Families who face the devastating diagnosis of pediatric cancer are quickly catapulted into the world of pediatric oncology.
Parents who spoke to Give InKind, reported that they were touched and overwhelmed by the efforts of their communities to help them cope with the practical and financial realities of a pediatric cancer diagnosis.
For those friends and family members wishing to help a newly diagnosed family, understanding the crippling convergence of the practical and the emotional is critical.
The family facing pediatric cancer will face significant financial and emotional stress.
For example, a family forced to go from a two-paycheck family to a one-paycheck family, will face the challenge of having to do more with less. Critically more, at that. Even if one parent curtails hours at work without actually leaving a job, that amounts to lost wages.
Taking care of a sick child is a full-time job. So is a full-time job that a parent must keep in order to retain life-saving medical insurance.
Even with excellent medical insurance, treatment is still expensive and has many associated costs. Some treatments are not fully covered by insurance. Even for treatments that are covered, co-pays can add up fast. So too can seemingly “little" expenses like special sippy cups that help with administration of medicine (a nightmare for parents), unending supplies of hand sanitizers/germ control, and easy-to-use accurate thermometers.
Parents may look to mitigate side-effects of aggressive treatment in alternative ways that may or may not be fully covered by insurance. Examples of alternative treatments can include acupuncture, therapy, art therapy and more. For these reasons, a discretionary medical fund can be very helpful. Consider donating to a Health Services Account. Says one mother:
“[S]ome medications aren’t covered, so day-to-day meds cost about $50.00 a month. And the out of pocket medical costs can vary wildly depending upon quality of your insurance."
Cancer treatment is a marathon, not a sprint. The stress on parents is unfathomable. Supporting efforts to promote their self-care is critically important.
Attending to children who are critically ill, and have varying prognoses is hugely draining. Efforts to support parents’ respite – talking a walk, or exercising – can make a huge difference in their mental state(s).
Parents of kids with cancer are unlikely to permit themselves the “luxury" of a massage, or a manicure/pedicure. But can you think of anyone else who could use it more?
Help the family to create opportunities for seeing childhood through more normal glasses. Support families who may have to keep children out of school because of compromised immune systems.
Buy them plentiful books and art supplies. Have specific conversations about the effects of treatment. Ask whether there are crafts that can be purchased that help ease these effects. For example, radiation can lead to peripheral neuropathy (a dulling of nerves in the extremities.) Certain crafts that promote fine motor skills can be restorative. Ask whether an occupational therapist can make specific suggestions. Find a DIY kit that may fit the bill.
Food is a significant expense for families managing pediatric cancer care. Maintaining weight on a child who will be very sick from treatment means switching up food a great deal. Shopping is logistically difficult. Trying to find foods that an extremely ill child will eat is a crapshoot. Gift certificates to local markets can defray significant expense. In addition, the frantic pace of life in treatment mandates more flexibility in the purchase of expensive prepared foods.
Above all, keep checking in. Bills, stress and fear linger long after the cancer resolution. Go ahead and keep asking: what can I do to be helpful?
Photographs courtesy of Julia Thompson and Joe Wagner. Used with Permission.
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