Tuesday August 30, 2011

We recieved some great news today. The MRI showed tremendous progress on the tumor in Shannon's brain. It is almost 60% smaller than when it was discovered in April.

Our radiation team did as well as they could have expected. Dr. Laack and Dr. Rao felt this was best case scenario coming out of a worst case diagnosis. The radiation delivered the punch the team had hoped for. The cancer is not gone. Chemo continues to try to stymie further tumor growth.

We are too tired to process anymore tonight. More to come...need more time to absorb...

We want to share more about Dr. Laack's efforts. We want to tell you about the meeting we had with the team at Willow Creek Middle School. Very cool, positive stuff...

Sunday August 28, 2011

My golf game was highly suspect, but my looper was sure cute!

A friend shared a prayer with me that lends perspective to three putts and double bogeys: Don't worry about anything, pray about everything, and thank God for all you have.

Late Night Update

We have written before about how touched we are by the kindness of others. Today that kindness came from one of our doctors. Dr. Keating saw that Shannon's MRI results had come back so she took a look at the scan. Happy with what she saw, she wondered who had shared the results with us. She pulled up Shannon's record and saw that we weren't due to get results until Tuesday. At 4:40pm on a Friday afternoon, Dr. Keating took the time to pick up the phone and put our minds at ease. She said she wanted to help alleviate our PMS: Post-MRI Syndrome - where patients and their families are filled with anxiety while they wait for the results!

We will have more facts to share after our Tuesday appointments with Dr. Rao and Dr. Laack, but a late afternoon call from Dr. Keating let us know that treatment continues to show good results, and that's making for a happy weekend at the O'Hara household.

Friday August 26, 2011

Factoids from the last two days:

School schedules have been picked up - both girls are busy figuring out which friends will be in classes with them. Texting and social networking being put to good use! Shannon and Erin seem happy with their teachers, lockers, and schedules...

Soccer info - The girls have heard from their coaches and it looks like Shannon and Erin both have some buddies on their teams. Practices will start next week...

Hematology appointment - weight and blood counts are good. Shannon keeps pushing to decrease the steroids. Dr. Rodriguez has a soft spot for her, I think, and Shannon convinced her to go down another .5 mg starting Monday ...

MRI - Shannon's third scan was done this morning and we meet with the doctors next Tuesday to see the results. Shannon was in good spirits this am - she's and old pro at it by now. She doesn't seem stressed or worried about the results, so Dan and I will try to follow her lead on that ...

This Weekend - As I write, Shannon is golfing with Papa, Erin is at a pool party, and tonight we head downtown for the Greek Festival. Dan's playing in the city golf championship this weekend and Shannon's planning to caddy for him during Sunday's round here at our home course ...

That about covers it...

Wednesday August 24, 2011

We head home from the lake today and even though there are two weeks left before school starts, this feels like the symbolic end to our summer. And we've have had a great one. We've been places and we've seen people and we've done things and we've had a heightened awareness of enjoying every memory we've made. Gratitude.

This week has been no different: Shannon learning to ski has been a highlight and the last two days she's made runs up and down the bay. We've worked and played around the O'Hara family cabin and the four of us even managed to put in three new dock sections together. Then there was the debacle last night: We were out of our swimsuits for the first time all day, dressed and ready to head into town for pizza and ice cream. Dan couldn't find his glasses and then realized he had jumped in the lake with them on. Back in the water (ok, everyone except me) to do some diving to locate the missing glasses before the sun went down... luckily the glasses were found and we laughed about it (mostly at Dan's expense) over a pepperoni pizza at our favorite place, Rafferty's in Nisswa.

So, now it's time to turn our attention to the things ahead: fall hockey tonight, school orientation and schedule pick up tomorrow and Shannon's next MRI on Friday. It's been easy up here to almost forget about Shannon's illness. She doesn't seem like a cancer patient when she's swimming and skiing and kayaking. But one look at my calendar reminds me otherwise: appointments tomorrow, MRI on Friday, and more follow up appointments next Tuesday.

I'm not sure how this next phase will be as I've been trying to psych myself up to put my energy towards the regular life stuff that's ahead - school, homework, fall sports, work for me and Dan... there's a part of me that wants to just stay on this perpetual vacation and spend all of our time together doing whatever we want, but that' not realistic. Shannon wants to be a normal eight grader, Erin wants to start middle school, they want some structure.

