Sunday, February 28, 2010

Helping those who need it most

If you saw Lindsay's Caring Bridge post today you know what I'm about to request.

When I learned about little Courtney, it just got to me. Thinking about losing your 15 month old child. Thinking about going through this and not receiving help from others.

Cancer robs any financial security that you may have enjoyed. Savings, gone. Even with the best insurance, it's an expensive disease. The financial side can rip a family apart, regardless of the health aspects. And as parents stress over making ends meet, they are not able to focus on what really matters - their children.

Please consider helping a family in need. Whatever you can do:

The following is from another mom, and I have edited a bit:

The little girl is named is Courtney McClaflin. She was diagnosed in September 2009 at the age of 15 months. Her family has been told that she will not be with them much longer. She has two parents and two older sisters.

http://www.caringbridge.org/visit/courtneymcclaflin

Alex and Stephanie are in love with this little girl, and we are asking all our supporters to pitch in and help. Their family has not enjoyed some of the support that our families have.

I know the McClaflin family is in a world of hurt with the most recent news.

I believe they would appreciate a helping hand, as all of this is sudden and they are not prepared to deal with this turn and the huge expenses that come with it. I would like to try and help out. In church we call this a "love offering," and I believe there is not a family in SC in more need.


Julie Caison (also from Anderson, Bryce's sweet Mommy) has agreed to help look after donations for the family. If you would like to send a check to help with expenses.

Julie can be reached at:

Julie Caison
2902 Beechwood Pkwy
Anderson SC 29621

Please feel free to share or cross-post this information. We need all the help we can get.

With many prayers for peace and mercy for Little Courtney and her family as they go down this road.
(From Ginger ... If you do not feel comfortable sending a check to someone you do not know, you could send a gas card, cash card, etc to the hospital to Attn: Family of Courtney McClaflin. People did this when we were in the hospital and we always got the package or card. If we had gone home, they were forwarded. That will give you a little security if you are uncertain. Please think about helping out.

Thursday, February 25, 2010

Gift Bags!

Last Friday, Lindsay, Michael and I took brownies to the Ronald McDonald house. This got me thinking. Did anyone ever bring food to us in the hospital? I know a lot of parents who are outpatient have meals brought to them at home because of all of the running back and forth they are doing. But it doesn't seem all that practical to take food to someone in the hospital. Then I remembered, quite a few people sent care packages. One that I had completely forgotten consisted of various Wisconsin cheeses, crackers and jellies - delish! Another one was filled with dark chocolate candy bars, nuts, and dried fruits. Another one, my favorite of all, had Trader Joe's peach salsa and corn chips and Jo Jo's - trader Joe's answer to oreos. Holy yum! So evidently people did give us food (as well as Whole Foods Gift Cards that truly sustained us) and it wasn't all that impractical.

So today's challenge is to go to the grocery store, by a variety of treats (include sweet, savory, healthy and indulgent!) and make care packages. You may want to call the hem onc floor at your closest Children's hospital and make sure they will allow this. If they won't, the Ronald McDonald house will. One consideration is that weekends are the worst time to be in the hospital. At Brenner's, the playroom closes, and if your child is severely neutropenic, you may not allow visitors. SO, you might want to shop on Friday and then take the bags on Saturday or Sunday. You could even throw an impromptu gift bag stuffing party (with wine of course!) on Friday night and get some friends involved! As "admission" have each friend bring two items for the gift bags. If you do the party idea, you could ask a couple of friends to bring non-food items for the kids (stamps, stickers, gel clings for the windows, notebooks, disposable cameras, a journal are all small things Lindsay really enjoyed when she was inpatient)

If this is too much work, you could just shave your head!

Anyone want to brag?

Wednesday, February 24, 2010

Running away from Cancer

When Lindsay was in the hospital I couldn't wait for her to get out. The plan was to finish chemo, wait for counts to recover, go home and never ever ever have anything to do with cancer again.

But then you get home. And you realize cancer really isn't going to let you off the hook that easily. I mean, think about it. Cancer has been around for a really really long time. Cancer has been thinking and planning and conniving and infiltrating far longer than I've been parenting. So getting away from cancer takes a little more than leaving the hospital.

