Friday October 28, 2011

Yesterday was the pre-chemo week checkup for Shannon and for the first time in six months, the people at Mayo 16 were having a bad day.  Computers were acting up, physicians were behind schedule, and they were all stressed out.  It stuck with me because as I thought about it, it's amazing that it hadn't happened before.  I mean, who doesn't have a bad day at work at least once every six months?  Just another testament to the high quality of care we are receiving.

Shannon's counts are holding.  She's doing great - for a cancer patient.  I only mention this because it's easy to forget that she is in treatment.  You wouldn't know it by looking at her.  Shannon asked our nurse practitioner Donna, "Are my counts normal?"  The answer is yes and no.  For a non-cancer patient, no.  For someone who is about to start her 5th round of maintenance chemo, her counts are great.    But, what Shannon is really asking is, "Are my counts normal enough that I can continue to play hockey?" And we are grateful that the answer to that is yes.

We discussed what appointments are ahead this month. Shannon will have her bi-monthly complete neuro exam with Dr. Keating in two weeks and we will do the post-chemo bloodwork then as well.  At the end of November, Shannon will have an MRI to check the tumor.

We continue to try not to be overwhelmed by the big picture because the little picture looks good.  The girls are going to school, going to practices, hanging with friends, laughing and smiling.  We had a few tears this week, but they were Algebra related, not cancer related!  Even that makes me smile, because it's a normal struggle that has nothing to do with Shannon's illness.  I've come to appreciate those.

We're headed into a fun weekend.  Grandma Harkins returns to MN for a visit, we've got a late hockey practice tonight, and an early hockey scrimmage in Apple Valley tomorrow.  Then we'll have a quick visit with the Harkins cousins before finally heading to Grandpa Ed's 88th birthday party in Edina. We will be on the go ... and trying to remember to cherish every minute of it.

Currently listening to Jack Johnson's, Never Know:  "We're just human, amusing and confusing and we're trying, but where is this all leading?  We'll never know ..."

Wednesday October 26, 2011

Authoring this damn blog comes with a decent amount of obligation. I am not sure if I am grateful for that or annoyed by it.  Having one of those nights.  But I think I am grateful for this forum because tonight I need to get some stuff off my chest.

Just heard about a Bloomington Lincoln HS alum - roughly my age - that lost a shockingly short battle with bile duct cancer.  Her name was Lynne Engfer Sater.  Two years from diagnosis til death.  And in the process of sharing a connection to her death with a friend in the TV industry (Lynne's husband is a TV anchor in Milwaukee) I was forced to break the news of Shannon's illness to said friend who is also a TV anchor in Milwaukee.

The Sater's have three young daughters.  I am not surprised to hear she was a great mom, wife, school volunteer. 

Tonight, Jen attended a district team manager's meeting to set up our game schedule for Shannon's hockey team, the Rochester Rebels.  (Of course, Jen is the team manager...the Rebels love and need her OCD!).  I stayed home with the girls and we did our own obsessing on some good books all three of us are into.  Jen returned from the meeting all pumped about our game schedule (31 games including scrimmages) and Shannon went from nearly asleep in her chair to completely jacked about her upcoming hockey season.

One of the things we were waiting on was to see that schedule and if it worked out to take a trip to Florida or somewhere warm around the holidays.  Since, we no longer make decisions based on what makes sense financially (which is completely whacked) we were just going to go for it.

But the week we would have gone - between Christmas and New Years - the Rebels have a game at Northfield.  When I asked Shannon if she'd rather go to Florida or Northfield on December 28 she looked at me like I was an idiot.  Needless to say we will go somewhere warm at a later date.  God willing.

Also, this week I spent some time in the field making sales calls in Iowa and connecting with some really good folks I hadn't called on in awhile.  They are reading this blog too. They knew what was going on in my life which was a little jarring.  Sometimes I think we lay stuff out here on this blog with no return on the investment.  But it's not really about an investment - it's just about sharing a journey.  A good reminder that what we do needs to be about what is good for us and nothing external. 

So what does it all mean?  I sure as hell don't know.  I just know that I can't believe how much I love my family and I need to stay focused on all the good out there.  Because there is a ton of it.

Sunday October 23, 2011

I'm home tonight after my getaway weekend.  A little change of scenery was nice.  Teri and I spent our time walking, talking, checking out Madison one day and a local art tour in the tiny Wisconsin towns of Cambridge, Lake Mills, and Fort Atkinson the next.

