Friday April 29, 2011

I was a bit agitated today. Overall, things went fine – Shannon went to school, Erin went to school, Dan worked, I worked… but, today was just hard. People irritated me. Things irritated me. I’m sad and mad at the same time.

Shannon is really processing what she's feeling and she's being more honest about what she wants – and what she doesn’t. When the day starts with a conversation on the way to school where your 12 year old tells you she doesn’t want to end up in a hospital bed, that she wants to pursue treatment but not at the expense of quality of life, that she wants to have the ability to do the things she loves until the day she dies, well, maybe that’s why I am sad and mad today. There are so many questions about what's ahead for her and us and there are no answers. It must play out over time. Tough, tough stuff…

A group of Shannon's friends had rubber bracelets made (think Livestrong). They are lime green - Shannon's favorite color - and they say "Shannon the Cannon" on one side, and "Fight Like A Girl" on the other. A pretty cool gesture of support and we are all sporting them proudly. Shannon was going to bring one for each of her buddies at her lunch table, but by the time she saw them, each of them was already wearing one!

Shannon came home early from school today with a little nausea, but it was easily fixed by getting something in her stomach. We joked about her snacking her way through the day to keep her tummy settled. Before she jumps in the car to head somewhere, she stops at the pantry first!

Healing went well – we were in and out in 15 minutes flat today. Not too much chit chat as everyone wanted to get on with things and get out and enjoy the sunshine. In the afternoon, Shannon, Dan, and Papa enjoyed the nice weather by getting out on the golf course and playing a few holes.

There will be days like today. I just have to accept that. This journey is hard and overwhelming and sometimes we struggle. But, sometimes we have enough strength to buoy the others. We take turns protecting. We take turns having perspective. Sometimes it's me, sometimes it's Dan, sometimes it's Erin, and often it's Shannon. It wasn't my turn today, but tomorrow is another chance to get it right.

April 28, 2011

Just back from our Thursday Mayo day with Shannon - today's special guest was Erin O'Hara!  It was great to have her along for our appointments with Shannon's team.  It is a bit draining to go from appt to appt to appt...  But Shannon would rather pack them into one day and keep the rest of the week more normal with only a radiation/healing session to manage between school and golf.

Shannon is going along nicely considering she has a brain tumor.  Her neurological exams were strong, her blood work was holding solid, very few side effects so far from chemo and radiation and she even gained a few pounds which made us all laugh.  Basically, we are eating dessert with every meal.  "Yes, I will have the poached eggs with some hash browns and fruit and how about an ice cream pie, thank you."  It's unreal.  You people are killin' us.  Keep it up!

We continue to be grateful for many of the blessings in our lives.  We talked about that with our social worker today; one of the ways to transition into restful sleep at night and stay stuck in the present is to end the day by recollecting what made us happy today.  I like that.

OK, to all of our friends and family who enjoy the music of our lives;  I need to insist you add the Jason Mraz record We Sing We Dance We Steal Things to your collection.  The song Live High represents so much good to me right now - it's all about gratitude.  I've played it about 50 times this week.  Live high, live mighty, live righteously...takin' it easy...

Wednesday Evening

As Shannon’s friend Samantha would say, people’s generosity is AH-MAY-ZIN. All this support gives us strength and makes us want to continue this journey with as much grace as we can muster.

But, there are moments when grace is hard to come by. Even the perpetually smiling Shannon has her moments. Last night, Shannon’s mind wandered to the what if: What if I lose my coordination? What if it gets harder to be a good student? What if this is the best I ever feel again? Her tears came, and I didn’t have any answers. And I’m usually in charge of having all the answers - just ask my husband!

This morning Shannon said it felt good to cry, but it feels better to smile and laugh with her friends. She had a new normal day of school, healing, and golf practice. Tonight another wonderful meal was delivered and then some TV time watching the Twins and playoff hockey. We're in good spirits tonight.

Dan's parents arrived safely back in Minnesota. Dan had a brief conversation with them and they are exhausted from their trip and shocked about Shannon. After such a long day, it was hard for them to verbalize their emotions over the phone. Hopefully we'll find a way to get together with them in the next few days.

Tomorrow is the weekly day of appointments. Erin is going to join us so she can put some faces with names when we talk about Dr. so-and-so, Charlton Desk R, etc… This is her fight, too.