Then you realize that running away from cancer is not the answer. Cancer, by definition, infiltrates. It invades. It sneaks in and implants itself. So running isn't all that effective. You have to turn, face it head on and fight. And at the end of the fight cancer doesn't roll over and die. It goes into "remission". It slinks away and hides and maybe it's gone and maybe it isn't. And even if your child's cancer is really, truly, completely gone, you blink and turn your head and there is another kid with cancer. And another. And another. Before long you start to think the whole world is bald and neutropenic.

So here we are. I have to do something. And I've been running out of steam with this Lent, 39 days thing. All of our appliances are breaking one by one and I'm learning to be a plumber whilst learning to be a single-stay-at-home mom and also doing oral surgery on my dog even though I'm not supposed to be working but his tooth abscessed so something had to be done, blah, blah, blah, poor me! Then I saw the Caring Bridge post from a fellow chemo/cancer fighting superstar's mom. She compared her level of exhaustion to "new parent" exhaustion. And it all came rushing back. Oh, yeah. This is nothing compared to that. How could I forget how exhausting it is? This little project is important!

So I'm going to give you some very simple, but not at all free suggestions for what you can do today. And I'm serious - if you don't email me or comment or facebook me and brag on yourselves, I'm going to hunt you down. Because I KNOW you're out there doing great things. And I REALLY REALLY need to hear about them.

The easiest thing to do: if you know someone with childhood cancer (even if you don't know them but you read their Caring Bridge), just send them a gift card. $10 to Target, $15 for gas, even a $5 bank card! Cancer is expensive. And it requires extra fuel - extra gas to get to the hospital, extra coffee to keep going, extra snacks / treats to keep your little one at a safe weight, extra goodies from Target to reward your child for enduring bandage changes / line flushes / antibiotics that make you itch, etc etc etc. So gift cards from complete strangers are always welcome. $10 to Starbucks means more than you know. If you don't know anyone who is currently in treatment, you can send some gift cards to the hem-onc social worker at Brenner and request they be given to families that need a pick-me-up. When we were inpatient we were given some gift cards for pizza, Wal Mart, groceries. It may not have been much, but it was much needed at the time. The Ronald McDonald house also takes gift cards to restaurants so that parents / families can occasionally get some real food and maybe even some much needed adult conversation or planning time (it's hard to discuss your child's health in front of them at times). So today is just that simple. Gift cards. You can order them online in the comfort of your pajamas!

AND NOW FOR A BRAG!!!! Michelle gave up Caribou coffee this week. I know I suggested it, but I'm a little concerned :-) I can't wait to hear how it is going and what she decides to do at the end of the week. I hope the rest of you are inspired and willing to brag on yourselves to inspire the rest of us!

PS - If you're a cancer mom and have an idea or suggestion, please share. Also, if you'd like to post a photo of your own smiling cancer-fighting hero, please send it to me!

Monday, February 22, 2010

Hair

*I wasn't slack yesterday... I just had problems with Blogger. So here is yesterday's post and I'll update again after the kiddos are sleeping tonight. Keep up the good work! ...

Today was a long day to say the least. I won't get into the details, but suffice it to say it was long and trying. The kids were great but my dog had some medical issues, blah blah blah. Anyway, at the end of a long day I was bathing the kids and they both started begging for a hair cut. So it was hair cut night. As I cut Lindsay's red curls I thought about her hair falling out from chemo. And I thought about Vinny and something his mom said about him losing his teeth. And I thought how lucky I am to be able to cut my kids' hair.

So tonight is about hair. The first is free. Totally absolutely free. But you have to have long hair. Yes, I'm suggesting you donate your hair to Locks of Love. It's important to point out that most of the people who benefit from this have alopecia rather than cancer. Still, some of the recipients of wigs are kids who have permanent hair loss due to their cancer or cancer treatment.

