Specifically ... there don't seem to be any. You've got your "Make a Wish" foundation and "Sunshine Kids" and such, but they all require the patient to be at least 3. Which I can understand, they want to help the kids who can appreciate it. But babies ... and the families of babies with cancer ... have some different and specific needs.
So ... if I had the money to start a foundation for babies with cancer, what would it do?
Off the top of my head: provide slings for babies in the hospital or getting chemo. When you've got an iv pole, slings are WONDERFUL. You can pop Baby in one, grab the pole, and you're off for a walk. Baby loves being close to Mom or Dad, parents love having Baby strapped to their chest, exercise is a good thing ...
What else? Mmm, provide those portable DVD players with a copy of Teletubbies or Baby Einstein. I call it Teletubby sedation.
Resources for the family ... some sort of family/couples counseling support -- how do you help your baby when he can't tell you what hurts?
OH, DEFINITELY ... resources for nursing mothers. First and foremost, information on breastfeeding a baby with cancer. I haven't been able to find ANYTHING. My doctors are good, but they don't have any information on this. All they tell me is "sure, go ahead and breastfeed." Breastpumps, for keeping up your supply during the 4+ days when Baby has surgery and you're not allowed to nurse.
Hmm. Will edit and add more as I think of them. Little Warrior is fussing. Hey, money for a baby nurse! Naaaaah.
Thanks for the info and ideas, Maury. My favorite sling is actually one of the simplest designs (no padding), made by mayawrap.com. I know that there are patterns out there for making slings ... it's basically just one long rectangle of fabric and two big metal rings.
ReplyDeleteI was in email conversation with the director of Candlelighters, and she sent me this response:
"... this one would be best done through us here at National. We have a national newsletter with a distribution of 24,000 families across the country. We also have a large budget for distributing resources with boxes here, postage meters etc. so we could definitely add this as one of our services if a group wanted to make them for us to distribute."
If you find a person or group who would like to take this on, let me know. I can forward to you the contact information for the director.
Thanks!