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.

A moment of Thanks and the spirit of Giving

This is the week when the seasons blend a bit, a concept best illustrated by the still life in front of my neighbors house:  A giant pumpkin covered in snow.  This same snow will hopefully hide the fact that we have been derelict in gathering up our leaves.  Ehh, those leaves will still be patiently waiting for us in March… or May, depending upon the weather and our ability to get to it.

So, Thanksgiving was a week ago.  It is probably my favorite holiday in its simplicity and pureness.  You get together with your family, you count your blessings, you eat a really nice meal with people that you love and watch a comedy together, or maybe a bit of football. Perfect and complete!  I received an email from an old friend who wondered what our Thanksgiving answers would be to the age old question "What are you grateful for?"  More to the point, what am I not grateful for these days? 

My children show No Evidence of Disease, which is something that I will never, ever take for granted, with the understanding that we will always live in three month periods of grace.  But even better than simply dancing with NED,  Brent is making strides in PT, becoming stronger and more balanced.  I am trying to do the same, both literally and figuratively. 

We have had the good fortune to have met some incredible people over the past two and a half years.  I am obviously very grateful for the medical professionals that have helped us on this journey… they are far too numerous to count. 

But outside of the medical setting,  we have met others who have used their time and talents to help make it possible for us to get to this point, or certainly make it a bit easier.  For example, pilots from Angel Flight have frequently flown us to New York.  This gift of time and resources has made it possible for Dan to conserve his sick time, saving it for chemo and our various surgeries, while Brent and I traveled to NYC for follow up appointments. This generosity and kindness has mattered a great deal to our family and will never be forgotten.

We have benefitted from other charitable organizations.  I cannot adequately express how humbling, and touching it is to have complete strangers extend such courtesy and caring to my children.  At Ronald McDonald House, which offers discounted housing near to the hospital, volunteers will play games with the kids. Some companies sponsor dinners, and their employees will come in and prepare meals for the families who spend long hours in the hospital. 
 

The Make a Wish program provided welcome distraction for Brent while on bed rest, as he fantasized about what he might wish for.  When he anticipated another long stint in a NYC hospital, he used his wish to open up his world virtually, with a laptop computer.  Absolutely everyone involved in Lauren's wish trip was incredibly kind and created an opportunity for her that we could never have, which brings tears just thinking about it.   All of this was possible with the donation of airline miles, of volunteers time, and of financial contributions by companies and individuals, none of whom know us personally.  Amazing.

Kick It and Flashes of Hope help us in a larger sense, as potential beneficiaries of research that these organizations help to provide. But in a more direct way, our children feel empowered through these charities, by helping to raise awareness, as well as much needed research dollars. 

The stylists and the photographers that volunteer with Flashes of Hope donate their time at the hospital and have an enormous impact.  They help children to feel special and capture moments of beauty, tenderness and love.  While the photos are black and white, the experience is a bold splash of color in what can be an otherwise grey hospital existence.  It is a remarkable thing that they do, and it makes a difference for children with cancer on multiple levels. We were once again touched by people who we did not know, directly helping our family

I have met scientists who dedicate their efforts to understanding cancer and genetics.  I am grateful for their curiosity and for the dogged determination that such investigation requires. Research is methodical and thus, very slow to bear fruit.  The patience required would likely disqualify me from such pursuit.

On a more personal level, our friends have been exceptionally understanding of how flaky we can be.  I have made plans, and abruptly cancelled more times than I can say.  We have failed to attend weddings and other important events for people that matter a great deal to us.  It is a journey of long suffering, and patience, being a friend to the Ramers  And we have been blessed with some amazing, long suffering friendships.

I count all of these blessings like a bountiful treasure, reminding myself of how fortunate we are.  This week, I have also had several reminders of how difficult life can be.

