The Ramers have terrific support and I could never properly express my gratitude for the folks that have helped us. However, my friends in Ohio, while always willing to lend an ear, will tell you that there are so many things that they simply cannot understand, relate to or fathom. Even the parents of children with cancer, who understand the worry and fear, cannot appreciate the breadth of our concerns, because they are limited to one type of cancer. I am not in any way minimizing their worry, but with LFS, we are never done and need to be on alert for every brand of cancer. This concern is justified by the four cancers that we have dealt with thus far.
The disconnect between our freakish reality and that of the people that we love was terribly isolating. But this loneliness melted away when I found others with LFS, making friends and finding support from fellow mutants who understood our challenges and had experiences similar to ours. I bonded with a wonderful group of friends in Boston last year. We began to feel guilty in a way, for having the fantastic support that comes from meeting one another.
So, together, we resolved to facilitate gatherings for others, so that they might be as blessed as we have been.
Over the summer, we formed a non-profit Living LFS, which focuses on the way that we are living with a genetic predisposition to cancer. I would point out that since we met last October, none of our eight board members have been 'medically quiet,' as I like to say, each dealing with chemo, surgery (or both) for themselves or a family member. Despite facing major surgery in the form of double mastectomy and reconstruction, our secretary DeAnn worked tirelessly to file incorporation paperwork and got our application for non-profit status rolling. It is an awful lot of paperwork, for the record.
We planned a mutant gathering in Portland, pulling it together in under two months. DeAnn was ultimately unable to come, being only 10 days post-op, sporting several drains and dealing with a new diagnosis. I think that this truly illustrates what it means, Living LFS. You work while you can, recognizing that cancer might interrupt and can rob you of the fruits of your labor. While bitterly disappointed, we push through and carry on.
This humbles me, inspires me, how these ladies work doggedly in service to others despite their own concerns.
At one point, there were troubles, worries and bumps in the road for me as we formed this organization. I wondered if this was what I was supposed to be doing-- devoting a significant portion of my time to a nonprofit dedicated to patient support, when I personally find so much comfort in research. I am involved with a number of organizations. I seek to find a balance between them.
I came to Portland looking for some breadcrumbs and found myself in a bakery--and I do not mean Voodoo Donuts, although those were also very good. I do know that this is exactly what I am supposed to be doing.
Last week, I had reminded Brent that I would be going out of town. "Oh, to your cancer conference..." I argued that it wasn't a cancer conference, evidenced by the fact that I was going, and had never been sick.
"You are just riding my cancer coattails, mom. It is cancer by proxy." I laughed rather hard at that...and throughout the weekend, laughed some more, comfortable with others who understood. This was not an angry gathering, nor one filled with despair. We are determined, and hopeful. We laugh despite (or because of) our challenges.
We are a vibrant mutant community, and we were blessed to receive more offers of support for Living LFS, folks giving of their time and talent to help their fellow mutant via our infant organization. It was incredibly meaningful and I am very excited to be working together.
I often think that when you are given much, much is expected. When you do good things with what you have been given, you are granted even more. I count my blessings every single day. Hearty laughter with my mutant friends over the weekend was one such blessing. I will take a second serving of this, any day of the week.
Tuesday, October 21, 2014
Wednesday, October 8, 2014
'Mayberry' no more
Yesterday was Brent's 15th birthday. I looked at him with bewilderment, like so many other mothers do as their children morph into adults, right under their nose. I remembered his birthday three years earlier, as his hair fell out at the beginning of his osteosarcoma treatment and as I worried about our collective future. Today, we have much to celebrate and so much to be grateful for.
Along with being the beginning of 'birthday season' in our house, September is pediatric cancer awareness month. Add this to the beginning of school chaos and you can see that we have certainly been hopping. But in stark contrast to our fall of three years ago, it has been a really wonderful sort of busy.
We are most grateful for the many instances of pediatric cancer being featured over the past month, such as the efforts of Hoda Kotb and the decision by the Cincinnati Bengals to support Devon Still and his young daughter who is currently battling advanced neuroblastoma. Sharing these stories, featuring children in their cancer struggle is most meaningful, particularly when they also provide opportunities to help fund research.
To cite our own example, a week ago, Brent participated in the annual Flashes of Hope event. He suited up in a tux and was paired up with James Jones of the Cleveland Cavaliers, walking the runway at Quicken Loans Arena along with other pediatric cancer survivors in front of over 1500 people. He looked great, very confident in his stride and most outrageously, pulled out his phone and took a selfie on the catwalk. We hooted and howled from our seats.
We have long teased Brent for being Mayberry-like, in stark contrast to Lauren's outgoing "Hollywood" personality. It appears that we are going to have to amend our nickname...perhaps "Broadway" would be more fitting for Brent now, reflecting his affection for New York City.
