Thursday October 23, 2014

Dan and I awoke yesterday in two different beds in two different cities, each having a version of the same dream.  Shannon playing hockey.  Dan could see her smiling through her facemask as he skated over to her on the bench.  She was in her happy place.

My dream was a memory of the last game Shannon played.  The Rebels were playing at Waseca just days before we were leaving for Memphis to head to St. Jude.  Shannon scored her only goal of that season spent playing with a brain tumor.  Late in the game, fatigued and probably feeling the effects on her balance, Shannon got run over by the biggest girl on the ice.  She got up smiling and after the game, her revisionist history turned the story into how she took the other girl down...

It's no surprise that these memories of Shannon are with us this week.  On Monday, Dan and I returned to Graham Arena for our first visit of the season.  The HS Girls Hockey season is beginning, and we are making the rounds, talking to each team about the foundation and handing out scholarship applications to this year's senior class.

We stopped to take a look at Shannon's display case.  Her jersey, her favorite stocking cap, those very skates she was wearing that night in Waseca.  We looked at the team picture of those Rebels, and then saw many of them sitting before us, now ready to play high school hockey.  Damn, they are growing up.  Over the next four years, every kid that played with Shannon will work their way through the high school programs.

So, we've talked to two girl's teams this week and will do a third next week as well.  After that, it will be the HS Boys turn.  It is important to have their support as we continue to work towards funding the scholarships in perpetuity.  We've got our first fundraising event set (Dec. 13th) and new Shannon gear is on the way.  (We're excited about the new hoodies that Erin helped design!)

So, we continue the work.  Hockey season is ahead.  It's good and hard and meaningful and painful.  Tears come to the surface with the pain of what Shannon never got the chance to do.  It's easy to feel the empty space where she should be when we are at the rink.  

Standing before these teams, our message is simple: we wish them luck and reminded them to enjoy every minute of it.  Work hard, be a good teammate, be a good friend.  In Shannon's world, they are living the dream.

Sunday October 19, 2014

We made the most of our weekend at home.  A couple of sleepovers, laundry, yard work, grocery shopping (why do I need to go to the grocery store EVERY SINGLE DAY??), and the best part of the weekend -  several hours spent watching volleyball.

Erin's season, which started back on August 11th, came to a close on Saturday.  A two day tournament meant Erin played 11 volleyball games over the course of 24 hours.  She estimated she set some 500 times over the weekend.  No wonder she's sore.

I was talking to another mom about crazy sports parents and misplaced priorities and all the anxiety we create for ourselves.  It's good to remember that it can just be fun.

We can just enjoy watching our kid - watching her try her hardest, watching her compete.  Sometimes she's a rockstar, sometimes she makes mistakes, sometimes they win, sometimes they lose... and we can remember it's all good.  We are lucky to be able to sit in the stands and watch our girl do something she loves.  That's the whole point.  In the grand scheme of things, that's what matters.

So here's my soapbox for today:  watch your kids play.  Don't yell at them.  Don't yell at other people's kids.  Just cheer for all of them and hug them afterwards, no matter what.  Life is short. Enjoy the moments.

Monday October 13, 2014

It is a rainy Monday night in SE Minnesota and I am sitting in the dark listening to Jackson Browne.  Before you have me committed, let me tell you I am feeling good about feeling sad.

I downloaded JB's 1974 release Late For the Sky from ITunes tonight.  I haven't listened to it in order like we used to in years.  It brings it all back for me.  I grew up the youngest of 9.  So my siblings music was my music.  Jackson Browne's The Pretender was one of my very first self-funded albums. There were always major skirmishes around the O'Hara home when a new scratch created a skip in the best song.

It is impossible to not be reflective about life when it is just you and your thoughts and the music.  For me, all song lyrics point to Shannon.  It is has been months since I have allowed myself some space to cry.

The instant-gratification, electronic input overload we inflict upon ourselves on a daily basis makes it incredibly difficult to create space to think, cry, meditate.  I need to do it more.  It feel so good to just slow down and spend some time with your thoughts.

I have been running like a crazy man chasing down business.  This week I believe I will spend every night in my own bed.  What a concept.  So instead of packing up this Monday night and making sure my work stuff is together for another business trip I am chilling in the dark listening to tunes.  (Completely bored by MNF Niners-Rams.)

So here it is; Shannon and Erin are everywhere in our lives and always will be.  Erin happens to be doing it in front of our eyes, Shannon lives only as a memory.

We are loving watching sweet Ms E grow up (a full-time gig in itself) - but impossibly empty/dark/pissed about the void in her life.  She should have a big sister to argue with about scratched albums.   We will have to live this way forever.  So that kind of sucks.  Not exactly "breaking news".  Acceptance comes in waves.

So, feeling a little sorry for myself tonight.  Always feels better to share your inner-most fears and sorrows.  They say sharing it cuts it in half.  I wonder if sharing it with a couple hundred bloggers cuts it even more.  I'm hoping so.

