With a bit of time on my hands, while Brent naps, I thought that I would write something. I found several empty, untitled drafts from the past two months. I vaguely remember sitting down, but not knowing how exactly to describe what our family was doing.
In November, we successfully grafted skin from Alex and covered the large wound on Brent's back, something that has never been done before. Alex took time from his studies at the University of Michigan to do what he was uniquely able to for his brother. I am proud of his generosity to Brent and of the man that Alex is becoming.
While the graft has been a raging success, Brent has since developed painful lymphedema, GVHD and open wounds on his legs that have required a great deal of attention and care. It was isolating, exhausting and discouraging for all of us, in ways that are difficult to put into words. Seeing your child in pain, unable to alleviate it, is incredibly difficult. Causing the pain, even as we were caring for these wounds, was even harder.
Whenever I despaired, which was often, I would mentally point with gratitude to the things that were working: the absence of cancer and the success of the skin graft. I struggled this fall, trying to balance gratitude and grief. I was paralyzed emotionally, and physically weary from tending to Brent's medical requirements, discouraged without seeing progress or an end to his suffering.
I thought that I would shake things up in the new year by committing to a 100 mile bike ride that will take place in June. The event raises funds to support immunotherapy research via Cancer Research Institute. I registered for the race and began to train, believing that this would be good for me--mind, body and soul-- as well as benefit cancer patients like my children.
Brent's idea of shaking it up in 2017 was developing septic pneumonia, and enduring a five day stint in the PICU.
I write today from his hospital room, beginning our third week here. My sincere hope is that we have checked the box for 'life threatening episode,' for 2017, a habit that is alarming on its own, but especially in the way that it has become routine for us.
Brent is improving slowly and we hope to return home sometime this week.
We welcome your prayers for the RamerNation, and if you were inclined, your support for Cancer Research Institute.
Showing posts with label Alex. Show all posts
Showing posts with label Alex. Show all posts
Tuesday, January 24, 2017
Wednesday, September 7, 2016
Pediatric cancer, LFS style
September is pediatric cancer awareness month, something that we have quite a bit of experience with, thanks to LFS.
With many inherited cancer predisposition syndromes, like BRCA, there is an ethical debate about testing children, who are unlikely to develop cancer until later in life. With Li-Fraumeni Syndrome (LFS), half of all cancers occur in childhood, so there is a real benefit to testing and screening minors. While the emotional burden is heavy, screening can save a child's life. The Ramers have personal experience with this, having discovered four of the six cancers in my children, not due to concerning symptoms, but because we were armed with the knowledge found in genetic testing. We were looking for cancer, before it found and overwhelmed us.
Through routine screening, physicians discovered two brain tumors, metastatic melanoma and acute myeloid leukemia in my children over the past five years, prior to any symptoms developing. Early detection offered the advantage of less complicated brain surgeries for Lauren. Consequently, my daughter's cancer diagnosis has not slowed her down. Lauren is an honor student in high school, in the marching band and she is currently running cross country. I am so grateful for these blessings.
My son Brent has had a tougher run with his three cancers. He has endured well over 30 surgeries, months and months spent in hospital, chemo, radiation, bone marrow transplant, immunotherapy, and epigenetic therapy. He has worked incredibly hard with his doctors, finally achieving a well deserved remission. I am proud to say that he is applying for National Honor Society and has returned to school for the first time in a year and a half. However, had either the melanoma or the AML progressed further, prior to his diagnosis, he might not have had the same treatment options.
Today, we are so grateful and yes, even hopeful.
This brings hope that our future will be brighter than some very dark days that we have experienced. Lauren and Brent have had cancer simultaneously, on two different occasions. In 2011, Lauren had a brain tumor as Brent battled osteosarcoma. Again in 2015, Lauren headed back to neurosurgery while Brent did chemotherapy for leukemia, preparing for bone marrow transplant with his brother Alex as his donor. Twice within a month, the Ramers had two rooms on the pediatric oncology floor, which sounds completely ridiculous.
This is pediatric cancer LFS style in its current state. But I know that working together, it will get better. I am really looking forward to helping with that work.
With many inherited cancer predisposition syndromes, like BRCA, there is an ethical debate about testing children, who are unlikely to develop cancer until later in life. With Li-Fraumeni Syndrome (LFS), half of all cancers occur in childhood, so there is a real benefit to testing and screening minors. While the emotional burden is heavy, screening can save a child's life. The Ramers have personal experience with this, having discovered four of the six cancers in my children, not due to concerning symptoms, but because we were armed with the knowledge found in genetic testing. We were looking for cancer, before it found and overwhelmed us.
Through routine screening, physicians discovered two brain tumors, metastatic melanoma and acute myeloid leukemia in my children over the past five years, prior to any symptoms developing. Early detection offered the advantage of less complicated brain surgeries for Lauren. Consequently, my daughter's cancer diagnosis has not slowed her down. Lauren is an honor student in high school, in the marching band and she is currently running cross country. I am so grateful for these blessings.
My son Brent has had a tougher run with his three cancers. He has endured well over 30 surgeries, months and months spent in hospital, chemo, radiation, bone marrow transplant, immunotherapy, and epigenetic therapy. He has worked incredibly hard with his doctors, finally achieving a well deserved remission. I am proud to say that he is applying for National Honor Society and has returned to school for the first time in a year and a half. However, had either the melanoma or the AML progressed further, prior to his diagnosis, he might not have had the same treatment options.
Today, we are so grateful and yes, even hopeful.
- The Toronto Protocol, the guide that helped our doctors find these cancer early, was published just months before our diagnosis. It has made a difference in outcome for us, and it showed up just in time.
- We are incredibly fortunate in our team at Rainbow Babies and Children's Hospital. I could never properly express how we have been touched by people there who care for our family, and in a way have become part of our family. I am so grateful that they are willing to think outside of the box.
- We recognize the diligent effort of cancer researchers worldwide who doggedly work to make this condition even more manageable. All advances in oncology benefit the LFS community because we are at higher risk for all forms of cancer.
- I am encouraged by the recommendations of the Cancer Moonshot Blue Ribbon panel which were revealed today. Among other things, they urge that the research on the drivers of pediatric cancer be intensified and provide strong support for immunotherapy research, which is not DNA toxic. Brent got his latest cancer, a therapy induced AML, from the DNA-toxic chemotherapy he received to treat osteosarcoma. I stewed (kind of bitterly) in that fact for quite some time. We can do better, and will.
This brings hope that our future will be brighter than some very dark days that we have experienced. Lauren and Brent have had cancer simultaneously, on two different occasions. In 2011, Lauren had a brain tumor as Brent battled osteosarcoma. Again in 2015, Lauren headed back to neurosurgery while Brent did chemotherapy for leukemia, preparing for bone marrow transplant with his brother Alex as his donor. Twice within a month, the Ramers had two rooms on the pediatric oncology floor, which sounds completely ridiculous.
This is pediatric cancer LFS style in its current state. But I know that working together, it will get better. I am really looking forward to helping with that work.
Saturday, July 30, 2016
Today is not that day.
A few weeks ago, I contemplated some time of my own, relishing in the luxury of how I might spend it. I have a friend who frequently mentions that this sort of activity might anger the cancer gods. I don't believe that life works this way, although I might have to give greater consideration to this notion. You can decide for yourself.
We are not, most gratefully, busy with cancer at the moment, but rather, cancer's aftermath.
I worry that I might be developing a credibility problem. If you google Li-Fraumeni, our rare inherited cancer predisposition syndrome, you will find an explanation for the six uncommon cancers in my children. If you search "necrotizing fasciitis," you might conclude that we are branching out from cancer, but in a no less devastating or dangerous way. If you do not know our family, you might not believe me at all.
Brent has spent the past two weeks in the hospital with a stunningly aggressive infection: a flesh eating bacteria. Four of these days were spent in the pediatric intensive care unit, three sedated and on a vent as they managed his septic shock. Shock, would be the most appropriate word in that sentence. He had six surgical interventions to remove necrotic tissue on his back and he faces several more in the coming months of healing.
It is surreal, even typing these words out.
Whenever we have faced daunting odds with a cancer diagnosis, invariably someone will helpfully point out that death by cancer is not assured. We might just as easily get hit by a bus. For the record, I have never found this to be terribly comforting. If you find that you must support someone with cancer in this vein, I would add "or flesh eating bacteria" to the bus comment.
The most helpful bit of encouragement that I ever received, came nearly five years ago from my sister. As I despaired about our genetics, and the osteogenic tumor that encompassed Brent's entire right pelvis, my fear overwhelmed me. Laurie was everything that I needed in that moment, acknowledging my fear as justified. "It is possible that all of the things that you fear may happen. It is possible that your children may die. But today is not that day."
I cannot say how many times I found the strength to tamp down my fears as worrisome things happened with these words "Maybe... But today is not that day." I found a way to live, and to laugh, and to love.
However, in the interested of balance, I should also mention that I cannot count how many times in the past five years that I prayed "Dear God, please help me, because today very well could be that day." Thursday, July 14th can be added to this tally.
As they wheeled Brent out of the PICU to the OR, I despaired in a room littered with medical debris from hours of efforts. Dan turned to me and firmly said, "This is only another chapter in the book." My husband is a rock, full of faith, in my moments of doubt.
