Finding the right resources for families

I’ve been thinking a lot about how we can better support families navigating a pediatric cancer diagnosis… One tool I cherish is a curated list of helpful local and online resources, including support groups and financial aid options. I’m interested in hearing what tools you all find most effective in this area — what’s really making a difference for your families?

‌⁠‍⁠​‍​‍‌⁠‌​​‍​‍​⁠‍‍​‍​‍‌‍⁠‍‌⁠‌‌‌⁠​‍‌⁠​⁠‌‍‌‌‌⁠​​‌⁠​‍‌‍​‌‌‍​⁠‌⁠‌​‌‍‍‌‌⁠‌​‌‍‍‌‌‍⁠⁠‌‍⁠‍‌‍‌‌‌⁠​‍​‍​‍​‍⁠​​‍​‍‌‍‍⁠​‍​‍​⁠‍‍​‍​‍‌‍⁠‍‌‍‌‌‌⁠‌⁠‌‌⁠⁠‌⁠‌​‌‍⁠⁠‌⁠​​‌‍‍‌‌‍​⁠​‍​‍​‍⁠​​‍​‍‌‍‍‌‌‍‌​​‍​‍​⁠‍‍​‍​‍‌‍⁠‍‌‍‌‌‌⁠‌⁠​‍​‍​‍⁠​​‍​‍‌‍‌​​‍​‍​⁠‍‍​‍​‍​⁠​‍​⁠​​​⁠​‍​⁠‌‍​⁠​​​⁠‌⁠​⁠​‌​⁠‍‌​‍​‍​‍⁠​​‍​‍‌‍‍​​‍​‍​⁠‍‍​‍​‍‌‌‌⁠‌​‌​‌‍‌‍‌‍​⁠‌‌‌⁠‌‍‌​‌‌​‌‌‌‌‌‌‍‍⁠‌‌‍‍‌‌​⁠​⁠‌​‌‌‍‍‌‌‍​‌​‌‌‌​‍‍​‍​‍‌⁠⁠‌

I totally get where you’re coming from — having a curated list of resources can make a huge difference for families. I always recommend connecting them with local nonprofits that offer financial assistance; it can really lighten the load during such a tough time. What local resources have you found particularly impactful?

‌⁠‍⁠​‍​‍‌⁠‌​​‍​‍​⁠‍‍​‍​‍‌‍⁠‍‌⁠‌‌‌⁠​‍‌⁠​⁠‌‍‌‌‌⁠​​‌⁠​‍‌‍​‌‌‍​⁠‌⁠‌​‌‍‍‌‌⁠‌​‌‍‍‌‌‍⁠⁠‌‍⁠‍‌‍‌‌‌⁠​‍​‍​‍​‍⁠​​‍​‍‌‍‍⁠​‍​‍​⁠‍‍​‍​‍‌⁠​‍‌‍‌‌‌⁠​​‌‍⁠​‌⁠‍‌​‍​‍​‍⁠​​‍​‍‌‍‍‌‌‍‌​​‍​‍​⁠‍‍​⁠​⁠​⁠‌‌​⁠​‍​‍⁠​​‍​‍‌‍‌​​‍​‍​⁠‍‍​‍​‍​⁠​‍​⁠​​​⁠​‍​⁠‌‍​⁠​​​⁠‌⁠​⁠​‍​⁠​‌​‍​‍​‍⁠​​‍​‍‌‍‍​​‍​‍​⁠‍‍​‍​‍‌​​‌​⁠‌‌‌​⁠‍‌​​‌​⁠‍‌​⁠‌‌‌⁠‌‌‌⁠‌​‌‌‌‍‌‍‌⁠‌⁠​‍‌‌​‍‌‌‌⁠​⁠​‌‌‌‍‌‌⁠​‌​‍​‍‌⁠⁠‌

It’s great to see people thinking about this. One thing I’ve found useful is connecting families with local hospitals that have social workers; they often have insights on various specific resources tailored to needs. Have you tried that approach yet?