On the agenda for Thursday: weekly blood draw, weekly hematology/oncology appointment, an hour with the social worker, daily radiation, and our weekly radiation/oncology appointment. Also, we have two additional appointments tomorrow. Once a month, Shannon will do an infusion therapy to protect her lungs from infection/pneumonia because the immune system is compromised by the chemo. We also have a one time appointment with a Radiation Oncology Educator to give us information about managing side effects of the radiation.

So, by my count, we have appointments at: 8:00, 8:30, 9:30, 10:00, 1:00, 1:30, and 2:30. Erin’s going to wish she had just gone to school instead!

Week two, here we come.

Temporary Housing Secured!

I am compelled to jump on here and post so that people know that my parents are all set on the housing front. Since I posted that they were looking for a place to live, we've had 6 different offers to help! People are so kind. Grandma and Papa’s old neighbors arranged a housing option that is ideal. OK, as ideal as it can be in this situation. As I write, they are already moving into their new “summer vacation home” – an empty townhome on their old street just across the golf course from us. Just a short walk or bike ride away... that is, if it ever stops raining! Thanks to all of you who offered to help.

April 27, 2011

Good Morning from the home of the Indy 500, the Indianapolis Colts, the Butler Bulldogs and the world-famous Indy O'Hara's.

I need to take a second this morning to share about my employment situation.  What kind of a company would send a sad dad on the road - away from his wounded and healing family?  I just want to make it clear that my mini-trip to Indianapolis was my call alone.  In fact, my manager and the big boss have told me to do what I have to do for my girls.  If that means working from home, not working at all or traveling as needed, whatever. 

Add the good folks at EFS Transportation Services, Memphis TN to the growing list of amazing blessings in the lives of Erin, Shannon, Jen and Dan O'Hara.

About 6 weeks ago I was working in Indiana and added a couple new opportunities to my pipeline that required at least one more face-to-face meeting.  These are the kinds of opportunities that will keep a sales guy's direct deposit hitting on the 15th and 30th.  So, that's why I am out here this week.  The airfare was booked and the appointments set weeks in advance. 

That's how it works for sales guy; you make a connection and you pursue the connection until it dries up.  If I've learned anything over my 12 years in sales its that relationships sell deals.  Relationships are really hard to establish and grow if you are in the fetal position in the corner of your home office. So I'm out here selling.  Just a couple really meaty appointments.  My cold calls and prospecting can wait.  I'm pretty sure I will not be out selling every week while Shannon's is in treatment...or healing.

Van Morrison, Golden Autumn Day...and I'm pretending that it's paradise...on a golden autumn day...

So I will be back on the ground in Rochester today by about 3p central - plenty of time for the Fireballs practice!  The girls barely missed me - I saw in the forecast that Shannon's golf meet was going to be rained out again because spring is MIA - so I made my trip.  But that's about to change.  I sense it.  Jet stream a changin'.  It's comin' people!

So, I just wanted to tell you about my work situation which is really great.  I'm out here for a quick trip because that is what I do and that is what my family needs me to do.  Plus, I think I might have actually sold something this week!

I checked in to my hotel last night and took a visit from several of my Indy O cousins and I was able to be with family.  That was great.  Of course, they are just crushed by our news - we are big family people us O'Hara's.  Big giant hearts - hell we cry at a good Alpo commercial.  The Indy O's are a family of 11 kids...I am the baby of get the picture.  Our other O'Hara cousins are part of family of 13 kids. Family reunion's are held at major venues.

Speaking of, my Mom and Dad return to Minneapolis from Ireland tonight.  They will hear about Shannon's tumor for the first time tonight at around 8pm.  Pray for Ed and Tess to have strength.

Tuesday Afternoon - April 26, 2011

Shannon is just this life force right now – brightening up people’s days all around Desk R at the Charlton Building. They love her! Grandma and Papa tagged along to treatment today. Oh wait, Shannon told me she doesn’t like the word "treatment". She prefers we call it “healing” instead. So, Grandma and Papa tagged along to healing today and met the team that is working with Shannon every day. They saw the room where the radiation is delivered and even the radiation mask with the built in smile. They also met Shanan the Scheduler who said with great enthusiasm, "It's Shannon the Cannon!"

We consulted with Dr. Laack briefly today and Shannon explained some of the symptoms that are causing her sleepless nights and early mornings. We are going to taper off the steroids a bit these next three days before our next appointment with Dr. Laack and see if that helps.

