Benefit for Bobbette

On June 18, we will be holding the 'Benefit for Bobbette Miller' in her hometown of Lobelville, TN. The proceeds from this benefit will go towards covering her surgical and post-surgical medical expenses. The average kidney transplant, including hospital stay, is approximately $40,000 - $50,000. However, because of Bobbette's pre-existing medical conditions, her surgery is expected to run upwards of $100,000. It could potentially reach $200,000, depending on the length of time she's required to stay in the hospital. This total does not include the medications she is currently on or the ones that will be added after her transplant. Insurance will cover approximately 80% of the surgical costs. The amount covered for the medications varies depending on which one we're talking about. The remainder of the costs will fall to us.

Yes. Us. Not her... US. Some may think I'm stepping out of line for speaking for all her friends and family, but I feel quite comfortable saying that none of us will leave her to carry this burden by herself. We take care of our own.

Benefit For Bobbette

June 18 -- 2pm til 7:30pm

Main St. in Lobelville, TN

Musical performances by Lost Creek, Coley McCabe, CJ Garton and more.

Silent auction featuring items from Michael McDonald, Darryl Worley, Keith Anderson, Gander Mountain, PF Chang's, and many more.

Food will be available for purchase, as well as a cake walk.

If you would like to donate items or gift cards for the benefit, please send them to the address below no later than June 17:

Benefit for Bobbette Miller

c/o Abbie Vicknair

124 S. 17th St.

Nashville, TN 37206

For those of you who cannot be there but would like to donate, you may donate via the Paypal button below OR a fund has been set up at a local bank:

First Bank

The Benefit of Bobbette Miller fund

Linden, TN

931-589-2161 - ask for Naomi
 

THANK YOU!!

Three Thousand Dollars, Two Lumps, One Port

I hit my $3000 fundraising goal for the Boston 3 Day last night. And while that would normally be a great moment and one that I would celebrate by dancing around my living room in my pjs (come on, you know you do it), it wasn't. Why?

One of my closest friends is heading to the doctor this afternoon. She found a lump the other day while working out. She's not quite 30. And while we don't know what this lump is yet, the fact is that she's anxious and we're all holding our collective breath.

Another friend found a lump this morning.

My stepmother has a port and is receiving chemo.

I can't look at any of them and say that $3000 is enough and still be able to sleep at night.

What Makes You Stay

My dad & stepmom just got new carpeting in the entire house, plus new living room & bedroom furniture. That probably doesn't sound like such a huge deal. But let's consider that they've been married for 15+ years. Most of the decorating in that house was done by my dad's second wife or my mom. It's not that he particularly enjoyed the decor that was in the house. He just didn't see the point in changing things, because he wasn't sure that my stepmom was going to stick around.

When Hurricane Katrina hit, the downstairs portion of the house (the garage area) was almost completely flooded. The majority of the things that got ruined belonged to my stepmom. As they were putting stuff in a dumpster, she turned to my dad and said, "Do you believe me now when I say I'm staying?"
***
I was asked to take on a pretty big project earlier this year. It was a chance a lot of people I know would have jumped at. I didn't walk in to it blindly. I knew it was going to be a lot of work, and it continues to be. And I love it. I love the late nights, the spreadsheets, the emails. What I didn't anticipate was being called the names that I have been or the threats that have been directed towards me. It would be so easy for me to wash my hands and say, "I'm done. Someone else needs to take over. It's not worth it." But it is... it IS worth it. And there are these amazing, once in a lifetime moments that have come from being part of this that I wouldn't trade for the world. So I stay.
***
What makes you stay? What makes you look at everything around you, everything that points to the fact that you should walk away, and still decide to stay? How do you know when it's worth it, despite what others say? When your heart is tired, what makes you hang in there?

Only $2,300

I met my $2300 fundraising minimum today for The 3 Day!

*does a happy dance*

Time to raise the goal and get back to work.

What? You thought I was done at $2300? Nope.

Fundraising is a HUGE part of The 3 Day. There is a $2300 fundraising requirement. If by one month after the walk you have not raised that money, it comes out of your own, personal pocket. That's right, YOU are responsible for it! But the truth is, the majority of walkers raise their $2300 before their walk happens.

"Well, what if I want to raise $2300 and then stop?"

That is completely your choice. BUT... if that is what you're deciding to do, allow me to introduce you to a few people:

First up, is George. If you've been part of the Boston 3 Day, even just once, then you know George. He carries a stick with him... a very large stick. And whenever he arrives at a pit stop or lunch or camp, he yells out, "HONEY! I'M HOME!" And we all yell back at him in greeting. I had heard about George the first day I was in camp, and finally met him on Day 2 at lunch. His smile and laugh are contagious. He lost his wife in 2009 to cancer. Both of his daughters have passed away. And yet, he smiles and laughs and walks and passes out hugs.

Then there's Dusty. Trust me, you can NOT miss Dusty. He's the tall, bald headed dude... walking around in a pink bra. Yep. A pink bra. And it sparkles, or has tassels, or lights up, or something. But you can't miss him, and you don't want to. He will crack you up, motivate you to walk another mile, or run in to the street to retrieve your run-away water bottle (thank you, Dusty!). He's been on Oprah, has pictures of himself and Tim Gunn holding a pink bra, and shows up at nearly every breast cancer fundraiser in his area. I could tell his story, but he's much better at telling it himself: Why Dusty Walks

Finally, there is Betty. Unfortunately, you can't actually meet Betty because she passed away 11 years ago from breast cancer. I wear her name on my shirt and carry her picture around my neck when I walk. I was never able to meet Betty, either. But I have met her wonderful family, including her son, Danny, who has made it his mission in life to help end this disease. He's very blessed to have a celebrity platform to stand on from which to do it, but even if he didn't, I have no doubt that he would fight just as hard. I'm blessed to work with him on a website dedicated to her and the fight against breast cancer: RememberBetty.com

I can't imagine sitting down and explaining to any of these three people that I'm only planning on doing the minimum amount of fundraising. I have no doubt that, with a smile on their faces, they would all say that was great, because $2300 is a lot of money. But for me, it's not ENOUGH money. It will only be ENOUGH when there is a cure for breast cancer. Until then, I'll celebrate meeting my minimum for a few minutes, and then I'll raise the bar.