As Brent's health progressed last week, our family resorted to humor. We told Brent of the things that transpired while he was so very ill and sedated. Upon learning that he had flesh eating disease, Brent quipped that this was nearly as cool as Lauren's proposed scorpion venom trial, something worthy of a zombie apocalypse. Alex had offered his own skin if a matched graft for Brent would be a better option. (I am so proud of him for offering his brother a pound of flesh, in addition to bone marrow) There was much joking about how hairy Brent's back would be with Alex's skin attached. I am a firm believer in whatever gets you through. We are going to laugh as much as we can, and fairly inappropriately, or so it would seem.
We are blessedly home, but many medical issues remain. Equally challenging, I am left wondering how to thank the legions of people at Rainbow Babies and Children's Hospital who have cared for us. I have felt this way before, once with Brent's orthopedic surgeon at Sloan Kettering. I struggled to find words that were adequate in expressing our gratitude for his help, saving both Brent's leg and his life. Dr. Healey, full of grace, simply asked that we go and lead a full and happy life, using our talents to make the world a better place.
Well, then.
Despite my ardent wish, The RamerNation has yet to find a bit of 'boring,' the term we use for medical quiet. But beauty is evident in all of the unexpected places that we find ourselves. Our experience has been extraordinary by every medical measure, and by virtue of the folks who have crossed our path.
I am so grateful for every day of our life together, trials included.
Friday, November 27, 2015
Not traditional, but thankful
I woke up this morning, on Thanksgiving, under a beautiful quilt made by a woman I have never met. She is from Manhattan, a friend of a friend, who ironically lives only blocks from Memorial Sloan-Kettering, a hospital that I spent many months in. Today, I find myself living in a different hospital, listening to helicopters as they land on the roof. These flights remind me that someone is having a much worse day than me.
My son has relapsed with AML. I have been medically focused for the past several months as we work to get Brent's leukemia under control. We have tried a targeted therapy, an epigenetic therapy, radiation and just this week, a stem cell transplant with extra T-cell lymphocytes. I am grateful for my time here with Brent, despite the geography. I am thankful that my son Alex was able to donate cells again.
Our family has been under tremendous strain, as we are physically divided. We have been separated before, and I try to focus on how our current distance is not nearly the challenge that it has been in the past. We are near to our family and friends, able to swap parents and more easily arrange sibling visits. We are not 500 miles apart. While love knows no boundaries, embracing your children on occasion helps to reinforce this idea.
My thoughts are scattered and my mind only travels a few days in advance. We must wait to see if Alex's stem cells engraft in the next two weeks. In the meantime, I am told that every day without a 'catastrophic event' like infection, is a good day. I try to make these days truly good whenever Brent is feeling up to it. He is incredibly strong and equally kind.
Brent's doctors are thinking creatively about how to best help him. They are searching for answers and caring for our family. We balance family and medicine. We take each step, full of prayer and full of gratitude, knowing that our team is working very hard. There is no clear path, and there are no obvious answers, but they travel the wilderness with us nonetheless. They sacrifice time with their families on Thanksgiving, to help mine.
This holiday is a time to pause and count our blessings. The Ramers celebrated Thanksgiving last week in order to be together as a family, and not delay this treatment. While we marked the day early, the spirit of gratitude is fairly constant. Our blessings, I believe, outweigh our challenges. This is really saying something about our blessings, because our challenges are many.
My son has relapsed with AML. I have been medically focused for the past several months as we work to get Brent's leukemia under control. We have tried a targeted therapy, an epigenetic therapy, radiation and just this week, a stem cell transplant with extra T-cell lymphocytes. I am grateful for my time here with Brent, despite the geography. I am thankful that my son Alex was able to donate cells again.
Our family has been under tremendous strain, as we are physically divided. We have been separated before, and I try to focus on how our current distance is not nearly the challenge that it has been in the past. We are near to our family and friends, able to swap parents and more easily arrange sibling visits. We are not 500 miles apart. While love knows no boundaries, embracing your children on occasion helps to reinforce this idea.
My thoughts are scattered and my mind only travels a few days in advance. We must wait to see if Alex's stem cells engraft in the next two weeks. In the meantime, I am told that every day without a 'catastrophic event' like infection, is a good day. I try to make these days truly good whenever Brent is feeling up to it. He is incredibly strong and equally kind.
Brent's doctors are thinking creatively about how to best help him. They are searching for answers and caring for our family. We balance family and medicine. We take each step, full of prayer and full of gratitude, knowing that our team is working very hard. There is no clear path, and there are no obvious answers, but they travel the wilderness with us nonetheless. They sacrifice time with their families on Thanksgiving, to help mine.
This holiday is a time to pause and count our blessings. The Ramers celebrated Thanksgiving last week in order to be together as a family, and not delay this treatment. While we marked the day early, the spirit of gratitude is fairly constant. Our blessings, I believe, outweigh our challenges. This is really saying something about our blessings, because our challenges are many.
Saturday, June 20, 2015
The colors of cancer
ROY G BIV Doxorubicin, the red devil. Methotrexate yellow. Mitoxantrone blue. Colors and nicknames. These days, the chemotherapy colors are more familiar hues to us than the ones found in a Crayola box. We will also get to see Propofol this week, which is white and opaque. But this isn't a chemotherapy agent. It is a sedation drug, which is kind of fitting, when you think about it, a liquid like White Out, a primer that blots out everything.
I wake up not sure where am, or why I am there, even on the rare occasions that I find myself in my own bed. Our situation changes so frequently. In my sleeping hours, I wonder if I escape to an empty landscape. I do not remember my dreams anymore.
Perhaps my lack of dreaming comes from my late night reading. I looked over the consent forms for an investigational drug last night and considered the odds. The problems that we currently have are certain. The potential problems that we are signing on for are substantial. We have arrived at a place where there is no standard of care. There are no obvious answers. Dan and I are required to make difficult choices for both of our children, all of which carry significant consequences.
We have been doing this for years, but it somehow doesn't get any easier with practice.
I am writing, but not writing well or easily. This leads me to believe that maybe I am dealing, but not dealing particularly well. Perhaps though, it is just because we are so bloody busy. And I am so tired.
Interrupted just now by rounds, I learned that the beat down has begun. The anticipated dip in blood counts has commenced for my son. These counts will continue to drop until we are required to transfuse, repeatedly. Brent will be wide open for infection. Knowing this, we will continue the Cookie Monster blue medicine for another two days. And then we will add another drug, which will drive down his marrow even further.
Brent is currently doing very, very well, I remind myself. This is a big breadcrumb.
Pick your poison. Brent joked that we literally did this ten days ago, when we met with a group of doctors and learned that his leukemia had infiltrated the lymph nodes. The disease has to be controlled before he can go to transplant, using the perfectly matched marrow that his brother Alex offers. The menu had been filled with all sorts of unappetizing things. Brent helped select his own poison, at fifteen.
Lauren will have surgery this week to deal with a grey area in her grey matter. Dan and I had to decide with her, as a twelve year old, about how to manage the tumor that is slowly growing in her brain. I looked over the series of black and white MRI images with her doctor and saw the changes.
There were no clear answers offered from the medical folk, and the nuanced opinions all required that we take the lead. The Ramers decided to deal aggressively with this, having experience that suggests that nothing improves with the wait. We will wait only until Thursday, when we will have two rooms on the pediatric oncology floor.
It will be a busy week in cancerland. I would love to vacation somewhere else, but the Ramers are together, at least.
My nephew just came to visit, a ray of sunshine on this drab day. He is a reminder of the outside world. Another breadcrumb. Eric shared the wonderful things that he is learning. His visit reminds me that this day is one to celebrate, because it is filled with love, with wonder, with joy.
Despite our burden, or perhaps because of it, all of our days are worth celebrating, because all of our days are clearly filled with love. I really need to focus on this part, and put the technicolor cancer options behind me now. Decisions made, I must leave it in God's hands as we move forward.
We are always looking ahead.
We always welcome your prayers.
I wake up not sure where am, or why I am there, even on the rare occasions that I find myself in my own bed. Our situation changes so frequently. In my sleeping hours, I wonder if I escape to an empty landscape. I do not remember my dreams anymore.
Perhaps my lack of dreaming comes from my late night reading. I looked over the consent forms for an investigational drug last night and considered the odds. The problems that we currently have are certain. The potential problems that we are signing on for are substantial. We have arrived at a place where there is no standard of care. There are no obvious answers. Dan and I are required to make difficult choices for both of our children, all of which carry significant consequences.
We have been doing this for years, but it somehow doesn't get any easier with practice.
I am writing, but not writing well or easily. This leads me to believe that maybe I am dealing, but not dealing particularly well. Perhaps though, it is just because we are so bloody busy. And I am so tired.
Interrupted just now by rounds, I learned that the beat down has begun. The anticipated dip in blood counts has commenced for my son. These counts will continue to drop until we are required to transfuse, repeatedly. Brent will be wide open for infection. Knowing this, we will continue the Cookie Monster blue medicine for another two days. And then we will add another drug, which will drive down his marrow even further.
Brent is currently doing very, very well, I remind myself. This is a big breadcrumb.
Pick your poison. Brent joked that we literally did this ten days ago, when we met with a group of doctors and learned that his leukemia had infiltrated the lymph nodes. The disease has to be controlled before he can go to transplant, using the perfectly matched marrow that his brother Alex offers. The menu had been filled with all sorts of unappetizing things. Brent helped select his own poison, at fifteen.
Lauren will have surgery this week to deal with a grey area in her grey matter. Dan and I had to decide with her, as a twelve year old, about how to manage the tumor that is slowly growing in her brain. I looked over the series of black and white MRI images with her doctor and saw the changes.