The golf meet was canceled again by crummy weather. Coach Myhro plans to give Shannon the opportunity to play next Tuesday now. I’m hoping it works out one of these times!

Dan managed to get on an airplane and go to work this morning. As we’ve said here before, life must go on. I am hoping his day is full of activity and his mind is busy and not wandering to thoughts of “missing out” on the “healing” here at home.

I’m also hoping today is a better day for Erin. She was sad yesterday. She is caught in this tornado that is our life right now and she has even less control over what is going on than the rest of us. So, I’m hoping she comes home this afternoon and reports of a normal day at school.

I seem to be doing a lot of hoping today... hope is good ...

Protecting My Young

Who knew I would not only be Shannon's mother, but also her publicist? At this time, there will be no story on KTTC. No story in the Post Bulletin either. Not now, not yet. In a year, hopefully Shannon is still on the Mayo girls golf team and the support from her teamates has helped her to persevere, and then maybe there's a story to tell. For all of us. But, playing in a JV match tomorrow is a personal gift from Coach Myhro and his team to Shannon to lift her spirits. And she is excited and it is bringing her joy. Now, about that weather forecast...

My dad arrived today. He's drove a car back from my parent's home in Nevada so he and my mom will have their own wheels from here on out. 1600 plus miles in two and a half days. Next on the agenda is finding them a temporary Rochester home. They lived here until 4 years ago when they retired out West. Now they can't imagine not being here. And we need them.

I've lived in Rochester my entire life (except for the college years) and I've never needed the Mayo Clinic. Sure, my mom worked as a nurse, so it helped pay the bills in our house. And sure, we delivered our babies at Methodist and treated our ear infections and strep throats through the Family Medicine department, but we never needed it. How different would our lives be if we had to uproot everything to pursue this kind of treatment? As we walk the halls at the clinic, we see people from all over. And here we are, living in our own house, shopping at our familiar grocery store, going to our jobs. (Yes, I actually managed to teach tennis for a whole 90 minutes today!) Shannon goes to school, gets picked up at 12:35pm and is done with radiation and home by 1:30pm. Not every kid being treated at Mayo has that. For that, we are grateful.

Another great meal appeared at our door tonight. Grateful for that, too.

A few people have asked us to continue to share our musical selections. On this Monday, I've gone with an all Jack Johnson playlist. Today's favorite for me - All At Once:

All at once, The world can overwhelm me
There's almost nothin' that you could tell me
That could ease my mind
Which way will you run
When it's always all around you
And the feelin' lost and found you again
A feelin' that we have no control

April 25, 2011

4:20am...time for more blog therapy.

As painful as Palm Sunday was - Easter Sunday at St. John the Evangelist was wonderful.  On Palm Sunday none of us could stop crying, but Easter was incredibly uplifting and the klenex stayed in-pocket.  Fr. Mahon's homily was just what I needed to hear; people in pews everywhere have stuff  but Easter is the story of hope right NOW.  We were asked if we would want to present the gifts - Shannon said sure.  I think we are pretty much committed at this point to publicly fighting this battle.

That is a source of tremendous conflict for me and Jen.  Ten days into Shannon's devastating diagnosis we are still working through so many issues and emotions.  How could we be parading these out in front of our world?  I don't know.  But I will tell you that so many of our friends - and especially family - are telling us to keep it up because it is working for them.  And I know most of the time it is working for us too. 

My Ipod mood this morning is old-school.  The genius setting is finding classics; Carole King, Cat, James Taylor, Billy Joel, Tracy Chapman, old Elton John... Harmony and me - we're pretty good company...

Shannon's golf coach Mr. Myhro called to tell us the media is on Shannon's story. Someone called the KTTC tipline.  Oh Jeez.  Mr. Myhro seems to feel Shannon's Mayo teamates are good with this - I think he is being really nice.  I am super sensitive about this.  I called my old friend Chuck Sibley - the greatest photog in the history of TV news - and shared our concerns and discomfort.  In my opinion, if Shannon's story making the air creates even a single resentment or distraction it's the wrong thing to do.

Shannon is in Mayo's JV line-up again for Tuesday's triangular with Lourdes and JM.  KTTC wants video.  Shannon just wants to play and experience the competition.  KTTC has a morning show a 5,6, 9 and 10 and a web-site and an assignment editor (do they have one of those anymore?) facing tremendous pressure to get human interest stories on the air. Live, local...blah, blah, blah.  I do get it. 

