We go to Loyola University's Pediatric Oncology unit, and not to Children's Hospital (as mentioned earlier, Loyola has the same COG protocol, and better proximity to home).
Most of the cancer kids at Loyola are from low-income families. The nurses and doctors love them just as much, probably more. But the system isn't able to fill the insurance gaps with love.
Most of the cancer kids at Loyola are from low-income families. The nurses and doctors love them just as much, probably more. But the system isn't able to fill the insurance gaps with love.
The nurses hadn't questioned Aria not having numbing cream ... maybe we just couldn't afford it. It's not given at the chemo clinic. So, of your parents are on public aid, they are probably deciding whether to pay for rent, food, or the optional numbing cream.
This pediatric unit with a Wii console at every stations, but doesn't have numbing cream so when you ram a needs into a toddler, the pain could be lessened. This pediatric unit at the Cancer Center with 34-laboratories funded by the National Cancer Institute (NCI), American Cancer Society (ACS), and other peer-reviewed external funding agencies...it doesn't stock the anesthetic cream for the toddlers.
(fwiw, the nurses have now created their own stash of numbing cream, which just reminds me of teachers who have to buy students paper and pencils, while the school buys new football uniforms).
A second example of WTF: $5 to park at Loyola is a bargain to me, compared to Northwestern. But when our sweet neighbor slipped us a month's worth of free parking stickers, I was still grateful because it reduced our hassle. Hassle can make the difference between yelling at a kid and giggling with them.
A nurse once she pulled out a stash of the stickers "...for patients who can't afford to park. But sometimes we run out." She offered me one. I declined and wanted to melt through the floor for even considering saying yes for a half-second.
A nurse once she pulled out a stash of the stickers "...for patients who can't afford to park. But sometimes we run out." She offered me one. I declined and wanted to melt through the floor for even considering saying yes for a half-second.
Deliveries of scotch, flowers, chili and superhero capes. Excellent hospitals and insurance, easily afforded valet parking and numbing cream. Good schools, flexible jobs, and a phenomenal community of people to help us transform a nearly intolerable situation. Every aspect allows us the breathing space to still find the enjoyment that's there to be felt.
This is my life. How powerless, overwhelmed, guilt-ridden, and depressed I could feel without any one of these resources unknown or unavailable to me
No child should have to face cancer with a parent who can't even access the resources that make childhood illness tolerable, a parent who can do as much as is possible to help their child through intact physically and emotionally.
So I was about to start fundraising for services for families of children with cancer. And then, I thought about the families who didn't get the spectacular "90% likelihood your kid will at least not die" prognosis that we did. So now I think about research.
1 comment:
It makes me really happy to read this post. I agree with you that research is the way to go! It is very sad that a little kid has to go without the numbing cream, but being able to go from 90% to 93% chance means more kids will survive.
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