Time for bed.  One more pass through a favorite (All-time Top 5 for me) For a Dancer;

Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
Another's steps have grown
In the end there is one dance you'll do alone

Thursday October 9, 2014

The moon has been ever present these past few days.  Bright and full and visible in the morning and at night.  That full moon always leads us back to our last days with Shannon.  Those days when she was losing her battle, when we were making plans for how to celebrate her life and how to honor her wishes.

Shannon made it clear to us that she wanted to matter.  She wanted her life to make a difference while she was here, and after she was gone.  She told us so.  We went to St. Jude so she could be a part of the research.

In those last days of her life, as the moon grew full, we made plans to donate Shannon's tumor cells.  Just hours after she passed away, her tumor cells were harvested by Mayo Clinic pathology. Those cells were sent to Memphis, where they arrived at St. Jude just 24 hours after Shannon had passed away.   Dr. Wetmore was there to start the process of nurturing and growing these cells.  We didn't know where that would take us...

This week, it took us to a lab at the Mayo Clinic.  Upon Shannon's passing, a research group at Mayo Clinic decided to focus a part of their research on DIPG tumors.  Shannon's funeral had a profound effect on Dr. Richard Vile, a PhD in molecular medicine at Mayo, and his wife, Memy, who also works in research.  There's some cosmic karma at work here.  Dr. Vile and his family are acquaintances of mine through my years of teaching tennis.  The fact that they attended the funeral, and after that experience, decided to work on pediatric brain tumors is nothing short of amazing to us.

Dr. Vile's research is in experimental immunotherapies and vaccines to treat cancerous tumors.  They are looking for a systemic treatment option.  Dr. Vile requested and received some of Shannon's tumor cells from Dr. Wetmore at St. Jude.  Shannon's cells actually became a part of the research she inspired.

So, here we are, two years into their research, and the first paper has been published.  We wanted to hear all about it, so Dan Erin and I paid a visit to the research team this week to learn more.  We met the team, and we saw the lab.  They told us that Shannon's cells continue to grow and, in theory, should live on forever.  Live tumor cells are key to the research.  The results so far have been promising, and they are hoping for a $2 million grant to take this research to the next level.

The paper they published in the American Society of Gene and Cell Therapy is way over my head, but I asked Dr. Vile for a layman's explanation of what the research has shown so far.

Essentially, we have found that a tumor growing in the brain acquires an identity which is rather different to that which it has when it is removed from the local environment of the brain. Thus, when we look at brain cancer cells in the tissue culture dish, they express a different profile of proteins than that profile which is expressed in situ in the brain.

This is important (we think) because the profile of antigens that a tumor expresses in the brain is the critical one. It is this profile which forms the basis of therapy targets - such as drugs, immune therapies and so on. So, if therapies are designed based on the profile of proteins seen only when the tumor cells are studies in tissue culture, we may miss some important targets for drug development. 

In Shannon's paper, we have identified some proteins which are expressed on tumor cells only when growing in the brain, and not when the cells grow in culture. We have shown that the local brain cells (macrophages, monocytes) impose this pattern of protein expression on the tumor cells. Therefore, this manuscript raises a new therapeutic approach to target these new, brain expressed proteins on tumor cells - which otherwise would not be considered as drug targets. Finally, we show that by targeting these new proteins we could clear brain tumours from mice.

So, we believe that Shannon's cells are a critical tool here - in culture they show us a certain defensive look as it were; but when we grow them in the brain, they call an audible at the line of scrimmage, and show a very different look (I apologize that I do not know the equivalent hockey terminology). We need to understand and read the defensive shift and target that specific defense with novel therapies.

The one part of the paper I did understand was the acknowledgements.  "This work was inspired by and dedicated to Shannon O'Hara."   

Our visit to the lab gave us a chance to thank these scientists for the work they are doing, to humanize their efforts, to put a face on this painstaking, difficult work.  It was an emotional connection for all of us. Dr. Vile and the research team thanked us for precious gift from Shannon.

That full moon in the sky reminds us of the end, but it also reminds us she's still here in so many ways.  We do our best to carry on your legacy, sweet girl, just as you hoped we would.

Monday October 6, 2014

I'm going to have to fight back from a crappy start to my Monday:  sent out a newsletter with typos in it, sent my daughter off to school coughing like a chain smoker, and I'm looking at the to do list on my desk and feeling overwhelmed... One step at a time, right?  Just check one thing off, then go to the next.  Not my strong suit...

We braved the cold this weekend and participated in the Brains Together for a Cure walk.  It was wonderful to have family and friends come out to support us and remember Shannon.  Seeing her face in the display of those who have lost their battles and those who are still fighting brought me to tears.

It's hard to believe that three years ago she came to this event.  Some of those same people who celebrated with Shannon in 2011 came out to honor Shannon this past Saturday.  It was quite a crew:

We walked and talked and then came back to our house for some of Dan's homemade chili and talked some more.  It felt really good to have family close.  When things get going at hyper speed and it feels like Shannon is getting further away, it's nice to spend time with people who will never forget.