A faraway mutant friend messaged me as she travelled to a military hospital in Hawaii.  Her daughter, married to a serviceman, was diagnosed with breast cancer and was having a double mastectomy this week.  Her other daughter recently had two brain surgeries and she travels back to the mainland next week to manage the chemo and radiation schedule that they are still devising for her. A third LFS positive daughter, had cancer while pregnant, as did the baby. It reads like fiction, but this is LFS reality. My heart goes out to Joann Million, as nothing about what she is doing is easy. 

I thought about what I might do to be helpful. I actually have a dear friend in Hawaii that knows Tripler Hospital all too well.  However, this is because Jen is currently getting treatment there for metastatic breast cancer and is hardly in a position to help.  The Mallory's have four beautiful mutant children, which can only be a constant worry and scheduling nightmare, medical and otherwise, but a blessing nonetheless.  I very much would like to be in Hawaii, and not because it is paradise, as I teasingly refer to it. 

I learned of the passing of Jacob Tholl, a father of 5, after a 19 day struggle following an electrical accident at work. My heart is heavy as I think about how this family's holidays are so different than what they had anticipated. 

My friend lost her father after a long battle with Alzheimer's this week. While the holidays are supposed to be joyful, they can be difficult as well. My prayers are with all of these people this holiday season, the juxtaposition of struggle in its various forms against the backdrop of Christmas and tinsel.  It is hard sometimes. 

I finally managed to work out the scans for the kids.  We do not intend to spend time with doctors until January 6th. I am trying to relax, and to enjoy our Christmas without an immediate concern about cancer or major surgery hovering over it.  For the past two years, that worry hung out with the angel atop the tree, also gazing down on us, but with a far less benevolent look.  It is hard to shake that feeling that a shoe might drop, having experienced a tornado in a shoe factory. 
 

 

As I saw someone cynically point out, only in America do we gather around the table in November to express thanks for all that we have, and exactly 24 hours later learn that some people have been trampled to death in an effort to get more.  Makes you shake your head.

But also in America, the spirit of thanks bleeds into the spirit of giving.  And while everyone speaks a different love language, I believe that this time of year gives witness to a conversation that is dominated by love.

When we offer the gift of our talent, like the little drummer boy, wonderful, beautiful things begin to happen. Everyone has a talent, some sort of gift to offer: the hairdressers at the hospital, photographers, pilots, those skilled at cooking or baking, something as simple as taking the time to read to a child, or to visit with a veteran, singing in the streets if you have such inclination...the spirit of giving does not need to be commercially driven, and does not, most thankfully require money. 

It is giving of yourself. 

Once you reflect upon your blessings, think about how you might turn and transform these gifts, in order to help others.  It might be financial, it might be a service, it might be kind words. Because it is not what we have in this life that is important, but what we do with what we have been given.  I feel like we Ramers have been given so much.

I met with a hospital administrator this week who said to me, "As much as we accomplish, I learn how much more we need to do for our patients."  Rather than being overwhelmed by this notion, he was inspired.  I seek to follow this example, and to do as much as I can, with what we have been given.

And to do it joyfully, compassionately and wrapped up in love.



Should you want to help the Million family that I mentioned above with travel and medical expenses, there is a link below:  

https://www.giveforward.com/fundraiser/yf23/help-the-million-s-fight-li-fraymeni-syndrome?fb_ref=1364692&fb_source=message

The Mallory family accepts help here: http://helpinghandsforthemallorys.blogspot.com/

And finally, donations may be sent to help Jacob Tholl's family here:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=PQFK3TDSBSN4S

 

Big Shots and Little Stars

We were honored to participate in a terrific event on Tuesday.  Flashes of Hope held their annual “Big Shots and Little Stars” show with support of the Cleveland Cavaliers and Lake Erie Monsters at the Quicken Loan Arena.  The theme was James Bond and there were over 1400 people at the event which benefited Flashes of Hope and the Children’s Tumor Foundation.