If your hair isn't long enough to donate, the second idea is also absolutely free. And you can have short or long hair. But you won't have much for long! I'm asking you to shave your head. St. Baldrick's is an organization that raises money solely for pediatric cancer research. You shave your head and get donors. The organization has a website and you can get your donations online - it's as simple as sending out an email. I'm considering doing this next fall at the event in Winston-Salem, but there are other events in the short term. Yes, this is a tremendous sacrifice to ask you to make, especially if you are a woman. But such a bold statement not only raises money. It also raises awareness with every person you meet.

Think about it!

Ginger

Sunday, February 21, 2010

Self Sacrifice and Lent

As hard as I've tried to make this easy-peasy, I suppose Lent is about self-sacrifice, abstention, etc. So, today I will suggest something along those lines. For the next 7 days abstain from EITHER lunch out, morning coffee at Starbucks, Sunday lunch out or whatever luxury you choose in order to save some cash. Calculate how much cash you saved at the end of the week, and donate it to the organization of your choice. Pretty simple, right? Until your lunch bunch friends start hounding you. That's your opportunity, though. Tell them about this site. Tell them about Lindsay and Vinny and Lily and Megan and Kate and Austin and Jay and Holly and Emily and all the kids that maybe you've never heard of who have endured way more than any of us, even their parents, can really imagine! And they can join you on this endeavor. Trust me, it will be SO much easier if you have a friend or two spurring you on.

I'm not going to feature a new organization tonight. I'm going to revisit one that I've already mentioned. Since it was the first one I featured, I'm afraid maybe some folks have missed it. And since it's a small operation but one run by people I know and trust, I REALLY REALLY want to help get the word out. Kids of Childhood Cancer is a group that raises money to help kids being treated at Brenner Children's Hospital hem/ onc unit. They have made some real headway in getting microwaves and mini-fridges in the room on the hem onc unit. It might sound like a small thing or even a luxury, but when your child is having trouble breathing, hooked up to O2, the last thing you want to do is walk down the hall and wait 5 minute for your microwave dinner (the 5th you've had this week, thank you very much) to cook. When your child is vomiting and begging for a little Propel to help get the bad taste out of her mouth, you want that cold Propel to be right there in the room, not down the hall. And when your child hasn't eaten in a week and she's suddenly asking for mac-and-cheese, you don't want to walk down to the community fridge only to find that someone has taken her mac-and-cheese. Can you tell these scenarios aren't made up :-) They are also working on getting some Wii's for the floor. The thing about the Wii is that it really pulls the kids mentally and, if they're able, physically out of that hospital room. The parents behind Kids of Childhood Cancer have great ideas and know first hand what families in cancer crisis need. The cool thing is that they are making those ideas reality by working with the oncologists and hospital administrators at Brenner. So visit their page (the link takes you straight to the donation page ... heehee) and peek at the pictures of kids and consider donating your savings from this week's abstentions to this worthy group.

Thanks!! Oh, and big thanks to Sarah for sharing this site on your Caring Bridge! Hopefully more people will join us in this little project!

Believe that there's light at the end of the tunnel. Believe that you might be that light for someone else. --Kobi Yamada

Saturday, February 20, 2010

A Box of Smiles

Yesterday we trekked over to the Ronald McDonald House of Winston-Salem, our home away from home for 6 months. When Lindsay was in the hospital, one of us stayed there with Michael while the other stayed at the hospital. We traded off hospital / Michael duty more or less every other day. It was taxing. I can't imagine having to commute an hour or more to do it.

It costs the RMH about $86 a day per family yet they only charges $5 a day to the family. And they'll waive that (or let you "pay it when you can") if you can't afford it. They provide food - cold meals, sandwiches, snacks. And volunteers will even cater in warm meals several nights a week. They have a counselor who comes to the hospital mostly to be your friend, but also to bring you magazines, talk about resources you might need. They help oncology families as well as NICU, general peds, etc families. Because RMH Winston-Salem was founded by an oncology family, they have a special provision in its charter that moves oncology families to the front of the waiting list.

A very very small portion of their budget (about 8%) comes from McDonald's. They raise the rest.

