We had a lovely Father's Day weekend. On Saturday, we wandered around Cleveland Flea, a monthly gathering of vendors, a mix of those selling retro items and those creating something entirely new, many celebrating Cleveland's 'rust belt chic' status. As a city, Cleveland is an example of something old, getting repurposed with a creative twist. At Cleveland Flea there is an eclectic mix of stalls: organic farms, hand crafted leather goods, jewelry, musicians, food trucks and, (Need it be said?) fabulous people watching opportunities.
Then, we went over to the art inspired "Parade on the Circle," which the Ramers have a long history of attending. Embracing creativity, and often in an effort to get those juices flowing, Dan likes to look at what others come up with. This collection of ideas, often executed with whimsy and on large scale, never disappoints. We have joked that we must be trend setters, because both of these events have really become quite popular...the paper reported that there were 80,000 people at Wade Oval this year. It was fantastic. Our favorite group at the parade had giant stilt people, dressed as characters in Alice in Wonderland having high tea- a truly high tea, as the rolling tables and chairs stood perhaps 15 feet tall.
We rounded out the day with Dan's father at his home, with a bonfire, BBQ and cornhole, which somehow felt like the very epitome of Father's Day. It is not at all surprising that two of these activities involve fire. It was spectacular, and perfect.
We have always encouraged one on one time with the kids, but have not really had time to in the past several years. I am grateful for the opportunity.
The girls went with Dan to the zoo yesterday, which is one of Olivia's all time favorite excursions. Alex will be going camping with Dan in a few weeks, and in his excitement, put up a tent in our front yard, to ensure that we still had all of the poles. Brent cleaned out Dan's car for him (which he declared truly appalling) and will be having a date with him, biking in the park. (We get to celebrate Brent's milestones twice- like learning to walk or riding a bike.)
Dan has always been the one with the good ideas. I am glad that the kids, with some prodding, are coming up with a few of their own. I like that we have been graced with some family time. I am really happy that it appears that we will have some more, knitting our family together with bonds of common experience.
Our kids, I know, have challenges. Lauren and Brent, medically. But all of them have experienced events that are potentially damaging to them psychologically. But I think, truly believe, that they are doing fine. Dan, with his ability to whip up some fun, serving as the example of optimism and making the best of any situation, well, this is his legacy. There are lessons that they take from him: Life can be hard, but we do our best every day. We work hard, take care of our responsibilities and prepare. And then we have fun.
I wonder which bit of creativity over the weekend most grabbed Dan's attention. He does things on grand scale and full of whimsy as well. Sandcastles, snowmen and scarecrows.
And he lets me ride his creative coattails, as he takes the broken or worn out things and repurposes them, making something beautiful.
Monday, June 16, 2014
Wednesday, June 4, 2014
Graduation
It seems that now, at every age, there is a "Graduation," marked with ceremony and celebration. I was unable to attend Olivia's preschool graduation last year. But, while I had initially thought that such a thing was a bit over the top, I must concede that the photos of the munchkins in tiny caps and gowns were absolutely adorable. Her eager anticipation about going kindergarten was no less than her current excitement about going to first grade. She loves school.
Graduation, pausing to note accomplishments and a time of transition, was less frequently celebrated when I was growing up, reserved for the completion of high school, and again for the completion of college. But, while there seems to be more ceremony these days, I hope that there is equal pause for reflection.
I have often said that I would return to middle school or high school for neither love nor money. In talking with others, there is a common memory of it being an awkward transition, of not feeling comfortable in your own skin which, in literal terms was morphing while you watched, not quite child yet not quite adult. Never mind about being comfortable with your place in the world. During those teenage years, the world is filled with equally awkward, morphing beings.
So, as we have recently been immersed in medical transition, punctuated by what I hope to be considered 'final exams' in the form of a broken foot for Brent and a few days later, an EMS visit to our home in the middle of the night, Brent noted that he would be going to the high school next year. I was aware of this in a rather theoretical way, having signed his class selection forms some time ago. But as the march to the end of the school year wraps up, and his days at the middle school can now be counted on one hand, this transition has become far more real.