Allison Clarke, who founded both Flashes of Hope and Kick It, feels passionately about pediatric cancer.  Her son Quinn, was diagnosed with rhabdomyosarcoma at age 2.  Like Brent, Quinn has had a tough road.  He also, incidentally, is missing half of his pelvis. 

Allison, who learned of our troubles through mutual friends, reached out to us early in Brent’s diagnosis, relating in a very personal way to what our journey was like.  She took plenty of time on the phone to provide a sympathetic ear to me when I had few around me who could really appreciate the challenges that we have faced.  Later, she contacted doctors that she knew, as we looked for better surgical options for Brent.  I will always be grateful for her efforts and for her kindness.

The circumstances that might cause some people live in anger have served as Allison’s motivation.  She has turned something truly horrible into something that will make a difference for others. When Quinn was recovering from pelvic surgery over 10 years ago, his roommate, a two year old, succumbed to his disease.  Quinn, then only four years old, expressed how sad he was to lose his friend and regretted that there were no photos of him.

That moment, that singular comment from her son, was a seed of inspiration planted in her mind.  Allison went on to form the non-profit Flashes of Hope.  The mission of this charity is twofold:  To photograph every child with cancer until every child is cured.  Professional photographers, hairstylists and makeup artists volunteer their time and talent, going to hospitals, cancer clinics and oncology camps.  Children, many in the midst of treatment, are offered the opportunity to have beautiful photos taken with siblings, or parents or even sometimes, a beloved doctor or nurse.  

This is an amazingly beautiful gift. While a photo with your child, particularly during the uncertainly of treatment is meaningful, harrowed parents are not likely to have the time, the energy, or the thought, to go to a photographer during their “off time.”  In the hospital, particularly, it is a blessing to have these kind people come and capture moments of tenderness, of joy, of love.

I learned at Tuesday’s event that the beautiful black and white photos have been processed and printed at White House Custom Colour in Minneapolis.  CEO Mike Hanline refused the request to discount the cost of the photos, insisting instead upon donating every proof and enlargement.  As Flashes of Hope has grown, now photographing 7,000 children per year, this gentleman donates over 150,000 beautiful prints annually.  Stunning.

I am brought to tears thinking about the gift that these folks bring to families in the midst of great struggle.  The photos can serve as a reminder of how difficult the journey has been and can be a celebration of what a child has overcome.  Or sadly, they might be the last photos that a family has of their child, capturing a moment filled with dignity and love, in the midst of battle. 

This first part of Flashes of Hope’s mission, which is active in over 55 cities, taps into the time and talent of many generous people to positively impact families in a direct way.  This is a worthy cause, all on its own.  But the second part of the mission is to support pediatric cancer research. 

Tuesday’s event took my breath away.  Through the support of Dan Gilbert, owner of the Cavs, and over 1,400 Clevelanders, $950,000 was raised for pediatric cancer research.  I was really struck by something that I read in the program: 

“We had no business getting a meeting with Dan Gilbert in 2009.  With just three paid staff members, we held the “Big Shots and Little Stars” runway event in a mall.  We asked Dan if the Cavs players could participate in the show, which we hoped could be held at the arena. To our amazement, he said yes.  He helped take the event to the next level and the level after that!”

 

Lauren, Dan Gilbert, Alex and Brent

I am astonished at the generosity of strangers and the ability that some like Allison have, to harness that generosity in order to accomplish great things.  I am inspired by how boldly she asked, and how enthusiastic the support has been, both of particular individuals, as well as the community at large.  The advances in understanding and eventually conquering pediatric cancer cannot come too soon.  With this kind of support, research can move forward faster. I am so grateful for it all.