So, the easy easy idea. Get a box. A big box. And put it in the break room at your work (or church, or school, or gym, or all 4). Put up a sign that lists the needs of your local RMH. Send out a mass email. Give a deadline and send out a mass email. They need simple donations - toilet paper, paper towels, granola bars. You can also put a small box for financial donations next to the big box if you feel comfortable doing that.

You can also put a note or a sign referring to this website next to the box so people will know why you're motivated to do this.

Obviously, RMH Winston-Salem is today's featured organization, but there is also one in San Diego , Greenville SC , Atlanta , and one will be opening in Charlotte this year. For those of you near Charlotte, they are in the building stages and do not appear to be in need of non-financial donations. However, if you want to do the Big Box idea, I'm happy to collect your donations and take them to RMH Winston-Salem. Also, if you do not live in one of these cities, google the nearest children's hospital or big city or ask in the comments and I will do the work for you. RMH Winston Salem has a great page on their donations / needs link that you can print that shows specifically the types of tangible donations they need.

Keep up the hard work, and let me know what you're up to!

Friday, February 19, 2010

Progress

I have a few brags to report and it makes me oh-so-happy!

First, Michelle rocks for helping out Godstock and for posting my little blog on her facebook. Don't forget to help get the word out!

Second, Lindsay rocks. This morning we were all being lazy in bed and she said, "Mommy, why didn't you get an ash cross on your forehead?" Now, I haven't mentioned anything to her about this project and Lent just hasn't come up. But she does go to an Episcopal preschool, so these things come up from time to time. Apparently her best friend's mom had Lent ashes on her head and Lindsay found this incredibly intriguing. So I told her about the 39 days project. She immediately says, "I can help you!"

This is what I LOVE about Lindsay right now. She's all about helping people, giving gifts, making cards. Now this may sound like typical kid stuff. But for the last 4 years I've been a little concerned that Lindsay was born with a mutation in her giving-and-sharing gene. Lets call it the GAS gene. Well, as it turns out, the GAS gene isn't expressed until you turn 4.5. This was predicted by my mother (early child development expert and possible burgeoning geneticist) and the prediction has been fulfilled. Lindsay has suddenly turned into Little Miss Do for Others.

So, this morning we made two batches of gooey, fudgy brownies and drove them to the Ronald McDonald House of Winston-Salem. I was SO hoping to get a photo to include, but I left the camera at home! It was incredibly rewarding to take these into that kitchen where we scrounged so many meals. Brownies may seem like a small thing, but I remember eating brownies late one night after a long and scary day at the hospital. And hopefully, tonight, some mother or father has brownie crumbs on their shirt and a smile on their face.

Tomorrow's free idea is going to be SUPER easy, so be sure to "tune in". And PLEASE PLEASE PLEASE - BRAG on yourselves!!! It might be embarrassing but it is sure to motivate others. If you can't figure out the comments, facebook me or post in the guestbook of our caring bridge page. The weekend is here ... let's make it a time of giving!

Thursday, February 18, 2010

Don't Be Shy

What did you do yesterday? Did you post the link somewhere? Did you check out the Kids of Childhood Cancer website? Did you donate? Don't be shy. Let us know. You can post in the comments and I'll repost in the text. This is the only way we are going to motivate everyone to keep going. Also, PLEASE ... if you are volunteering or doing anything photograph-able, please send photos and I'll spruce up the space a bit.

39 days is a long time. But animal behaviorist Patricia McConnell once said at a conference it takes 25 days of repetition to change a behavior. (I hope I'm not totally misquoting or mis-remembering here!) Can you imagine doing something to help others 25 days in a row? And then it just becomes so ingrained that you can't stop? Well, maybe it isn't that easy, but give it a shot!

So, today's featured organization? Families who are facing cancer sometimes have a hard time paying the bills. But the electric company doesn't really care that your kid has cancer. Well, maybe they care, but what can they do? There is a small, but amazing organization in North Carolina called Godstock. They actually pick up a bill for you if your child has a chronic or terminal illness. It might be an electric bill or a car bill. They might make a portion of your rent payment. They don't pay medical bills and they aren't dolling out large amounts of cash for frivolity. They keep families from going under or having their phone or electricity cut off while their child is sick. This practical way of giving also helps alleviate the financial stress so the parents can focus on what matters, their child.