Last week, there was an academic awards ceremony that we attended. I had never gone to this before, which I find curious. Alex has always been a good student. But early in his middle school years, both boys played travel soccer. Perhaps one (or both) of them had games on that evening and we elected not to go. In Alex's eighth grade year, we were in the midst of chemotherapy for Brent, and there is no question as to why we would have missed.
At any rate, this night marked the accomplishments of honor roll students and academic teams such as Power of the Pen, the math team, and model UN. There was a string quartet and later a flute ensemble. It was a lovely program that they put together. Additionally, there are special awards given for art, strong moral character and inspiration.
Brent received the inspiration award, for maintaining his academic standing despite being absent for nearly half of his middle school years. He received a standing ovation and I wept like a baby.
I think about the awkward changes that Brent has endured at a time when all kids just desperately want to fit in. Brent went to school most erratically, attended bald-headded for a time, on crutches for two years, for weeks with a drain pinned under his shirt, and always with the determination to stay in his advanced classes, and to do the work that was required. While his identity could not be attached to his physical form, which has morphed even more than the average teenager, he was grounded in his intellectual identity and his friendships.
I am most grateful for the environment that the schools here promote, as well as the individual families. The middle school years, which can be fraught with uncertainty and transition have not disappointed us in this regard. Ours was filled with medical uncertainty and perpetual transition. However, the one constant that we found, was the kindness and compassion of the community, particularly in the students at the middle school. The teachers and the staff there have fostered an environment of empathy, and validation, evidenced by the awards given for students who serve as models of courtesy, compassion and respect
I have seen countless other examples of this. Just yesterday, as a part of the Kick-It campaign, where individual students organize events to raise money for pediatric cancer research, a special needs student called the Chardon Polka Band to come play for the lunch periods. They generously agreed, and there were students pushing others in wheelchairs, teachers dancing with each other, with students. It was all fantastic.
While I would still not want to return to the awkward teenage years, if I had to, I would certainly like to do it in an environment such as this one. I think that Brent is ready to graduate from the turbulent times of the past three years. I think that we all are.
Graduation, pausing to note accomplishments and a time of transition, was less frequently celebrated when I was growing up, reserved for the completion of high school, and again for the completion of college. But, while there seems to be more ceremony these days, I hope that there is equal pause for reflection.
I have often said that I would return to middle school or high school for neither love nor money. In talking with others, there is a common memory of it being an awkward transition, of not feeling comfortable in your own skin which, in literal terms was morphing while you watched, not quite child yet not quite adult. Never mind about being comfortable with your place in the world. During those teenage years, the world is filled with equally awkward, morphing beings.
So, as we have recently been immersed in medical transition, punctuated by what I hope to be considered 'final exams' in the form of a broken foot for Brent and a few days later, an EMS visit to our home in the middle of the night, Brent noted that he would be going to the high school next year. I was aware of this in a rather theoretical way, having signed his class selection forms some time ago. But as the march to the end of the school year wraps up, and his days at the middle school can now be counted on one hand, this transition has become far more real.
Last week, there was an academic awards ceremony that we attended. I had never gone to this before, which I find curious. Alex has always been a good student. But early in his middle school years, both boys played travel soccer. Perhaps one (or both) of them had games on that evening and we elected not to go. In Alex's eighth grade year, we were in the midst of chemotherapy for Brent, and there is no question as to why we would have missed.
At any rate, this night marked the accomplishments of honor roll students and academic teams such as Power of the Pen, the math team, and model UN. There was a string quartet and later a flute ensemble. It was a lovely program that they put together. Additionally, there are special awards given for art, strong moral character and inspiration.
Brent received the inspiration award, for maintaining his academic standing despite being absent for nearly half of his middle school years. He received a standing ovation and I wept like a baby.
I think about the awkward changes that Brent has endured at a time when all kids just desperately want to fit in. Brent went to school most erratically, attended bald-headded for a time, on crutches for two years, for weeks with a drain pinned under his shirt, and always with the determination to stay in his advanced classes, and to do the work that was required. While his identity could not be attached to his physical form, which has morphed even more than the average teenager, he was grounded in his intellectual identity and his friendships.