Shannon's health dictated what we did this summer - when she felt good, we were on the move and when she got sick, we circled the wagons and looked to our families and friends for support. I imagine that things will be the same going forward. As long as she's feeling good, we will forge ahead with normal, everyday activities, same as last fall and every fall before that. And I'll try not to waste energy worrying about the giant "what if" that follows us around. Stay in the present and enjoy today...

Monday August 22, 2011

Just another Monday...

We are living life to its fullest up here in Nisswa.  Just the four of us, Sunny the dog, and no agenda.

We spent our Sunday morning worship in Lake Hubert.  Calm, crystal clear waters, sunshine, treading in the deep water on noodles, hangin' out on the beach.  No doubt, God was smiling down.

Then our friends down the beach at the Gustafson cabin up fired up the Glastron and offered the girls their first attempts at water skiing.  Shannon and Erin are veteran tubers but have never attempted old school water skiing.  So after a few attempts:

From skiing we took advantage of free golf at the Garden Course at Grand View where Shannon, Jen and I hit the ball around while Erin played Annie Leibovitz with her new camera.  Lots of laughs...not funny was that Jen clipped me by a shot while Shannon posted a respectable 43.

From golf we drove to find dinner on the opposite side of Gull Lake from Brainerd Int'l Raceway where the annual drag races were pouring out onto Hwy 371.  Steer clear.  We settled on an early dinner at Bar Harbor with the blue hairs and reloaded on sweets at the Chocolate Ox on the way back to the lake. 

The day was topped off watching a kids' choice movie; Soul Surfer about surfer Brittany Hamilton who lost an arm - and almost her life - in a shark attack.  I was not ready to emote, but this story took me there as the family rallied around this determined and stubborn young lady who reminded me of Shannon in so many ways.  The family dealt with grief and faced their tragedy together in different ways...but together.  Also, reminded me of our little unit.  Some did better than others :)   In the end of course, Brittany triumphs and inspires and leaves you feeling hopeful.

Jen checked in at Mayo Clinic Hematology this morning and Shannon's steroid dosage was reduced by another 0.5 mg.  Getting closer to steroid free.  Feeling hopeful today.  And two more days in paradise with a forecast that could not be any better.  Live high!

Saturday August 20, 2011

Nothing eventful happening from the lake.  Unless you consider BBQ chicken, pasta and fresh green beans an event.  Actually, a quick little squall line blew threw as I grilled.  But now the sun is out and the wind is dying and we are in for a beauty sunset.  Might be fire time.  Or do we hit the Ox again for cones??? 

More of the same R & R which has been terrific for all.  Shannon feels great.  Erin is great as usual.  And Jen and I are doing the best we can staying here and now.  That's the best place to live.

Forecast is OK for Sunday but looks like we may see some heat again Monday, Tuesday.  Good thing we have a lake.  Love to all - we are so grateful for our time together!

Friday August 19, 2011

Our first two days at Lake Hubert have been perfect 10's. Warm temps, sunny skies, and low winds which means we've spent endless hours doing this:

Which usually leads us to an hour or two spent doing this:

We have absolutely no complaints about either activity!

Wednesday August 17, 2011

It is early in the am and I am up prepping for our trip to the lake. The weather looks pretty good and the girls are very excited to head to one of their favorite places on earth.

Yesterday's checkup went well - the blood counts are good and the weight is holding steady - even up another pound. Shannon's been working out hard, so she feels like if she's gaining weight, it might be from adding muscle. The Temodar has definitely made Shannon feel fatigued. She told me "I could just sleep all day" which is fine during summer vacation, but may present some challenges once the school year starts.

The approaching school year is causing Shannon some great anxiety. While Erin is quite excited to head back to school, Shannon is feeling apprehensive. The steroids have done a number on her face and the radiation did a number on her hair and now it's almost time to go walk the halls of 8th grade. No matter how many times Dan and I tell her she's doing great and she looks great all things considered, it comes down to how she feels about herself. There were tears yesterday as she let it all out.

So, hopefully a trip to Lake Hubert will brighten her spirits and help us all recharge are batteries before we head into the start of the school year.

Tuesday August 16, 2011

We are going to have a busy final day before vacation.  This morning we are going to weigh in at Mayo 16 and check blood counts after Shannon's second round of maintenance chemo.  We expect that the counts will be good because Shannon has been feeling good.  We will see one of our doctors.  We will update later.