There were no clear answers offered from the medical folk, and the nuanced opinions all required that we take the lead. The Ramers decided to deal aggressively with this, having experience that suggests that nothing improves with the wait. We will wait only until Thursday, when we will have two rooms on the pediatric oncology floor.
It will be a busy week in cancerland. I would love to vacation somewhere else, but the Ramers are together, at least.
My nephew just came to visit, a ray of sunshine on this drab day. He is a reminder of the outside world. Another breadcrumb. Eric shared the wonderful things that he is learning. His visit reminds me that this day is one to celebrate, because it is filled with love, with wonder, with joy.
Despite our burden, or perhaps because of it, all of our days are worth celebrating, because all of our days are clearly filled with love. I really need to focus on this part, and put the technicolor cancer options behind me now. Decisions made, I must leave it in God's hands as we move forward.
We are always looking ahead.
We always welcome your prayers.
Sunday, March 29, 2015
I have another son
We all live with cancer in this house.
Alex, my 17 year old, has been raised in a home where cancer visits with alarming frequency. He has witnessed many things that most adults cannot even imagine. I don't often write about him, and have tried to offer him space to be a normal teenager, independent of this oncology nonsense. I am certain that I have failed, but I am pretty sure that he knows that I have tried.
Alex is extraordinarily independent, partially by necessity as Dan and I have been off 'cancering' with the other kids. But in part, this autonomy is achieved by design, because our job is to make our children self sufficient. Alex is driven, choosing an academic course load filled with AP classes, joining clubs, marching band, and varsity athletics. Sometimes I feel like we need to tether him to us, he is so ready to fly.
As he finishes his junior year, Alex is preparing for college, although we have yet to visit any. Demonstrating initiative and leadership, he began plans for a service project some time ago. He is organizing a t-shirt sale at his high school, raising funds for Kick-It, which supports pediatric cancer research. His idea is an extension of a program begun at the middle school. Alex wanted to build on this heritage of community and service. And lets face it, pediatric cancer research is not beneficial in any sort of theoretical way for us. We regularly engage with researchers as a practical matter at the RamerNation.
Things were going along swimmingly for Alex, until Brent was diagnosed with his third cancer in the midst of this project. I had hoped to offer Alex some help and guidance, but found that I was preoccupied with doctors, tests, and organizing what I could, in advance of the chaos to come.
Alex moved forward with his sale with guidance from Dan, as well as some teachers from school. The Ramers also moved forward, testing for a match and waiting for results, which is excruciating, when so much hangs in the balance.
On Wednesday, Alex was blessedly, most thankfully, found to be a perfect match for Brent. In this case, blood is thicker than water, because a full sibling is the best accepted donor.
Alex has just become an active participant, rather than an intimate spectator. He will undergo more testing. He will be poked and prodded as his siblings have been. He will spend time at the hospital. He will spend time in the OR.
As part of the Kick It program, the focus this year is on sibling impact. Lauren will speak to her peers at the middle school about what it is like to witness her brother's struggle. She will also share how this has impacted Olivia and Alex. In the very moment that she gives her speech, Brent will be in the midst of the chemotherapy regimen that will kill off his own marrow, making space for Alex's stem cells, which we pray will be accepted and grow. She will no doubt be thinking of this process, of the importance of family.
Alex is following through on his t-shirt sale, taking orders this week, profits to benefit pediatric cancer research, hopefully finding treatments that are less toxic and less likely to cause subsequent cancers like this latest one for Brent. I am enormously proud of the person that he is becoming.
His service project at the high school will finish, just as he heads to the OR, beginning a service project of a different kind. We welcome your prayers.
Donations to Kick-It via Team RamerNation may be made here:
Alex participated with other siblings of cancer patients in a video for Flashes of Hope last year:
Saturday, November 8, 2014
Reviewing life, inspired by a bowl of mashed potatoes
Looking back can be really hard sometimes.
I have a dear mutant friend whose son has just been diagnosed with osteosarcoma. I have been trying to provide support, encouragement and tips for what could lay ahead for them. This requires that I recall our journey of three years ago in detail, revisiting the challenges, and remembering the fear.
I am so grateful to be on this side of the nightmare. I shake myself, shedding the worries that cling to those events. I have to remind myself that our reality is different now. Those trials are currently behind us. May they always remain so.
Looking back can also be lovely
Last night at dinner, Brent thoroughly delighted in a side dish of mashed potatoes. I was transported back to a time before our challenges, when the kids memorized poetry with me, and learned interesting things that had far less of a practical application than they currently do.
We pulled out the poetry books from the bookshelf in the kitchen, and read through some of our favorites, right there at the dining room table. In our home, we have always been drawn to two types of poems: those filled with beauty, and those bursting with humor.
This exercise was rather like recalling a dream for me, not in the moments upon waking, when the details are fresh and crisp, but after lunchtime with the fuzzy bits coming to your mind all out of order. Last night I longed for the warmth and quiet of my bed, to somehow return to that now foreign story, filled with poems, innocence and promise.
But seldom can you revisit those sorts of dreams.
Looking forward can be exciting.
My life has taken a big turn, obviously, from what I had ever imagined for myself. I am working with some terrific and passionate people in the non-profit world. I am doing things that I would never have found the gumption to do, coming from that quiet domestic place that I enjoyed with our children.
While I would have preferred to never have been wrenched from that peaceful life and thrown most unwillingly into a world of doctors and researchers, there is joy to be found in what I do now. There is optimism. There is anticipation, mixed with utter bewilderment that I am trying, and actually doing some of these things.
It is very different from my former life which focused on home and hearth, teaching our children history and poetry. But it is also very different from living on a pediatric oncology floor, so I am grateful.
Looking forward can be intimidating.
I think about the future, of our children going off to college. Of research. Of the things that I would like to get done before we might become medically busy again. There is a pressured determination that comes with LFS, to reach goals while you are afforded the opportunity. I see it in my mutant friends. I see it in myself.
But I suspect that most mothers have a similar sense of urgency, as their children grow up and prepare to leave. Our family dynamic will be different when Alex goes off to college in a year and a half. I am trying to make the most of this time together, particularly as we have missed so much of it in recent years.
The changes that we have gone through will prepare us for the transitions that will come. I know that change is the only constant. I try to be open to what the future will bring. I am really hopeful that it will again be filled with poetry, humor and beauty.
But Brent says that he would be satisfied if it simply offered an extra helping of mashed potatoes.
I have a dear mutant friend whose son has just been diagnosed with osteosarcoma. I have been trying to provide support, encouragement and tips for what could lay ahead for them. This requires that I recall our journey of three years ago in detail, revisiting the challenges, and remembering the fear.
I am so grateful to be on this side of the nightmare. I shake myself, shedding the worries that cling to those events. I have to remind myself that our reality is different now. Those trials are currently behind us. May they always remain so.
Looking back can also be lovely
Last night at dinner, Brent thoroughly delighted in a side dish of mashed potatoes. I was transported back to a time before our challenges, when the kids memorized poetry with me, and learned interesting things that had far less of a practical application than they currently do.
"Mashed Potato/Love Poem." by Sidney Hoddes
If I ever had to choose between you
and a third helping of mashed potato,
(whipped lightly with a fork
not whisked,
and a little pool of butter
melting in the middle...)
I think
I'd choose
the mashed potato.
But I'd choose you next.
We pulled out the poetry books from the bookshelf in the kitchen, and read through some of our favorites, right there at the dining room table. In our home, we have always been drawn to two types of poems: those filled with beauty, and those bursting with humor.
This exercise was rather like recalling a dream for me, not in the moments upon waking, when the details are fresh and crisp, but after lunchtime with the fuzzy bits coming to your mind all out of order. Last night I longed for the warmth and quiet of my bed, to somehow return to that now foreign story, filled with poems, innocence and promise.
But seldom can you revisit those sorts of dreams.
Looking forward can be exciting.
My life has taken a big turn, obviously, from what I had ever imagined for myself. I am working with some terrific and passionate people in the non-profit world. I am doing things that I would never have found the gumption to do, coming from that quiet domestic place that I enjoyed with our children.
While I would have preferred to never have been wrenched from that peaceful life and thrown most unwillingly into a world of doctors and researchers, there is joy to be found in what I do now. There is optimism. There is anticipation, mixed with utter bewilderment that I am trying, and actually doing some of these things.
It is very different from my former life which focused on home and hearth, teaching our children history and poetry. But it is also very different from living on a pediatric oncology floor, so I am grateful.
Looking forward can be intimidating.
I think about the future, of our children going off to college. Of research. Of the things that I would like to get done before we might become medically busy again. There is a pressured determination that comes with LFS, to reach goals while you are afforded the opportunity. I see it in my mutant friends. I see it in myself.
But I suspect that most mothers have a similar sense of urgency, as their children grow up and prepare to leave. Our family dynamic will be different when Alex goes off to college in a year and a half. I am trying to make the most of this time together, particularly as we have missed so much of it in recent years.
The changes that we have gone through will prepare us for the transitions that will come. I know that change is the only constant. I try to be open to what the future will bring. I am really hopeful that it will again be filled with poetry, humor and beauty.
But Brent says that he would be satisfied if it simply offered an extra helping of mashed potatoes.
Tuesday, February 25, 2014
We do what we must
In a zen moment, I said that we will do what we must. Then, I waited to learn of the pathology, to see which way the road would veer.
