Thursday September 29, 2011

Shannon has tapered off the steroids.  No drugs for the last three days - and no headaches.  Hooray!  She got to share that good news during our appointments at Mayo today.  This afternoon Grandma and I picked the girls up from school and we headed downtown for bloodwork, social worker appointments, and a checkup with Dr. Rodriguez.  We did all that, plus stopped at the gift shop and picked up Diet Coke and Mentos for Erin's science experiment, and still made it home in time to eat dinner and get to hockey practice!  World class treatment without really disrupting our lives.  Grateful for that.

Shannon's checkup was good.  Her weight is holding steady.  (Unfortunately, so is her height!)  Her white cell counts were down a bit, but this is to be expected.  The cumulative effect of monthly chemo will cause those counts to drop. Not a huge concern at this point, but Shannon will need to continue having them checked twice a month - right before each round of Temodar and then a week or so after completing the chemo cycle.  Best case scenario is that they stay on the low side of the normal range.

Shannon doesn't grumble about having these appointments - it's just a part of her (our) life now and she seems to have come to terms with that. In fact, she is quite at ease on the pediatric floor.  Watching her interact, you can almost forget the reason we're there in the first place.  Shannon - and Erin - brought lots of smiles and laughs to the nurses and unit secretaries today. For better or worse, the girls' humor tends toward sarcasm. (Now, where would they have learned that?)  Luckily, sarcasm  plays well with the staff at Mayo 16.  I'm grateful for that, too!

Monday September 26, 2011

Team O'Hara is hoping for a busy, normal week this week.  It is Spirit Week at the middle school - a lead up to the Mayo High School homecoming festivities.  Hat day, pajama day, etc... all culminating with the homecoming parade and football game on Friday.  Both girls are looking forward to the fun.

Shannon is feeling good, and tomorrow we try again to go steroid free.  Hoping this very slow taper has done the trick.  Erin is feeling better, too.  She's finally kicking her cold and over the weekend she had some time with her pals which brightened her spirits.  Dan is traveling.  I am working.  Just like the good ol' days.

Grandma and Papa Harkins returned to Rochester last night after spending two and a half weeks at their home outside Vegas.  It's good to see them again and have them be a part of our activities this week.  Two soccer practices and three hockey skates are on the schedule.

Thursday we will return to Mayo 16 for blood counts and weight check in preparation for the fourth round of maintenance chemo next week.  Amazing how quickly that cycle comes around again.  Time marches on ...

Saturday September 24, 2011

It's a foggy but lovely Saturday morning.  The house is quiet.  We were out late with the kids at a bon fire.  Fun for all ages at the Lang home following the Mayo HS football game.

A rare chance to sleep in for everyone (including Mom).  We do not have an activity on the docket until a 2pm soccer game in Owatonna.  We cherish these days.  We can leisure around, drink coffee, read and surf the web and then we will power up with pancakes and bacon whenever.

The fog should burn away.  Looking like an ideal fall Saturday for the Upper Midwest;  sunny skies and highs in the 60's.  The leaves are starting to change.  The nights are crisp and clear.  Football weather. 

Needless to say I am feeling really grateful this morning.  We're doing better around here the last couple days staying in that day.  Man, does that approach make it easier.  We have so many things out of our control right now.  Just wildly out of our control.  It's probably easier for my simple mind to stay in the present.  But I can get ahead of the day really quick...I do's not fingernails take a beating.

Our circumstances have afforded us the chance to forward so many relationships.  People have stepped up to help or offer support and taken the time to get to know us.  That has been really terrific.  I am so proud of Jen who is/was mostly pretty guarded - but when you get to know her she is such a solid, fun person.  I have always been pretty much in-your-face - for better and for worse.  But more people have gotten to know Jen because of Shannon's cancer and that has been a gift. 

Change is inevitable - growth is optional.   So, thanks to all the people in our lives who have helped us grow.

Momentum is picking up on the Brains Together for a Cure walk Saturday October 8  Another reminder that Kula Shives is managing our shirt orders (  Jen and I  are pulling shirts for our we will get a note out to the Harkins/Davies and O'Haras asap. 

Have a great weekend everyone!