Girlfriends are good for the soul.  They often times help you hear yourself and make some sense of your thoughts.  Plus, we laughed a lot.  That's good for the soul, too.

I returned home to find that the house was clean, homework was done, and as I walked in the door, Shannon was folding the last load of laundry.  Nothing left for me to do.  My family wanted my getaway to be completely hassle free.  And it was.  

Ready for the week ahead.

Saturday October 22, 2011

Jen is away with her friend Teri this weekend. They are getting some R & R at a B & B near Madison.

Shannon, Erin and I have been having fun visiting friends, taking in a movie, just chillin' like villains. We took in Dolphin Tales in 3D Friday afternoon and I was a puddle with my girls on each side of me. Of course, I cry at previews so anytime there is a storyline with kids and good music I am a mess. The girls rip me for it, of course.

Our friends from Jacksonville FL, Jack and Colleen Jones and kids Mikaela and Jack III landed at RST last night at 7:45 - they are visiting family in LaCrosse this weekend. So we picked them up at the airport and went out for dinner and came back here for desert. Ending up staying up and chatting until almost midnight.

The Jones' have been our friends since forever - Jack and I did the TV program at St. Cloud State together. They were married a year before Jen and I. They keep moving around the country and we keep getting together at various stages of life.

They were amazed at how great Shannon looked. And how comfortable the girls seem to be accepting their place in this world. That part makes me most proud because rolling with it is the only thing we can do until we can't do it anymore.

Off to hockey practice. The Rebels are coming together nicely. We start playing real games somewhere around November 5. Erin starts basketball Monday.

Looks like a beautiful fall day!

Wednesday October 19, 2011

Yesterday was quite a day.  We've remarked often here about people's kindness and generosity and Tuesday was one of those days.  Such a good day that Shannon, in her teenage exuberance, posted on her Facebook page last night, "Best Day Ever!"

We played hooky and spend the day with Shjon Podein for a behind the scenes look with the Minnesota Wild.  Shjon is a Rochester native who is well known as a Stanley Cup winning hockey player, but also for all the charitable work he does through his children's foundation, Team 25. (team25.com)  His foundation's mission: To improve the quality of life and create an environment of caring and community support for children facing extraordinary difficulties in their lives.

We attended the morning skate where Shannon blushed as Colton Gilles winked at her, then she and Erin smiled from ear to ear when goalie Josh Harding handed them a goalie stick.  We heard some choice locker room language as the players ribbed each other, which added the the whole experience!

After the practice we watched the players clear out of the locker room.  Nice guy awards go to Nick Shultz, Josh Harding, and Matt Cullen who stopped to meet the girls and shake their hands.  Shannon's favorite Wild player, Mikko Koivu, is now my favorite as well - he emerged from the locker room wearing a Roger Federer baseball cap.

Once the locker room was clear, the Wild's assistant athletic trainer, John Worley, gave us a tour.  Worley and Shjon are good buddies from the 5 years they spent together with the Philadelphia Flyers.  The girls were wide eyed checking out the stick room and sitting on the bench at the Excel Energy Center.

The afternoon highlight was watching the Pittsburgh players come and go and having a chat with Pittsburgh Penguins coach Dan Bylsma.  We were staying at the same hotel as the Penguins and using the same Starbucks as well.  We said hello to the coach as he came in for a cup of coffee and he stopped to ask the girls how the Wild looked at the morning skate.  We talked about Sidney Crosby and when he might return.  He told the girls to have fun at the game, but not too much fun.

While the game was a bit of a dud (the Wild looked really average) it really didn't matter.  For a sports loving, hockey playing 13 year old, it qualified as the best day ever ...

Monday October 17, 2011

We passed another milestone this weekend.  Saturday was 6 months since Shannon's diagnosis.  April 15, 2011 - the day the music changed.

Sunday at St. John the Evangelist an unbelievable set of circumstances came together that can only add to the Mystery of Faith.  We were surrounded by friends and families and some of our strongest supporters in our section of the church Sunday.  I told Jen last night I could feel the love - like a warm blanket.  I made reference to that same feeling months ago in this blog.  It was in the early days post-diagnosis when the four of us lied together in Erin's bed chatting about life.

When we walked in before 9:30 mass Sunday one of the ushers approached to ask us if we would present the gifts - deliver the bread, wine and holy water to the alter just after intentions.  We've done this before and are honored to be asked - even the girls recognize it as a privilege. So we said sure.