Shannon wants to do her own Myth Busters experiment with the scale at Mayo 16 and the scale at the Rochester Athletic Club (RAC).  At the RAC last week she was pumped when she hit 92.  Today she wants to find out if the scales say the same thing so she can monitor her weight after workouts at the RAC.

Her workout routine has been intense.  Monday she walked 9 holes with her golf league in the morning.  Then she put her soccer gear on and worked on moves, kicked the ball and ran the hills in our yard until her cheeks were red.  Then Monday night we hiked around the reservoir with our friends the Grafstroms.

She was really pumped to see Jim Thome hit his 600th homer.  Shortly after, she lied down in our bed and the next thing we knew she was out.  Never moved her.  The 2nd round of Temodar in her maintenance dosage (260mg) has tired her out.  She has napped more.  But she's tolerated it pretty well.  Eight more cycles to go.  (5 days on, 23 days off)

We are reaching the end of our summer and we are looking to restore order, normalcy and routine to our lives.  When we return from Lake Hubert we will have a few days to prepare for the start of school. 

Ellen Wente delivered our last meal Monday and it was fabulous (a secret family recipe Lasagna, salad, watermelon, bread and a mocha ice cream pie that had no chance of survival).  Ellen ran the point on our meal program along with Amy Pankow as they coordinated families and food that have been delivered to our home since May.  Every Monday, Wednesday and Friday we had a home cooked meal delivered.  I wish I could list off all the families that stepped up for us.  Incredible generosity of time and talent.  We always seemed to get every family's favorite meal.

But it is time to restore order, normalcy and routine to our lives.  The meal program has meant the world to us.  After Shannon's diagnosis we lost our energy and creativity in the kitchen.  I'm a bit of a foodie and love to create...but I just lost my desire. 

Our favorite line over these last months as the clock hit 5:00pm on a Monday, Wednesday, Friday; "The food window is open, look for cars!"  So all we can say to that is a giant THANKS!  Way to pay-it-forward people.  We wish we could have a giant banquet to say thanks back-at-ya.  Maybe some day.

Time to pack...

Friday August 12, 2011

I asked a friend today - if you knew all your relationships were temporary, would you go about your business any differently?  That's where I have been living this week and I have to say I have had a pretty terrific week.

Of course, all our relationships are temporary.  Life is temporary.  Somehow I am at peace with that reality tonight as I write this entry on the eve of my 48th birthday. 

Surrender?  No chance.  Give up hope?  No way.  But acceptance of our circumstances is bringing me peace at this stage of our journey.

And with Erin in Wisconsin with Grandma and her Harkins cousins, Jen and I have been enjoying our Shannon time.  The kid is funny - just a joy to hang out with.

We squeezed in a workout at the RAC, shot some pucks,  enjoyed slices at Mr. Pizza and went skate shopping.  We were planning to trade up for another set of used skates but ended up having Shannon fitted for a brand new set of Bauer Vapors - her first pair of new hockey skates. Thanks to our buddy Bob at Shoot n' Save for making us a deal we couldn't refuse.

After shopping we napped around while watching the PGA Championship.  Then we played nine holes together.

Shannon did not play very well but hit the pin on the par-3 17th at Willow Creek and made the three-footer for her second career birdie. Jen and I were OK on the golf course but loving our Friday night together and not too concerned about good and bad shots.

Perhaps that is why I am in a grateful mood tonight.  Life is good.  And Saturday is my birthday and I get to play golf  while Jen and Shannon paint a bathroom.

Thursday August 11, 2011

No news is good news this week. Shannon is tolerating the Temodar just fine and staying busy with workouts at the RAC and time on the golf course. Yesterday she played 3 holes in the morning with her sister and then 9 holes by herself in the afternoon. She's got plans to get out there again today with me. The golf cart is being put to good use...

Erin just headed north with Grandma Harkins for a couple of days at Grandma's family's cabin in northern Wisconsin. Erin had been debating whether or not she wanted to go without the rest of us coming along, but Shannon and Erin came to the conclusion last night that some separation would be good for both of them!

Today Dan is completing a 1000 mile road trip for work, drumming up some new business that will require a return visit in a couple of weeks. This is how it used to be back before everything changed.

I find myself thinking about my return to work - I am planning to start teaching some tennis again when the fall session begins right after Labor Day. As we've been frequenting the RAC lately, I've been running into my fellow tennis pros. I miss those guys (and gals).

