Saturday, November 23, 2013

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:

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.

Wednesday, November 13, 2013

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.

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?'


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.  

Monday, November 11, 2013

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.

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:

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.