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.

Friday, December 6, 2013

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:

The Mallory family accepts help here:

And finally, donations may be sent to help Jacob Tholl's family here: