Mr. 1inamillion's first sarcoma was diagnosed roughly four months after we married and moved to Indiana. I remember the first visit to IU Med Center as the longest day of our life. (note, I was in labor with 9.5 lb Thing 1 for nearly 2 days before the emergency c-section. That still comes in second to this day at IU.) We saw a parade of doctors while sitting in a small exam room. Each one wanted to press on his belly because although the tumor was the size of a soccer ball, you couldn't see or feel it externally. At the end of all of that, they performed a needle biopsy.
He was put in a recovery room after the biopsy with another patient. I remember just resonating on our differences. We were approaching our first holiday season as newlyweds. The couple on the other side of the curtain clearly was not. I don't think we ever knew why he was in there but I remember hearing the patient's wife and grown daughter talking about the impacts of this hospital stay. They were going to need to change from their Thanksgiving traditions for the first time in many years.
I remember being the first ones into the waiting room during his first surgery, and the last ones out. I also recall that I was the youngest one there. We were always the youngest. Excluding the rare presence of a pediatric patient, the patients surrounding us then were old. Thirteen years later, they are still older. The support groups tend to be full of women with grown children, lifetimes of memories accumulated. Also their cancers are very different. People haven't heard of or understand sarcoma. We have simply faced and accepted the fact that one in a million is lonely.
I never really realized how lonely it was until it wasn't. Two weeks ago I received a Facebook message with the subject title "You don't know me, but we have at least one thing in common". She spotted my Facebook profile picture on the Sarcoma Foundation's page, a picture of Lucy and I. I cried as I read that we had more than just one thing in common. Her things 1 & 2 are ages four and two, her husband has liposarcoma, has completed 28 treatments of radiation and they are approaching his first surgery. His radiation oncologist is even the doctor Dane saw when we lived in Florida. I cry again as I write this. Tears of joy and relief that someone else knows and understands this experience; and tears of grief that someone else must also endure this experience.
I have been trying to recall the feelings and thoughts they must be having so that I could perhaps offer a bit of comfort. His surgery is tomorrow, the sarcoma they are removing is near his spine.
Dane's first surgery was frightening. It was long and difficult. He took every pint of A negative they had on hand. He was puffed up a bit like the Michelin man from all the fluids afterwards and they kept him sedated and in ICU through the following day. That all might not sound comforting, but to me it is. Each surgery since, we have had that hard fought victory under our belt. The power of prayer had been proven, our fears diminished.
I ask that you please pray with us for the Howard family and their surgeon, Dr. Scarborough. (My mom always said to pray for the doctors, too.) The most powerful thing I can offer is the sharing of our family's prayer warriors. You all have such a proven track record!
"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18
"But blessed is the man who trusts in the Lord, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." Jeremiah 17:7-8
Blessed Week
I've had a pretty awesome week. Last weekend was fabulous. Thing 2's team won their game Saturday morning and I love watching them play. Saturday night was the Toby Mac concert. He is my favorite and the show was so...much....FUN. Non stop energy, lots of dancing, praising God with the very loud soulful gumbo, funky Jesus music. If you get the chance to catch one of his concerts, take it. So....much....FUN! I still feel like I'm radiating a bit of joy from it.
I really didn't think it could get better, but something amazing happened on Sunday. A miracle, really. I had hoped for it for months and had actually given up. Mangy Cat went to the KS Humane Society to be adopted by a family that wants him. YEA!! It took a while, but finally all members of the household were ready for him to move on, so we helped him as fast as we could that day. The tiny kitty that took up residence beneath our car in Douglass barely ventured out of our garage in Mulvane. MC whom was once so tiny and pathetic, was handed over as a great big furry healthy cat ready for adoption. After six months, that Mean Cat was still not nice to Chloe (the one cat I like) so I'm really not sure who was more excited about his departure. It's a pretty tight race but I think Chloe and I might actually be edged out by Gabe. He has litter box duty.
Monday we headed to St Louis for Mr. 1inamillions appointments. We got to spend some time with the bonus kid and visit some of Dane's old friends. His scan results were stable. Great news! He will continue on with the same treatment and we will continue regular ventures to St. Louis. We started the trek home Wednesday afternoon and were not long into the drive when we collided with the snow storm on I-70. One of the things that I hate more than driving I-70 would be driving 40 miles below the speed limit on I-70 in blinding snow. However we did listen to a great book along the way, Plan B by Pete Wilson, and we made it safely to stay with family halfway along the journey. The highways were in good shape yesterday for our final stretch home to the kids, dogs and one happy cat, all glad to see us.
What joyousness awaits me this weekend? Laundry. Cleaning. Grocery shopping. Baking. Don't worry, it gets better. No road trips. Another basketball game played by six year olds. Wii Just Dance with my favorite six year old. Planning a Rockstar birthday party for that six year old who will be seven next week. Yes, God is good.
