s body. The variations in your child’s physical health are influenced by factors like the type of tumor, its severity, treatment strategy used, the duration of treatment, and their overall health condition. Parents or caregivers should regularly talk with their healthcare team about their child is feeling. Make sure to let them know about any discomfort your child is experiencing. Openly communicate any new signs or symptoms to your doctor as and when your child starts experiencing them. The same applies to the case of any new or a change in existing side effects. Talking with your child’s doctor or healthcare team is vital, as only then they can plan ways to manage and relieve these symptoms and side effects effectively. Treating side effects and signs at the right time prevents your child’s condition from worsening and helps them lead a comfortable life. Please keep track of any body changes or side effects as and when your child experiences them, as it will help you explain the scenario more effortlessly to the health care team.

Physical side effects can be short term and long-term. Long term side effects or late effects can last for an extended period, even after the active treatment period. Treating these late effects forms a vital part of the survivorship care plan.

Managing the barriers to Desmoplastic Infantile Ganglioglioma treatment and care

Disease conditions can vary from one person to another. The outcomes of disease diagnosis and treatment can vary. There is no necessity for cases of similar disease conditions to share similar features. Such differences and variations can be called “health disparities.” Many communities and groups are denied quality medical care in the real world. The groups negatively affected include poor people, racial and ethnic minorities, LGBTQ+ or sexual and gender minorities, older adults, adolescent and young adult populations, and people belonging to rural areas etc.

If your child faces difficulty accessing quality treatment and care, communicate the concern with your doctor or health care team. They will provide or help you and your child find excellent services.

Coping with social and emotional effects of Desmoplastic Infantile Ganglioglioma treatment

Desmoplastic Infantile Ganglioglioma (DIG) Childhood Tumor and its treatment can take a tremendous toll on a child’s physical and mental well-being. It can also have a toll on the family members associated with the child. Children and their caregivers may experience many social and emotional effects after being diagnosed with DIG childhood tumors. Children and their family members will go through emotional and mental turmoil. They will find it tedious to manage emotions like grief, sadness, anger, anxiety. They will find it difficult to calm their mind and manage their stress level. Often people find it difficult to express their feelings and emotions to their close ones. In such cases, patients and caregivers can seek professional therapies. Talking with a counsellor or oncology social worker can also help effectively cope with the emotional effects of cancer.

Managing the costs of cancer care

Cancer treatment can be financially straining. This thought can create a lot of stress and anxiety in the patients and their family members. For many people, finance stands as a hindrance in seeking better treatment.

Some parents find that they had a lot of unplanned, extra expenses concerning their child’s treatment. And some people are forced to leave the treatment plan halfway because of are unable to manage the enormous cost. And such scenarios can have a very adverse impact on the child’s health and life. Hence, parents or guardians of children affected with disease conditions like Desmoplastic Infantile Ganglioglioma, Childhood Tumor are encouraged to talk about their financial troubles with a concerned health care team member. Today many services and packages can help tumor patients manage their treatment costs without much worry or tension.

Role of Caregivers

Parents/ guardians/ Caregivers play a significant role in taking care of a child/adult suffering from Desmoplastic Infantile Ganglioglioma, Childhood Tumor. Caregivers usually include family and friends who stand by the child from the beginning, i.e., from disease diagnosis, treatment until post-treatment care (sometimes even after that) ​2​.

Caregivers have a range of responsibilities to manage and fulfil daily:

  • Give emotional and physical support to your child. Encouraging them to do activities. Cheering them up.
  • Communicate with the health care team. Caregivers are urged to accompany the patients during appointments and keep track of everything the doctor prescribes and advice.
  • Giving food and medicines on time.
  • Help children cope with various symptoms and side effects of desmoplastic infantile ganglioglioma tumor. 
  • They should coordinate the child’s appointments with the health care team.
  • Managing the transport of the child for appointments.
  • Handling financial aspects like bills and insurance.
  • Helping the patient with household chores and other daily activities.

Communication with the health care team regarding side effects

Open conversations with the doctor are essential in treating childhood DIG tumours or other disease conditions. Parents or caretakers are encouraged to ask questions to the health care team or doctor regarding the side effects of treatment. They can ask:

  • What are the probable side effects of the desmoplastic infantile ganglioglioma tumour treatment?
  • Explain the short term and long-term side effects?
  • When are these side effects likely to happen, and for how long?
  • How can we prevent, manage and relieve them?  

Caretakers should make sure to communicate any change that their child is experiencing. Children should be encouraged to express even the tiniest effects or feelings that they are experiencing to the healthcare team.

Seek the help of the physician or health care team to create a caregiving plan. Caretakers must enquire how much care and support (physical, mental) your child will require at home. Don’t hesitate to ask anything that comes to your mind regarding your child’s treatment, side effects or post-treatment care.

References

  1. 1.
    Mallucci C, Lellouch-Tubiana A, Salazar C, et al. The management of desmoplastic neuroepithelial tumours in childhood. Child’s Nerv Syst. Published online January 10, 2000:8-14. doi:10.1007/pl00007280
  2. 2.
    Cutillo A, Zimmerman K, Davies S, et al. Coping strategies used by caregivers of children with newly diagnosed brain tumors. Journal of Neurosurgery: Pediatrics. Published online January 2019:30-39. doi:10.3171/2018.7.peds18296