They found a nest of melanoma cells in one of the sentinel lymph nodes. So, a sharp left turn.
At one point, overflowing with snark, I wondered if I was supposed to perfect my response to the statement "Your child has cancer." We have done this four times now. Four. I would like the score between them to remain tied, at 2-2, forever. They say of a tie, that it is like kissing your sister. If so, Brent should pucker up.
While I have had something of a temper tantrum over this, my son seems to soldier on pretty well. He is a teenager now. He does not go into this with ignorance or inexperience, as he did when he was eleven. Brent knows what chemo is. He knows what surgery means. He can evaluate the merits of a port vs. a PIC line. Where there is room for his preferences, he is making them known, and I am am working to accommodate them.
His greatest desire is to be in school with his friends, of course. I am working out the logistics so that his treatment has the lowest impact on his attendance. But every cancer is different, as every patient is different, so it is nearly impossible to plan. However, I have been working on various options. Having options is a good thing.
I have always encouraged independence in my children. Alex works things out with his coaches and teachers. From an early age, we have encouraged them to work things out with each other. I seldom arbitrate. The older ones negotiate three ways, as they divide their household responsibilities, in a manner worthy of a future at the UN.
Our job as parents is to make ourselves irrelevant. We are not unimportant, but our kids function quite well without us.
Brent turned 14 last fall. He will begin to drive in a year. He will be off to college before I know it.
As you send your child off to college, they need to know how to do laundry and balance a checkbook. I also need to educate my children on how to manage, and be medically independent. By necessity, Lauren and Brent have become adept at enduring their various scans solo. They do not need my encouragement to get labs drawn, IV's run, or blood products administered. Brent can navigate the maze of the hospital to half a dozen different departments completely on his own.
I am hoping that this is Brent's last bout of cancer before he graduates. (Hell, I am hoping that this is his last bout ever, if I could be so greedy) I suppose that he should be more responsible for driving this time, with Dan and me in the passenger seat to help guide him, on his cancer learner's permit. He needs to learn to answer (and to ask) more questions, with us just supervising. He is a bright kid, and I know that he can do this, I simply wish that it weren't something he were required to do.
Our goal as his parents is to make ourselves irrelevant, in baby steps, in all things.
We do what we must.
This will mean yet another, more extensive surgery, and a full year of treatment. This will mean beginning the cancer clock over again. This will mean dealing with the uncertainty and worry about whether the treatment is working. This will mean less confident scan days. Again.
Somehow, I am not completely out of my mind. It is curious to me, the relative peace that I have. If I am honest about it, I wonder if it is faith or fatigue. We have had relatively short periods of time between medical upheaval. It has been little more than a weekend furlough. So, it might just be fatigue. But, I have also been working on faith, which I struggle with. Let's just call it even for now.
At one point, overflowing with snark, I wondered if I was supposed to perfect my response to the statement "Your child has cancer." We have done this four times now. Four. I would like the score between them to remain tied, at 2-2, forever. They say of a tie, that it is like kissing your sister. If so, Brent should pucker up.
While I have had something of a temper tantrum over this, my son seems to soldier on pretty well. He is a teenager now. He does not go into this with ignorance or inexperience, as he did when he was eleven. Brent knows what chemo is. He knows what surgery means. He can evaluate the merits of a port vs. a PIC line. Where there is room for his preferences, he is making them known, and I am am working to accommodate them.
His greatest desire is to be in school with his friends, of course. I am working out the logistics so that his treatment has the lowest impact on his attendance. But every cancer is different, as every patient is different, so it is nearly impossible to plan. However, I have been working on various options. Having options is a good thing.
I have always encouraged independence in my children. Alex works things out with his coaches and teachers. From an early age, we have encouraged them to work things out with each other. I seldom arbitrate. The older ones negotiate three ways, as they divide their household responsibilities, in a manner worthy of a future at the UN.
Our job as parents is to make ourselves irrelevant. We are not unimportant, but our kids function quite well without us.
Brent turned 14 last fall. He will begin to drive in a year. He will be off to college before I know it.
As you send your child off to college, they need to know how to do laundry and balance a checkbook. I also need to educate my children on how to manage, and be medically independent. By necessity, Lauren and Brent have become adept at enduring their various scans solo. They do not need my encouragement to get labs drawn, IV's run, or blood products administered. Brent can navigate the maze of the hospital to half a dozen different departments completely on his own.
I am hoping that this is Brent's last bout of cancer before he graduates. (Hell, I am hoping that this is his last bout ever, if I could be so greedy) I suppose that he should be more responsible for driving this time, with Dan and me in the passenger seat to help guide him, on his cancer learner's permit. He needs to learn to answer (and to ask) more questions, with us just supervising. He is a bright kid, and I know that he can do this, I simply wish that it weren't something he were required to do.
Our goal as his parents is to make ourselves irrelevant, in baby steps, in all things.
We do what we must.
Tuesday, January 7, 2014
The Scan Monster
We have been enjoying some time together over the holidays. With the brutally cold weather, our holiday has been extended a bit. This, in my opinion, is not a bad thing.
Yesterday was scan day, what I like to call "Big Scan Day" because it includes extra Li-Fraumeni bonus imaging. In addition to checking for relapse cancer, we are looking for new cancer. Awesome, because one boogeyman (well, in our case, two boogeymen) isn't quite enough. It always makes for a very long day. Happily though, with school being called off for the weather yesterday, I could leave Olivia at home with Alex. It is a much, much longer hospital day with a 5 year old in tow.
Lauren, Brent and I arrived at the hospital at 8:30...and began the imaging marathon with two ultrasounds. We then headed over to MRI where Brent spent 3 hours in the tube. When he got out, I sent Lauren in to MRI and hoofed it over to CT with Brent. He was pretty whipped, so when his chest CT was done, he went across the hospital to clinic by himself, rather than trudging back to MRI to pick up Lauren. We are doing this all without a wheelchair and only one crutch, because he feels great. But at this point in the day, we were all getting tired. Brent teases that even an hour in the hospital somehow requires a nap when we get home. This day would end up being nearly 9 hours.
I waited for Lauren to finish her hour in the tube and then we met up with Brent in clinic to draw labs, have physical exams and begin the wait as results begin to trickle in. The main apprehension for me, was the chest CT. Brent has a cough. He actually has had one for some time, although with a runny nose, most thankfully. At this juncture in the scan cycle, your mind begins to fill with thoughts, questions and doubts. By the end of the day, you are positively drowning in them: Have I been foolish to be reassured by the runny nose? How could I be so stupid? Clearly, this masked the oncological problem in his lungs... Clearly.
Let's have small a musical interlude via Rihanna:
I'm friends with the monster that's under my bed
Get along with the voices inside of my head
You're trying to save me, stop holding your breath
And you think I'm crazy, yeah, you think I'm crazy
It is kind of like that on scan day. I have found that this internal cacophony is something to just muscle your way through. I try to recognize that it is crazy making, the thoughts going on in my head, but there is truth in what the Scan Monster says. It is really hard to defend against a truth, one that is grounded in experience. Cancer has been our companion, and could be again.
So, I try to talk louder than the monster. But, there is the scan day megaphone, as well as the hospital triggers for me, as we tour the set of Nightmares Past throughout the day: The bank of payphones that I called Dan from, to tell him that Lauren had adrenal cancer as a baby. The fountain, where I would pass out pennies to the kids after each of Lauren's oncology check-ups, so they could make their wishes (I made a few of my own, believe me). The radiology waiting room, vivid purple, where Dan and I spent agonizing hours, worrying that Brent's cancer extended beyond the giant tumor on his pelvis, and again, a couple months later as we waited, terrified, for Lauren's second cancer staging. These visual reminders only turn up monster volume.
Incidentally, I don't hear the other voices so much, my everyday internal dialog, on scan day: We have been lucky in our cancer journey. We are fortunate to have these fine health facilities in our backyard, such that we can keep up with the scans. We have great doctors that are both careful and attentive. Small cancer is better than big tumors. Early is better than later...
Never is best of all.
Finally, this mental self-sparring was interrupted. I met with our new oncologist. We looked over the preliminary results and Lauren is deemed 'unremarkable.' (We naturally teased Hollywood, very happy for this, but differentiating this radiological opinion, from that of the world at large)
However, for Brent there were a couple of things to look at. We checked over the chest CT together, comparing it to October's scans, and I am reasonably comfortable with how things looked. The three small 'somethings' in his lungs are stable and likely nothing. They certainly have nothing to do with the cough, so I can turn off that mental soundtrack at least. We left with assurances that our new doc would call with the final results.
He called me around 8pm last night with additional CT conclusions, and a recommendation to do a follow-up ultrasound on Brent's thyroid to get a better look. A hoop to jump, but an easy one. The enlarged lymph nodes in his hip area will wait a month for the opinion of his orthopedic surgeon. That can wait.
It is quiet here today. The roaring winds of last night have been silenced, and the frozen disturbances in the forest behind our house have settled. I woke to sunshine, even if it is still frigid cold. It made me want to stay home, all the more. So, I snuggled Olivia, reading countless books to her, made a special breakfast for the kids and enjoyed the calm of the added bonus of winter holiday.
It is pretty quiet in my head today as well.
Thursday, December 26, 2013
Eleven days of Christmas
It is Christmas in Cleveland.
