Memorial Weekend In Review

Our holiday weekend was a busy one. Most events centered around the Med City races here in Rochester. The festivities kicked off Saturday morning with the Kids Run which Erin, her three pals Emily, Katie, and Lindsey, her cousin Laurynn, and several hundred other elementary and middle schoolers took part in.  As the 1.2 mile race approached, Shannon looked at Dan and I and said, "I want to run" - she went from spectator to participant. Instead of watching these girls run for her in shirts bearing her name, Shannon ran with them. Ok, not exactly with them - she wasn't about to let Erin or her fifth grade friends beat her! Crossing the finish line, she was smiling from ear to ear ...

The afternoon was spent picnicking in the park behind the Mayo Civic Arena. 50 or so friends and family showed up and donned "I love Shannon" shirts.  Both sets of Shannon and Erin's grandparents, 9 aunts and uncles, 10 cousins, 2 great uncles, Dan's friends from high school, our maid of honor... while Shannon doesn't mind the attention, and she certainly understands why we are all gathering, she doesn't necessarily want or need to talk about it. She just wants to laugh and smile and enjoy people's company. So we did. And at 3:00, on a gorgeous spring day, we all hit the street in our Shannon shirts for the Med City 5K.

Sunday brought more Med City events - Dan and his brother Tim ran the half marathon. There were people wearing "Shannon" shirts everywhere!  Some we knew, some we didn't:  co-workers, church friends, school friends, old babysitters, even a golf teammate's boyfriend wore one.   The idea for the shirts was to allow us to show support for Shannon but also to raise awareness for Brains Together for a Cure, a local non-profit that funds Mayo Clinic research. Maybe we can all wear these shirts again in October for BTFC's 5th Annual Brain Tumor Walk. Last year their grant money went to Dr. Nadia Laack, Shannon's radiation oncologist.  

Check it out -  http://www.brainstogetherforacure.org/

Shannon and Erin and cousin Laurynn cheered on Dan and Tim in the half marathon with signs and loud cheers at the 6 mile, 8 mile, and 10 mile marks.  As we were waiting at each spot, several Shannon shirts would pass and we would give them an extra loud cheer. We watched Dan and Tim cross the finish line, hand in hand, arms held high.


Dan must have trained well for this race and seemed no worse for the wear. By the afternoon, he was even up for a little golf. So me, Dan, my brother Eric, and my dad played 18 holes. And guess who joined us? After 39 days of chemo and 27 radiation treatments, Shannon played the first 18 hole round of her life. Did I mention she's determined?


So a successful gathering for family and friends is behind us, and now we look ahead. But not too far. The final four days of healing are this week. I'm struck by how fast this has gone and how much ground we have covered. The knowledge we've gained, the relationships we've developed or rekindled, the awareness about who we are and who we mean to be. The longest six weeks of my life have flown by.

Making the most of each day leaves little idle time...

Med City 5K - May 28

Friday May 27, 2011

With today's fortune cookie at lunch we unwrapped this nugget...

Courage conquers all things; it even gives strength to the body

We have completed 5 weeks of radiation and chemotherapy in our battle against the brainstem glioma that was diagnosed on April 15.  "We" is just a figure of speech - much the way the caddy of a major champion would tell the story of how "we" played a great round at the Masters or US Open.  "We" is Shannon who is showing "Us" the courage to conquer all things.

Thursday's blood work looked good again.  White cell counts continue to drop but have stayed within the margins of "normal" range which means another week of activity for Shannon without restriction.  So Thursday night - of course - she played hockey.

Shannon was having a good day.  Her spirit and tolerance for appointments boosted by the the chance to share lunch downtown with a school friend.  She was even able to take Anna in to see where she is radiated deep in the bowels of Mayo's Charlton building.  Her meeting with our social worker Kelli was of the hurry-up variety, "I'm not sad today, I'm not mad today...I just want to have lunch with my friend".  A change in her Thursday routine made things move along nicely. 

One more week of healing.  Hang on baby.  I have to say that I am stunned at how well Shannon has tolerated the drugs and beams of radiation that are coursing through her body.  The doctors tell us that even two weeks after treatment concludes, the Temodar and radiation are still working their magic.  But it's possible fatigue and other side affects could still impact Shannon's energy levels well into June even though our final healing session is June 3.

One thing that has changed...Shannon has accepted the advice of everyone on her medical team and started taking naps.  Serious two-hour power naps.  We get home from healing right around 1:30 and for the past three days she has slept from about 2-4.  Perfect.  And now she has enough energy to stay up to catch the end of the Twins or NHL playoff game.  Last night she stayed up late enough to finish reading and homework that was tied to a science final grade.  Determined to finish 7th grade like everyone else.

So this weekend 155 of us will gather together in support and wear "I Love Shannon" shirts in the Med City Kids Run, 5K, Half Marathon and Marathon.  The forecast for Saturday is for warmer temps...high 73...a thunderstorm somewhere...we pray just not on our parade!

Med City Race Shirt Info

For those of you who ordered shirts to wear in support of Shannon this weekend, please plan to stop by our house - 1314 Willow Lane SW - and pick them up on Friday between 4:00pm and 6:00pm. Cost of the t-shirts is $10 each. Thank you in advance for having correct change and making this go smoothly for us!

