Waiting-Place: Answered Prayer

I wanted to share a few of the things that led up to the idea of Waiting-Place. The first was praying for my husband. Asking God to heal and bless Mr. 1inamillion. Not just take away the sarcomas, but to heal his heart, help him find a purpose in this battle and to free him from the uselessness and frustration he feels. This is something I prayed for many times and still do.

I began to feel the urge to do something! I wanted to put together a fundraiser for sarcoma research in his honor. As I began researching, I found several great, but small, foundations and struggled to settle on just one on which to focus. I also was questioning what kind of fundraiser? All of the standards ran through my head--walks, a 5k, golf tournaments, etc. As I surfed online, I hunted for one in particular I remembered reading about in Self magazine, Cycle for Survival. This was founded by a sarcoma patient with a story similar to Dane's. She wanted to do something to advance research for orphan cancers and with the help of friends hosted an indoor cycling event, as she was a regular of spinning classes and loved cycling. I was incredibly impressed with her story and their focus on research for orphan cancers like sarcoma.

I first thought, yes, we can put together a Cycle for Survival event here in Oz. But wait...Mr. 1inamillion does not cycle. This needed to be something that he can be a part of whole-hearted. He doesn't run and he doesn't golf. What does he do? He sits. He waits and does chemo...all of his energy is spent in waiting rooms and treatments. Ugh....... He fishes and likes to bowl....maybe a tournament or 'a-thon' of some sort? When was the last time he did that? He doesn't have the energy left for it, it all goes to fighting this stupid cancer. Ugh..... What if?

What if we can raise money just doing what he does? Runners run, Golfers golf, Swimmers swim and they gain sponsorships doing it to raise money for their cause. Patients wait. Who says we can't sponsor that?

It began to take shape in my mind, and the shape it took was a snow ball rolling down hill. It got bigger....this could be every patient like Dane with orphan cancers. And bigger...patients with common cancers, too....leukemia...breast cancer....and bigger......Parkinson's patients like my mom could raise money to fund their research too.....Alzheimer's patients like my friends' mother and, heck, even people like me with chronic illnesses such as arthritis, fibromyalgia, diabetes. The list just grew. The potential to fund numerous research foundations for countless afflictions is huge.

We all have one thing in common, our fight takes patience. We all spend time and energy in waiting rooms, tests and doctors offices. The time and energy we spend might vary, but that's no different than the effort varying between a one mile walk, a 5k or a marathon.

I should share with you that my real job involves helping design systems and web applications. Now understand that I'm not smart enough to develop it myself, I simply say things like, 'we need a button over here that does this when we push it' and then someone, way smarter than I, writes the code and makes it better than I ever imagined. Then I market it, so to speak. I help communicate the changes to those that use the system and train them to use it. So as Waiting-Place began to really take form in my mind, it began to look like a site that patients can track their appointments and time and share with their social network to potentially sponsor. Those who have a heart for a cause but aren't connected with a particular patient could potentially find someone to sponsor as well.

So a patient has an added purpose to their waiting, the sense of uselessness diminished. My prayer was being answered for Mr. 1inamillion and many, many more. Wow.

I looked up the definition of patience and there are two:

1. The bearing of provocation, annoyance, misfortune, delay, hardship, pain, etc. with fortitude and calm and without complaint, anger, or the like
2. quiet, steady perseverance; even tempered care; diligence

Loving what was behind door number 2, I looked up the definition of perseverance:

1. steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulty, obstacles, or discouragement
2. continuance in a state of grace to the end, leading to eternal salvation

Waiting-Place has the potential to completely change the patience demonstrated in waiting rooms! No more 'suck it up and wait', but steady perseverance in the course towards a cure, just through sponsorships that fund research. How cool is that?

I learned of the Pepsi Refresh opportunity through the Kyrie Foundation's effort. They were in the running for a $250k grant in October. A friend is on their board, so we saw a lot of the pleas for votes on Facebook and answered them. They didn't get it, but they did come so very close; they ended the month in fourth place but needed to be in the top two. I am amazed that we were even accepted for voting this month with the $50k opportunity and that we are currently sitting in the top third. It takes an enormous number of votes and we must make it into the top ten. We have a long way to go, but this funding would give us the money Waiting-Place needs to launch in a big way.

The Kyrie Foundation is focused on pediatric brain cancer and is just one of the many foundations that could potentially receive funds from sponsorships through Waiting-Place. I recently learned that another foundation I found supporting sarcoma patients is closing. I am unsure of the reason, but I guess the battle for funding may have played a part. It's tough, and takes so much effort. I wonder about the difference Waiting-Place could have made for them. Imagine the accomplishments research foundations can make with funding that took little to no effort on their part? Such huge potential for medical research awaits in Waiting-Place. Potential for so many more answered prayers.