Part of why I have been talking about this organization is because Allison called me while we were in NYC over the summer and asked if we would be willing to share our story at the event.  We agreed, happy to help this organization in any way that we could. They interviewed us a couple of months ago and put together a video which they showed at the event:

http://vimeo.com/80040863

It was an honor to be associated with an organization whose goals are so worthy, and who partners with the Children’s Oncology Group, Alex’s Lemonade Stand, The Children’s Tumor Foundation, Jeff Gordon Children’s Foundation, and Bear Necessities Pediatric Cancer Foundation.  It was a wonderful evening for our family.  Should you be interested in donating time, talent, or money to Flashes of Hope, I have included the link to their website below.

http://flashesofhope.org/about/mission

Civil War

My friend had posted a blog, whose point was that some people object to the use of war terms in describing cancer, for a variety of reasons. 

 http://www.thecancerian.org/2013/08/05/should-we-use-the-war-on-cancer-as-a-metaphor/#more-344

I had tried to respond to this some time ago, but lost the technological war going on with my Internet on that particular day. In honor of Sherman's march to the Sea, which began 149 years ago this week, I thought that I would post this today.

So, I think that if you were to consider cancer in warlike terms, I believe that it would be best compared to our own civil war, rather than a traditional war of invasion.  This was alluded to above in the arguments against using the war metaphor, but I think embracing these parameters, it really does work.  We need to bring under control elements of our own cellular population that are not functioning according to the rules.  Cancer runs rebel.

Also, the traditional therapies, or weapons, are not so discriminating, affecting healthy tissue and cancer cells alike. We all know that the theory behind chemotherapy lies in the hope that the poison selected will kill the cancer cells faster than it kills the patient.  Thus, cancer is the ultimate war of attrition, not unlike our own civil war, where the north concluded that it had a significantly larger population, and thus could outlast the Confederate south.  Horrible, horrific bit of calculus working there.

I think, either because we have been blessed with a short memory, or cursed with horrible sense of history in this country, most do not have a decent understanding of the nature of the conflict that ended nearly 150 years ago. There were more American deaths in that war than all other conflicts combined. The total number of American casualties during those four years, civilian  military alike, were mind numbing.  When you consider the number of casualties relative to our much smaller total population at the time, it was even more appalling.

Cancer, within the human body, carries a similar burden.  Pediatric cancer, even more so.

Cancer also shares uncertainty with regard to outcome.  There were absolutely no guarantees that the North would win.  We assume the Union victory from our current perspective, but it was no sure thing. If it were, Lincoln would have had fewer sleepless nights, hanging out with the telegraph operators, waiting for news from the battlefield.  I am thinking that if the cancer outcome were certain, I would have slept better as well, rather than pacing the halls of the pediatric oncology floor, or crawling out of my own skin waiting for scan results.

There comes a point in a war of attrition, that the damage to a large portion of the population, or the utter destruction of a region is deemed necessary for ultimate survival.  Doctors weigh the costs and benefits differently at the beginning of the cancer war, than they do toward the end. I believe that Lincoln did as well.

What I look to with hope, oddly enough, were the "advances" in adopting total warfare toward the end of the Civil War, specifically, Sherman's "march to the sea." This was a 50 mile wide swath of destruction in the 300 miles between Atlanta and Savannah.  Sherman and his army either used or destroyed every scrap of infrastructure, crops, and private property, leaving nothing that could conceivably be used by the south to wage war.  It was ruthless.  Sherman famously said that he would make Georgia "howl," and howl they did.  I suspect that there are no elementary schools named for this guy south of the Mason Dixon line.

However, the starving and demoralizing of the south in this manner in late 1864 was pivotal to the eventual success of the north, and ending of the war in April of 1865. I think such measures would not have been considered in 1862, when there remained hope that such collateral damage could be avoided.

Against cancer, there are drugs already available that essentially do this same thing, starving tumors, denying them the ability to thrive, to grow, to spread, the most commonly known among them being Taxol.  If cancer is a war, this is a good first step to ending it, and to winning.  

Today's smart bombs, aimed at particular sites are like targeted therapies whereby cancer cells are dosed with a poison payload that does no harm to healthy tissue...even better.  They are currently used and more are being developed.  I am encouraged.

