But this is not that kind of blog.
This is a collective blog. We currently have three Contributing Editors. We are all cancer moms. We are all Wilms Tumor moms. This is not a Wilms Tumor blog, it's just how we got together. Back to the collective part. We won't be the only ones posting to this blog. We have big plans. (If you are reading this, and you are a cancer mom, or supporter, or survivor of pediatric cancer and you have something to say, let us know. We'll be happy to have you. See the contact tab above.)
Some of our hopes and plans for this site:
We want to highlight a different pediatric cancer every month. The cancer of the month will have weekly posts: symptoms and diagnosis, treatment, prognosis and life after treatment, and information about organizations related to that cancer or current clinical trials. We want Pediatric Cancer Awareness to go all year long, not just September. But awareness is nothing in and of its own. We want, we need more. So you'll also see a lot of posts about how you can get involved from the smaller local ideas (like donations to your local oncology unit and gift cards are the awesome) to global or community concepts (like helping fund pediatric cancer research and contacting your congessman about bills that will help the kids).
In tandem with the Cancer of the Month we'll be putting the spotlight on a Cancer Mom of the Week. Each week of that month, a mom who knows that cancer more personally than she'd like to, her tricks, her journey, her cute bald kid. She can share with you what it was like, first hand. And the hope is, that as time passes by and our archives build, that there will be a day when a child is diagnosed with cancer, that the mom sitting next to that bed can use the floor computer and come here, and see what she really needs to know about this new journey, the diagnosis she just heard. Read at least four stories about moms who've walked in her shoes, and find what we all wish we could have found in those dark hours throughout our journey.
We say moms a lot on here, but we by no means are just targeting cancer moms on this site. What we also hope to achieve is an opening of the mental door so the support network of that cancer mom can see what goes through our head. Let me give you an example. I had only recently met Christy. We were friends on Facebook, her daughter was about to have her nephrectomy, I commented that she should go have pictures taken NOW, of that belly, perfect as the day it came into this world. Some of Christy's friends, well, some of them did not appreciate that comment. I was admonished, "That's not what she needs to be thinking about right now." And to them I am sure it may have seemed horrific I even brought up that elephant in the room "your kid is going to be physically scarred forever." But my kid is, and I don't have those pictures, I wish I did in an aching way it is hard to explain. We want you, those friends, to be there for your cancer mom and say those things to her, the hard things, the ones where there won't be a do-over. We also want to let you know we like stupid cards, about bologna's middle name, because well everyone needs a stupid card with nothing important written on it every once in awhile.
Red Dye #48 is here to let all you sweet awesome friends know, your cancer mom pal, she's already thinking about the hard stuff, and if she isn't well, now is the time to bring it up, you can't undo surgery. There is a lot people won't talk to us about for fear they'll make the situation worse. We are hoping by reading these stories, these posts that you'll find the last thing we need is silence. Say it, even if it makes us cry. And if you can't say it, well we sure are hoping a post on here will say it for you and you can forward it to that friend of yours so she can hear it from a member of the club no one ever volunteers to join.
We want to help you, help me, I mean us.
We want to provide you the insight into our fears and systems, into our daily struggles, but also give you the bounty of our experience in the form of practical ideas. The one thing that can make a bad cancer mom day worse is to have a well intentioned friend say ever so empathetically, "I just wish there was something I could do." If you wish it, then make it true. We know you wish you could make the cancer go away, we do too, but we can't, but a coffee shop gift card does actually make it a little better. I know it seems trite, hey your kid got cancer here's a handbag, but really, it beats doing absolutely nothing. Don't want to clutter up their situation, set an appoinment on your phone or computer to remind yourself to send them a text or message at a regular interval. Volunteer on the ward, bring an extra present for the kid next door when you visit us. Like these ideas? Well there will be more. . ..LOTS more. Because if you can't find something to do for your cancer mom and family, then do anything for pediatric cancer patients and research and you will touch her heart and all of us.
That my friends is why we are here. And yes we will do periodic fundraisers and in the future offer some red dye #48 merch, but we will absolutely be sending 100% of that money to an already established, already funding research, on the level PEDIATRIC cancer organization. We don't want to start another non-profit, we want one to speak, one to succeed, one to find a cure. And yeah, don't get us started about the ones that love to use our baldies on their brochures but don't actually show us the research funding love. That's a whole other post entirely.
We want red Dye #48 to become the go to site for the information the family of the patient needs about their diagnosis, where that family and their support network can come for support, where funding for pediatric research can have a voice, and where the realty of pediatric cancer isn't ignored the other 11 months of the year.
I'll end with a quote shared with me by another cancer mom:
Very cool site! Thank you!
ReplyDeleteMy small nephew, Corey,who just started K is a Wilms survivor, diagnosed on his first birthday.
ReplyDeleteI cannot list all the treatments he went through for two and a half years, with bleak prognosis's. He is well now, after having had stem cell transplant. We pray he will continue with NED. Not enough people are aware of the facts of Children's Cancer. I am so glad for all the non-profits, blogs,fundraisers. Never enough. I wish we could really get the message more PUBLIC,like has been done for breast cancer in women, which is wonderful! I wish I had the knowledge or money or whatever it takes to get this done--and now. Come on Oprah, YOU can do this!!!
I pray for Corey, his family, and all those going through this nightmare. Aunt Kathy