There are some things that you can deduce: It was nearly 70 degrees a few days ago. This morning, it was 17 with a dusting of snow. A white Christmas is seldom ruled out as a possibility here, but the ambiance offered by snow is not what makes for holiday cheer in our home.
Truth be told, I was struggling with it a bit this year. I usually bake for dozens of people, work my Christmas cards early, decorate enthusiastically, both inside and out... I suppose that this year I was a little gun shy, because Christmas has not been my friend in recent memory, although the surgical trend is certainly in our favor: Two pediatric surgeries with the cancer double bonus for Christmas in 2011, only one surgery with talk of amputation in December of 2012... These recollections are not the nostalgic stuff that you weave into song. It is the ghost of Christmas past taking up residence in my heart, and it was kind of killing my mojo.
The ghost of Christmas future is no better a houseguest, for the record. We are backed up against scans, which means the confident glow of good results has begun to fade. Our 3 month period of grace has about finished and we are waiting to see if we can re-up with NED. I have thought about moving our scans so that they fall in early December next year, because I would love to not think about scans at all during the holidays, except for the reassurance that recent imaging brings.
There is a stress that goes with Christmas for a lot of people. I have always been a firm believer in doing only what brings you joy, rather than what people expect. This year, there wasn't a load of baking here, because I just didn't feel it. Some cards are going out a little late, much to Dan's chagrin. However, I do not think that folks will mind. I have never been one to get stressed out about the trappings, or about timeliness when it comes to truly optional things.
Part of my discomfort in December this year though, was guilt. I ought to have been deliriously happy, rather than distracted, or worried. I happen to know people who have real and pressing worries, and I am unable to help them in the way that I would like. So, I was feeling rather inadequate, too. My funk settled in.
However, falling in and amongst the nagging angst of the past, and worry about the future over the last several weeks, was my five year old daughter, Olivia. She brings me joy immeasurable. Her excitement about making gifts for people that she loves was disastrous to a clean kitchen as she perched at the counter engrossed in her visions and industry. The trail of paper scraps perpetually littering the floor as she fashioned all sort of art projects will not get us featured in Better Homes and Gardens. But she has certainly helped me out of my funk with her crafting, her singing and her story telling.
Everyone should enjoy the company of a 5 year old at Christmas. Her enthusiasm was so infectious, I found myself catching a bit of holiday cheer. I could rent her out next year, watch her make a mess at some grumpy person's house, return with her to our own clean house and make a bundle. (win, win, win!) I should get busy on that business plan. ;)
A dear friend of ours arranged for us to have a family photos made. She called, offering this wonderful gift, noting that things are currently good, and that we are all well. She knows that I would not likely think to do this on my own, and I am very grateful that she provided the opportunity. As we gathered in her barn on a drippy evening last week, I found myself smiling at Olivia, proudly decked out in her "cowgirl boots" and hat. She was so joyful. Brent found a kitten to play with, and giggled in delight. Alex and Lauren took charge of our two dogs, who were fascinated with the interesting smells of new, and much larger animals. It was all a hoot.
We took many photos. I was overwhelmed at one point, thinking of how fragile our future is, this awareness and understanding coming from our very rocky past. My thoughts of next year do not come with any basic assumptions anymore. I do not think about the distant future in a general way, I realized. Those two ghosts were creeping into the barn, and I struggled for a moment with how to get rid of them.
Because, really, I have found that happiness for me, comes from embracing a series of todays, and celebrating our daily gift of companionship. Worry about the future can only rob me of what the present has to offer. That time in the barn, all of us together, well, that was a gift. As I move through this life, gliding from one moment to the next, I am hopeful that I maintain the innocence, the generosity and acceptance of Olivia.
She was enchanted with the arrival of Santa at our house on the 23rd (a tradition borne of chemo, fatigue and neutropenia two years ago) She excitedly passed out the gifts that she made for the people that she loves. The Ramers have stretched the family holiday visits over 8 days, although yesterday, Olivia announced to all that there were 11 days of Christmas and could not be dissuaded from this position. I am not going to feel ripped off, failing to get the full 12 days heralded in song. I choose instead to count it as a 10 day bonus.
We have enjoyed our time as a family, playing games together, sharing laughter and memories and love. Today, I might finish sending out our holiday greetings with the bonus time of extended Christmas. I am truly enjoying it, moment by moment, despite the slow start.
I hope that you have enjoyed it as well, surrounded by family and wrapped in love.
There are some things that you can deduce: It was nearly 70 degrees a few days ago. This morning, it was 17 with a dusting of snow. A white Christmas is seldom ruled out as a possibility here, but the ambiance offered by snow is not what makes for holiday cheer in our home.
Truth be told, I was struggling with it a bit this year. I usually bake for dozens of people, work my Christmas cards early, decorate enthusiastically, both inside and out... I suppose that this year I was a little gun shy, because Christmas has not been my friend in recent memory, although the surgical trend is certainly in our favor: Two pediatric surgeries with the cancer double bonus for Christmas in 2011, only one surgery with talk of amputation in December of 2012... These recollections are not the nostalgic stuff that you weave into song. It is the ghost of Christmas past taking up residence in my heart, and it was kind of killing my mojo.
The ghost of Christmas future is no better a houseguest, for the record. We are backed up against scans, which means the confident glow of good results has begun to fade. Our 3 month period of grace has about finished and we are waiting to see if we can re-up with NED. I have thought about moving our scans so that they fall in early December next year, because I would love to not think about scans at all during the holidays, except for the reassurance that recent imaging brings.
There is a stress that goes with Christmas for a lot of people. I have always been a firm believer in doing only what brings you joy, rather than what people expect. This year, there wasn't a load of baking here, because I just didn't feel it. Some cards are going out a little late, much to Dan's chagrin. However, I do not think that folks will mind. I have never been one to get stressed out about the trappings, or about timeliness when it comes to truly optional things.
Part of my discomfort in December this year though, was guilt. I ought to have been deliriously happy, rather than distracted, or worried. I happen to know people who have real and pressing worries, and I am unable to help them in the way that I would like. So, I was feeling rather inadequate, too. My funk settled in.
However, falling in and amongst the nagging angst of the past, and worry about the future over the last several weeks, was my five year old daughter, Olivia. She brings me joy immeasurable. Her excitement about making gifts for people that she loves was disastrous to a clean kitchen as she perched at the counter engrossed in her visions and industry. The trail of paper scraps perpetually littering the floor as she fashioned all sort of art projects will not get us featured in Better Homes and Gardens. But she has certainly helped me out of my funk with her crafting, her singing and her story telling.
Everyone should enjoy the company of a 5 year old at Christmas. Her enthusiasm was so infectious, I found myself catching a bit of holiday cheer. I could rent her out next year, watch her make a mess at some grumpy person's house, return with her to our own clean house and make a bundle. (win, win, win!) I should get busy on that business plan. ;)
A dear friend of ours arranged for us to have a family photos made. She called, offering this wonderful gift, noting that things are currently good, and that we are all well. She knows that I would not likely think to do this on my own, and I am very grateful that she provided the opportunity. As we gathered in her barn on a drippy evening last week, I found myself smiling at Olivia, proudly decked out in her "cowgirl boots" and hat. She was so joyful. Brent found a kitten to play with, and giggled in delight. Alex and Lauren took charge of our two dogs, who were fascinated with the interesting smells of new, and much larger animals. It was all a hoot.
We took many photos. I was overwhelmed at one point, thinking of how fragile our future is, this awareness and understanding coming from our very rocky past. My thoughts of next year do not come with any basic assumptions anymore. I do not think about the distant future in a general way, I realized. Those two ghosts were creeping into the barn, and I struggled for a moment with how to get rid of them.
Because, really, I have found that happiness for me, comes from embracing a series of todays, and celebrating our daily gift of companionship. Worry about the future can only rob me of what the present has to offer. That time in the barn, all of us together, well, that was a gift. As I move through this life, gliding from one moment to the next, I am hopeful that I maintain the innocence, the generosity and acceptance of Olivia.
She was enchanted with the arrival of Santa at our house on the 23rd (a tradition borne of chemo, fatigue and neutropenia two years ago) She excitedly passed out the gifts that she made for the people that she loves. The Ramers have stretched the family holiday visits over 8 days, although yesterday, Olivia announced to all that there were 11 days of Christmas and could not be dissuaded from this position. I am not going to feel ripped off, failing to get the full 12 days heralded in song. I choose instead to count it as a 10 day bonus.
We have enjoyed our time as a family, playing games together, sharing laughter and memories and love. Today, I might finish sending out our holiday greetings with the bonus time of extended Christmas. I am truly enjoying it, moment by moment, despite the slow start.
I hope that you have enjoyed it as well, surrounded by family and wrapped in love.
Saturday, November 2, 2013
Counting up the October blessings
I have had a busy month. I generally accept whatever lands in my lap, be it screwed up genetics or the kindness of strangers (or of loved ones.) While I do go out and make some things happen in this life, lately, I have been guided by what comes my way. A lot has been put in my path recently.
As I look it over, it has been overwhelmingly positive.
We did Lauren's Make a Wish. Our trip to California was a huge blessing, and Hollywood couldn't have had a better experience. I am so amazed by the kindness of strangers. My faith in humanity, if it had faltered at all, was renewed by the generosity of so many toward my children. Having endured two solid years of 'medical nonsense,' as I euphemistically refer to this nightmare, I was glad to be together, outside of a medical facility, and for us to just have some fun as a family. I was very grateful to not have to plan anything. I feel lucky beyond measure.