Wednesday September 21, 2011

It's not easy being Erin right now.  She came home early from school today feeling sick.   She can't quite shake this head cold.  But no matter how bad she feels, she never has it as bad as her sister does, right?  She may feel lousy, but her sister has a brain tumor.  That's a tough act to follow.   People worry about Shannon and ask Erin how her sister is doing.  What is a 10 year old supposed to feel?  How can she process all of this?

It's a parenting dilemma for us, for sure.  How can we tell Shannon to let her homework slide if she needs to rest and then tell Erin no resting until your homework is done?  How can we listen intently to every ache and pain that Shannon has and then tell Erin to suck it up and tough it out when she feels crummy?   (I guess the Mother of the Year Award will have to go to someone else this year ... again!)

Shannon made it through the school day, soccer and hockey without a headache, so we will try to continue the every other day taper this week.  For today, Shannon is fine.  For today, have a good thought for Erin...

Tuesday September 20, 2011

We've had some great response from people wanting to join us at the Brains Together For A Cure walk on October 8th.  We've ordered t-shirts and will sell them on a first come first serve basis and donate the proceeds.  More details to follow on that, but we will be looking good out there in our lime green "Shannon the Cannon" t-shirts! Some of you have inquired about making other donations. Please contact either Kula Shives ( or Ellen Wente ( as they have all the details on the Shannon Fund and Brains Together For A Cure donations.  Thanks.

It has been a perfect storm of stressful situations lately.  In the grand scheme of things, all small potatoes:  Shannon and Erin home sick with the season's first head colds, work stresses for Dan and I, winter sports tryouts for the girls, blah, blah, blah...  Each thing individually is not a big deal, but the cumulative effect is wearing on us.  As a friend of mine said, it's hard to prop your kids up and even harder when your own tank is on E.  It seems so silly to worry about the small stuff - my family is trying to learn to live with childhood cancer so why exactly am I worried about what team my kids will be on?  Am I insane?  Or, maybe that's exactly why I am stressing about the little things - if you don't want to look at the big picture, obsess about all the little pictures...

Shannon is feeling good this week.  The post chemo fatigue is over and her energy has bounced back.  Her Monday consisted of a full day at school, homework and french horn practice, soccer pictures and soccer practice, and finally an hour on the ice at hockey camp.  Today after school she spent her time hanging out with a friend and shooting hockey pucks.  She has plans to double up again tomorrow with soccer and hockey.  We are also going to try again tomorrow to taper off the steroids.  Dr. Rao gave us the go ahead to try every other day for a week and and if Shannon can tolerate that with no headaches, then she can try to taper off completely.  It's a hurdle that Shannon wants to clear, so cross your fingers ... 

Brains Together For A Cure Walk

5th Annual Walk - October 8th, 2011
Rochester Community And Technical College Fieldhouse
9:00am Registration - 10:00am walk
post walk refreshments, entertainment and silent auction

We'd like to invite any friends and family to attend this event and help us support innovative brain tumor research at the Mayo Clinic.  You can pre-register online or register that day.  Here is a link to the website:

Dan and I will be walking.   Not sure about Erin.  Shannon has hockey tryouts at the same time as the walk, but we plan to have her join us after hockey to present a donation to Brains Together for a Cure! 

If you are unable to attend the walk, but would like to contribute, please contact us and we will include you in our check presentation.  Or check the web site for other ways you can help.

Hope you can find time to join us, and if you own an "I Love Shannon" or a "Shannon the Cannon" shirt, please wear it!

Thursday September 15, 2011

For our out-state and international blog followers; it's a crisp, clear 33 degrees this morning with a coating of frost on the ground.  Now that's a little early in the season for a hard frost but that's what we're looking at here in Rochester MN this morning.

As I write Jen and the girls are pulling out of the driveway...a little extra sleep this morning... an extra half-hour with a ride to school instead of a bus ride.  We've been doing more of that this week.  Post-chemo weeks require extra rest. The second week of school always seems to be tougher than the first week.  The novelty of the new school year is replaced by the reality of routine.