Tuesday May 24, 2011

How to possibly describe what has happened today ... I dealt with insurance companies and rental car companies to make some progress toward getting my van repaired. I filled out a ream of paperwork for the county and state of as we cover our bases on the cost of Shannon's care. After all that, we had a bit of a cluster f*#! and, while I'll spare you the gory details, let's just say my mom had a mini public meltdown that involved sobbing. Seeing her cry made me break down. Then, seeing me cry made her snap out of it and get it together because she's my mom and that's what moms do when their kids are hurting - they suck it up and stay strong for their children. Through all this crying, believe it or not, Dan was the emotionally stable one. Steady, Eddie...it's a brave new world everyone!

In all seriousness, all of our emotions are very close to the surface. Little "things" can seem like big things and every "thing" seems like just one more thing. Seeing my mom cry was o.k. for me. She's human and she's hurting, just like the rest of us.

On a more positive note, Shannon continues to power through her days at school - just 11 days left. Dan, my mom, and I picked Shannon up today and she was full of energy and ready to tackle day number 24 of 31 at Radiation Desk R. Only 7 healing sessions and 8 doses of chemo to go. Jackie and Janelle were there to check in on all of us and had a new headband they had picked out for Shannon. She took an afternoon nap, which has become part of the daily routine, and then finished off some homework.

Erin had a good day, too. It was hat day at Bamber Valley and Erin chose the giant stovepipe hat in the green, orange, and white of the Irish flag, drawing a little attention for just being a crazy 5th grader today. Plus, no homework tonight meant a chance to tool around on the golf cart after school. She ended the day with her last piano lesson of the spring with Ms. Glenna.

Dinner tonight involved a visit from my 5 college tennis teammates. They all live in the Twin Cities area and we’ve kept in contact in the (gulp) 20 years since I graduated from St. Thomas. (Holy crap, when did I get this old?) After the events of the day, I wasn’t sure I had the energy to prop myself up for them, but here are 5 moms with 21 kids between them, finding the time and energy to deliver dinner all the way to Roch. If they could pull it off, I could too. I’m glad they came.

I found a good mix on the ipod this afternoon as I mowed the lawn and listened to some music. Today's song suggestion comes from surfer dude Donavon Frankenreiter. Check out All Around Us: "One day we'll all be taught, love is all we got ..."

May tomorrow bring us less paperwork and fewer tears ...

Monday May 23, 2011

The pressure seems to be mounting as the school year and the 42 days of healing come to a close - pretty much at the exact same time.  Sandwiched in the middle of these next two weeks is a really big, busy Memorial weekend where there will be many family and friends gathering in Rochester.

I am up early Monday morning because I can feel it.  I am trying to be cool about it because the kids key off my moods and attitude.  Like most moms, Jen is our steady family leader; careful, cautious, organized as she hustles around Sunday nights packing lunches and backpacks, folding laundry, making sure we are good to go each and every Monday morning.  I don't know about all dads, but in our house I am the emotional straw that stirs the drink.  For better or for worse.

Typically, my Sunday nights and Mondays are spent organizing and attacking my work week.  So that routine has always been pretty healthy around here.  I manage me, Jen manages everyone else.  (Come to think of it, moms are way underrated).  Like most kids, Shannon and Erin thrive on that routine, predictability and consistency.  All of which has been blown out of the water over the last month.

So we tried to restore some of that as we met Sunday night as a family to talk about some goals and expectations for the upcoming week.  Another "new normal" activity that we are trying out.  Staying focused on the final few weeks of school is high on the list of goals.  Down the stretch they come...

Jen and I both struggled with our emotions Sunday at Erin's spring piano recital as she played a duet with her teacher Ms. Glenna - they teamed to perform Randy Newman's "You've got a friend in me".  The duet was supposed to be Shannon and Erin playing this song together.  But when the tumor was discovered Shannon decided to let piano lessons go.  Erin later revealed to us that she felt Shannon's piano skills were diminishing as they practiced this piece together.  We now know why.  Erin did great in the recital.  She is about as cute as a 10-year old can get.

Ms. Glenna honored one of her 12-year students at the recital.  A brilliant kid who will go to Cal to study computer science and music.  We're watching him perform this amazing original piece and thinking...

Those milestone events are just so hard for us now.  And with graduation and wedding season upon us we need to figure out a way to enjoy and celebrate these milestones as here-and-now events without reflecting.

On Thursday, Dr. Laack was talking to Shannon about recognizing her limitations and not pushing it too hard to get through finals.  There are laws on the books to protect kids like Shannon and to allow her to complete finals whenever she can.  Shannon, of course, is most determined to finish the school year with every other 7th grader...taking finals...walking out of school June 9 with hands high in the air!

Dr. Laack realized she was talking to a brick wall conceded "Shannon if anyone can do it it will be you".  So we're going with that.  Let's go get em' girls!