I went to Boston last weekend to a genetics conference, which enabled me to meet some online friends. I would try to write about what this was like emotionally, but I am afraid that I couldn't describe it any better than my dear friend Jen Mallory already has. So, I won't even try to, rather just direct you to her beautifully written blog:
http://lilykaymonkey.blogspot.com/2013/10/sisterhood-of-travelling-mutants.html
There was way more laughter than should be allowed...and hideously inappropriate cancer humor. I am a firm believer in the notion of 'whatever gets you through.' These ladies definitely are 'getting through.' I should mention that a song/chant of "I heard a little rumor, heard that you have a tumor, you have to have some humor, can't be a doom and gloomer" probably should not be what you lead with, approaching a newly diagnosed cancer patient. However, this group is not standard, lets just say.
Further example of non-standard, when asked how many malignancies she had had, one mutant friend had difficulty answering, because she didn't consider melanoma a "real cancer." I think that we settled on five for her, but there was some debate, and also some beer. So don't hold me to that number.
If the mutant convention was enjoyable, it was also enlightening. I met some researchers, and learned about the things that they are studying. I am grateful for their work, and for the fact that we will gather together, researchers and subjects alike, every year now.
While some of the presentations were very "number-y,' there were encouraging things to be found in nearly every report. My personal favorite was a researcher out of Utah, who serendipitously learned that elephants and whales, despite their much larger size and increased number of cells, oddly, most surprisingly, have a low rate of cancer. There is almost no cancer among elephants. He investigated and it was discovered that this is because elephants have not one pair of p53 genes, but 20 pairs. 20!!! When I shared this with Lauren, she asked if she might borrow some elephant DNA, and giggled enthusiastically. I would absolutely get her transfused with pachyderm blood, if I thought it would help. It is coming, or something of the like, though, and I can feel it.
It was birthday season, and birthdays are joyful days, particularly in our house where we do not take them for granted. Cannot take them for granted. The oldest three kids all have birthdays within 6 weeks of one another, and we have had our fair share of cake. I keep saying that I feel that good things are coming our way, without any real justification for the feeling. Out of the blue, Dan's dad offers not just his former car, but his pride and joy, to Alex. On his 16th birthday. Yes, we could never have done that for him.
While Alex is understandably excited about this, I recognize that it is a gift to me as well. He will not only be able to get himself to soccer practice and school once he gets his license, but will be able to help me get the other kids thither and yon...if I ever get it together enough to organize after school activities beyond physical therapy for any of them. Sigh...I will get there.
Upon our return from our Make a Wish trip to California, we did scans. They were generally good, as I reported out. There was one node to follow up on this week. And I had slipped in the dermatology 'once over' this week as well, one that was supposed to happen over the summer, but had been pushed to the bottom of the priority list. This is understandable, given that we had two New York surgeries to contend with.
So, when I returned from Boston, we had dermatology for the kids, which was not completely straightforward and will require several follow up visits. Sigh... Thursday, Brent had his follow up ultrasound for the concerning lymph node, which initially showed that it had grown. Not a fan of this. After dropping him off at school, I went to a friends house, to have coffee and catch up. As I prattled on and on about my worries that afternoon, I fielded calls from the hospital. Judy is a beautiful, dear friend with the patience of Job, sitting there as I sorted through the various hospital issues on my cell phone. Eventually, the CT was cancelled and it was finally determined that we are not looking at lymphoma.
"You are a mom. I don't imagine that you ever stop worrying, knowing that everything can be cancer. I don't know how you do it."
I explained it like this: Lauren had headaches all week, a symptom of a virus that has been freely shared in my house. Because she just had scans, I was not at all worried. It was the only reason. Usually, scans are on a single day, marked by mounting anxiety, which we try to mitigate, followed by emotional release with the hospital phone call. Big worry, then giant relief and celebration when we get the all clear. And peace, and confidence (oh, except for that time when they called about Christmas brain surgery). The scans, which are stressful, are the cover charge for any ability to relax. Ever. This time, there were follow ups...and so the worry drags out a bit.
The good glow of clear scans lasts about 2 1/2 months. At the end of the day, we have been granted this blessing. So, I will run with this. There are good things coming our way. Looking this over, I have no idea why I ever doubted it. I am grateful for the further confirmation this week.
Brent and I leave in the morning for NYC, armed with some oncologic reassurances, looking for orthopedic encouragement. We will again be relying on the kindness of strangers, taking an Angel Flight from Cleveland.
Good things are indeed coming our way. The blessings from all sides keep landing in my path.
As I look it over, it has been overwhelmingly positive.
We did Lauren's Make a Wish. Our trip to California was a huge blessing, and Hollywood couldn't have had a better experience. I am so amazed by the kindness of strangers. My faith in humanity, if it had faltered at all, was renewed by the generosity of so many toward my children. Having endured two solid years of 'medical nonsense,' as I euphemistically refer to this nightmare, I was glad to be together, outside of a medical facility, and for us to just have some fun as a family. I was very grateful to not have to plan anything. I feel lucky beyond measure.
I went to Boston last weekend to a genetics conference, which enabled me to meet some online friends. I would try to write about what this was like emotionally, but I am afraid that I couldn't describe it any better than my dear friend Jen Mallory already has. So, I won't even try to, rather just direct you to her beautifully written blog:
http://lilykaymonkey.blogspot.com/2013/10/sisterhood-of-travelling-mutants.html
There was way more laughter than should be allowed...and hideously inappropriate cancer humor. I am a firm believer in the notion of 'whatever gets you through.' These ladies definitely are 'getting through.' I should mention that a song/chant of "I heard a little rumor, heard that you have a tumor, you have to have some humor, can't be a doom and gloomer" probably should not be what you lead with, approaching a newly diagnosed cancer patient. However, this group is not standard, lets just say.
Further example of non-standard, when asked how many malignancies she had had, one mutant friend had difficulty answering, because she didn't consider melanoma a "real cancer." I think that we settled on five for her, but there was some debate, and also some beer. So don't hold me to that number.
If the mutant convention was enjoyable, it was also enlightening. I met some researchers, and learned about the things that they are studying. I am grateful for their work, and for the fact that we will gather together, researchers and subjects alike, every year now.
While some of the presentations were very "number-y,' there were encouraging things to be found in nearly every report. My personal favorite was a researcher out of Utah, who serendipitously learned that elephants and whales, despite their much larger size and increased number of cells, oddly, most surprisingly, have a low rate of cancer. There is almost no cancer among elephants. He investigated and it was discovered that this is because elephants have not one pair of p53 genes, but 20 pairs. 20!!! When I shared this with Lauren, she asked if she might borrow some elephant DNA, and giggled enthusiastically. I would absolutely get her transfused with pachyderm blood, if I thought it would help. It is coming, or something of the like, though, and I can feel it.
It was birthday season, and birthdays are joyful days, particularly in our house where we do not take them for granted. Cannot take them for granted. The oldest three kids all have birthdays within 6 weeks of one another, and we have had our fair share of cake. I keep saying that I feel that good things are coming our way, without any real justification for the feeling. Out of the blue, Dan's dad offers not just his former car, but his pride and joy, to Alex. On his 16th birthday. Yes, we could never have done that for him.
While Alex is understandably excited about this, I recognize that it is a gift to me as well. He will not only be able to get himself to soccer practice and school once he gets his license, but will be able to help me get the other kids thither and yon...if I ever get it together enough to organize after school activities beyond physical therapy for any of them. Sigh...I will get there.
Upon our return from our Make a Wish trip to California, we did scans. They were generally good, as I reported out. There was one node to follow up on this week. And I had slipped in the dermatology 'once over' this week as well, one that was supposed to happen over the summer, but had been pushed to the bottom of the priority list. This is understandable, given that we had two New York surgeries to contend with.
So, when I returned from Boston, we had dermatology for the kids, which was not completely straightforward and will require several follow up visits. Sigh... Thursday, Brent had his follow up ultrasound for the concerning lymph node, which initially showed that it had grown. Not a fan of this. After dropping him off at school, I went to a friends house, to have coffee and catch up. As I prattled on and on about my worries that afternoon, I fielded calls from the hospital. Judy is a beautiful, dear friend with the patience of Job, sitting there as I sorted through the various hospital issues on my cell phone. Eventually, the CT was cancelled and it was finally determined that we are not looking at lymphoma.
"You are a mom. I don't imagine that you ever stop worrying, knowing that everything can be cancer. I don't know how you do it."
I explained it like this: Lauren had headaches all week, a symptom of a virus that has been freely shared in my house. Because she just had scans, I was not at all worried. It was the only reason. Usually, scans are on a single day, marked by mounting anxiety, which we try to mitigate, followed by emotional release with the hospital phone call. Big worry, then giant relief and celebration when we get the all clear. And peace, and confidence (oh, except for that time when they called about Christmas brain surgery). The scans, which are stressful, are the cover charge for any ability to relax. Ever. This time, there were follow ups...and so the worry drags out a bit.
The good glow of clear scans lasts about 2 1/2 months. At the end of the day, we have been granted this blessing. So, I will run with this. There are good things coming our way. Looking this over, I have no idea why I ever doubted it. I am grateful for the further confirmation this week.
Brent and I leave in the morning for NYC, armed with some oncologic reassurances, looking for orthopedic encouragement. We will again be relying on the kindness of strangers, taking an Angel Flight from Cleveland.