Tuesday we struggled with our emotions but Wednesday was much better.  Acceptance that a small dose of the steroid Decadron is necessary to keep Shannon's headaches at bay seemed to have taken hold.  Shannon's attempts at tapering off the steroid will take time.  Patience.  The headaches she experienced Tuesday are not tumor related.  Just part of the slow taper.

Amazing to realize how far we've come; after our diagnosis in April Shannon was taking 6 mg of the Decadron daily.  Today we are down to just 0.25 mg per day.  Hardly enough for side effects.  Baby steps.

(Did you know: steroids were developed at Mayo Clinic and earned Edward Calvin Kendall a Nobel Prize in 1950.)

We had a great night together Wednesday as we shuttled kids around to soccer practices - Shannon chose to skip a late hockey skate.  On the way home we stopped for Scoopie Meals at Culver's.  We were in a goofy mood and laughing at each other loudly.  The tables around us were giving us dirty looks but we did not care.  We got going on a near pee-in-your pants laugh together that felt really good.  Frozen custard always has a positive effect on this family.

Music du jour....Love is Free, Sheryl Crow...Home Again, Carole King...Any Major Dude Will Tell You, Steely Dan.  "Any major dude with half-a-heart surely will tell your my friend...any minor world that breaks apart falls together again...when the demon is at your the morning it won't be there no more...any major dude will tell you..."

Wednesday September 14, 2011

Yesterday was one of those days ... Shannon was so excited in the morning because it was the first time since April that she wasn't going to have to take any pills.  The girls both went off to school happy.   But, by the time we picked Shannon up from school to head downtown for her appointments, her mood had changed.   She experienced a bad headache during the day and she was anticipating what that meant.   She was right.   Dr. Rao would like to keep her on a low dose of steroids for another week and then we will try again to taper to every other day.   If the taper doesn't work without headaches, Shannon will just have to continue taking the steroids for a while.

In the grand scheme of things, everything is going well.  Blood counts are good, Shannon's weight is holding and her neuro exam was good.  But, to a 13 year old girl, all she can see is puffy cheeks and steroid acne and the fact that she has to wear her hair the same style every day to cover up the radiation hair loss.  Add to that the fatigue she's feeling this week that kept her from playing hockey on Monday, and it's easy to see why she's feeling down.  It's hard enough to be 13 without all that extra baggage.  Damn.

But, today is a new day and we will hope it's a better one ...

Sunday September 11, 2011

My Pandora Radio is playing Gary Jules, Mad World.  Seems appropriate today.

10 years ago in this day, I was home with toddler Shannon and infant Erin.  Dan had just left for a trip to Iowa. I had been a stay at home mom for about 5 months - since the previous April when Erin was born.   I often turned on the morning talk shows to keep me company, so I was watching the Today Show when the 9/11 attacks took place.  But, every time Shannon started to pay attention to what I was watching, I would turn the channel.  I didn't want my three year old asking me questions I couldn't answer.  Trying to protect our little girls from the big, bad world...

Our weekend flew by, just like we knew it would.  The girls played soccer under some extreme conditions with temps in the upper 80's both days.  They played hard and we had fun watching them compete.  I find myself not really caring about the outcome, and that's a new concept for me!  I'm usually about as competitive as they come, but this weekend losing really didn't bother me.  Whether it was Shannon or Erin or the Vikings or even Roger Federer, I just can't seem to get too riled up about it.  A little perspective at work, I suppose.

Dan and I have a running joke - "Who's day did you ruin today?"  Or, "Who did you make cry today?"  Just a little gallows humor when referring to sharing Shannon's story.  Suffice it to say, I'm winning this contest this week.  (Ah, there's that competitiveness!)  As I went back to work, I crossed paths with many familiar faces, including a lot of the ladies I teach on Friday mornings.  I got a lot of hugs and kind words and prayers being sent our way.  Same thing with the soccer parents who we haven't seen since last year.  People want us to know that they care and they're rooting for Shannon.  They want to listen if we want to share.  And some people just need to shed a tear with us, and that's ok.  Sharing Shannon's battle with others does lighten the load, but at the same time it's exhausting.

