Resources for patients and caregivers
Resources for patients and caregivers
Download-ready resources
When a child is diagnosed with cancer, it feels like a lot of things are coming at you at once. Downloading information to read when you’re ready can help when you’re overwhelmed.
Family stories
Watching the stories of people who have walked in your shoes may help you feel less alone as you make your way through your child’s diagnosis, treatment, and post-treatment care. Here are some videos from families like yours.
Colleen’s story:
When brain tumors strike twice
Katee’s story:
The real cost of hearing aids
Jenna’s story:
Strong-willed 5-year-olds and hearing aids
Links to advocacy groups
A child’s cancer can take a toll on the whole family. The groups listed below can provide support, advice, and education to help your family along the treatment journey.
Momcology is a 501(c)(3) nonprofit organization committed to extending the benefits of community by providing reciprocal (mutual giving and receiving) peer support models for childhood cancer families. Their mission: to empower and heal pediatric cancer families through the valuable resource of peer support.
The Coalition Against Childhood Cancer (CAC2) is a collaborative network of organizations and individuals supporting and serving the childhood cancer community. Their mission is to effectively advance a variety of childhood cancer causes by unifying the childhood cancer community through broad-based coordinated action and collaboration that leverages the strengths and expertise of its individual members and minimizes duplication of effort.
The Hepatoblastoma Resource Network is an organization whose mission is to provide a credible, consolidated, and current resource for the hepatoblastoma community by providing families, clinicians, and researchers with the latest medical efforts while empowering patient families through registries, trials, and research.
Named a Top 10 Medical Research Organization by Charity Navigator in 2018, Alex’s Lemonade Stand is a 501(c)(3) nonprofit organization whose mission is to change the lives of children with cancer through finding impactful research, raising awareness, supporting families, and empowering everyone to help cure childhood cancer.
IMPORTANT SAFETY INFORMATION
- Do not allow your child to receive PEDMARK if they have had a severe allergic reaction to sodium thiosulfate or any of the other ingredients in PEDMARK.
- Allergic reactions can happen with PEDMARK and can be serious and life-threatening. Your healthcare provider will monitor your child for allergic reactions during the PEDMARK infusion. Your healthcare provider will stop the infusion and provide treatment if your child has an allergic reaction. If your child has an allergic reaction, your healthcare provider will give your child certain medicines before each PEDMARK infusion. Tell your healthcare provider right away if your child has any of these signs of an allergic reaction: rash, hives (raised bumps), chest tightness, wheezing, trouble breathing, swelling of the face, lips, tongue, or throat.
- Changes in salt and potassium levels in the blood are common with PEDMARK but can also be serious. Your healthcare provider will do blood tests to check your child’s sodium and potassium levels before starting and as needed during treatment with PEDMARK. Tell your healthcare provider right away if your child develops any of the following signs or symptoms: feeling tired or weak, feeling restless, muscle weakness, seizures.
- Nausea and vomiting are common with PEDMARK but can also be serious. Your healthcare provider will give your child medicines before each PEDMARK infusion to help prevent nausea and vomiting.
- The most common side effects of PEDMARK include decreased red blood cells (anemia).
- These are not all the possible side effects of PEDMARK. Call your child’s doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Fennec Pharmaceuticals, Inc. at 1-833-336-6321.
Please see full Prescribing Information, including Patient Information, for PEDMARK.
WHAT IS PEDMARK?
PEDMARK is a prescription medicine used to decrease the risk of hearing loss in children 1 month of age and older who are receiving cisplatin for solid tumors (cancer) that have not spread to other parts of the body.
It is not known if PEDMARK is safe and effective when given after cisplatin infusions longer than 6 hours.
It is not known if PEDMARK is safe and effective in children less than 1 month of age. PEDMARK is not recommended in children younger than 1 month of age.