Good things are indeed coming our way. The blessings from all sides keep landing in my path.
Tuesday, October 15, 2013
California Dreaming
We have been very busy, but a good busy. Actually, wonderful, magical, blessed time to be together as a family. Lauren had her Make a Wish, which was to be in a Hollywood movie. She was willing to wait for it. It was everything that she hoped that it would be, and then some.
Make a Wish is a terrific organization that tries to grant wishes to children with life threatening conditions, like a brain tumor the size of an egg or giant, throbbing osteogenic tumors. We have been blessed and fortunate to have had two wishes granted in the past 5 months, although that is the ultimate "glass half full" statement. The empty part of the glass is how we had two children with life threatening illness, simultaneously. I prefer to look at the blessings we have had, and this trip was definitely a blessing.
I must say that we packed a ton into the five days that we were in California: a day at Universal Studios and City Walk, a trip to Santa Monica Pier, a day of filming, a visit to the Hollywood walk of fame, an afternoon at Venice Beach, a drive up to the Griffith Observatory, and through the foothills of Hollywood for a photo op by the famous sign, an evening at the Getty Center which has stunning views from a mountain top... It was all fantastic.
I think about the opportunity we had to be together, and for Lauren to have her dream of being in a movie, something that we couldn't have possibly done for her on our own. I am so grateful to Southwest Airlines, those who donated airline miles and hotel points, the generosity of Disney and Universal Studios. We had everything that we could need, and it was all planned out for us. It was an amazing gift to us all.
As I sat on the beach one afternoon, watching my children play in the surf, I enjoyed some quiet. Brent took his crutches into the water, delighted to be able to swim. I watched the sun glinting off of the water, reducing the kids forms to silhouettes. It was really beautiful.
I remember how my friend had shared with me a dream that she had very early in Brent's diagnosis. She had dreamt of our children, all much older, playing together on the beach. Monica is one of those people who have dreams that mean something, that seem somehow prophetic. In the very dark days of that fall, I couldn't fathom how her dream could be anything more than a fantasy. Last week, I watched that dream unfold, right before my eyes on Venice Beach.
The goose bumps I had could not simply be attributed to the cool ocean breeze, as this realization washed over me.
But as I watched my children splash in the Pacific, I thought about how far we had come. Sure, we flew 2,000 miles to get here, but the road to this point was really much farther. It was physically grueling, emotionally exhausting, circuitous and perilous. But, we had arrived together at the Pacific...meaning 'the peaceful' ocean.
Lauren was especially excited to be in the ocean. She wave jumped, coming up and double pointing to the heavens as she stuck the landings. Over and over, she took on the waves that came in, delighting in the challenge and celebrating in her own success. She and Alex went pretty far out, and swam together. I like how they look out for one another and enjoy each others company.
Olivia found a long stem rose in the surf, and planted it in the sand, reminding me of another dear friend who finds comfort in roses discovered in unexpected places. Livvy began playing with the waves closer to shore, starting most sandpiper-like, being chased by them as all children do at that age. Eventually, she too ended up wet, splashing around with Brent. She isn't experienced about looking out to sea, and she got surprised by a wave, which completely knocked her over. She came running in to have her face wiped and a sip of Gatorade to wash out the saltwater taste. And then she was back in the ocean.
They just pick themselves up, and get back to giggling. Back to living.
So this morning I was waiting for yesterdays scan results, looking out to sea. I was trying to be prepared, and not get completely knocked over by the waves. At long last, the call came and the scans look generally good...only one lymph node to be followed up on in a month. I think we have stuck the landing and can double point to the heavens.
I know that the Pacific was named "peaceful" only relative to the stormy, tumultuous Atlantic. There are still waves and sharks and other hazards out there.
But, today, I am most grateful for the relative peace that we enjoy as a family, and the good glow of mostly boring scan results.
Make a Wish is a terrific organization that tries to grant wishes to children with life threatening conditions, like a brain tumor the size of an egg or giant, throbbing osteogenic tumors. We have been blessed and fortunate to have had two wishes granted in the past 5 months, although that is the ultimate "glass half full" statement. The empty part of the glass is how we had two children with life threatening illness, simultaneously. I prefer to look at the blessings we have had, and this trip was definitely a blessing.
I must say that we packed a ton into the five days that we were in California: a day at Universal Studios and City Walk, a trip to Santa Monica Pier, a day of filming, a visit to the Hollywood walk of fame, an afternoon at Venice Beach, a drive up to the Griffith Observatory, and through the foothills of Hollywood for a photo op by the famous sign, an evening at the Getty Center which has stunning views from a mountain top... It was all fantastic.
I think about the opportunity we had to be together, and for Lauren to have her dream of being in a movie, something that we couldn't have possibly done for her on our own. I am so grateful to Southwest Airlines, those who donated airline miles and hotel points, the generosity of Disney and Universal Studios. We had everything that we could need, and it was all planned out for us. It was an amazing gift to us all.
As I sat on the beach one afternoon, watching my children play in the surf, I enjoyed some quiet. Brent took his crutches into the water, delighted to be able to swim. I watched the sun glinting off of the water, reducing the kids forms to silhouettes. It was really beautiful.
I remember how my friend had shared with me a dream that she had very early in Brent's diagnosis. She had dreamt of our children, all much older, playing together on the beach. Monica is one of those people who have dreams that mean something, that seem somehow prophetic. In the very dark days of that fall, I couldn't fathom how her dream could be anything more than a fantasy. Last week, I watched that dream unfold, right before my eyes on Venice Beach.
The goose bumps I had could not simply be attributed to the cool ocean breeze, as this realization washed over me.
But as I watched my children splash in the Pacific, I thought about how far we had come. Sure, we flew 2,000 miles to get here, but the road to this point was really much farther. It was physically grueling, emotionally exhausting, circuitous and perilous. But, we had arrived together at the Pacific...meaning 'the peaceful' ocean.
Lauren was especially excited to be in the ocean. She wave jumped, coming up and double pointing to the heavens as she stuck the landings. Over and over, she took on the waves that came in, delighting in the challenge and celebrating in her own success. She and Alex went pretty far out, and swam together. I like how they look out for one another and enjoy each others company.
Olivia found a long stem rose in the surf, and planted it in the sand, reminding me of another dear friend who finds comfort in roses discovered in unexpected places. Livvy began playing with the waves closer to shore, starting most sandpiper-like, being chased by them as all children do at that age. Eventually, she too ended up wet, splashing around with Brent. She isn't experienced about looking out to sea, and she got surprised by a wave, which completely knocked her over. She came running in to have her face wiped and a sip of Gatorade to wash out the saltwater taste. And then she was back in the ocean.
They just pick themselves up, and get back to giggling. Back to living.
So this morning I was waiting for yesterdays scan results, looking out to sea. I was trying to be prepared, and not get completely knocked over by the waves. At long last, the call came and the scans look generally good...only one lymph node to be followed up on in a month. I think we have stuck the landing and can double point to the heavens.
I know that the Pacific was named "peaceful" only relative to the stormy, tumultuous Atlantic. There are still waves and sharks and other hazards out there.
But, today, I am most grateful for the relative peace that we enjoy as a family, and the good glow of mostly boring scan results.
Sunday, August 11, 2013
Brent the Great, the One Hip Wonder
So, I was going through our photos, which incidentally, live on our hard drive and in some place called 'The Cloud.' I will not dazzle you with my knowledge of how these things work, because I am a little fuzzy on the details. Just know that like so many others out there, we take photos and they generally remain in digital form. We almost never print them out. But, I was looking for examples that will illustrate the design process for Brent's logo. Because if you didn't know him, it wouldn't make any sense.
It was hard, not simply in a technical way, to look over these pictures, and to see where we have been.
This first photo was taken on the last day of school in June of 2011 at our neighborhood bonfire, which is a tradition held dear in this household. In order to properly kick off summer, the kids go down to the park and burn their old homework assignments while the parents grill off hotdogs and such, a wonderful way to catch up with other families. My kids save their school papers all year in anticipation of this day. Their "burn pile" is pretty big. There is joy in burning that stuff...victory and satisfaction, all of which is quite evident in Brent's pose. Lauren isn't unhappy either.
I look at photos now differently than I did before. This is a great photo, just showing the delight of some children..."No more school! No more books! No more teacher's dirty looks!" (Actually, they enjoy school and the teachers are pretty terrific) But, I look at this now with the knowledge of what is coming in a few short weeks for Brent, and in 6 months for Lauren. I am a little haunted. Can't help it.
Brent was diagnosed the first week of school that fall, and our world fell apart. Brent was incredible, I have to say, making the best of every situation, and finding joy in the small things. Getting discharged after another week of chemo was always cause for jubilation. This photo was taken a few weeks into treatment, less than 3 months after the one above.
I was telling my mom, that going through the photos was shocking, in a way. Even when Brent's hair all fell out, practically overnight, for his birthday (yeah, that was fabulous timing), the physical changes were small, and we saw him daily. He was still Brent. He continued to celebrate discharge, or as we often called it, "parole."
Christmas. Lauren had brain surgery. We traveled to NYC to see about a surgery that might spare Brent's leg. While there, we visited a huge Toys R Us, which was something to see, and apparently, to celebrate.
Brent had his 'giant surgery,' in NYC. And 2 follow up surgeries. And more chemo. Time passed. The seasons changed. There is a lot covered by these spare sentences.