I am most grateful for the environment that the schools here promote, as well as the individual families. The middle school years, which can be fraught with uncertainty and transition have not disappointed us in this regard. Ours was filled with medical uncertainty and perpetual transition. However, the one constant that we found, was the kindness and compassion of the community, particularly in the students at the middle school. The teachers and the staff there have fostered an environment of empathy, and validation, evidenced by the awards given for students who serve as models of courtesy, compassion and respect
I have seen countless other examples of this. Just yesterday, as a part of the Kick-It campaign, where individual students organize events to raise money for pediatric cancer research, a special needs student called the Chardon Polka Band to come play for the lunch periods. They generously agreed, and there were students pushing others in wheelchairs, teachers dancing with each other, with students. It was all fantastic.
While I would still not want to return to the awkward teenage years, if I had to, I would certainly like to do it in an environment such as this one. I think that Brent is ready to graduate from the turbulent times of the past three years. I think that we all are.
Sunday, May 18, 2014
Less grass, less hair, less cancer
There has been much activity in our household as spring has arrived. Spring is a season of transition, as we can finally, happily, and with all hope, safely put away snow shovels and cold weather gear, after such a brutally long and cold winter. There is what I refer to as the "march to the end of the school year" filled with band concerts, awards banquets, art shows and final exams for the older ones. We were tested throughout the winter, but we can celebrate our success in spring.
We have medically transitioned as well, ending daily travel to the hospital for treatment and getting interferon delivered to our home where we can give Brent the injections ourselves. Wow... I have just compressed countless, horribly frustrating hours spent on the phone over the past several weeks into one sentence. Sigh... But spring is a time to clean up the winter messes, and then move on, leaving those things behind.
Several weeks ago, we got started doing just that, cleaning up our yard. Dan found me in the front where I was moving some bulbs and weeding the flower beds. He urged me to come to the backyard, because there was something I really needed to see.
I walked back to discover that Alex was supervising and had been giving a tutorial to Brent...who was cutting the grass. Gratitude washed over me as I watched Brent, who was in the midst of interferon treatment, who is missing half his pelvis, who has has endured over ten surgeries in the past 2 1/2 years...who has fought hard and repeatedly for the opportunity to walk again and for the gift of being able to cut the grass. At 14, this shouldn't be considered a big deal, but let me assure you that for those of us in this house, it is. It was an amazing thing to see.
So, we are also busy with Kick-It, which raises funds for pediatric cancer research. Lauren is making earrings and selling them to raise money. Alex collected donations from businesses in the community and is doing a Chinese auction at the High School next week. Back in the fall, Brent had committed to shaving his helmet of hair this month in support of those kids in treatment, which feels like several lifetimes ago. I would point out that this was before Brent was once again, one of those kids in treatment. However, he has not wavered in this commitment.
Over dinner, after that long day of yard work, we talked with the kids about their projects. I also shared news about the daughter of my mutant friend. Lily, an adrenal cancer survivor like Lauren, was raising money for St. Baldricks and also to honor her mother. She grows a fantastic crazy mop of hair, btw. In shaving it, she raised over $4,500, far, far exceeding her goal. Brent thought this was pretty awesome.
But, Brent also wanted to DO something, to somehow earn it. After brainstorming, he decided to offer to cut the lawn of the highest donor... BECAUSE HE COULD, which, as I have mentioned, is nothing that we take for granted here.
Last weekend, Brent and Dan went with a group of friends and their fathers to tromp in the woods and play paintball, which we thought was a great way for Brent to celebrate finishing the first phase of melanoma treatment. He had a fantastic time, enjoying his new found mobility like he hasn't been able to since 2011. He was moving pretty slow on Sunday. Limp was more pronounced on Monday. Pain lingered on Tuesday. Wednesday, back at Rainbow, we found the break in his foot. He is back on crutches. Sigh...
Medically, there are not concerns about this break being cancer driven, only that he has been non-weight bearing for so long that the bones in that leg are not so strong. We will x-ray again in a month.
I asked Brent if going to paintball was worth it, knowing that he is on crutches for a bit again. His face lit up, and he had an ear to ear grin..."Absolutely! It was so much fun, mom!" I like that he has no regrets. His solution to the lawn mowing prize for Kick-It? He will cut the grass for the highest donor in July, rather than in June. It will be no less meaningful a month later. And I have no doubts that he will continue to work hard. It is just what he does.