So again, I ask for your support. Please vote, please spread the word, and please pray for Waiting-Place.

• Text votes by sending 105175 to 73774 on your cell phones.
• Vote online at www.refresheverything.com/waitingplace
• Vote on Facebook with Pepsi's Refresh Everything application
• AND if you have an Android or iPhone, find the free Refresh Everything application, search & vote for waitingplace there, too!

The Places We Go

We hit the road to St. Louis last Tuesday for Dane's chemotherapy treatment. This journey is made every three weeks but Things 1 and 2 were along for the ride on this trip. Luckily, Siteman Cancer Center does waiting well. Along with reading our books and playing DS games, we did puzzles, played chess, Uno and painted tiles. Arts for Healing provides supplies for cancer patients and their loved ones to paint porcelin tiles that are displayed throughout the center. The tiles are also used on greeting cards to raise money for the hospital and we even have the ability to special order cards with our own tiles. Here are those we painted on Wednesday:

Lucy's:

Gabe's:

Dane's:

Mine:

Siteman Cancer Center is located in the Center for Advanced Medicine at Washington University/Barnes-Jewish Hospital. As the kids and I wondered around while we waited, we stood at a balcony overlooking the fourteen floors. 14 floors of advanced medicine. That's a lot of people waiting for a lot of various reasons. Muscular Sclerosis, MD, Cerebral Palsy, ALS, Lupus, Alzheimer's, Parkinson's, Diabetes, countless cancers and a number of illnesses of which I have never heard, I'm sure. 14 floors of people feeling powerless, feeling stuck in a useless place.

Fourteen floors of people who could potentially be raising money for their cause, by doing what they're doing. Just as a runner gains sponsors for running miles, the patients on those 14 floors could gain sponsorships for their patience. Every doctor appointment or test, every hour in treatment could earn funds for research. Patience that delivers progress in the Waiting-Place. Dr. Seuss might have seen fourteen floors of useless places. I saw 14 floors of promise.

The potential is huge....and its knocking at the door. Our application for the $50,000 grant from Pepsi's Refresh Everything project has been accepted for January's voting. We just need to make it into the top ten to get it. Will you help us get there? You can vote via Facebook, or from every email address you have at www.refresheverything.com/waitingplace. You can also vote by texting 105175 to PEPSI (73774).

Happy New Year

It's the end of a long week. We drove the eight hours from home to St. Louis on Tuesday, spent 5 hours at Siteman Cancer Center for Mr. 1inamillion's chemo treatment on Wednesday, went back for a couple of hours on Thursday for him to get his Neulasta shot then hit the road towards Texas. We made it to Arkadelphia, Arkansas and stopped for the night, then got up and drove the remaining 5 and a half hours to Livingston, TX. Today? Zero travel! For Dane and I, anyway. Things 1 and 2, however, have made countless loops on the 4-wheeler with their cousins.


I was able to walk a few miles this morning and contemplate my goals for the new year. My goals for 2010 were to complete a bible study and my first road race. I'm happy to say that I achieved both. I managed to not come in last at Victory in the Valley's East Meets West 5k, and I made it through two bible studies and I hope to repeat those accomplishments again this year. The goal I settled on for 2011 this morning is simply to be a better steward of gifts God has given me. What does that mean? Really, it boils down to all of the typical resolutions.

• Be more attentive to my health. Lose the weight last year's gluttony earned and take care of the body I've been given. It means slowing down when the pain suggests I should; eating mostly fuel my body was intended to use (food God makes) and stopping at what it is capable of burning.


• Reduce our spending and our debt. Be a good steward of the job and money God has given me. Give back enough that it hurts a bit.


• Using my time as I should. I can't control where and often how it must be spent, that is clear. Regardless of where we are, am I making the most of it? Am I spending it as a servant? Am I following his plan for me? I hope we are living to the fullest, soaking it all in. Time is a gift.

Lose weight, save money. I have all of the usual to accomplish. My hope is to remain aware that it all belongs to God. Perhaps maintaining proper perspective will enable me to achieve it.

Timing is Everything

I started December focused on timing. At 12:00 AM EST on December 1st I submitted an application for a $50,000 Pepsi Refresh grant for Waiting-Place. It had to be done on the first day of the month, and it had to be one of the first 1,000 which were received in just eight minutes. As Alanis Morisette sings in my head, I tell you that now we can only wait (Isn't it ironic, don't you think?). We will find out on January 1st if it was accepted and up for voting. Keep an eye on Facebook & the blog! We will be begging you, BEGGING you, to vote a lot and frequently to get us into the top ten to win. It will get us such an awesome start, but it is a total long shot. We are just forming. Really, I feel like I threw a Hail Mary pass on our very first play.