But back in 1864, the Savannah campaign began on November 15, when William Tecumseh Sherman, having burned Atlanta, boldly (some say wantonly) abandoned his supply lines, heading for parts unknown even to his own army, except for a select few.  Sherman had no communication lines either, advising Lincoln that the southern newspapers would tell of his progress. 

For nearly 6 weeks, Sherman put his army of 60,000 on the line, unable to call for supplies, or more troops to support them.  They needed to forage for food in order to survive, and as such, they needed to continue to move, as they stripped the land of everything usable, like a swarm of locusts.  Sherman called this "hard war."  

Cancer treatment is certainly "hard war," and sometimes, like Lincoln, we have to wait for weeks in silence, as we send forth a new army in boldness, or desperation.  We wait to discover what the consequences are, and the degree of the success of the campaign.

We are forced to wait, as Lincoln did.  

Impatiently, anxiously, waiting for news.


Wondering all the while, 'Did it work?'

Waiting...

Finally, on December 25, 1865, "Uncle Billy" as he was affectionately referred to by his troops, resumed communications and sent a telegram to Lincoln stating, "I beg to present you as a Christmas gift the City of Savannah, with one hundred and fifty guns and plenty of ammunition, also about twenty-five thousand bales of cotton."  

It was with great relief that Lincoln learned of this success, which had remained in great doubt. From this, he was able to bring about the eventual end to the long and bloody war, with a Union victory. 

But, there were huge costs, especially to the areas in the south.  There was an enormous effort during reconstruction to make our country whole, and the scars, though faded, remain.  

Some hear echoes of Dixie in residual racism all these years later, which naturally causes concern, and fear.  Is it coming back?  

Scars, rebuilding, collateral damage, fear, uncertainty...

Yes, I thinks the analogy holds.  

Our current 'needs': cheap therapy, clean socks and a cryogenic freezer.

I haven’t been writing much.

Perhaps I should rephrase that.  I have been writing a whole bunch, but I haven’t been writing for me…  writing as therapy, which is what this really is, in case you haven’t figured it out yet.  I write to sort my thoughts, to direct my actions, to ground me, to explain to others what this crazy cancer journey is like, and, in all hopes, to help others who find themselves in similar straits.  Mostly, though, if I get thoughts out of my head and put them down in words…well, I can better manage it all.

This is not to say that I am ‘not managing’, exactly, but I do have a whole lot swimming about in my noggin these days.  I have a whole lot on my ‘to do’ list. And I have a whole lot more that I want to add to it, which even I can recognize, would be pretty foolish and hugely unproductive at this point. 

I have been reading.  I have been meeting with researchers.  I am excited by the things that I am learning.  I am astounded at what they have figured out and hopeful about what we do not yet know, but might soon discover.  The rapid exchange of information and the exponential increase in the rate of learning are most encouraging to me.   We have long established that patience is not my strongest suit, so this is all a very good thing. 

I have long been dreaming of having a cryogenic freezer in my basement, in case you are looking for Christmas gift ideas.  Hunting down tumor and tissue samples, beating institutional bureaucracy and sending these samples to researchers are all pretty time consuming.  If I had our various tumors and tissues stored right here in the convenience of my own basement, I am thinking that I could just call Fed Ex and be done with it.   Yes, the fantasies run a bit different these days.  And the Ramers are something of a freak show.

I have also been sorting through some domestic things, most of which is not nearly as interesting as what is coming out of the scientific community, but hugely necessary, in a ‘we need clean socks’ sort of way.  I really am grateful for the opportunity to devote my time in such a manner.  The luxury of waking up in my own bed, with all of my children sleeping down the hall is not something that I take for granted.  Also, we have really enjoyed doing some things together as a family, realigning and reconnecting.

Clean socks, well, we shouldn’t take those for granted in this house either.