If you were interested in supporting the RamerNation for Kick-It, we would be most honored and grateful. The grass grows high in July!
http://www.kick-it.org/games/2014/06/kick-it-with-the-bees
Several weeks ago, we got started doing just that, cleaning up our yard. Dan found me in the front where I was moving some bulbs and weeding the flower beds. He urged me to come to the backyard, because there was something I really needed to see.
I walked back to discover that Alex was supervising and had been giving a tutorial to Brent...who was cutting the grass. Gratitude washed over me as I watched Brent, who was in the midst of interferon treatment, who is missing half his pelvis, who has has endured over ten surgeries in the past 2 1/2 years...who has fought hard and repeatedly for the opportunity to walk again and for the gift of being able to cut the grass. At 14, this shouldn't be considered a big deal, but let me assure you that for those of us in this house, it is. It was an amazing thing to see.
So, we are also busy with Kick-It, which raises funds for pediatric cancer research. Lauren is making earrings and selling them to raise money. Alex collected donations from businesses in the community and is doing a Chinese auction at the High School next week. Back in the fall, Brent had committed to shaving his helmet of hair this month in support of those kids in treatment, which feels like several lifetimes ago. I would point out that this was before Brent was once again, one of those kids in treatment. However, he has not wavered in this commitment.
Over dinner, after that long day of yard work, we talked with the kids about their projects. I also shared news about the daughter of my mutant friend. Lily, an adrenal cancer survivor like Lauren, was raising money for St. Baldricks and also to honor her mother. She grows a fantastic crazy mop of hair, btw. In shaving it, she raised over $4,500, far, far exceeding her goal. Brent thought this was pretty awesome.
But, Brent also wanted to DO something, to somehow earn it. After brainstorming, he decided to offer to cut the lawn of the highest donor... BECAUSE HE COULD, which, as I have mentioned, is nothing that we take for granted here.
Last weekend, Brent and Dan went with a group of friends and their fathers to tromp in the woods and play paintball, which we thought was a great way for Brent to celebrate finishing the first phase of melanoma treatment. He had a fantastic time, enjoying his new found mobility like he hasn't been able to since 2011. He was moving pretty slow on Sunday. Limp was more pronounced on Monday. Pain lingered on Tuesday. Wednesday, back at Rainbow, we found the break in his foot. He is back on crutches. Sigh...
Medically, there are not concerns about this break being cancer driven, only that he has been non-weight bearing for so long that the bones in that leg are not so strong. We will x-ray again in a month.
I asked Brent if going to paintball was worth it, knowing that he is on crutches for a bit again. His face lit up, and he had an ear to ear grin..."Absolutely! It was so much fun, mom!" I like that he has no regrets. His solution to the lawn mowing prize for Kick-It? He will cut the grass for the highest donor in July, rather than in June. It will be no less meaningful a month later. And I have no doubts that he will continue to work hard. It is just what he does.
If you were interested in supporting the RamerNation for Kick-It, we would be most honored and grateful. The grass grows high in July!
http://www.kick-it.org/games/2014/06/kick-it-with-the-bees
Saturday, April 26, 2014
'Clouds' and Seasons
Today was a glorious day. There was plenty of sunshine and decently warm weather. It was clearly a day to get in the yard.
I have to admit that gardening, one of my former passions, has taken a hit lately. We have been in our home for nearly nine years (whoa--that doesn't seem right, but I just did the math) We have spent most of our efforts converting grass to garden, and garden to grass. We are perpetual work in progress.
We need to have some trees removed, which I have said is one of the least sexy ways of spending money, right behind new tires for the car, a new furnace, or a new roof. These are expenses that no one will ooh or ahh about. But if you fail to plunk down the cash, and it subsequently rains in your living room, well, people will notice.
There is a lot that we intend to do, with our limited time, and limited budget. Happily, this will mean that I will be required to dig in the dirt, getting back to my roots so to speak. While the gardens have been largely neglected by us for years, they have had the attention of the 100 pound puppy (who, now, nearing on the two year mark, is rapidly approaching the point of being simply considered a dog of questionable training...sigh... We have been a wee bit busy)
So, I was back in my element today, working the soil, weeding and moving some bulbs. Busy hands and a free mind.