Before Brent finished with chemo, which is an experience so isolating that I struggle to express it, Brent wanted to see his friends. It was beautiful spring day, one weekend off, so we went to a soccer game, to see his former team play. I remember him crutching down the hill to the field that afternoon (which is steep enough to be a challenge, even without the mobility issues that he had) and I worried a bit as I watched, but you have to let them stretch their wings.
Brent had the best day, sitting on the bench with his team and at the end, we took this photo, which still brings tears to my eyes. The soccer club, along with the school and the community here, have been so amazingly supportive of our family.
After chemo was finished, Brent had physical therapy, to try to strengthen his leg, and learn how to walk on his new hip. He returned to school, and we tried to get back to a normal life. We were offered tickets to go as a family to a Browns game by Angela, the Child life specialist, with other families from the oncology floor. We had a fabulous day, enjoying some beautiful weather, doing something that normal families do, and watching the Browns actually win. Believe me when I say that a win for the Browns is cause to celebrate, nearly as much as the day Brent finished chemo.
This time Alex struck the pose:
Brent had an awesome year at school, despite missing the month of January for another jaunt to NYC for surgery to do an muscle flap. But, as I mentioned, May was a little rough when we learned about the donor bone disintegrating, and that he might have cancer again. When we found out that the pathology was clean and that there were orthopedic options involving limb salvage, we certainly celebrated. We were cautioned that it would not be easy, that there would be at least 2 surgeries as part of the reconstruction.
Always a surprise, but a pleasant one this time, Dr. Healey told us after June's surgery that the ligaments holding Brent's femur to the pelvic bones were pretty tight and might be sufficient to walk on, even without an iliac wing. Unsure of what Dr. Healey might do leading into the second (really, 6th) surgery, Brent asked me, if he was left with what is known as a 'flail hip,' could we call him the "One Hip Wonder?" He was giggling like nobody's business. But that is just how we roll here.
Back in New York in July, after it was determined that we would not put in any hardware, Brent and Dan came up with the following, using an image, serendipitously discovered on the internet, and the magic of photo shop:
Cancer can take his hip bone, but it cannot take his humor (or his humerus-ha!). It may prevent him from playing soccer, but it cannot stop his determination...whatever he decides to do in this life. In doing this logo, he is defining himself, rather than being defined by cancer. It is both empowering and powerful.
When we had scans earlier this month, Brent and I went to the Cleveland Museum of Art on a break between appointments. We got the call while we were there from the hospital telling us that the scans were clean. I snapped this photo at the lagoon. His self-appointed title is "Brent the Great, the One Hip Wonder." Given what he has gone through in the past two years, he can be called whatever he wants. I like it though. I kinda like the logo, too.
Thursday, July 18, 2013
The latest (or last) surgery
We wait, with coffee.
We have returned to New York, to do what we are hoping is Brent's last surgery. We are grateful for our blessings, which I count like a rosary. We have no oncology. We are all together as a family. We have no oncology. With Dr. Healey's help, Brent will be able to walk. We have no oncology. I cannot seem to repeat that one enough times.
It has been a long hard slog these past two years. But I feel, more than hope, that our world is going to open up, and that our kids will only visit the hospital once every three months for scans. I feel, more than wish, that our family might be having a bit of a breather. Often, as we approached such a point or potential before, I longed for such normalcy, and craved for time at home, but I didn't feel that it would happen, quite the way that I do now. I have a calm about things, that I have not had in a long time. I do not feel that I have to fight my circumstances. I do not like to fight, incidentally, being more of a 'peace and love' kind of girl.
My alarm went off at 430, which was not nearly long enough after Vanco was finished. Once I showered, I woke Brent so that he could take his second Hibaclens shower. As we left, I woke Alex to bolt the door behind us so that if Olivia should wake up, she would not wander, because I knew that Alex was going immediately back to sleep. I am grateful that he is nearly 16 and can help look after the girls while we are at the hospital this morning. Such a blessing!
It was already hot and very humid as I pushed Brent the five blocks to Sloan Kettering. Dan, coming from a hotel, would meet us there.
First thing this morning, we bumped into our pre-op nurse in the hallway, who remembered Brent from his first surgery, and even came up with his name after a year and a half. The nurses here are amazing, if I have neglected to mention it. The oncology nurses at Rainbow Babies and Children's Hospitals are pretty awesome too, but we have not really seen them lately. This is another blessing to count, duly noted.
We have come to the point that even here at MSKCC, we are considered veterans. They approach us a bit differently, much in the way that you are treated differently when having your second child. You will certainly have questions, but every last detail does not need to be explained. We are not the nervous first time parents. Brent is not the nervous first time surgical patient. While we would prefer not to be doing this, at least we are familiar with the process, which is at least a known quantity among so many unknowns.
I was interrupted here by a woman who struck up a friendly conversation with me. (A few weeks ago, Brent pointed out that this happens all of the time, strangers speaking to me out of the blue..and I have begun to notice that he was right) She is alone, waiting for her step father to be done with surgery. She is anxious, I think, in a way that we are not. (I would return to the part of my mantra that says that we do not have any cancer to deal with right now, and we have comfort in the familiar process) But cancer makes everyone here family in a way, and this 'cousin,' if you will, needed reassurance, or maybe just someone with whom to share her hopes and fears, as we all do at such times. Her step father happens to be part of a clinical study, and she shared with Dan and me, the promising ideas that are being explored here. It is exciting to learn about the things that they are able to do and are learning to do.
We were called in to see Dr. Healey, who had good things to report. I had shockingly few questions, thinking back on it. We talked about the distant future for Brent. There were not, I noticed, very many responses of "we will see," an oft given answer which had been the source of much frustration for me over the past year and a half as I tried to peer into the future and sort out the plan. So many things had hinged upon the success of the very next step, that trying to see the likely eventuality and the road between here and there was futile. There were too many variables, .
I have finally become comfortable being very, very present, which might have been the point of this exercise, if I were to be so bold and speculate on one of God's purposes. And so now, we have begun looking far ahead, lest I become too comfortable. Yes, I believe that God also has a sense of humor.
In the PACU, we were visited by nurses of surgeries gone by, which was nice. Brent woke to declare from a narcotic haze that "This is going to be the best admission ever!" evidenced by the fact that he only had one IV that was soon pulled in recovery, and no catheter. What more could a 13 year old wish for?
We found out, when we eventually made it to the floor and he scored a single room...and furthermore, learned that age restrictions that would have made it difficult to get Olivia (at 5) in for a visit, have been lifted. It doesn't get better than this. Brent is right, this is going to be the best admission ever.
And, I am hoping, the last.
Sunday, July 7, 2013
Wedged in the middle
Yesterday was a big day for us Ramers. Brent completed chemo one year ago, which is
one tick of the cancer clock. There was
no cake. We didn’t celebrate, unless you
consider playing a game of Catan as a family a celebration (I kind of do). It was, however, something that I was aware
of, one of those dates that stick in your head.
It is one of the days that seem to matter. We have rather a lot of those days and dates
those that give me pause. Some people
call them “cancerversaries.” Diagnosis,
end of treatment, surgical removal of a tumor…they are important steps in the
process. But there is some controversy, according to some, in
marking them, in celebrating. Should we?
I think that on the one hand, it is important to see how far
we have come, and to reflect. Has the
last year been easy? Not remotely. Brent had physical therapy. He has already had 3 surgeries with another one
scheduled in less than 2 weeks. He faced
the strong suspicion of his cancers return and the possibility of losing his
leg…again. He missed 62 days of
school. So, no, I would not characterize
it as easy.But was it easier than the year before? Most certainly. The previous year Brent missed all but nine days or so of school, spent more days at the hospital than at home, had 4 surgeries, countless scans, procedures and the horrible beast that we call chemo to wrestle, as he did simultaneous battle with cancer itself. And as a family, we had that small matter of Lauren’s brain tumor to contend with. So, I will enthusiastically go with our vastly improved, cancer free trend of the past 365 days.
In short, we have come a long way, and are most grateful to be
cancer free: Brent for one year and
Lauren for 18 months. I am grateful, and would celebrate the milestone in my mind. But I do not want to live 'there,' tied to our difficult past.
Today, we celebrated the baptism of my nephew, and enjoyed brunch
with extended family. We had a quiet
afternoon, reading outdoors after a nap (And we sit here laughing at Alex as he
sings over the roar of the lawn mower… who is laughing at himself, now that he
is caught). It is summertime, and we are
together which I consider a blessing on the sheer face of it. The nice weather today, the opportunity to be
outdoors and to have a bonfire is an extra bonus. I
swear that I don’t need much. A nap is always a good start these days, because I am so tired.
Tomorrow is a new day. I understand that they all are. But Lauren has scans, so it threatens to be another day or date that will matter, worthy of remembering. It is potentially wedged between the denouement of the past year and a half, and the beginning of a fresh nightmare. This is the anxiety, the reality that we must manage. And for the most part we have.
I should point out that “we” means Dan and me. I do not notice any concern in the kids at
all. They are kids, and this has become
normal, these ‘field trips’ to Rainbow Babies and Children’s Hospital, our
upcoming ‘vacation’ in the Big Apple.
This may not be the way that I grew up, but it is normal to
them. So I try to adopt their attitude
and pray that it remains simple and that our future holds many more
opportunities for Olivia to squeal with delight over a package of
marshmallows. It doesn’t get better than
that. And this is the day I currently
have, one that calls for pointers on the proper toasting of a marshmallow.
I am going to get to that important life lesson...right now.
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