One of the intentions was a "Lord hear our prayer" for the family of parishioner David Van Houten who this week lost a 10-year battle with brain cancer.  As Me, Jen, Erin and Shannon stood holding the bread, wine and holy water in the back of the church, Fr. Mahon pointed out the Van Houten family - they were seated up near the front.  The funeral is Monday. 

Fr. Mahon recalled performing the Sacrament of the Sick for Mr. Van Houten at 9:30 mass 10 years ago when we were celebrating mass over in the St. John School gym while they were remodeling our church space.  David stood in front of the parish - he had just undergone surgery and bore a 6 inch scar on his skull - as we all held our hands high and prayed over him on that Sunday 10 years ago.

At that same mass, Erin O'Hara was baptised. 

Our eyes our wide open and our faith remains strong.

Saturday October 14, 2011

I've been meaning to write an update for the last few days, but time just keeps flying by.  We've made it to the weekend now, and theres not a lot on our agenda this weekend.   Looking forward to some down time around our house.

Thursday was a non stop day of school, work and our bi-monthly Mayo Clinic visit.  Add a piano lesson and some school conferences in there, and you've got a full day.  Shannon's check up was good.  She was fatigued this week - post Temodar, of course - but she managed it well, coming home Wednesday early from school to allow herself some extra rest.   Her blood counts and weight are holding steady.    Shannon's only concern has been some trouble catching her breath towards the end of hockey practice.    She was hoping for a solution to come from Dr. Khan as they discussed it on Thursday.  Dr. Khan explained to Shannon that her body has been through a lot and she should maybe take it easy out there and not push herself too hard.  I wish you could have seen the look on Shannon's face -  take it easy when she is out on the ice? What?  That is not a part of Shannon's plan!  Gotta love her spirit.  Dr. Khan did say we will keep an eye on it as we get a few more hockey practices under our belts.  We will return to Mayo in two weeks for a pre Temodar blood draw and checkup.

School conferences provided a nice pick me up at the end of a long Thursday.  Both girls are doing well academically, but more importantly, both girls are doing well socially and emotionally.  Erin came with me to conferences and her teachers all shared how much they enjoy having her in class and what a mature kid she is.  Pretty good for a 10 year old.  A couple of her teachers were surprised to find out that Erin was grade accelerated and therefore is very young for a 6th grader.  You wouldn't know it.

Shannon's conferences had a similar tone.  She's a conscientious student and a joy to have in class.  On Wednesday when she needed to come home to rest, she made a point to see each of her teachers, turn in all the work that was due that day, and gather the necessary homework before she headed home.  One of Shannon's teachers told me "I think I will learn more from Shannon this year than she will learn from me."

I share all this with you not to brag about our children, but to let you know that life goes on and we continue to function and sometimes even thrive.  We often write here about the struggles we are having, but we get up every morning and try to do what needs doing.  For the girls, that means going to school, doing the work, being with friends, being a good student, and a good person.  Cancer or not, you can still be a good human.  On that front, Shannon and Erin are succeeding.

Wednesday October 12, 2011

It's on like Donkey Kong!  Hockey season starts tonight.  Shannon has been assigned to the Rochester Girls U12 B team - right where she needs to be - playing for our buddy Coach Bart Grafstrom and playing with many of her closest friends.  She even gave me the nod to be on Bart's staff as an assistant coach.  And, of course, Jen is the team's manager (no worries - the team web site and calendar is current!).  Our first practice is tonight at 8:00.  We start playing games in early November.

I know many of you may be thinking this is nuts.  But this is what we like to do. Once the tryout process is behind you it's all good.  Even Erin seems excited about Shannon's team situation.  She knows everyone - many on Shannon's team are 6th grade friends of E. And many of the parents we will be spending much of this winter with have been some of our strongest supporters since Shannon's diagnosis in April.

In a post last week I wrote about placing all our frets and uncertainties in the "God Box" - well after much hand wringing - Shannon's hockey season is lined up to be a winner.  And that has nothing to do with wins and losses.

Erin's basketball practices will get going next week.  We know she's in good hands playing for Team Olson and with the Mayo 6th grade traveling team.  Our winter is going to be crazy!  But there is nothing else we would rather be doing then chasing our kids in and out of Minnesota's finest gyms and rinks. 