I woke this morning, hearing the song "Clouds" by Zach Sobiech in my mind. Yesterday was the kick-off for the middle school Kick-It campaign, which lasts the month of May every year. The children raise money for pediatric cancer, devising their own fundraising events, pooling their ideas and gathering the funds as a school unit. They see the impact of their collective effort at the end of the month, last year raising $32,000. Pretty awesome if you ask me.
They showed our Flashes of Hope video to the school, which was hard for me, revisiting our struggle. Children (including Lauren) gave short speeches about how cancer has impacted their lives. And one girl got on stage to play the piano, "Clouds" by Zach Sobiech, whose story I know all too well. The entire school joined in singing, and I had to slip out of the auditorium, too overcome with emotion to remain. They sounded amazing from the bathroom, fyi.
In the garden today, I was working through my varied emotions. Zach, who lost his battle with Osteosarcoma last May, was an amazingly positive, generous and loving person by all accounts. Despite having never met him, this loss, well, it lands a little too close to home for me to be at all comfortable with it. But, I choose to be inspired, and to take the lessons that were offered in his story.
While I worked the soil this afternoon, I worked this song out of my head, one of impending separation. It was replaced with Ecclesiastes...which Lauren had read at her great-grandfather's service not that long ago. But I tend to hear it in my mind as the Byrds sang it...all Forrest Gump like:
To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, a time to reap that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.
I am cognizant that there is a time for every purpose, I just do not always know what season it is and that is not just because of the crazy weather here in northeast Ohio. It would seem however, that this is the season for planting. A time to heal. A time to laugh. A time to build. A time to speak.
And always, a time to love.
I have to admit that gardening, one of my former passions, has taken a hit lately. We have been in our home for nearly nine years (whoa--that doesn't seem right, but I just did the math) We have spent most of our efforts converting grass to garden, and garden to grass. We are perpetual work in progress.
We need to have some trees removed, which I have said is one of the least sexy ways of spending money, right behind new tires for the car, a new furnace, or a new roof. These are expenses that no one will ooh or ahh about. But if you fail to plunk down the cash, and it subsequently rains in your living room, well, people will notice.
There is a lot that we intend to do, with our limited time, and limited budget. Happily, this will mean that I will be required to dig in the dirt, getting back to my roots so to speak. While the gardens have been largely neglected by us for years, they have had the attention of the 100 pound puppy (who, now, nearing on the two year mark, is rapidly approaching the point of being simply considered a dog of questionable training...sigh... We have been a wee bit busy)
So, I was back in my element today, working the soil, weeding and moving some bulbs. Busy hands and a free mind.
I woke this morning, hearing the song "Clouds" by Zach Sobiech in my mind. Yesterday was the kick-off for the middle school Kick-It campaign, which lasts the month of May every year. The children raise money for pediatric cancer, devising their own fundraising events, pooling their ideas and gathering the funds as a school unit. They see the impact of their collective effort at the end of the month, last year raising $32,000. Pretty awesome if you ask me.
They showed our Flashes of Hope video to the school, which was hard for me, revisiting our struggle. Children (including Lauren) gave short speeches about how cancer has impacted their lives. And one girl got on stage to play the piano, "Clouds" by Zach Sobiech, whose story I know all too well. The entire school joined in singing, and I had to slip out of the auditorium, too overcome with emotion to remain. They sounded amazing from the bathroom, fyi.
In the garden today, I was working through my varied emotions. Zach, who lost his battle with Osteosarcoma last May, was an amazingly positive, generous and loving person by all accounts. Despite having never met him, this loss, well, it lands a little too close to home for me to be at all comfortable with it. But, I choose to be inspired, and to take the lessons that were offered in his story.
While I worked the soil this afternoon, I worked this song out of my head, one of impending separation. It was replaced with Ecclesiastes...which Lauren had read at her great-grandfather's service not that long ago. But I tend to hear it in my mind as the Byrds sang it...all Forrest Gump like:
To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, a time to reap that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.
I am cognizant that there is a time for every purpose, I just do not always know what season it is and that is not just because of the crazy weather here in northeast Ohio. It would seem however, that this is the season for planting. A time to heal. A time to laugh. A time to build. A time to speak.