This week will be a test to see how much activity Shannon can handle on a post chemo week.  She wants to practice soccer and play hockey back to back on both Monday and Wednesday.  I wouldn't put it past her to pull it off.  We will see the Hematology people on Tuesday for a weight check and blood counts.  The plan is to hopefully taper the steroids to every other day, but we need to discuss that she's had a few headaches and this lingering ear pain.

Shannon was really tired tonight and she accepted my invitation to lie her head on my lap and let me rub her back for comfort.  I could have done that for hours.

And now Pandora gives me Coldplay's The Scientist: "Nobody said it was easy, No one ever said it would be this hard, take me back to the start ..."

Saturday September 10, 2011

Today Jen and I celebrate 17 years of marriage.  I think its been a pretty good deal for both of us.

It's game day.  Both girls with road soccer games and we are off and running.

Check out the link below to an article in today's Strib.  Shannon just learned this morning that Jerry Kill is a cancer survivor.  I think its pretty safe to say Coach Kill has solid support from our corner of the world.

Happy weekend everyone!

Friday September 9, 2011

It has been a smooth first week of school for the girls. Getting to know their teachers and getting back into the routine. The early rising necessary to make the bus hasn't been too painful ... yet ...

Shannon has been able to tolerate the Temodar again this month and hopefully next week we can combat the fatigue by making time in the after school hours to fit in some resting/napping.

This week has gone relatively smoothly for me, too. It's amazing how productive I can be around our house when everybody leaves me alone! I also taught my first tennis class since April yesterday. It felt good to be out there again.

So the first week of our fall schedule is coming to a close. Homework, soccer, and hockey have filled up the girl's free time and kept us hopping. This weekend will be no different - we have a double double header with both girls having soccer games on Saturday and Sunday. Time to load up the minivan and hit the road. We wouldn't have it any other way ...

Wednesday September 7, 2011

I was one with God this morning as I hiked with Sunny around the Willow Creek Reservoir near our home in Rochester. The sun was bright, the water a glassy calm reflecting a cloudless,  deep blue sky.  Nature was alive all around.  Jason Mraz and Eric Hutchinson play lists on the Ipod with the dog - tail high - weaving in out of the tall grasses,  flushing various birds, bugs and creatures.  My senses sharp in the cool, clean fall air. 

It was just one of those moments when all felt right.  The kids were off at school on day 2.  Jen was off walking with a friend.  I had just finalized a proposal that I will present tomorrow in Morton IL - a promising business opportunity for sure.  Everyone with a bounce in their step around here this week.

Then I returned home and Jen delivered the news that Shannon had called in from school to report a headache.  She didn't want to come home - just wanted us to document the incident as requested from our medical team at WFMC.  Damn.  Shannon's disease is omnipresent.  Acceptance remains the key.

I am not going to allow a headache to take the bounce out of my step.  Still have so much to be grateful for!  More music...more exercise...more work...more activity...keep going...

Gratitude and acceptance.  Stay in the moment.

First Day of School - 2011

Yes, this is the obligatory first day of school picture. Two middle schoolers, and you can see from their faces how they feel about it: Erin, a ball of nervous energy, eager to see what 6th grade is really like. Shannon, a little more subdued, quietly confident about 8th grade.

I am not having my normal first day of school reaction. I was never one of those moms that cried at the bus stop. I was more likely to skip home! (OK, I never really skipped, but you get the idea ...) But this year, I'm a bit subdued myself. Maybe it's because we've had a great summer - yes, I can honestly say that. Maybe it's because Shannon and Erin will be so busy now that the days will really fly by. Maybe it's that my 8th grader is not only managing the first week of school, but managing chemotherapy at the same time.

On the way home from soccer practice last night, Shannon and I were talking casually about the end of summer and being ready for school. Shannon said, "This summer went way too fast. It might be because I was sick part of the time, but it felt like it flew by. And that's not good, especially if I don't have that many summers left." Wow. Gutshot. She said it without tears or drama, just matter of fact about her predicament.

So, yet another "new normal" starts today. And while a lot of it is familiar and back to the routine just like the beginning of each school year, I can't help but feel a little differently this time around. Please let time move slowly ...

Kevin O'Hara Gets Married

The girls had a great day watching their oldest cousin tie the knot. Lots of laughs, and even some square dancing! Congrats to Kevin and Meaghan.