In many ways, I am still trying to ‘get it together,’ and it is already mid-November.   As I look at it, it is probably too late to get on top of some things, but still far too early to scrap it all and say “Next school year…”  I might not be putting out large medical fires (most gratefully!) but I can pretty much guarantee that I will still be taken by surprise for parent teacher conferences or some other school function that I probably should already know about.   Never mind about the various forms and deadlines, which I will openly admit that am appalling bad about.  In this regard, I am still trying to catch up.  I am most fortunate to have lovely friends who remind (read: inform) me of essential meetings.  It does take a village, apparently. 

Because, I have just been buried.  I am happy to report about our trip to MSKCC earlier this week particularly because New York had good things to offer:  Brent starts physical therapy on Thursday.  May we remain on this path of healing and strengthening.  It has certainly been a long time in coming.  Glory Be!

Whenever I get overwhelmed, I go back to making lists, and crossing things off.  This week, my medical list got pared down from ridiculous to somewhat reasonable, by Ramer standards.  So, now I can focus on the business of trying to run a household with four children in it.  That list is now ridiculous, and, as I have stated, I don’t even know everything that should be on it.  Maybe I will just start with groceries and bedtime stories.

And clean socks.

Boring is beautiful, and not just on scan days.  But, if I had to pick, I would take 'boring' on scan days, every single time. The rest is easy.  Or at least a hell of a lot easier.  And recognizing that fact, the focus on it, this will get me through.

 

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.

Knowing: The burdens and the blessings

Knowledge is power.  Knowledge is responsibility.  Knowledge is a call to action, to vigilance.  No wonder they say ignorance is bliss.  (Ha!)

On my LFS support page this morning, someone wrote about how they can now test embryos and using IVF, select for implantation only those that are mutation free at p53.  There are those who have successfully carried a mutation-free child.

I knew that this could be done because my geneticist told me about it when we learned that Brent had Li-Fraumeni Syndrome.  They also shared the new Toronto Protocol with us, which is a screening protocol to find cancer early.  The folks at University Hospitals, I think, were piling on the latest options and improvements to mitigate an otherwise devastating condition.  The lion’s share of research up until this point has focused on “How do you feel, now that you know?” and the psychological ramifications of living with this knowledge of a faulty tumor suppressor gene.  The failure of this gene often results in multiple episodes of cancer, sometimes simultaneously.   

I will not pretend that this is easy, either the knowledge or the attendant worry that comes with it.  As I have shared, a series of headaches in my 11year old begins with ‘rule out brain tumor.’  That is a tough way to live, but far better than sitting back and waiting.  Because after 3 episodes of pediatric cancer, we were going to worry anyway.  At least with the knowledge, we can take action and find things early.

Similarly, there is power in taking action, of being able to choose only healthy embryos, in being able to eradicate this mutation in the future.  Who wouldn’t want a healthy child?  This is a no brainer.  But as I considered this some time ago, about how I would explain this option to my children when the time is appropriate, I realized the ethical and existential morass that this would be.  Because this decision, in a way, denies the validity of my children’s lives.  If I present this option, it is implied that I would not (or might not) have chosen to have them if I had known.

It is kind of loaded.  Because we didn’t know. 

This would be prime time for calling in some of those psychological researchers and positing the question.  “Well, how do you feel, now that you know?”  What I do know is that there are many ways to form a family.  I will consider it an enormous blessing for my kids to have the opportunity as adults, to wrestle with exactly how they would like to accomplish this.  I will be very grateful for this particular problem.

 

Yesterday, there was a news release out of Memorial Sloan-Kettering, a hospital that we know well.  They were reporting advances in targeted cancer therapies, ones that use our own harvested T cells, which are infected with a virus and programmed to attack a particular tumor cell.  This is accomplished by looking at the genetic profile of the tumor.  And sometimes, by doing this, they stumble upon information that they weren’t looking for, like a BRCA mutation or LFS in the patient.  There are ethical conundrums that come with this data. Are researchers ethically obligated to share this information with the patient, which can have clinical implications?  Does the patient want to know?  Should they know?  Should you even pose the question to the patient, which all by itself opens a Pandora’s Box of worries? 