And always, a time to love.
Wednesday, April 9, 2014
Perception matters
Brent began treatment Monday. I said 'treatment,' rather than 'chemo.' I have thought about this quite a bit, and it really shouldn't matter what I call it.
But it does.
Brent, as we were heading down to the hospital corrected me about Interferon. "It isn't chemo, Mom."
Chemo, in his world, means poison...and neutropenia, and hair loss and weeklong stints in the hospital, nosebleeds and vomiting. With Interferon, we are making daily trips to the outpatient clinic after he finishes his classes at school for infusions of something that is a bit different. And to Brent, this distinction matters. Kind of a lot.
I wasn't in a great position to argue with him, as I explained, because I hadn't done much in the way of research on this. Brent found this positively shocking, because I am always reading up on the latest research that comes my way.
I explained that my research on interferon was limited to listening to the opinion of all of the doctors that we had contacted and consulted. They were all in agreement about this course of treatment for him. I had learned about other treatments of course, but these were for more advanced disease than he has. These other therapies are not appropriate for Brent, sort of the equivalent of dropping a bomb on a city that has a couple of criminals in it. We would learn more about Interferon when we went in.
So, when we arrived, I asked Dr. Stearns to clarify for us. "Is Interferon considered chemotherapy or immunotherapy?"
He smiled with a twinkle in his eye, and responded "Yes." Because it is a bit of both, killing melanoma cells as well as causing an immune response to be mounted against them. Well, then.
I always aspire for clarity. But for Brent, calling this chemo is problematic. We settled on Chemo-Lite, given that it will be much easier than the very harsh treatment that he received for osteosarcoma. If calling Interferon 'treatment' rather than chemo makes this more palatable to Brent, well, 'treatment' it is.
While the semantics do not change the truth of what we are doing, it does change his perception of it. His focus is on the ways that this is far easier than what he has already done, rather than on the ways that this is hard. I do not want to in any way minimize what he is doing, but I can certainly embrace his philosophical position. This is doable. This is manageable.
Most importantly, this is what Brent must do to get better, the microscopic cancer mop up. Call it whatever you like.
And I have always said “Whatever gets you through.”
Monday, March 24, 2014
It is a great time to be a mutant (if you have to be a mutant)
I was driving Brent in to the hospital on Thursday afternoon. It was the last day of school before Spring Break and Brent was going to get his drain out, which was most welcomed. After telling me all about his day, Brent asked about mine.
"What did you do today, mom?"
Well, among other things, I had watched a webinar about metastatic melanoma. There is a researcher out of MSKCC that has grabbed my attention in the round about way that my life works. When a webinar featuring Dr. Jedd Wolchok was posted on my news feed, I registered.
I suspect that stay-at-home moms were not the target audience, given how science-y it all was, but I found this thing to be absolutely riveting. There are promising things in immunotherapy, specifically with regard to melanoma, but these ideas can be applied to other forms of cancer as well. I am very encouraged.
In sharing some of the things that I learned with Brent, I spoke to him about how much has changed, even since I first learned about Li-Fraumeni Syndrome, just ten years ago when Lauren was diagnosed with adrenal cancer.
Ten years ago, they were just starting to test families who they suspected had Li-Fraumeni, for a p53 mutation, in order to identify which family members were effected. Prior to that, parents could only wonder and worry that they had passed this cancer predisposition to their children. I would still be worrying about Alex and Olivia, had the genetic testing not proven them to be genetically sound at P53. They have the same cancer defense as everyone else. This scientific advancement has directly benefitted our family, eliminating half of our worry.
But even five years ago, if you did the testing, there was nothing to be done with the information for people with a positive result for the mutation. Brent was diagnosed with osteosarcoma in the fall of 2011, right after the Toronto screening protocol was picked up. By using this screening guide, we began the proactive hunt for cancer, finding Lauren's brain tumor early, before it caused her bigger problems.
This same protocol picked up Brent's current cancer, melanoma, long before we would have suspected that he had a problem. While I am not happy about the fact that we are on our fourth pediatric cancer, or the fact that Brent has a year long treatment, I must to concede that the screening protocol is in fact working. We are picking these cancers up in the earlier and more treatable stages.