I really didn't think it could get better, but something amazing happened on Sunday. A miracle, really. I had hoped for it for months and had actually given up. Mangy Cat went to the KS Humane Society to be adopted by a family that wants him. YEA!! It took a while, but finally all members of the household were ready for him to move on, so we helped him as fast as we could that day. The tiny kitty that took up residence beneath our car in Douglass barely ventured out of our garage in Mulvane. MC whom was once so tiny and pathetic, was handed over as a great big furry healthy cat ready for adoption. After six months, that Mean Cat was still not nice to Chloe (the one cat I like) so I'm really not sure who was more excited about his departure. It's a pretty tight race but I think Chloe and I might actually be edged out by Gabe. He has litter box duty.
Monday we headed to St Louis for Mr. 1inamillions appointments. We got to spend some time with the bonus kid and visit some of Dane's old friends. His scan results were stable. Great news! He will continue on with the same treatment and we will continue regular ventures to St. Louis. We started the trek home Wednesday afternoon and were not long into the drive when we collided with the snow storm on I-70. One of the things that I hate more than driving I-70 would be driving 40 miles below the speed limit on I-70 in blinding snow. However we did listen to a great book along the way, Plan B by Pete Wilson, and we made it safely to stay with family halfway along the journey. The highways were in good shape yesterday for our final stretch home to the kids, dogs and one happy cat, all glad to see us.
What joyousness awaits me this weekend? Laundry. Cleaning. Grocery shopping. Baking. Don't worry, it gets better. No road trips. Another basketball game played by six year olds. Wii Just Dance with my favorite six year old. Planning a Rockstar birthday party for that six year old who will be seven next week. Yes, God is good.
10 days left, 110 to climb
We have ten days to climb at least 110 spots in our effort to win the grant from Pepsi's Refresh Everything project for Waiting-Place. 10 days to move from 119 to the top 10. Long shot. But we all love the long shot. I hear the theme to Rocky in my head as I type. I see Rudy running on the field in the final game of his senior year, his friends and family cheering in the stands. We root for the under-dogs and celebrate when they win. As if we had something to do with it, right? This time, though, we all really can have something to do with it. We all can take part in moving Waiting-Place (which isn't much more than an idea today) to the top 10 and celebrate together when it becomes a reality!
Did you know that you can vote for up to 10 different projects a day? You can place 1 vote for Waiting-Place as well as nine others with each email address you have and each phone from which you text. Today I want to ask you to do that. I am not going to tell you which other projects to support (although my preference is that they are NOT in the $50k category as we are). I just ask that you vote for Waiting-Place, plus 9 others and post a comment on those project pages that you are voting on behalf of waitingplace (text 105175).
There are over a thousand worth while causes, and one of the goals of Waiting-Place is to empower people to support their own fight, so I encourage you to search for some that you care about and vote for those. ALS, Leukemia, Muscular Sclerosis, cancer support organizations, horseback riding therapy programs, animal rescues, school bands, the list goes on and on.
Many organizations will return votes, too, which is why I ask that you comment on their pages that you are voting on behalf of waitingplace (text 105175). We have 10 days remaining, with 10 votes a day and 110 spots to climb. We're a long shot, but I think we might be able to rally and help out a few other under-dogs along the way.
http://www.refresheverything.com/waitingplace
Did you know that you can vote for up to 10 different projects a day? You can place 1 vote for Waiting-Place as well as nine others with each email address you have and each phone from which you text. Today I want to ask you to do that. I am not going to tell you which other projects to support (although my preference is that they are NOT in the $50k category as we are). I just ask that you vote for Waiting-Place, plus 9 others and post a comment on those project pages that you are voting on behalf of waitingplace (text 105175).
There are over a thousand worth while causes, and one of the goals of Waiting-Place is to empower people to support their own fight, so I encourage you to search for some that you care about and vote for those. ALS, Leukemia, Muscular Sclerosis, cancer support organizations, horseback riding therapy programs, animal rescues, school bands, the list goes on and on.
Many organizations will return votes, too, which is why I ask that you comment on their pages that you are voting on behalf of waitingplace (text 105175). We have 10 days remaining, with 10 votes a day and 110 spots to climb. We're a long shot, but I think we might be able to rally and help out a few other under-dogs along the way.
http://www.refresheverything.com/waitingplace
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:
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:
- The bearing of provocation, annoyance, misfortune, delay, hardship, pain, etc. with fortitude and calm and without complaint, anger, or the like
- quiet, steady perseverance; even tempered care; diligence
Loving what was behind door number 2, I looked up the definition of perseverance:
- steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulty, obstacles, or discouragement
- 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:
Gabe'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).
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