There are families with LFS that are torn apart, not just by cancer, which is difficult enough, but by the decision to seek genetic answers.  Because this is a family syndrome, even establishing the diagnosis for yourself has implications for everyone else who shares your bloodline.  So, in some families, having a p53 mutation established poses the question for other family members and by extension, their children.  For those who do not want to know, it can become an issue.  And they no longer bring the green bean casserole to Thanksgiving, let’s just say.

I am an avid proponent of research.  I celebrate advances in all areas of cancer, which you might contend is hugely self interested, given the likelihood of us dealing with more cancer.  I am no position to deny the charge.  But even with a dog in the fight, I recognize that scientific advances sometimes come faster than we can wrap our head around them.  This is ironic, because research seems to go slowly when you participate in it…or if you are waiting for a particular advance in a timely way.

I think of my friends, those with LFS, each fighting in their own way.  Battling the worry.  Being grateful for the worry, when it turns out to not be cancer.  Battling the cancer when it comes.  Or, when it comes back.  The fight is mental as well as physical.  It is all grueling, and it never ends.  But through this devastating and demoralizing disease, because of it actually, I have come to know some amazing people.  While I would much prefer that we had met at PSO function, this is the hand that we have been dealt and these are the people that have been placed in my path, on this path.

I am going on Thursday to meet some of these wonderful people in Boston.  The researchers.  The mutants.  I want to learn what advances are coming and how they might help my children.  All of our children, because we have become one big mutant family, bloodline be damned.  The blessings cannot come without the challenges….my new extended family is the blessing.  The challenges still suck.

We are fortunate that the Ramers are not waiting for ‘a particular advance in a timely way,’ nor are our children forced to wrestle with existential quagmires. 

Not today at least. 

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.

 

Relapse

It has been a rough couple of weeks.  

The Ramers have been terrific.  Brent has perfect attendance at school.  We have been getting our lives back on track.  I might even get to see the inside of the kids school rather than the inside of their various hospitals.  It has been great.

We enjoyed a fantastic day on Sunday via Flashes of Hope, sponsored by the Browns in honor of pediatric cancer awareness month.  Dan and the kids got to go down on the field as the teams warmed up.  We watched the game with two other families from the corporate suite.  The Browns won.  The weather was perfect.  We parked under the stadium with the players.  Fabulous day.

But for me, there was something of a shadow lurking over this all, because in LFS land, it has been positively raining relapse.  A friend who messaged me frequently about her osteo relapse options, went into hospice.  Others have been struggling with their second and third cancers.  And most devastatingly, a dear mutant friend announced that they found mets in her lungs and bones.  Perhaps sarcoma, but likely breast cancer.  There has been some swearing in my head.  I have vile things to say about cancer.

And, amongst all of this, Lauren has been getting headaches. They started out fairly sporadic.  They happened only at school.  But there has been a definite uptick in the frequency and the intensity of them. Dan and I were not thrilled about this.  We were nearing on scans, and were thinking between us that the brain MRI in two weeks couldn't come soon enough.  

As Lauren had more headaches over the weekend, I made plans to email her oncologist.  But first thing Monday morning, my phone rang.  The local Make a Wish chapter had a possible opportunity for Lauren, which felt both exciting and ominous.  While I had hoped to move her MRI up for my own peace of mind, now I really needed to, for this wish opportunity.  I emailed her team, advising them of her new and concerning symptom.   They forwarded it on to neuro oncology. 

When she came home after school on Monday in tears over a headache, I put her to bed, and called oncology. Phone calls back and forth...and by the end of the day, she was scheduled for an MRI first thing Tuesday morning. 