One minor detail to work through and we can get on with the fun...my career.  My employer, EFS Transportation Services, is merging with a competitor.  It's a joint venture with a new management team in place to manage the JV.  I'm reasonably confident I'm going to be on the "A" team but until they give me the formal nod...where's that "God Box"?  The merger will take another several weeks to close, maybe longer.  Until I hear otherwise we will keep sellin'.
'
Years ago, my wife introduced me to one of her favorite songs - a George Michael ditty Waiting for That Day.  It's now one of my favorites.  Especially today.

So every day I see you in some other face
They crack a smile, talk a while
Try to take your place
My memory serves me far too well

BTFAC - Team Shannon the Cannon

Sunday October 9, 2011

It has been an emotional roller coaster of a week.  We knew we were headed for some delicate territory with the Brains Together For A Cure walk coinciding with hockey tryouts.  Hopes and fears and wants and needs.  It's hard to sort them all out sometimes ...

The walk was an amazing, emotional experience.  So many people, so many families, dealing with this terrible diagnosis.  Shannon was well represented by 80 or so of us wearing our lime green Shannon the Cannon t-shirts.  (I'll share a group photo when I get a hold of it.) The weather was beautiful - almost hot - for a fall day.  Seeing the family and friends who gathered to support us and our kid: Dan's customer and his family coming from hours away, a high school friend, Shannon's former teacher, RAC tennis ladies and their families, aunts, uncles, cousins, brothers, sisters... I don't have the words to describe it.  And then you look next to you and there's another family doing the same thing.  And you exchange a knowing glance with them, and all of a sudden you are bonded together.

Shannon came to the walk directly from hockey tryouts, and she smiled and socialized with the people who wanted a minute of her time.  She met some people who knew her story and she handled herself with grace.  She introduced one of her doctors to the O'Hara clan.  She met other brain tumor patients.  At the end of the event, Shannon made a donation from her fund to the board members.  So proud of her.  Later Saturday, Erin thanked us for organizing such a fun event for our friends and family.  So proud of her, too.

Today brought us to the final day of hockey tryouts. (Thank goodness!)  So much pressure and anxiety for Shannon and all her hockey buddies.  Shannon's goal since hockey season ended last year was to be good enough to make the 12A team this year, but it became apparent that this wasn't realistic.  Whether she could have gotten there had she not gotten sick, who knows.  Her sadness about that was hard to see.  But, the kid loves hockey and loves being on a team and as it turns out, some of her buddies ended up right with her on the 12B team.  So, the text messages were flying and they were all pumping each other up about what a fun team they are going to have this year.  By the time we tucked Shannon into bed tonight, the sadness had been replaced with excitement that was making it hard for her to fall asleep!

Man, have we covered some ground athletically in the last 8 days or so: we finished two soccer seasons, we survived basketball and hockey tryouts, and in the end, our girls are truly right where they want to be heading into their winter sports seasons - on a team with their friends. Time for a deep breath.

All this activity, all these emotions, yet one of the best parts of the weekend was this morning when we just hung around as a family, doing the necessary homework, piano, french horn, laundry, etc.  The girls found time to just be pals.  Playing in the backyard with the dog as we enjoyed our morning coffee.  One of those moments where I forgot, just for a second ...

Early a.m. Friday October 7, 2011

Sleep is escaping me tonight.  Having two emotional girls this evening has kept my mind working into the wee hours.  Hockey tryouts have raised the tension level around here.   So stressful for Shannon, and having the three day tryouts coming at the end of a chemo week is a lot to ask of her.   It's difficult to wrap your mind around the fact that this drug that makes her lose her appetite and feel fatigued is really working it's magic on that tumor.  She'd seem perfectly healthy right now if she wasn't taking this medicine that makes her sick!  Shannon felt like she tried her hardest tonight, but didn't perform.  Hard for me not to see it as her body failing her just a bit.

But, in the grand scheme of things, it's amazing that she's out there playing hockey.   When I think back 6 months to diagnosis, we didn't know what Shannon would be capable of come October.   Yet here she is, pushing herself and expecting her best.   We will get through this tryout phase and she will play hockey this winter, and hockey brings her joy.

We returned home from tryouts and I helped Shannon review for the four tests she has today.    She wasn't in the best state of mind to retain the material, but we muddled through.  One more study session over breakfast, and she'll give it a go.