And the free tip? Start planning a yard sale. Yup. I said free, not easy. But, face it, Spring is around the corner and your house needs to be cleaned out. The yard sale should be soon (no excuses about weather ... this is for kids with cancer for crying out loud! They don't get to use weather as an excuse to get out of chemo!) Pick an organization to donate the proceeds. Make signs and be clear on your signage who the money is going to. Ideally, have some brochures out. Then set up a box in case some people just want to give you cash. You'll be surprised how generous people can be. You can even give out cards with this website.

And don't forget, post this website everywhere. Facebook, Twitter, in your email signature. If you haven't already, I'll let this slide as one day of good deeds - the more people who participate, the better, right?

39 Days of Smiles Challenge: Observe Lent (even if you're not Catholic) and Do Something Good for Kids with Cancer

Lent is a time of fasting and prayer. A time of abstaining. A time of giving things up. So it's no wonder that many choose to give up something they love like chocolate or wine. Something luxurious.

A friend recently posted the following status on her facebook page: I challenge friends to do something good (for their family, friends, animals, community or their own health) for the 40 days of Lent rather than giving up luxuries that they don't need anyway.

What a great concept. I mean, does God get a kick out of us giving up chocolate in order to lose weight? Is that what Lent is all about? Giving up something we don't need and that most people around the world can't afford on a daily basis?

Now Lent isn't exactly part of my tradition. I do, however, have a vague memory of the Catholic School priest setting little pieces of paper on fire and rubbing ash on our foreheads as we stood in line. Perhaps this is all wrong, a fabrication or collage of memories. Still, when I think about the bit of soot on my forehead, it all seemed very profound. That's the beauty of the more formal Christian traditions.

So, having not given Lent much thought in recent years, I was amused by my friend's facebook message but didn't really find it relevant to my life. I reposted and sort of forgot about it. Then facebook friends started posting what they had done. Or were going to do. Some were jokes, but others were serious. And I couldn't stop thinking about the potential here. Because kids with cancer have a special place in my heart, I decided to narrow my friend's challenge a bit.

And that's when I thought of the 39 DAYS OF SMILES CHALLENGE. (I'm a day late, but who cares!?)

And the best part? You don't have to be part of a denomination that celebrates Lent. You don't have to be Christian. And even if you do celebrate Lent and have already given something up, there is no reason you can't scrap those plans and accept the 39 DAYS OF SMILE CHALLENGE!! Or do both! But wouldn't you rather keep on enjoying chocolate and do something for kids with cancer instead?

So here's the challenge: for the next 39 days try to do something every day for kids with cancer, for their families, or for their nurses and doctors. This may be something direct. Mailing a card or a present to the child. Sending a care package to the oncology floor of a local children's hospital. Or, it may be making a donation or volunteering some of your time to an organization that helps kids with cancer.

To help, I will post organizations and what they may need. I will also post creative ideas to help that don't require money, since most of us can't afford to spend mega cash for the next 39 days!!

But to REALLY make this endeavor successful, I need YOU to BRAG on yourself. Email me, post in the comments, post on my Caring Bridge guest book, or post on my facebook. Tell me what YOU did today to reach this goal. I will compile a complete list of brags each day and we can see what a difference we're making.

So get out there. Do something amazing. And don't be shy to brag about it. It's only 39 days. YOU CAN DO IT.

Today's featured organization: Kids of Childhood Cancer This group raises money to help families whose children are being treated at the Pediatric Hem/Onc Unit of Brenner's Children's Hospital. It has non-profit status. They are a group of moms and dads whose children have or had cancer and so they know first hand what families need. And what this organization needs is money. So $5 or $50, any little bit will help.

Today's totally free idea: Post this website EVERYWHERE. On your facebook page, tweet it, on your email signature, on your Caring Bridge. I'd love to see this take off and have people all over the world come together for Kids with Cancer during the Season of Lent. The more people we recruit, the more good will be done. And all of our lives will be better for it!