So, I checked Lauren several times overnight, but she slept soundly.  Lets just say, I did not.  Tossing and turning.  At 2am, I woke to discover a recent email from my geneticist.  My friend had also emailed.  I had too many thoughts swirling in my head. I couldn't sleep, but I couldn't do much else either.

We battled morning rush hour traffic to a satellite of University Hospitals. Lauren was great.  I was just simply jumping thought the next hoop, grimly, because we had to know what we were dealing with. We checked in at radiology and began to wait.  

Make a Wish called while we sat there to confirm the dates for her wish.  I knew that we would do her wish regardless of the scan results, and am grateful for the opportunity.  But it would feel very different, if we were traveling with the carry on baggage of another brain tumor, and a return trip to oncology on the itinerary.  

Lauren changed into a gown, and I was allowed with her in the back, to watch her scan.  The tech stopped the MRI to stick her and give her IV contrast, then put her back in the tube. He was a one man show in this small outfit. I resumed my waiting, trying not to think ugly thoughts.  Make a Wish called again to confirm more details.  I wanted to throw up, completely distracted by the fact that they were making images of my daughters brain, and how that information would determine the course of our lives.

I shared the details of Lauren's wish with the tech, in an effort to distract myself from awful thoughts.  I imagined how excited she will be to hear this news, having been patient so long.  He wished her well, and finally went in to pull Lauren out of the tube.  She quickly changed back into her clothes and we left.  

Before we could even get on to the highway, my phone rang, a number I recognized from the hospital. Dr. Sterns, the neuro oncologist said that he was looking over the scans, and that they appeared unchanged from her last ones.  I think that he must have been looking at them live from UH Main Campus during her scan.  I am so grateful for technology.  I am grateful for the clean scan.  I am grateful for the phone call.

I could breathe.

Lauren texted Dan to inform him of the good news while I was driving: "Hi daddy, its Lauren.  Just wanted to tell you that there is nothing wrong with my totally awesome cancer-free brain." We had breakfast together, at what she now calls our 'good news restaurant,'  and I took her home to get some rest.  I headed out to the main hospital for my own appointments and errands, now very happy with my day.

The very first person I lay eyes on upon arriving at UH was Lauren's neurosurgeon.  I swear, if I didn't already know her MRI was clean, I would have thrown up all over him.  Instead, I giggle to myself and text Dan about it.  These things feel so different without the uncertainty. 

I know, in my head, that cancer isn't contagious.  But the series of sad and troubling announcements from my friends had the universal effect of sending everyone in LFS world scurrying to "get their shit checked out," forgive my language.  Because, while we might laugh inappropriately at cancer, at oncology, and the horrible things we are required to do, we all have a very healthy respect for LFS (Ha! Isn't that an ironic turn of phrase?) and the potential for cancer. Neither LFS, nor cancer, is anything to mess with.

The relapse storm just serves as a reminder.  An alarm bell to anyone who might be tempted into complacency, which we all are. Everyone is busy with life, and everyone with LFS wearies of time in hospital. Furthermore, even for us, there are normal things, not just cancer.  It is just hard to know what to worry about.  

A great deal of the research to date with LFS centers on the psychological implications of knowing your status, what I refer to with much irritation as the "how do you feel, know that you know?" research.  It is a balance, having due diligence, and living.  With LFS, we start with 'rule out brain cancer' and work our way back to  'adolescent onset migraines.'  We have to, given our genetic circumstances. 

And we high five migraines in this house.

So at the end of my long day at the hospital, I returned home, and Dan and I gathered together the kids to talk as a family.  Our talk is different than other talks that we have had.  The talk that I worried about having.  A talk that my friend was having with her four beautiful children.  We celebrate migraines in this house, as cancer averted.  And we get back to the business of living, and embracing the blessings that each day offers us.

And we shared that Lauren has been granted her wish. Hollywood is going to Hollywood.  She and her totally awesome cancer free brain are going to be in a movie.

We leave in a week.