Social media is all abuzz today with photos of people in costume.  Halloween on a Friday is bringing out the crazy in all of us.  I am dressed today as a tired, middle-aged midwesterner... oh wait, I'm that every day...

I can't help but think of those days when the kids would get so amped up to go out trick-or-treating.  What's better than dressing up in costume and having people give you candy? Thought I'd post a little throwback photo from 2004, also known as the year of the elephant... and the cat...

Smiley was smiley even way back then.  Loved those days.  

Today, Erin is dressed as a baby.  That means she went to high school in footie pajamas, carrying a blanket and a stuffed animal, with a pacifier in her mouth.  Now that reminded me of Shannon, who wouldn't give up her nuk until she was 4 1/2. 

Tonight Erin is helping her friend Emily take Em's little sister trick-or-treating.  This is the best way to not really be trick-or-treating, but still get to reap the rewards.  She's no dummy...  

Happy Halloween.

Tuesday October 28, 2014

Ahh, sometimes life is crazy and things you don't expect happen.  As I write, our kitten is on my lap.

Yes, it seems that we are now the proud (?) owners of a malnourished 5-week-old alley cat with an upper respiratory infection.  WTF??

Here's the story:  while playing golf on Sunday, Dan came across an abandoned kitty, full of burrs, sitting in the parking lot, shivering.  What to do?  Well, bring it home for Erin, of course.  Erin named her Sylvie.

And just like that, we became cat owners.  After a text to the vet, we were off to PetSmart for some cat shopping.  $121 later, we were ready to feed and bathe our kitty.  Did you know you can buy kitten milk replacement for those kittens whose mothers abandoned them?  Me neither! Apparently you also need a scratching post and a litter box from the Martha Stewart Collection and a food dish that says "Catch of the Day".

Sunny is a little skeptical of this interloper, but she's doing her best to be tolerant... Sylvie already thinks Sunny is the cat's meow... let's just say it's a developing relationship.  I hope Sunny doesn't mistake Sylvie for a chipmunk.  She's killed a couple of those here recently.  It's going to be fine, right?

I love dogs, but I don't do cats.  At least, I never have.  But what do you do with an abandoned kitty once you bring it home?  It's all over, right?  I mean, we're invested now...  Erin's wanted a second pet around the house, so here we go.

Since we are apparently keeping this cat, yesterday it was off to the vet for eye drops and antibiotics to help Sylvie fight off the cold she developed while sleeping outside for the first 5 weeks of her life.  $156 later, Sylvie is on the mend.  She is a sweet kitty and yes, Dan can say he saved a life.

So, I rushed home from playing tennis today to feed the cat and give her meds.  She's currently in the bathroom with the shower running.  A little kitty steam room to try and clear her respiratory system.  A couple of times a day.  Uff da, I fear I have fallen down the rabbit hole... I sent a picture of Sylvie via text to Erin at school.  Yes, I am turning into that lady, the one who takes pictures of her cat.  For example:

So, a new development at Casa O'Hara to say the least.  People tell me cats are easy and fun to have around the house.  I am taking care of nursing Sylvie to health, but I am reserving judgement.  At least until she proves that she can learn to poop in the litter box.  Then, we can be friends... 

Sunday October 26, 2014

Another beautiful fall day is upon us.  The colors have been so vivid this fall that you can't help but take notice.  The amazing beauty around us reminds us to take stock of all that is good right here, right now.

We took full advantage of our first free Saturday in a long time yesterday by catching up with the Minny Os.  Watching the Gopher football game on TV, and walking along the Mississippi river in St. Paul.  The impromptu gathering managed to bring together aunts, uncles, cousins, and Grandma and Grandpa O.  There is no such thing as a small gathering!  Ed will turn 91 this week, so it was a good excuse to get together.

Erin enjoyed talking with her cousins - one in college,  one post college, and one young mother.  I think she strives to be like each of them some day.  A big bonus for Erin was some time to play with cousin Ollie (Erin's first cousin once-removed... I have to look that up every time!)  Ollie is a good natured one year old - curious and smiley.  If he can tolerate the noise level of an O'Hara gathering, he's in good shape.

So, a little time to reconnect with family was good for all of us.  Warm temps and sunshine didn't hurt either.  Life is good.

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...