Saturday September 3, 2011

Labor Day weekend, the official end of summer.  The girls are hanging on to these last moments - both managed to sleep in today, and then lamented the fact that in three days time they will be on the bus at 6:50 in the morning!

Shannon and Erin have made the most of these late summer days: sleepovers, school clothes shopping, soccer practices, and a mani/pedi with Grandma so they'll be looking sharp for their cousin Kevin's wedding today.  Shannon managed to find time to take in the Mayo football game last night as well.  8th graders going to the Friday night football games ... I love that her life feels so normal.

We've had lots of reminders lately that while we've been so focused on our lives and what we are going through, other people we care about are facing tough times, too: a friend whose sister has pancreatic cancer, a friend whose husband was badly injured in a bike accident, and just yesterday I heard from a dear family friend who lost her mother way too young.  All these people are supporting us on our journey.  Yes, our kid has cancer and the future is unknown, but there are plenty of reminders that life gives no guarantees.  Shannon feels good today, so we should try and feel good today right along with her.

We've been so busy running around that we haven't had much time to play the iPod lately. But, on this rainy morning, the four of us have been hanging out with the tunes on in the background - Eric Hutchinson, Matt Nathanson, David Gray, Jack Johnson... My favorite lyric of the day comes from the Irish band, The Script, and their song, This = Love: "Time flies, but you're the pilot ..."

Thursday September 1, 2011

Wow.  What happened to summer?

Jen and I have been scuffling with our emotions since our Tuesday consult that showed us amazing progress vs. the pontine brain stem glioma living in Shannon's head.  We are really pleased no doubt.  The tumor had measured around 3.8 cm in April and today is around 1.8 cm.  We saw it with our own untrained eyes. 

The Mayo Clinic radiation team really scored.  I mean, they told us this kind of a response was possible - could happen - but many times there is no stopping a high grade glioma.  Dr. Laack was thrilled...considered it best case scenario.

Dr. Nadia Laack designed the radiation attack plan, carried out by a physicist and a dosemetrist (our friend Janelle Miller, Hockey Mom) and then a team of radiation techs that all made Shannon feel like she was their only patient.  Pros.  All of em.

But that phase of our fight ended in June.  The radiation still might be having a slight effect today.  But for the most part the radiation was the big dog in our fight. 

Closure.  We said goodbye to Dr. Laack.  She is off on maternity leave any day now.

Shannon has received the maximum amount of radiation with minimal collateral damage.  We are so fortunate.  Many people have asked us about proton beam therapy as a treatment option.  The major benefit of proton therapy is that it limits collateral damage.  Our photon beams carried just as much punch as Shannon could have received had  proton therapy been used.

Delivering photon beams to the pons region of Shannon's brain and around the brain stem is quite risky - it's possible she could have lost her taste buds, use of her tongue, her eyelids or some other function that could have altered her lifestyle tremendously.   The photon beam treatment we underwent was administered with such precision that Shannon has had no cognitive side effects to speak of.  Even the hair loss was limited.  So we are extremely grateful for that.

But we are not turning back flips.  I don't think thrilled is a word Jen and I can throw out there to describe our reaction to the MRI.  We are really pleased.  But the closure on the radiation phase of our treatment forced us to look ahead and ask what's next?  That remains one of the great unknowns.

Shannon will keep taking chemo - 5 day cycles every 28 days until April.  Temozolomide or Temodar is really our last line of defense.  Our team has prescribed MRI's every three months now to check out the tumor.  That is good news in itself - an indication that perhaps we are dealing with a lower grade tumor.  If you recall, we opted to pass on a biopsy that would define the biology of the tumor.  We agreed the biopsy was too risky.

So we will keep living in today and work really hard to stay there.  That's really a tough way to live.

The same day we went to see the MRI we had a family meeting with the 8th grade counselor and some key people on the team at Willow Creek Middle School.  They wanted to lay out a plan for the school year for Shannon.  The counselor emailed Shannon's teachers to offer them the chance to sit in.  Every one of them showed up.  It was the teachers second day back at work to prepare for the new year and they all gave us their time and attention and - most important - their assurance that Shannon is in good hands.