Sunday May 22, 2011

We all survived the Rapture yesterday, but, with the way our day started, I was having my doubts.
Here's a quick summary of Saturday morning:

* While sitting at a red light on our way to the Fireballs game, we were rear-ended by a lady who was either dialing or texting on her phone. Everyone was all right, but the hatch and bumper of my van are smashed.

* Fireballs game took place on yet another rainy day. Rain started as we kicked off and continued and intensified throughout our 75 minute game. At least it was a warm rain this time. The girls played hard and never complained. We tied 4-4.

* Soaking wet, we hustled to the car and the kids changed into dry clothes on the fly as we headed to Mankato for Shannon's opportunity to play hockey. We had to really hustle to get her there on time. Not exactly the kind of entrance you want to make when someone is being generous and offering you an opportunity like this. Plus, have you ever tried to get a giant hockey equipment bag out of a minivan without opening the hatch? No small feat.

After that, the day improved. The Ice Bucks played a good game against a quality opponent and lost 1-0. Shannon played hard and did just fine out there. She really pushed herself to play at this level and she tired at the end, but she did it and she enjoyed it. The girls on the team and the parents of those girls were very kind to our family and they all were genuinely happy for Shannon to have this opportunity. They included us in the post-game laser tag event and socializing. Even Erin got to play laser tag and hang out with some friends of hers who are a part of this team as well.

Yet again, I found myself with this ache of sadness after a fun event. All those girls love playing hockey, and all those parents love watching their girls play hockey. Same for us. Being on the ice competing with a team might be Shannon's favorite place in the world. But, as parents chatted about who would coach what team next year, and where all these girls will go to high school, I had that queasy feeling in my stomach, and I got a little angry that we don't get to think that way anymore. Sometimes "one day at a time" pisses me off.

Despite the bumps in the road, it was a good day. The things that went wrong were really the small things: our van will get repaired and we can't do anything about the weather. But the things that really mattered went right. Erin played hard and had fun with the Fireballs. Shannon played hard and had fun with the Ice Bucks. Our kids got to socialize and just be kids for the afternoon. As Dan and I lied down last night and recounted the events of the day, we were able to put this one in the good column ...

Thursday May 19, 2011

Some days are better than others.

Thursday started the 5th week of Shannon's healing.   For me this was a tough one.  And Shannon showed some signs of stress that to this point she has done really well to hide from us.

What bothered me the most was that I was a source of her stress.  She scolded me for suggesting to members of her healing team that there was fatigue denial in play.  She was pissed.  And being the mature adult I am - I pouted.  Then I got sad.

For the first time I got an up-close look at Shannon's hair loss as she showed Dr. Laack and our nurse practitioner Denise.  I was completely in denial about this and perhaps did not want to look hard enough to see it.  Shannon has been wearing her hair straight down some days and some days - like today - pulled back in a really cute little pony with a wide head band that does a great job of covering the scorched areas around her ears.  That's where for four weeks they've been pumping the highest concentrations of radiation into her perfect little skull.

And today when she pulled off her head band to show her radiation team I just lost it.  And I never recovered.  In the van on the way home my crying got Shannon crying.  I told her I was so sorry.  I was sorry that she had to go through this.  I was sorry that I couldn't do anything to help her.  I was sorry I couldn't keep it together all the time.  I felt so helpless. 

And what did Shannon do?  She comforted me by telling me it's impossible to go through something like this without crying sometimes.  She made it OK again.  And then we went home and napped together in front of the Twins game. Kicked Oakland 11-1...hello Justin Morneau!

Really, Thursday's meetings with her doctors went well.  Their message is consistent - get your rest.  Take it where you can get it.  It's OK to nap.  In fact, Shannon must nap. Especially if she wants to keep her activities going - which she does because Dr. Laack told her activity is good.  And Shannon is doing anything they ask of her.  Anything that helps her fight. 

This week's blood work was still within the normal ranges so Shannon gets to keep playing hockey.  This weekend she's been invited to play in a tournament with a Rochester-based summer hockey team - the Ice Bucks.  Our friend and the Ice Bucks coach Bob Montrose had given Shannon an open invite to come to play this weekend.  So we'll maybe give that a shot Saturday afternoon after the Fireballs make it three-in-a-row.  It's good to have goals.

Friday, Shannon has her last golf practice of the season - the Mayo High School girls will play a little 9-hole intrasquad scramble to mark the end of the JV and B-squad seasons.  The varsity girls will keep playing.  Watch out for the Spartans in Sections!

And you know what?  Everything is going to be OK.  Tomorrow I will do better!

Paolo Nutini is playing now..."why can't we just rewind..."

Tuesday May 17, 2011

This alternate reality we are living in is making it hard to be the kind of parents we're used to being. We've tried to teach our kids that when they want something, they have to work hard, be patient, and earn it. We try not to give in to instant gratification. I'm certain that we've used the line "money doesn't just grow on trees" at least once or twice.

But, now when we want something, we get it. Live for today, right? This change in how we operate almost brought Shannon to tears yesterday. She's been wanting a whole set of golf clubs, an upgrade from the mix and match kids set that she has been using. Before the golf season started we said, "Let's wait and see if you enjoy it, and then we'll talk". Now we run out and get them. Shannon notices the change. She looks us straight in the eye and says, "We're only getting them now because I have a brain tumor." She's right. Normally we would say "wait for your birthday" or "let's see how much you grow this year", but right now it seems ridiculous to make her wait. Shannon felt good enough to play 5 holes with Dan and I yesterday and another 10 holes with Papa today, so of course she should have clubs that fit her and she should have them right now.