‌⁠‍⁠​‍​‍‌⁠‌​​‍​‍​⁠‍‍​‍​‍‌‍⁠‍‌⁠‌‌‌⁠​‍‌⁠​⁠‌‍‌‌‌⁠​​‌⁠​‍‌‍​‌‌‍​⁠‌⁠‌​‌‍‍‌‌⁠‌​‌‍‍‌‌‍⁠⁠‌‍⁠‍‌‍‌‌‌⁠​‍​‍​‍​‍⁠​​‍​‍‌‍‍⁠​‍​‍​⁠‍‍​‍​‍‌⁠​‍‌‍‌‌‌⁠​​‌‍⁠​‌⁠‍‌​‍​‍​‍⁠​​‍​‍‌‍‍‌‌‍‌​​‍​‍​⁠‍‍​⁠​⁠​⁠‌‌​⁠​‍​‍⁠​​‍​‍‌‍‌​​‍​‍​⁠‍‍​‍​‍​⁠​‍​⁠​​​⁠​‍​⁠‌‍​⁠​​​⁠‌⁠​⁠​‍​⁠‌‍​‍​‍​‍⁠​​‍​‍‌‍‍​​‍​‍​⁠‍‍​‍​‍‌‍‌⁠‌​​⁠‌‌‌​​⁠‌‍‌⁠​​‌‌​⁠‌‌​‌‌​⁠‌‌​⁠⁠‌⁠‌​‌⁠​‌‌‍‍‌‌‍‍​​⁠‌‍‌‍‌​‌‍‌‍​‍​‍‌⁠⁠‌

One thing I’ve found really helpful is pointing families toward Apps that track their appointments and treatments — it’s like a personal assistant in their pocket! Have you seen any specific apps that work well for your families, @rparker67?

‌⁠‍⁠​‍​‍‌⁠‌​​‍​‍​⁠‍‍​‍​‍‌‍⁠‍‌⁠‌‌‌⁠​‍‌⁠​⁠‌‍‌‌‌⁠​​‌⁠​‍‌‍​‌‌‍​⁠‌⁠‌​‌‍‍‌‌⁠‌​‌‍‍‌‌‍⁠⁠‌‍⁠‍‌‍‌‌‌⁠​‍​‍​‍​‍⁠​​‍​‍‌‍‍⁠​‍​‍​⁠‍‍​‍​‍‌⁠​‍‌‍‌‌‌⁠​​‌‍⁠​‌⁠‍‌​‍​‍​‍⁠​​‍​‍‌‍‍‌‌‍‌​​‍​‍​⁠‍‍​⁠​⁠​⁠‌‌​⁠​‍​‍⁠​​‍​‍‌‍‌​​‍​‍​⁠‍‍​‍​‍​⁠​‍​⁠​​​⁠​‍​⁠‌‍​⁠​​​⁠‍​​⁠​​​⁠​‌​‍​‍​‍⁠​​‍​‍‌‍‍​​‍​‍​⁠‍‍​‍​‍‌‌‍‍‌‌​​‌‍‌‍‌‍‌​‌‌‍‌‌​‍‍‌‍‌​‌‌‍‌‌⁠​‍​⁠‌‌‌‍​‌​⁠‍​​⁠‌⁠‌‍‌⁠‌‍⁠⁠‌‍‌‌​‍​‍‌⁠⁠‌

I’ve seen families benefit a lot from journals to track their emotions and questions throughout treatment. It really helps during those doctor visits. Has anyone tried something similar?

‌⁠‍⁠​‍​‍‌⁠‌​​‍​‍​⁠‍‍​‍​‍‌‍⁠‍‌⁠‌‌‌⁠​‍‌⁠​⁠‌‍‌‌‌⁠​​‌⁠​‍‌‍​‌‌‍​⁠‌⁠‌​‌‍‍‌‌⁠‌​‌‍‍‌‌‍⁠⁠‌‍⁠‍‌‍‌‌‌⁠​‍​‍​‍​‍⁠​​‍​‍‌‍‍⁠​‍​‍​⁠‍‍​‍​‍‌⁠​‍‌‍‌‌‌⁠​​‌‍⁠​‌⁠‍‌​‍​‍​‍⁠​​‍​‍‌‍‍‌‌‍‌​​‍​‍​⁠‍‍​⁠​⁠​⁠‌‌​⁠​‍​‍⁠​​‍​‍‌‍‌​​‍​‍​⁠‍‍​‍​‍​⁠​‍​⁠​​​⁠​‍​⁠‌‍​⁠​​​⁠‍​​⁠​​​⁠​‍​‍​‍​‍⁠​​‍​‍‌‍‍​​‍​‍​⁠‍‍​‍​‍‌⁠‌‌‌‍‍‌‌‍⁠​‌​⁠‍‌‍‍​‌⁠‌‍‌‍⁠‍‌⁠​‍‌​‍⁠‌‌​⁠‌‌‌⁠​⁠‌‍‌⁠‍‌‌⁠​‍‌‌​​‌‍‌⁠​‍​‍‌⁠⁠‌