I shared with Brent about a study that they are doing at the National Institute of Health, which is trying to determine if using an existing drug, used off label, will help prevent cancers from developing in the first place. I am going to meet with the researcher next week to talk about this.
The research keeps moving. At first they simply identified families with likely genetic predisposition. Then they identified the gene that was mutated in all affected family members. They are now trying to get ahead of the cancer, by screening for it. The current research seeks to prevent cancer from happening to begin with.
Brent asked if this progression was like the diseases that were deadly 80 years ago, but we have vaccinations for now. If you were to get diphtheria back then, you might die. But now, people do not get often get diphtheria, because of vaccines. And if you do get it, it is much more treatable with antibiotics. I am hopeful about this notion, and hopeful that we are on the very edge of similar advances in cancer.
I told Brent that when he was first diagnosed with osteosarcoma, I was overwhelmed and afraid.
"I was afraid too, mom." This is the first time he has said such a thing to me. "But it is a great time to be a mutant... if you have to be a mutant."
I like his optimism, especially at times when mine falters. We move forward...always forward.
"What did you do today, mom?"
Well, among other things, I had watched a webinar about metastatic melanoma. There is a researcher out of MSKCC that has grabbed my attention in the round about way that my life works. When a webinar featuring Dr. Jedd Wolchok was posted on my news feed, I registered.
I suspect that stay-at-home moms were not the target audience, given how science-y it all was, but I found this thing to be absolutely riveting. There are promising things in immunotherapy, specifically with regard to melanoma, but these ideas can be applied to other forms of cancer as well. I am very encouraged.
In sharing some of the things that I learned with Brent, I spoke to him about how much has changed, even since I first learned about Li-Fraumeni Syndrome, just ten years ago when Lauren was diagnosed with adrenal cancer.
Ten years ago, they were just starting to test families who they suspected had Li-Fraumeni, for a p53 mutation, in order to identify which family members were effected. Prior to that, parents could only wonder and worry that they had passed this cancer predisposition to their children. I would still be worrying about Alex and Olivia, had the genetic testing not proven them to be genetically sound at P53. They have the same cancer defense as everyone else. This scientific advancement has directly benefitted our family, eliminating half of our worry.
But even five years ago, if you did the testing, there was nothing to be done with the information for people with a positive result for the mutation. Brent was diagnosed with osteosarcoma in the fall of 2011, right after the Toronto screening protocol was picked up. By using this screening guide, we began the proactive hunt for cancer, finding Lauren's brain tumor early, before it caused her bigger problems.
This same protocol picked up Brent's current cancer, melanoma, long before we would have suspected that he had a problem. While I am not happy about the fact that we are on our fourth pediatric cancer, or the fact that Brent has a year long treatment, I must to concede that the screening protocol is in fact working. We are picking these cancers up in the earlier and more treatable stages.
I shared with Brent about a study that they are doing at the National Institute of Health, which is trying to determine if using an existing drug, used off label, will help prevent cancers from developing in the first place. I am going to meet with the researcher next week to talk about this.
The research keeps moving. At first they simply identified families with likely genetic predisposition. Then they identified the gene that was mutated in all affected family members. They are now trying to get ahead of the cancer, by screening for it. The current research seeks to prevent cancer from happening to begin with.
Brent asked if this progression was like the diseases that were deadly 80 years ago, but we have vaccinations for now. If you were to get diphtheria back then, you might die. But now, people do not get often get diphtheria, because of vaccines. And if you do get it, it is much more treatable with antibiotics. I am hopeful about this notion, and hopeful that we are on the very edge of similar advances in cancer.
I told Brent that when he was first diagnosed with osteosarcoma, I was overwhelmed and afraid.
"I was afraid too, mom." This is the first time he has said such a thing to me. "But it is a great time to be a mutant... if you have to be a mutant."
I like his optimism, especially at times when mine falters. We move forward...always forward.
Saturday, March 8, 2014
Opera to polka
I am sitting here listening to Olivia singing to Dan, the pair of them making up songs. What Dan lacks in musical ability, he makes up for with enthusiasm and humor. Today, I am living in the midst of a comedic opera or Broadway musical, written by two children. Dan may be 46 1/2 (as the current song lyrics proclaim) but he certainly has a young heart. They both just make me laugh.