It's time to get out and enjoy another beautiful day...

Monday August 8, 2011

The good news - we don't have to return to Mayo any more this week, just as we had hoped. One and done. The bad news - a couple of blips today that sent Shannon's mood headed south.

First, her weight was down a couple of pounds so she was reminded to keep snacking and keep the weight on. Shannon explained that she has been active and working out and losing a couple of pounds was just fine with her. She wants to feel lean and strong. Losing weight is not an option, though, so a milkshake is in her future tonight.

The second blip was the news that we won't be tapering the steroids during this week because of the Temodar. The doctors don't want to make any medication changes that could muddy the waters during the chemo weeks. We were also told that they may keep Shannon on a small dose of steroids for quite a while. That really bummed her out. Shannon thought the taper would continue every 5 days, and in her mind, she was going to be off the steroids for 10 days before school started. She was hoping that the steroid rash on her face would be cleared up before she hit the halls for eighth grade. It's not bad enough to have a brain tumor, she gets puffy cheeks and acne as a bonus.

So, I did what any reasonable mom would do when her child is down in the dumps - I took her to the store and bought her some stuff. Some new crackle nail polish and a new neon sports bra helped her feel a little bit better. Retail therapy at it's finest!

Despite things not going exactly as she had hoped today, Shannon's still got some spunk. She's currently yelling at the Twins on TV. Same as it ever was...

Sunday August 7, 2011

Medication List - Week of Aug 8 - Aug 14

Monday 8/8
8:00am: Decadron (1mg) & Zantac & Kytril
4:00pm: Decadron (1mg) & Zantac
8:00pm: Kytril
9:00pm: Temodar

Tuesday 8/9
8:00am: Decadron (1mg) & Zantac & Kytril
4:00pm: Decadron (1mg) & Zantac
8:00pm: Kytril
9:00pm: Temodar

Wednesday 8/10
8:00am: Decadron (1mg) & Zantac & Kytril
4:00pm: Decadron (1mg) & Zantac
8:00pm: Kytril
9:00pm: Temodar

Thursday 8/11
8:00am: Decadron (1mg) & Zantac & Kytril
4:00pm: Decadron (1mg) & Zantac
8:00pm: Kytril
9:00pm: Temodar

Friday 8/12
8:00am: Decadron (1mg) & Zantac & Kytril
4:00pm: Decadron (1mg) & Zantac
8:00pm: Kytril
9:00pm: Temodar

Saturday 8/13
8:00am: Bactrim, Decadron(1mg) & Zantac
4:00pm: Decadron (1 mg) & Zantac
8:00pm: Bactrim

Sunday 8/14
8:00am: Bactrim, Decadron (1mg) & Zantac
4:00pm: Decadron (1mg) & Zantac
8:00pm: Bactrim

Dan watched me as I filled the pill box today for the upcoming week and said "I think people would find this interesting. You should post that on the blog." So there you go. This is what Shannon's med schedule looks like as we begin round 2 of the maintenance chemo tomorrow and continue to taper down the steroids this week. Shannon is so responsible about taking these - when I forget, she remembers.

Shannon continues to feel energetic.  She's playing golf again today and yesterday she took part in the last Saturday morning hockey group as well. Shannon said she felt like one of the weaker ones out there, but she looked pretty good to us. We think everything she can do is just a bonus, but she doesn't see it that way.  Good for her.

Erin is feeling better and having a good weekend as well. She went tubing on Lake Zumbro and had a sleepover at her friend's house last night.  She was all giggles this morning when I picked her up. Good summer fun.

Tomorrow we head back to Mayo - bloodwork and weight check and the go ahead for the chemo. I am hopeful that this will be our only trip to Mayo this week. One day and be done with it. Please, please, please...

I continue to catch myself looking too far ahead and worrying. I was rambling on about something or other that may or may not happen and Dan looked at me and said, "You just can't help yourself, can you?" Nope. But I try. Try to stay in the present and enjoy the good that is happening right now.

I had an inspiring correspondence this week with an acquaintance who is going through his own struggles with cancer. He was given a bad prognosis but continues to live with grace and hope.  I strive to live like that, so I wanted to share his words with you:

"Fear comes when we focus on the things outside our control.
Confidence and courage grow as we focus on the things within our
control... I cannot change the fact that I have cancer. It is out of my control.
But I do control my attitude and my determination to never give up.
I will live with gratitude, thankful for all the blessings that I have
been given. Attitude, effort, persistence, and gratitude are always
within my control, and so I focus on them. How long I will live is
outside my control, and so I do not worry about it. Each day I have
is a wonderful gift."