The only one missing was Erin.  She had other important things on her schedule - taking part in her first high school debate competition.  Erin and her partner, Anna, are hilarious together.  They couldn't be more opposite in appearance - Anna being 6 feet tall and blonde - but together they make one heck of a team when it comes to arguing!  They were pleased with their results, winning 3 of their 4 debates, and enjoyed the intense experience.  The only thing they didn't love was having to dress like old ladies (Erin's words):

So, one week ends and another one begins.  Exciting things are ahead this week.  Monday got off to a bad start, but it's not going to sink me.  Onward...

Friday October 3, 2014

Last night we watched Erin play volleyball against cross-town rival, John Marshall.  Grandma Harkins is here for a visit and got to see Erin play.  Grandma was a little sentimental about being back in the old JM Gymnasium - she spent many a night there watching me play basketball... about a hundred years ago.

The JM team was having Teacher Appreciation night.  Each girl on the varsity and JV had their favorite teacher by their side and said a few words about them.  A couple of my former classmates were there being honored, and one of my favorite teachers was there, too.  My 9th grade English teacher was being honored by one of her current students.  I got to say hello and we talked for a bit. She knew about Shannon and wanted to know more. 

I am happy to say the Mayo Spartans had a clean sweep last night.  That little 9th grader I once was could never imagine that she would grow up to root for the Mayo Spartans.  Having kids changes everything...

It is cold and windy here this morning as I write.  I am hoping the weather will take a turn for the better before tomorrow's Brains Together For A Cure walk.  We will be out there either way.  Grandma is here for the walk and we have brothers and sisters and cousins coming to walk with us, too.

Erin will not be with us this year.  She is getting a chance to be in a debate competition with the Mayo Debate team tomorrow.  We wish Miss E could be with us, but she's her own person now.  I am learning quickly that scheduling anything for a high schooler is a bad idea.  Inevitably, they have other plans. 

This week, I've been thinking back to that first Brains Together walk we did.  2011.  Shannon came directly from hockey tryouts to be a part of the event.  We were all wearing lime green shirts that said "Shannon the Cannon" on the front.  Shannon was honored and embarrassed all at the same time.  We were surrounded by so many family and friends who were watching Shannon battle so bravely.  We hoped we'd wear those every year and we hoped Shannon would be with us, still fighting.  

She's no longer here, but we are still fighting.  Still fighting to honor her.  Still fighting to raise money and raise awareness of the need for research.  Still fighting to keep her with us in spirit.    

I've had some lovely interactions with people this week.  People who have felt my angst in recent days, and offered an encouraging word.  The kindness of others continues to amaze me.  And buoy me.  It's ok that I don't have all the answers.  It's ok that I'm sad and conflicted.  The grief of losing a child doesn't end.  That's ok, too.  Feeling the pang of missing her is real and I like that she's on my mind.  

Under my layers and layers of clothes tomorrow, I might even break out my Shannon the Cannon t-shirt...


Tuesday September 30, 2014

After a nice quiet weekend at home, it's time to crank up the gerbil wheel again... this week involves working my two jobs, Dan is traveling throughout Minnesota, and Miss Erin has two volleyball games, confirmation, and a debate competition.  Oh yeah, and school.  Family and friends coming to town this week and it sounds like we will have a nice group for the Brains Together For A Cure walk on Saturday.  Cross your fingers for decent weather.

I wonder sometimes about this blog... what is the point of it now, anyway?  Am I just being self serving by continuing to write about my life and my family?  Does anyone really care?  Isn't it time I just moved on?

These questions rattle around in my head a lot lately.  One of the things I liked best about getting a writing job is that I get to write a little bit about something other than myself.  And yet, here I am, continuing to write about my favorite subject... me!

But, we got stopped at church on Sunday by someone who has been touched by our writing.  I guess that's the point, isn't it?  It helps me and if it can help others along the way, then the blog - and the book - have a purpose.  So, onward we go...

I've been thinking about the book again lately, too.  A year ago we were in the middle of a promotional tour, doing events and sharing our story.  Now, it's just out there, available if someone stumbles across it... It's a strange feeling to have this big accomplishment of writing a book, and then it's kind of over.  Maybe I was hoping for more.  Maybe that's why authors don't write just one book.  Maybe there's something more that will come of it some day.  Maybe I should just be content...

I think secretly I long for Shannon's story to be an active, living thing.  It felt that way as we shared the book and shared our story last year.  When we were telling our story to others, Shannon was alive in it.  We could feel her there.  Now, it's mostly memories bouncing around in my head, and that's harder.

But, we will start to actively honor her again this weekend at the Brains Together For A Cure walk.  We will remember her spirit and her desire to make a difference in this world.  Then, before you know it, it will be hockey season and we will be at the rink, sharing our story and saying her name.  It's always good to hear it out loud...