Yet, Dan and I don't want "living in the moment" to send the wrong message. There is a foreboding undertone. We need to keep remembering that living in the moment doesn't mean Shannon doesn't have a future. What the future holds for her is the great unknown. We have to keep believing, keep the faith. I hope we spend a really long time perfecting our "live for today" philosophy.

So, I find myself struggling because my most important job for the last 13 years as a mother has been to care for my kids, teach them about the world and help them understand it, and plan ahead so we're prepared for what's coming next. What do I do now? One of them is sick and the other feels slighted, I don't know exactly how to help them draw lessons from this thing we are experiencing, and I sure as hell don't know how to prepare for what's next.

Reeling a bit, for sure. And yet, we are having an ok week. Shannon carries on with school, hockey, and golf. She took three tests today and finished a six page creative writing assignment. She continues to amaze. Erin is doing what needs doing at school and preparing for her piano receital. Dan and I are working a little. Life goes on, albeit with a new set of golf clubs...

Monday May 16, 2011

Breaking down the early season challenges of our Minnesota Twins comes down to the most elementary of baseball concepts; balls and strikes.  Our pitchers are throwing too many balls.  Our hitters are swinging at too many balls.  Twins starter Brian Duensing walked the first two batters to open the game Sunday.  The game ended with Jason Kubel watching strike three cross the plate with the bases loaded.  It was the third backwards K of the game for the Twins.  It's all about strike-zone command and discipline.  And right now our Twins have neither.

I came to that conclusion yesterday from the padded seats of the Champions Club section at Target Field.  The Champions Club is basically a yacht club right behind home plate at the ballpark.  The sun shined.  All elements were in place for this family to have another memorable experience together.  However, Jose Bautista and the Toronto Blue Jays spoiled the competitive aspect of the outing.  Still it's really hard to get too upset about our Twins bad start.

Shannon and Erin really enjoyed just relaxing together for a few hours.  During batting practice we were down goofing around by the dugout and Joe Mauer smiled at the girls as he walked by.  I said; "Hey Joe, what up?"  Shannon elbowed me in the ribs for being a dork.

The combination of warm sunshine and really comfortable seating was just what we needed because Shannon started showing signs of fatigue from three weeks of radiation and chemotherapy.

The girls have to grind out two more solid weeks of school before the end-of-year field trips and really fun stuff kicks in.  Do you remember how great that was?  Remember cleaning out your desk?  Erin is about to do that for the final time at Bamber Valley Elementary.  What a great place that school has been for this family.

Sunday May 15, 2011

I find myself wondering why we don't live this way all the time? Being open to people's generosity, allowing people into our lives, people sharing what they can and making the extra effort to let someone know that you care? I know it sounds corny, but this world would be a happier place. Instead, we usually put our heads down, avert our eyes, and mind our own business.

It struck me yesterday as the Fireballs played a game in the rain in 45 degree temperatures. Terrible conditions, yet the sidelines were packed with people who wanted to show Erin that they care: grandparents, aunt and uncle, old friends, basketball teammates and coaches, even kindergarten teachers who haven't had Erin as a student since 2007! None of these people were required to be there, but there they were to say "I care", and specifically "I care about Erin". People have been following our story and they were there to show Erin some extra love. (By the way, we won 1-0...not that whether we win or lose is important ...)

Last night the girls hung out with their first best friends, our old neighbors Abby and Tessa. Things were the same as they ever were ... except they're not. Seeing Shannon and Erin hang with their pals made Dan and I sad. They were happy and having a great time as usual, but we felt sad. I can't completely explain it, but when we have a good day, it's bittersweet. I guess it's part of learning to appreciate each good day because the future is unknown. I've heard it said before, but the words have real meaning and evoke real emotion now that we are living it.

Today we have another opportunity to do something fun. Off to the Twins game with some sweet seats courtesy of one of my brother's co-workers - 11 rows up behind home plate. More generosity towards us. Humbling. Hopefully the sun will shine and the Twins can find a way to win.

My favorite song on my morning music mix comes from Mat Kearney - Won't Back Down: "... I won't back down, and I won't turn around and around, and I won't back down, doesn't matter what comes crashing down, I'm still gonna stand my solid ground..."

Friday May 13, 2011

On Thursday Shannon's doctors told us the tumor is responding nicely to the first three weeks of healing.  Before we could turn back flips down the halls of the 16th floor of the Mayo Building, we were reminded the response was predicted.  In fact, about 80% of gliomas respond favorably to the first doses of radiation and chemo drugs like Temodar (aka temozolomide).  Still, it was another great day! 

Erin skipped school to be with us for our Thursday consults which started with a full neuro work up with Dr. Keating.  Dr. Keating and Dr. Kotagal were the pediatric neurologists tasked with breaking the news of our prognosis four weeks ago.  Dr. Keating seemed to be enjoying today's exam as Shannon was put through the ringer starting with many of the coordination tests you might see in a roadside sobriety test and then working through reflex, hearing, eyesight, balance and memory drills.  She nailed it. 