This time of year I think about my mom. A lot. This project has not distracted from that one bit. I will tell you that my mom made awesome fudge at Christmas and her idea of breakfast was Diet Pepsi and a Snickers. When I submitted that application, I was wrapped up in her robe and as it processed, a Diet Pepsi can spun around on my computer screen! I truly hope Waiting-Place can do as much for people like my mom as it will for those like Mr. 1inamillion.


It's proving easier for people to understand the concept of sponsoring time in chemotherapy for a cancer patient. That takes hours, if not days, in a treatment facility. It's harder to grasp the value in an appointment for a patient with something else such as Parkinson's disease. She might just see the neurologist for a few minutes. True. An athlete completes a 5K in about the same time. Much like running a race, there's a lot of effort that comes before and probably a bit of pain after.

My mom taught me that timing is everything. It's the secret to making the family fudge and was crucial with her Parkinson's. She would struggle to control her limbs, take her pills and still struggle while she waited for the medication to kick in. Once it did, she could function for a while until it approached time to take her medicine again. It always wore off before then, offering more times throughout the day were she battled to stay still, to keep her balance, and later, to move. Anywhere she needed to go and anything she needed to do had to be done in that sweet spot, when medication was working but not in danger of wearing off. It took some practice to learn to maneuver with that body, to determine how long she could last, to time her day, to determine what took too much effort and what was worth the difficulty. Making a doctor's appointment that might not be according to her own schedule? It meant shifting what she had down to a precision. Maybe stretching it a bit further beforehand or pushing herself a little harder.

Moving from house to car, car to office building, lobby to third floor. Receptionist to lab, lab to exam room, nurse to resident, resident to doctor. Exam room back to receptionist to elevator to lobby to car to pharmacy and back home. By the end, limbs are certainly shaking, feet cramping. A little like an athlete after a hard race. Exhausted and spent, but no sense of accomplishment. No t-shirt for the effort.

When you've seen it first hand, it's easy to recognize value in that time and see efforts worth sponsoring to benefit the cause. My focus hasn't been on Christmas cookies or family fudge yet, but on research foundations, non profit status and grant applications. Even still, my mom has been very much on my mind.

Joys

Our Christmas tree is up! This might seem like a small thing to most, but those of you with whom we attend church, you know it is a JOY in our house. Setting up and decorating our tree is not without challenges but it is still a simple accomplishment. The pre-lit tree had very few lights that worked. I did not set about the task of fixing. Oh no, I just strung around more lights as though the dead bulbs are not even there. And obviously I left the tree leaning, as it does every year. Simple. But as Thing 1 shared in church on Sunday, it was a JOY that we were setting up the tree that day.

It's not a joy because he is aware of Christians around the world that may be unable to freely celebrate Christmas. Nor does he announce it as a joy because he thinks about the many families in our own neck of the world that can't afford a Christmas tree. You see, a couple of months ago our worship leader said to come every Sunday with a joy to share and our young Alex P. Keaton does what he's told. He has a JOY to share every Sunday. He announces joys from grade school and Boy Scouts and the whole congregation was counting down with us to Grandma's arrival for Thanksgiving. If you give it deep thought, setting up our tree together as a family is a big joyous occasion. We are free to worship, we can afford a tree and gifts to place beneath it and daddy is home to point out the gaps in need of ornaments. However, Thing 1 just enjoys the Christmas tree and acknowledges the joy.

Normally I just smile and shake my head a bit when he shoots his hand up in service with a JOY to announce, but sharing the simple joy of the tree made me think back to my favorite picture of the kids and honestly I was lost in thought for awhile. I refer to this favorite as our 'lemonade picture'.

They are three and five years old in this picture and practicing fishing in the backyard. What you don't see here are the lemons. Well, aside from the mower that is their dock. It doesn't run. The picture doesn't show that the last time that lemon was used was eight months prior when Mr. 1inamillion fell off and injured his shoulder. The injury that led to the discovery of a sarcoma on his shoulder and another in his lung. You don't know that their father had been through four months of chemotherapy and four surgeries. The day the picture was taken we had hoped he would feel well enough to go fishing, but he didn't. We all were disappointed, but they made the best of it by practicing their casts in the backyard. They giggled and had a ball. With Mr. 1inamillion resting in the living room, I watched them through the kitchen window and thought...at the very least, our kids will learn to make darn good lemonade.

Mr. 1inamillion is in St Louis for chemotherapy tomorrow and will eat great Italian food on the Hill tonight. We will have fun here with basketball practice and a third grade performance of The Nutcracker Suite, maybe followed by ice cream. We are definitely learning to be thankful for the simple gifts and make the best of every situation. There's a lot of lemons, but there is JOY in setting up Christmas trees and throwing a line from impromptu fishing docks. We thank God for that.