Friday August 5, 2011

Erin is down and out with an ear infection.  Of course, it could have something to do with the countless hours the girl spends in the pool.  She can swim for hours.  But the last few nights have been tough.  We're hoping the Amoxicillin does it's magic soon as Erin has a big sleepover birthday party Saturday she is looking forward to.

It's pretty cute to watch Shannon shift into nurturing mode for her sister.  She made Erin toast and set her up with some ice water next to the bed - and made sure she had the remote.  Then Shannon was off to the RAC where she is completely focused on getting stronger.  She worked with a personal trainer Thursday to lay out a conditioning strategy for her soccer and hockey seasons.  Shannon has a 9-week plan in place.  Look out.

Thursday also included another thorough neurological exam with Dr. Keating - our primary peds neurologist.  Dr Keating said Shannon completed her best testing since diagnosis.  Her eye movements were stellar.  Nothing she found would keep Shannon out of competition. 

Going forward, the neuro exams will alternate months with our MRI's.  At a minimum, someone from Pediatric Neurology at WFMC (World Famous Mayo Clinic) will be eyeballing Shannon every month.  That's a tremendous benefit of being a local patient.  If you lived in Wichita monthly exams would be tough.  Again, the care levels we are receiving are phenomenal.  We are grateful.

Shannon's rebound has allowed me to return to digging up sales activity for my employer, EFS Transportation Services.  In fact, next week I will hit it hard on a trip to Peoria and Quincy IL.  Quincy in August...you kidding me?  Doesn't get any better than that.

Need to add another one to the Shannon Blog play list; John Hiatt Have a Little Faith in Me... "When the road gets dark... and you can no longer see... just let my love throw a spark.. and have a little faith in me." 

I also have to affirm a song my wife recommended a few blogs ago... caught me again this week on a walk... Jack Johnson All At OnceOne of these days we will compile and post the Shannon Blog play list.  It's pretty solid.

And today I leave you with a prayer that really works for me when I get stuck in the muck;

Lord, make me a channel of thy peace;
that where there is hatred, I may bring love;
that where there is wrong, I may bring the spirit of forgiveness;
that where there is discord, I may bring harmony;
that where there is error, I may bring truth;
that where there is doubt, I may bring faith;
that where there is despair, I may bring hope;
that where there are shadows, I may bring light;
that where there is sadness, I may bring joy.
Lord, grant that I may seek rather to comfort than to be comforted;
to understand, than to be understood;
to love, than to be loved.
For it is by self-forgetting that one finds.
It is by forgiving that one is forgiven.
It is by dying that one awakens to eternal life.

Tuesday August 2, 2011

August brings one of those tasks by which us moms mark time - shopping for school supplies. Erasers and pencils and markers and folders and just the perfect binder. It only took 5 different stores to almost complete this task. If we could just find the elusive yellow notebook, we'd be set!

Our appointments yesterday went well. Shannon's weight is back to where it was the day she was diagnosed and her bloodwork was good. Shannon enjoyed sharing the gifts she had brought back from San Fran with her medical team - some sourdough bread, some Ghirardelli chocolate, and a picture of Shannon behind bars at Alcatraz.

The only part of the appointment that didn't go as we had hoped was the tapering of the steroids. Shannon wants to get off the steroids ASAP, but her medical team is taking it slow - going down just a half a milligram every 5 to 7 days. Shannon is feeling good and not experiencing many headaches and they don't want her to take any steps backwards. With this cautious approach, it will take about a month to completely taper off the steroids.

Shannon's energy continues to build and she's gaining steam this week - working on her golf game and her fitness. She's thinking about this year's hockey season and next year's golf season. I have to keep reminding myself, it's ok for her to think that way. She can until she can't, right?

As Shannon is gaining steam, I am lying awake at night. Things are going well, so it must be time to fret! I am thinking about Wednesday's neuro-opthamology appointment and Thursday's neuro exam and next week's chemo and this year's hockey season and next year's golf season... I guess I haven't quite mastered the concept of staying in the present.

But, if practice makes perfect, I'm bound to improve because this is how it is and how it will be: the calendar will be filled with appointments and medications, but that doesn't need to keep us from enjoying today. Today was a good day and tomorrow can be one, too...