Dr. Keating shared that "It is our job to worry, it is your job to prove us wrong and right now, Shannon, you are proving us wrong!"

The temozolomide's effect on Shannon's blood work was also predicted.  And, while all her counts remain well within the "normal" range, certain numbers are trending downward.  Nothing to freak out about.  We knew the drops were likely.  But when these white cell counts drop we have to be careful.  Even catching a common cold at this time can be a bad deal.  So getting solid rest, washing hands often and practicing good nutrition become really important.  Shannon insisted I wash my hands before making breakfast this morning.

Shannon also continues to taper off Decadron - the steroid she's been taking since the tumor was first discovered.  From the diagnosis, the Dexamethasone was effective in reducing swelling in Shannon's brain.  But now the tumor is responding to the healing and the steroid will no longer be necessary.  Today she will be down to just 2 mg.  In another 4 days we'll go down to 1 mg. By the end of next week we will hopefully be able to be done with the Decadron.  Of course, every action has a reaction.  The steroid has clearly been a kicker to Shannon's energy levels.  The combination of weaning off the steroid and the cumulative effects of the radiation and chemo could take its toll.  But nothing surprises us with this kid...these kids...both our girls have been performing way above their pay grade.

Shannon's radiation oncologist Dr. Laack also gave us a good amount of time and attention Thursday.  That's big stuff considering Dr. Laack's reputation as one of the best.  Shannon meanwhile was looking at her watch anxious to be done with a long day at Mayo; "got it, I'm good!".  But, when doctors like Keating and Laack give you extended time...you take it...you come up with questions...you show them pictures of your kids with Sheryl Crow (Dr. Laack was at the show too)...you share and you learn.  But I can tell you with 100% certainty that both these doctors are enjoying Shannon and our family.  Even in a cramped radiation exam room in the Mayo Clinic's Charlton Building we can find something to laugh about.

I also have to point out that halfway through our healing the loving relationships we are forging with our support teams are incredible (Denise, Jacque, Heather, Michelle, Shanan the Scheduler, Janelle, Kelli...on and on...).  It's hard to believe that we are going to be sad when daily healing ends - but saying goodbye to these people will be hard.  It goes back to what I posted a while back - if you like my kid - I like you! 

Outside, spring has sprung.  Our feeders are bustling with activity.  The gold finches have returned to SE Minnesota.. rose breasted grosbeaks...orioles...even an indigo bunting has been spotted. 

The other big news here on Willow Lane - Shannon and Erin are the proud owners of a sweet E-Z-Go electric golf cart that can shuttle them around the neighborhood.  The cart's majority stockholders are Grandma and Papa Harkins, Uncle Eric, and the Shannon Fund.  Jen and I get to use it too.  :)

Wednesday May 11, 2011

My best pal Teri was here for a visit, which was wonderful. Not the best circumstances that brought her here, but I’m still grateful for the visit. You know that girlfriend in your life who already knows all your crap so you don’t have to pretend that you have everything figured out? Yep.  Teri hadn't seen Shannon and Erin since they were little, so it was great to see her getting to know the people that our babies have become.  During her visit, Teri and I laughed a lot, and we cried some, too...

Shannon continues to feel good and continues to want to go to school, healing, and off to golf practice. While most things this week so far falls in the good column, Erin is struggling. I think she is bummed to be left out of spending time with me and my friend. Shannon has gotten that extra time as we run her to healing, home to rest, and then off to golf practice. Erin is expected to go on as she always has and complete her school day, while the rest of us have adjusted our schedules and are spending more time together. Not fair, I get that.

I know Erin got some extra TLC today from her teacher at Bamber Valley. Much needed.  Erin is going to tag along on our busy appointment day tomorrow, which is good. She wants to be “in it” with us, too, and if she's along, she won't miss out on a thing ...

Another busy Thursday ahead.  Good night.

Monday May 9, 2011

We are stringing together some really great days.  Shannon and Erin continue to amaze us with their energy and overall enthusiasm for life.  It helps that Shannon has been feeling strong even though we are working on nearly three weeks of radiation and chemo.  Monday marked Shannon's 13th radiation healing session and 19th straight day rockin' the temodar. And she played hockey again.

It also helps that we have been experiencing some really cool stuff together and that we continue to be surrounded by family and friends that seem to be enjoying every minute of us.  We keep talking about blessings - but certainly the sense of appreciation for the here and now for so many people in our lives has been heightened.  This has been a really important adjustment we have had to make in our lives and the way we live.  One day at a time. 

So on Mother's Day we had a chance to meet Sheryl Crow.  Our friend Cris Fischer hooked us up sweet.

Sheryl's tour came through the Mayo Civic Center in Rochester affording the girls a chance to experience their first  arena concert.  Live music always brings out our emotions but obviously this show had even more impact.  We're going to have to plug Sheryl's new record, 100 Miles from Memphis.  A little more of a 70's funk and really soulful music.  Sheryl's final set included all her classics that the girls knew; Soak up the Sun, All I wanna do, etc.  I know we have posted on this blog that so many songs and song lyrics seem to be directed at us right now (and no doubt our eyes are wide open). 