We are singing in our house this morning, because the pathology on Brent's lymph nodes came back clean yesterday. He will do a year of chemo, but we do not have to figure out a solution for the radiation recommendation that further node involvement would have brought. So, we celebrate, joyfully.
It has been a long, and rough couple of weeks.
Last weekend, the day after Brent was discharged, we helped celebrate the life of Dan's grandfather, who had died. I was anxious when we last visited him in hospice. I worried about how the kids would deal with this loss. The added layer of uncertainty with Brent's most recent diagnosis made this even more complicated. In my own mind, at least.
The short of it is this: Alex and Lauren got up to read at the service. Brent, despite having a four hour surgery on Friday, participated with Olivia and his cousin Evan, bringing up the gifts in church. There was sunshine the day we buried him, even if it was bitterly cold. I have thought a lot about 'Pa.' naturally.
One of the many things that really spoke to me about his life was this: When he was born in 1923, he weighed only two pounds and 11 ounces. They put him in a shoebox and told his mother to take him home and enjoy him as long as she could, which was not supposed to be long. They kept hot water bottles with him, and he went on to live... to marry, to see his children and grandchildren marry. He even saw some of his great-grandchildren enter high school.
I would love to see the Vegas odds on a baby, born at less than 3 pounds, living to the age of 90, even with today's technology. I wish I could have placed a small wager on 'Pa.'
And while Pa's mother certainly must have worried in the cold of that November, and surely she had moments of despair, she eventually saw him grow up, marry, laugh, and famously play the accordion. This is a favorite polka, from a man who took enormous delight in the company of others:
In Heaven there is no beer
That's why we drink it here (Right Here!)
When we're gone from here,
all our friends will be drinking all our beer!
I smile, remembering my children's proud Croatian great-grandfather. I think about his mother, who I never knew, and appreciate that without her struggle, I would be absent my most treasured blessings in the form of my husband and children. We never know how far the ripples of our actions travel.
I am very grateful for the struggles of a woman that I never met.
And tonight, I will toast her son's memory with a polka and a beer.
We are singing in our house this morning, because the pathology on Brent's lymph nodes came back clean yesterday. He will do a year of chemo, but we do not have to figure out a solution for the radiation recommendation that further node involvement would have brought. So, we celebrate, joyfully.
It has been a long, and rough couple of weeks.
Last weekend, the day after Brent was discharged, we helped celebrate the life of Dan's grandfather, who had died. I was anxious when we last visited him in hospice. I worried about how the kids would deal with this loss. The added layer of uncertainty with Brent's most recent diagnosis made this even more complicated. In my own mind, at least.
The short of it is this: Alex and Lauren got up to read at the service. Brent, despite having a four hour surgery on Friday, participated with Olivia and his cousin Evan, bringing up the gifts in church. There was sunshine the day we buried him, even if it was bitterly cold. I have thought a lot about 'Pa.' naturally.
One of the many things that really spoke to me about his life was this: When he was born in 1923, he weighed only two pounds and 11 ounces. They put him in a shoebox and told his mother to take him home and enjoy him as long as she could, which was not supposed to be long. They kept hot water bottles with him, and he went on to live... to marry, to see his children and grandchildren marry. He even saw some of his great-grandchildren enter high school.
I would love to see the Vegas odds on a baby, born at less than 3 pounds, living to the age of 90, even with today's technology. I wish I could have placed a small wager on 'Pa.'
And while Pa's mother certainly must have worried in the cold of that November, and surely she had moments of despair, she eventually saw him grow up, marry, laugh, and famously play the accordion. This is a favorite polka, from a man who took enormous delight in the company of others:
In Heaven there is no beer
That's why we drink it here (Right Here!)
When we're gone from here,
all our friends will be drinking all our beer!
I smile, remembering my children's proud Croatian great-grandfather. I think about his mother, who I never knew, and appreciate that without her struggle, I would be absent my most treasured blessings in the form of my husband and children. We never know how far the ripples of our actions travel.
I am very grateful for the struggles of a woman that I never met.
And tonight, I will toast her son's memory with a polka and a beer.
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