The audience watched a video in which Alex and some other siblings describe the impact of cancer on their lives. They may have been unaffected physically, but certainly have not been spared emotionally.
http://vimeo.com/107935878
Then Dan and I watched the bidding, as the research dollars were collected. I am unable to articulate how meaningful it is to witness the generosity of Dan Gilbert, of the Cavaliers, of Clevelanders in general. I believe that the bad news too often gets the attention. I was reminded again of how wonderfully kind people can be, whether we choose to focus on it or not.
I volunteer at University Hospitals, and on Monday was asked by a woman how it was that I came to be involved. I shared the basic outline of our story, of our four pediatric cancers. She looked at me wide-eyed, fairly horrified, and asked,"How do you deal with it?" I assured her that the kids were doing fine, melanoma treatment withstanding. Really. Truly.
But today, thinking about it, I know that the better answer lies in having faith. I really, really struggle with the notion that it is all beyond my control, which I openly acknowledge. But every morning, to bolster my faith, I read about the latest research, about all cancers, not knowing what cancer I might need to understand next. I know that this may seem odd, but I find great comfort in the knowledge that scientists, physicians and researchers are all working hard to figure out a solution. It reassures me, and helps me to cope.
It gives me hope.
So, last week, in a magical evening, over one million dollars was raised via Flashes of Hope, dollars that will fund research, and by extension, helped to support my faith. Because on this evening, I saw my son who lost his right pelvis to cancer, and who was supposed to lose that leg altogether, walk confidently across the stage, happy and healthy. It was a celebration. An affirmation. A gift from God and an answer to countless prayers.
While I know that we are not necessarily done with cancer, we have been enormously blessed to get to this point. I am both grateful and hopeful.
The gold ribbons have been exchanged for pink ones now, as breast cancer gets center stage for a month. But for us, every month is about pediatric cancer.
Many thanks to Flashes of Hope, Allison Clarke and the Cleveland Cavaliers for providing such a terrific night, supporting children with cancer as well as the researchers that are trying to cure them.
Along with being the beginning of 'birthday season' in our house, September is pediatric cancer awareness month. Add this to the beginning of school chaos and you can see that we have certainly been hopping. But in stark contrast to our fall of three years ago, it has been a really wonderful sort of busy.
We are most grateful for the many instances of pediatric cancer being featured over the past month, such as the efforts of Hoda Kotb and the decision by the Cincinnati Bengals to support Devon Still and his young daughter who is currently battling advanced neuroblastoma. Sharing these stories, featuring children in their cancer struggle is most meaningful, particularly when they also provide opportunities to help fund research.
To cite our own example, a week ago, Brent participated in the annual Flashes of Hope event. He suited up in a tux and was paired up with James Jones of the Cleveland Cavaliers, walking the runway at Quicken Loans Arena along with other pediatric cancer survivors in front of over 1500 people. He looked great, very confident in his stride and most outrageously, pulled out his phone and took a selfie on the catwalk. We hooted and howled from our seats.
We have long teased Brent for being Mayberry-like, in stark contrast to Lauren's outgoing "Hollywood" personality. It appears that we are going to have to amend our nickname...perhaps "Broadway" would be more fitting for Brent now, reflecting his affection for New York City.
The audience watched a video in which Alex and some other siblings describe the impact of cancer on their lives. They may have been unaffected physically, but certainly have not been spared emotionally.
http://vimeo.com/107935878
Then Dan and I watched the bidding, as the research dollars were collected. I am unable to articulate how meaningful it is to witness the generosity of Dan Gilbert, of the Cavaliers, of Clevelanders in general. I believe that the bad news too often gets the attention. I was reminded again of how wonderfully kind people can be, whether we choose to focus on it or not.
I volunteer at University Hospitals, and on Monday was asked by a woman how it was that I came to be involved. I shared the basic outline of our story, of our four pediatric cancers. She looked at me wide-eyed, fairly horrified, and asked,"How do you deal with it?" I assured her that the kids were doing fine, melanoma treatment withstanding. Really. Truly.
But today, thinking about it, I know that the better answer lies in having faith. I really, really struggle with the notion that it is all beyond my control, which I openly acknowledge. But every morning, to bolster my faith, I read about the latest research, about all cancers, not knowing what cancer I might need to understand next. I know that this may seem odd, but I find great comfort in the knowledge that scientists, physicians and researchers are all working hard to figure out a solution. It reassures me, and helps me to cope.
It gives me hope.
So, last week, in a magical evening, over one million dollars was raised via Flashes of Hope, dollars that will fund research, and by extension, helped to support my faith. Because on this evening, I saw my son who lost his right pelvis to cancer, and who was supposed to lose that leg altogether, walk confidently across the stage, happy and healthy. It was a celebration. An affirmation. A gift from God and an answer to countless prayers.
While I know that we are not necessarily done with cancer, we have been enormously blessed to get to this point. I am both grateful and hopeful.
The gold ribbons have been exchanged for pink ones now, as breast cancer gets center stage for a month. But for us, every month is about pediatric cancer.
Many thanks to Flashes of Hope, Allison Clarke and the Cleveland Cavaliers for providing such a terrific night, supporting children with cancer as well as the researchers that are trying to cure them.
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