Sheryl made an early comment about Rochester in the show..."The Mayo Clinic, I know it well..."  Then later expanded to say she spent a lot of time here with her Grandma and Rochester will always have a sweet-spot for her because of that experience.  Then she closed the show with a stirring, soulful rendition of  I Shall Believe... Yepper...

Mother's Day

Saturday is a day we can mark down in the good column. It was our first soccer game of the season that didn't require a parka or a raincoat. Erin scored a goal, and the Fireballs soccer squad got their first win of the season.


A group of fans were there to cheer for Erin: Shannon and Grandma H., Aunt Suzi and Cousin Maggie, and even Erin's teacher came by to check in on her. A good day for the E and some reassurance that people are looking out for her, too.

We accomplished the rest of what we had planned - the girls and Grandma and Papa attended Cousin Laurynn's dance recital while Dan and I visited with Ed and Tess and watched the Kentucky Derby. We finished the night with a cookout at my brother's house and then headed home. Shannon felt good yesterday and enjoyed herself right up until the fatigue set in and she couldn't keep her eyes open.

Not a day goes by that we don't have at least one moment of sadness or fear or anger. Today it was reminiscing with my family about when Shannon was a baby. Any time we start thinking about life milestones, it gets tough. But that's what people do - we mark time by the stages our children go through. It's normal, it's natural, it's just harder for us to think that way now.

But, we are learning how to just enjoy the good days. One day at a time, right? All that running around yesterday sets us up for a day at home today. Glad for that. Happy Mother's Day, everyone.

Saturday May 7, 2011

I'm up early this morning while the rest of the house sleeps.  That's good bloggin' time for me.  The Ipod shuffle function is off.  Just straight Bruce this morning - looking for inspiration from "The Wild, The Innocent, and the E Street Shuffle" album in order, in its entirety.  I vividly recall doing this back in high school; listening to this same record over-and-over on the turntable with headphones plugged into our stereo back in our Bloomington house.  "Hey Spanish Johnny...wanna make a little easy money tonight...."

My Friday was lined up to be a good one.  Jen and I closed on a home refinance which is a great thing for our overall financial health.  I went for a quick training run.  Beautiful day.  And then it was off for the Spring Open at our home track, Willow Creek Golf Course, for 18 holes of tournament fun with my good buds Opie and Cuber.  I've played in this event for a bunch of years in a  row.  The field includes a familiar group of old IBM'ers and random connections to many phases of my life.  Traditionally, the Spring Open is one of the favorite events of my golf season.

But Friday I just couldn't flush it all away and leave my troubles behind.  I thought I could but I couldn't.  And the boys were great - in fact there were man-hugs all over the place for me.  Mostly guys don't want to talk about real-world stuff but my guys were in tune with the big stuff going on in my life.  And I just sucked.  I hate my new driver.  I can't pronate and everything is a weak fade right.  Concentration is not in my bag at this time.  Mostly, I just wanted to be with my girls.

So that's kind of disappointing.  I know I am going to need to find happiness in the things I know I like to do.  I'm just not there.  And my fear is that the invites to do fun stuff will dry up...especially if I suck.

Jen taught tennis at the RAC and came home to report that she too struggled Friday.  And she loves to teach tennis and be around the kids.  Somehow we need to work through this.  We will.  Just taking some time to settle into our "new normal".

Grandma helped out again to get Erin off the school bus and Shannon came home from golf practice at about the same time as I got home from the Spring Open.  But then I was grumpy.  Even the Twins shelling Tim Wakefield and the Red Sox didn't help much. 

Erin and I had a talk in the back yard about our new life and it was tough.  She has a lot on her mind.  I told her Aunt Suzi and cousin Maggie are coming to see the Fireballs play Saturday.  Erin told me she knows they are coming to see Shannon.  I told her no - they were coming to see her play soccer - which they are. 

On Friday night's Shannon and E used to always get caught up on DVR'ed shows they had recorded during the week.  I told Shannon that Erin would still like doing that with her and we left the girls to figure it out.  Jen was tired.  I made a couple phone calls in our office.

I later went down to find the girls had made a bed with sleeping bags on the floor - GLC blaring on the TV (GLC is family code for Good Luck Charlie - a very funny Disney series we like to watch together).  So that's where they slept.  Just like back in the day.

Saturday we have Fireball action - a 10am kick off gives us some morning time together without having to rush out the door.  That's nice.  We like to sit around in the mornings together...cook a big breakfast...just chill.  The smells of coffee and bacon fill the house.

Then Saturday gets busy as the girls will head north with Grandma up to cousin Laurynn's dance recital - Jen and I will go see my folks in Edina and then we will connect later at Uncle Eric's in Shakopee.  I have to be honest I don't like being away from the girls for very long.  Maybe that's my problem on the golf course.

Speaking of golf, I just clicked over to see that Seve Ballesteros finally lost his battle... I knew he was really sick...I did not know he was fighting a brain tumor...hits me like a heavy punch to the gut....