June 23

Bobbette will be receiving her new kidney on June 23. Thank you to everyone who has gotten tested, spread the word, prayed, or even thought about her during this time. On behalf of Bobbette, her family and friends, we love you.

Dropping The Ball... or The Kidney

I don't really know how to begin this blog, but this seems like the most appropriate way. Vanderbilt University Medical Center, in particular their Organ Transplant Program, completely and totally dropped the ball with Bobbette's kidney transplant.

Since January, we have been told that the first person on the list of potential donors was going through the final stage of testing. While this testing is extensive, including a psychiatric evaluation, blood work, etc., it seemed to be taking a bit too long. The donors who had made themselves known to us continued to check in with Vanderbilt every so often. They were told the same thing each time, "We're testing the first person. Don't call us, we'll call you."

With Bobbette sitting at five percent kidney function, we became increasingly worried about the lack of progress. They have been doing all they can to keep her off of dialysis. The veins in her arms are shot after years and years of blood work and procedures. The alternative to using the veins in her arms for dialysis would be to put in an abdominal port. They are hesitant to do that because of her previous liver transplant, and because that would essentially create an open wound in an immuno-compromised patient. (Her body doesn't fight infection due to the anti-rejection medications she has to take.)

Bobbette received a phone call earlier this week to tell her that she was being activated on the waiting list for a kidney. This wait is approximately three to five years long. After asking why, she was placed on the phone with Margot, her transplant coordinator. Margot informed her that she was afraid some of the donors had "slipped through the cracks," and that we needed to have the ones we knew of contact Vanderbilt. Thanks once again to the power of Twitter, several of the donors contacted Vanderbilt. What happened next was nothing less than shocking to me.

One donor was specifically told to stop calling; that Vanderbilt had this under control and they were testing the first person. Even after explaining that they had been instructed to call, the donor was still treated in a disrespectful manner. After several phone calls to Vanderbilt, the next donor on the list was finally contacted. We're hoping that the final round of testing for them will begin soon.

It took calling out Vanderbilt publicly on Twitter to get a response. Their media department requested an email with information. After sending that, I was assured that things had been sent to the head of the Patient Advocacy program at Vanderbilt. Thanks to some wonderful friends, we were also given the information that allowed us to begin the process of lodging a formal complaint with UNOS, which handles all transplants. And thanks to a mother who is high up in the medical world, we are looking in to our options with Joint Commission.

Personally, I have lost a lot of faith in Vanderbilt University Medical Center. Yes, they are supposedly doing what they can now to rectify the problems that have occurred, but that's only been at the non-stop urging of family and friends who knew enough to ask questions and not accept half assed answers. What about the people who don't have someone to do that for them? How many times has this happened before? And how many times will it happen again? A link in the chain is broken, and it needs to be fixed.

"Just" Breast Cancer

I'm sensing a theme in my blogging pattern lately. Someone says something that rubs me the wrong way, and I then blog my way to proving them wrong. This week is no different. This week's statement is courtesy of someone I asked for a donation:

"Well, if it's JUST for breast cancer, then I'm going to have to say no."

Just? JUST?!

I'm going to skip over the statistics that we've all heard about the number of people who die every year from breast cancer. I'm going to skip over the number of people who have survived breast cancer thanks to early detection and treatment. Instead, I'm going to tell you about my friend, Allison.

That's Allison and I at the Race For A Cure in Nashville this past October. That was also one week before she had a 4 pound tumor taken off of her uterus. Here's her story:

In March of 2010, Allison learned that she had a very large fibroid tumor attached to her uterus. She had a great team of doctors that quickly ruled out the tumor being cancerous. She was placed on Lupron Depot shots for 6 months in hopes of shrinking the tumor before the doctors could even consider doing surgery to remove it. They weren't sure that they would be able to remove only the tumor even after these shots. A hysterectomy at age 26 is what Allison was potentially facing. On top of this, she had to have a catheter inserted because of the position of the tumor.

After an MRI in July 2010, it was determined that the shots had been successful in keeping the tumor from growing, but they had failed to shrink it at all. Allison was sent to a fertility specialist as a last ditch effort to find a miracle to shrink the tumor. The specialist decided to keep her on the shots, but also put her on drug called Femara.

Femara is commonly used in post-menopausal breast cancer patients in place of Tamoxifen.

After being on Femara for a few weeks, Allison started feeling better. Her organs that had been compromised by the tumor were functioning better. She was even able to have the catheter removed. On October 15, she underwent surgery to remove what had become a 4 pound tumor, and that was AFTER it had shrunk from the medication. The surgeon was able to remove only the tumor, keeping Allison from needing a hysterectomy at such a young age.

Medications like Femara don't just miraculously appear on the market. They have to be researched, developed, and tested. The money to fund that research, development and testing doesn't appear out of thin air either.

Before you say no to a donation that "just" goes to breast cancer, think about Allison. Because someone said yes, she is able to continue with a normal life and, hopefully one day, she'll give me a niece or nephew. I like the way Aunt Abbie sounds.