Monday, March 06, 2006

Babies With Cancer Resources

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.


maury said...

Just wanted you to know that we here in Cincinnati are thinking of you all and hoping and praying that the treatment will do all it is supposed to do and your baby comes out of the process healthy and happy. She sounds like a real trooper, and our best wishes for the rest of the family as you struggle through this journey.

Regarding the slings, if a person or group wanted to help with that, is there a pattern that can be used to make slings? Or do they need to be bought? Would you give them to Children's Hospitals for sharing with babies undergoing treatment and their parents?

In Cincinnati we have several groups that help pediatric patients and families. One is the Ruth Lyons Christmas Fund and it supplies toys and books for kids at christmas. Ruth Lyons was a local celebrity like Dinah Shore, but bigger here.

There is also a network of neighborhood women's groups that raises money for Childrens HOspital and they do a lot of crafts, called Kindervelt. I would think that if people knew of the need, they would want to help in some way.

I think your suggestions are good. We had 2 premie babies, one in worse shape than the other, but nothing like you are going through. At that time there was no premie support group and we really missed having something like that. They do have one now, which is great.

With my premie babies, I had to rent breast pumps (about $1/day back then). That really helped to keep the milk going when they couldn't nurse very well, it was well worth it. These days there are store bought pumps that are pretty good, but that Medella electric one was very important to me, and made nursing possible.

I hope that you have more good news soon.

Hang in there. Maury

maury said...

one more thought. call La Leche League. I bet they can help re the nursing part. Even if the local chapters don't know, they can connect with someone who does. Another resource is Mothers Milk Banks (mom's bank breast milk for other moms/sick babies to use). There are a few around the country. They work with sick babies or babies with sick moms.

Good luck.

Lizard Eater said...

Thanks for the info and ideas, Maury. My favorite sling is actually one of the simplest designs (no padding), made by 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.

I 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.