Friday May 6th, 2011

Another busy Thursday is behind us and no news is good news. Shannon's blood counts stayed the same, her neuro exam showed no decline in strength or coordination, and her side effects are being managed. She can continue to do whatever she feels up to doing.

We had a couple of friends who have known Shannon her whole life get a chance to see her this week and they were astounded. If you didn't know her diagnosis, you would never believe it. Sometimes I still can't believe it. She looks "normal". The only noticeable change is the acne on her face caused by all the chemicals being pumped into her body. While acne is new for Shannon, she's not the only 7th grade girl out there with pimples on her face! Shannon has completed the first third of her 42 day treatment plan and we are all impressed with her determination and spirit. We have our moments, but we are doing the best we can each day.

Erin carried on with 5th grade life this week: completing the MCA standardized tests, doing the mile run each morning, and goofing around on the bus with her pals. It was Erin's friend Emily's birthday this week and we did our best to embarrass Erin by holding up signs at the bus stop and dancing in honor of Emily. Emily thought we were funny. Erin, not so much ...

The weekend is here. Fireballs are on the pitch tomorrow at 10:00am.

My iPod is trending toward songs about love this week. Check out Adele: Make You Feel My Love; Adrianne: 10,000 Stones, and Alexi Murdoch: Orange Sky ...

Med City Marathon & Relays

For Shannon's Minnesota-based supporters we have an opportunity to show your love.

We are having shirts made that participants in the Memorial Weekend Med-City races - Marathon, 20-mile, Half, Relays and 5K Run/Walk-  http://www.medcitymarathon.com/ -  can wear to show that you know/love/support Shannon in her battle against this damn brain tumor.

The shirts will be in the "moisture-management" style -white with green lettering - and will cost $10.00 thanks to our buddy Paul Brandrup.  The cost is a straight pass-through, not a fundraiser.  (We're pretty sure Paul's business, Superior Screeners, is working at a loss on this project.)  The goal is to show support, raise awareness, and hopefully generate some clicks to http://www.abta.org/.

The shirt sizes are XS- 6XL.  They do not shrink.  Jen and I will compile a spreadsheet, so email your order to jenohara@charter.net.  We will collect money when you pick up your shirt.

We will be placing the order on May 20th.  The shirts will be printed up Friday, May 26th and ready to go for us for the Sunday May 29th event.  We can figure out a distribution system for Friday or Saturday.  More to come.  The key date is May 20th deadline.

Tuesday May 3, 2011

A remarkable day in a remarkable journey.  The ups and downs of this deal are just exhausting! 

Tonight's exhaustion - the result of a giant up.  Shannon was able to compete in a high school golf meet.  And she competed like a normal JV player shooting a 65 in her 9-hole match on Eastwood Golf Club's front 9.  She finished 9th out of 16 golfers entered in the JV meet.  As a team, Mayo's JV shot a season-best 206.  The Spartan Varsity shot a season-best 349.  Those are really good scores folks!  Heck, two girls in the varsity meet carded 18-hole scores of 73!  So for a kid that loves sports - a family that loves sports - it was just a thrill to be a part of.  Jen and I were nervous wrecks, but Shannon continues to amaze and come through in the clutch.

It's difficult to put into words how grateful we are for the opportunity Coach Myhro and an incredibly unselfish roster of Spartan golfers gave this family.  Love and Thanks.  Those two words will have to do.

After a celebratory dinner we returned home to watch Frankie Liriano finish off a no-hitter vs. the hated White Sox.  Shannon was so excited about that we could hardly get her to sleep. Us too.  It's amazing what a little sunshine can do for ya!

Monday May 2, 2011

Well, so much for the "new normal". Today was anything but ... Shannon did go off to school, although she was still feeling uncomfortable with an ache in her lungs and some other issues which she prefers I not discuss here (think prune juice). We called radiation oncology to find out what we should do and our nurse practitioner Denise fit us in for an 11:45 appointment. After hearing Shannon's symptoms, a CT scan of the lungs was required. We learned today that Shannon's tumor type will sometimes throw off blood clots that can settle in the lungs, heart, or brain. News that we might have a new problem to deal with was a bit hard to take. Denise comforted us with kind words and told us to stay strong and get through this episode. We would have results this afternoon and, if necessary, add a blood thinner to Shannon's drug regimen to alleviate the clots.

Shannon had her daily healing and then it was off to St. Mary's to have the CT scan. An IV was placed in her arm so that contrast dye could be used. The nurse explained that when the contrast dye goes in, it feels like a hot flash and then you have the sensation that you peed yourself. What a bonus! Shannon made it through just fine and Dan and I only cried a little bit.

Denise called us just a couple of hours later to let us know that the scan was negative - no blood clot. Shannon's aches are most likely the result of fatigue and the medications taking their toll. Just a bump in the road and we should expect those along the way. Listening to her body and recognizing when she's tired is a new skill that Shannon must acquire quickly.

By the time we reached the after school hours, we were all too exhausted to complete what should have been the rest of our day. No work for me, no golf or hockey for Shannon, and no Fireball practice for Dan and Erin. We opted for staying at home and enjoying a Mexican feast that was delivered by our friend Shelly. Grandma Gwen joined us and so did Uncle Mike and Aunt Connie. We were teasing Mike that he seems to be so willing to spend time with us now - especially on Mondays, Wednesdays, and Fridays when meals are delivered!