Erin had a mostly good day, including starting piano lessons again.  She's really been looking forward to it.  This year, Shannon is not taking lessons so it will be Erin's own thing, which is a good thing.

Erin's frustration that it's "all about Shannon" boiled up again tonight.   We returned home from tryouts and after briefly chatting with Erin about piano, I headed straight to helping Shannon with her studying.    Erin wanted more of my attention.   Maybe I coddled Shannon tonight, but I couldn't help myself.   So, tonight Dan returned home just in time to walk into that hornet's nest.  "Welcome home, honey. I know you've had a long day. Which crying kid would you like to manage?!"

Some days that's how it goes.  Some of it's just life stuff.  Some of it's just parenting stuff.  Some of it's cancer stuff.  Sometimes it's such a struggle to make any sense out of what we are feeling.  Why do I feel sad tonight?  Am I just worried about the day to day life stuff, or am really worried about the cancer?    Is it possible to separate one from the other?  It's like everything is viewed through a different lens now.

The good news is tomorrow is coming and it's a fresh start and another chance...

Wednesday October 5, 2011

Shannon has gone a week without the need for steroids.  Keep your fingers crossed that the taper is complete, for now.  Her adrenal glands must be doing their job because she has not reported any headaches or problems.

We are blessed with so many kind and wise people in our lives.  You listen to us, share wisdom, offer hope and support.  In your own way, every one of you help us "keep it real".

That's a good thing because there seems to be an inordinate amount of uncertainty that has accumulated;  work stuff, school stuff, sports stuff, cancer stuff...stuff that can jolt you awake at night.  What if...?  What if...?  What if...?

A friend recommended on oldie but goodie for dealing with uncertain times; jot down the things that are keeping you up...one at a time...on little sheets of paper...fold them up and toss them in a "God box".  Like a mini time-capsule.  After some time passes, check back on your "God box" - chances are pretty good that each of these items will magically be resolved.  Let go let God, right?

Two nights in a row this week Jen and I held the girls as they cried themselves to sleep.  On Monday night Erin let it all out as I tucked her in for bed.  Tuesday night, it was Shannon's turn.  The pressures in each of their lives just needed a release.  Truthfully, comforting a sobbing child is one of the greatest privileges of being a parent. Holding them tightly until all the air returns to their lungs...probably good for all of us.  Another reminder that our emotions are living real close to the surface around here.  That ain't all bad.

I was fired up to download some new music this week.  Then Jen informed me Bob Seger's iTunes release of 1970's songs does not qualify as new music.  I don't care...I remember standing on the corner at midnight...trying to get my courage up....

Our thoughts and prayers are with the family of Eleanor Mondale Poling this week.  Eleanor was treated at Mayo Clinic and pledged her memorials to Rochester-based Brains Together for a Cure.  http://www.brainstogetherforacure.org/

Monday October 3, 2011

The Vikings are 0-and-4 and I really don't care.  How about that?  In the pecking order of clutter occupying my mind - the Vikings no longer make the cut.  Yes, I know the Lynx are playing for the WNBA title.  Again, in the pecking order of clutter occupying my mind...

It's a Temodar week.  Shannon starts another cycle of chemo tonight.  The timing is not great.  It's a big week for her.   At dinner last night we were going over upcoming activities; a couple tests, final week of soccer practices, hockey tryouts and then the Brains Together walk and soccer games Saturday.  To use the words of Jesse Ventura's character from the 1987 non-classic Predator; "we ain't got time to bleed"!  

We were in Faribault MN for a Davies' family celebration this weekend.  Shannon and Erin's "Grandma-Great" Jeanne Davies turned 85.  A fun gathering of Jen's closest rellies on the Davies side.  Jen's mom Gwen is the oldest of 9 - she has 8 younger brothers many of whom were in attendance and yucking it up with all of us on Saturday.

Jen's uncle Scott is Chief of Medicine at HCMC and was chatting it up with Shannon.  Scott to Shannon; "So you are off the Prednisone?"  Shannon to Scott; "Decadron".  OK then!  Welcome to our world Dr. Davies.  We continue to be amazed at Shannon who remains quite confident in herself.  Her fight with cancer is just part of her persona.

We are hopeful the weather holds for Saturday's Brains Together for a Cure walk in Rochester.  If you ordered a Shannon the Cannon shirt Kula Shives will have them at the walk Saturday. 

Enjoy the fall weather and colors.  Enjoy life.  Enjoy today.