Dan and I discussed today that we have moved from the shocked phase to the angry phase. Anger might not be productive, but it's real. We're mad that Shannon's not feeling well; mad that she has to curb her activity level; mad that we had a bump in the road today; mad that Erin feels like she's second fiddle; mad that the sun won't shine ...

This journey is so all consuming for us right now that we are out of touch with the events happening around the world. I can't discuss what Kate's dress looked like or talk about the intel that brought down Bin Laden, but I can tell you about the side effects of Temodar and Decadron or direct you to the most convenient spots in the Mayo patient parking ramps! We have to laugh a little or we'd cry all the time.

So, we'll get up tomorrow and start again, hoping for smooth sailing, no bumps in the road, and a little sunshine...

DC Race For Hope

Just a quick Monday morning shout out to Shannon's DC based family: Cousin Kevin and his fiancee Meaghan, Cousin Brendan and his girlfriend Hannah, Cousin Charlie and Aunt Bridgid (who flew in from MN). This gang took part in The Race for Hope yesterday to raise money and awareness for brain tumor research. They were "Sprinting for Shannon". Very cool.

Dan and his brother Tim plan to run the Med City half marathon here in Rochester Memorial Weekend with a similar mission. (Anyone else out there planning to run Med City, let us know and we'll include you in a potential shirt order... still investigating ...)

We are hoping to get some help/relief from Dr. Laack or the nurse practitioner Denise today as Shannon's side effects have started to make her more uncomfortable. She really is focused on feeling good enough to play in the golf meet tomorrow, so that's our goal this first part of the week.

Anger reared it's ugly head last night around here - from all four of us and in different ways. We're mad as hell. But, we're in the midst of the daily grind of fighting and we need to fire up and find the strength to continue. More later ...

Sunday May 1, 2011

We were on a beautiful spot on our earth last night celebrating with our friends the Anglins who own a farm cut through a river valley in Fillmore County.  The clouds cleared right around happy hour and I promised everyone high pressure was going to be in charge for the next 5 days or so - sunshine, good times, the damp cold days of April were behind us.  Now this morning we awaken to window shaking gusts, low clouds and 35 degrees.  God grant me the serenity to accept the things I cannot change...

We are working our butts off to find strength and silver linings and keep the smiles rolling.  In truth, the girls don't afford us much room to whine. 

Erin's Fireballs kept smiling and laughing through a 4-1 beat down in a driving rainstorm. That was how our Saturday began.  The only whining came from the coaches.  The good news is that pictures were postponed and our next 4 games don't start until 10:00am!!! 

The other good news is that Shannon and Grandma and Papa made no attempt to spectate - instead they enjoyed breakfast and WIFI at McDonald's. Shannon's appetite continues to be off the charts.  Her Egg McMuffin "tradition" with Grandma on Fireball game days just might carry us all the way through healing season.

After a hot shower it was Erin's turn with Grandma and Papa - they loaded up the Mustang and headed for Shakopee where E was able to separate and enjoy some Harkins cousin-time.  Erin and her cousin Laurynn Harkins have a serious connection (OK, not serious...in fact mostly super silly).  But a sister-from-another-mother kind of relationship that we are truly grateful for.

That free'd up me and Jen to visit with friends while Shannon played hockey.  Shannon's teammates continue to go out of their way to set her up in these spring games.  She lit the lamp twice Saturday - tried not to celebrate like Ovechkin - but her smile was clearly visible from the top row of Graham Arena's rink four. Olivia, Allison and Maddie seem like they are having fun spreading the puck around and Shannon is quite comfortable camping in front of the net looking for cheesy deflections and juicy rebounds.  Fun stuff.  As for Shannon's back checking... we won't go there...the kid has a brain tumor... cut her some slack.

After the game we ate slices at Mr. Pizza with the Pankows, Grafstroms and Leqves; families that have been along for so many of Shannon's happiest moments over the past several years.  Shannon always loved sports but when she started playing hockey three years ago she blossomed as a person and a personality.

Our challenge continues to be enjoying life without getting sucked into a vacuum of what is to come.  The happier the moments are, the harder it gets to stay in them.  At the Anglin farm down by Spring Valley we hiked, rode mini-bikes, chowed down on soup and hot dogs, burned a fire and laughed a lot.  We have been introduced to a highly efficient, s'more hybrid that I think is the future.  You place your roasted marshmallow between two Keebler Fudge Stripes.  Change is possible...

By the end of the night Shannon struggled to stay comfortable.  She was exhausted but never wanted any of us to see it.  Jen and I can tell.  So the ride home was kind of a downer because the kid was just cashed and telling us about tightness in her lungs and rib cage.  That's how it goes.  Shannon's challenge will be finding acceptance that her body can't rock like her mind thinks it should. We're 10 days into the 42 days of healing.

Today Erin comes home - YEAH - and we are going to see Grandma and Grandpa O'Hara at brother Mike's.  More family time...it's all good!