Then we asked Shannon about it.  She surprised me when she expressed a desire to share her story.  We need to revisit this later today when she is in a different mood to be certain.  Here is this confident, beautiful little person loaded with personality and she thinks she might want to tell her story.  If her story lifts the spirit of one person - or one sick kid - it's the right thing to do.  As a parent, I am really torn.  As a sports fan, a viewer, an adult male 18-50, I would watch.

Van Morrison, Days Like This... (I swear these songs keep coming up exactly when I need to hear them).

Here's what I conclude now that I've blogged it out; while Shannon is healthy, strong and capable of expressing herself, why not?  I want everyone to know her like we do. However, sounds like Mother Nature may take care of the issue for us - rain, heavy rain is predicted for Tuesday.

Brother Mike and Connie hosted O'Hara's and Harkins' for Easter.  There were cousins and aunts and uncles everywhere.  Ham, turkey, salads, potatoes, carrot cake and pastries from Daube's courtesy of brother Pat from AZ...a feast...a celebration!   Erin had a great time.  Shannon had a great time.  Jen had a great time.  I had a great time...then I got kinda sad.  At home later we grilled and decorated our cooler for the meal-droppers and we laughed and I felt better.  We went for a bike ride and - oh yeah baby! - we ate ice cream.  Lent is over!

Being surrounded by family just feels so right at this time.  But love hurts and that's when I get sad.  Just for a minute though.  Then I have to buck-up because Shannon ain't got time to bleed!

OK, I gotta do some work this week.  I need to run to Indianapolis for some meetings, Jen has hours to cover at the RAC and for the first time chemo and radiation treatments will pound on Shannon for five days in a row.  The Fireballs will need to have productive practices. 

Life goes on.  It has to. We're just getting started...

Easter Morning

Shannon is up and at 'em early again today. We had a good night last night. Erin went to her friend Emily's to die Easter eggs and giggle. Shannon went to the rink to play hockey. For the first time since her diagnosis, she was just there to skate and play. Everybody knows now, so there's nothing new to say until something changes. And she scored. Backhand, 5 hole ...

Dinner at John Hardy's Barbecue, then home to lie on the couch and watch the Bruins/Canadiens game. Same as it ever was.

Everyone slept hard. OK, everyone except me. I realized late last night that for the first time since I became a mother, I didn't prepare Easter baskets for my girls. The Easter Bunny gagged. But, as my friend told me on the phone last night, I better cut myself some slack on that one. So I will.

Happy Easter everyone.

April 23, 2011

I'm really struggling today.  With acceptance, with the April from hell, with Charter for not having the pay-per-view title we want.  Just not feeling the strength I had earlier this week when I knew our fight was going to require tons of it.  Our "new normal"  pisses me off. 

Shannon is getting an early taste of the "discomfort" the drugs and radiation will require her to endure for the next 6 weeks.  Her stomach has really been bugging her especially later in the day.  She thinks she can feel the drugs working behind her eyeballs.  Brother Tim, Suzi, Maggie and Sean were with us Friday night surfing around between NHL and NBA playoff games.  Even the Twins rainout pissed me off since our night was built around eating pizza and watching the Twins.  But listening to Shannon talk smack with cousin Sean is worth the price of admission.  Seanny likes his NBA.  Shannon likes hockey players.  Funny stuff.

This morning the Fireballs lost 4-3.  A really good building block experience for the squad.  We need to work on throw-ins and corner kicks, for sure.  The 5th graders had fun.  But the field was soaked and it was 42 degrees and drizzly and someone...someone...anyone please make the sun shine.  I need to feel it on my face and find strength.

Shannon and I slept in our big bed together last night - she was beat.  We both were out by 9:30.  At 5:00a I awoke and she was awake and we had a good talk about the pain and the anger and the sadness and that is OK to let it go every once in awhile.  And we did.  She was just full of chatter.  She felt great and had energy and was craving an Egg McMuffin from McDonald's.  I think she wants to get up and get after it before taking the chemo that creates the feelings inside her that are unfamiliar and uncomfortable.  So my sense is that our days will start early.  I am in. 

Shannon and Grandma watched Erin's game from the sidelines in about 10 layers of clothes and blankets and that also pissed me off.  So we are canceling our T-Time at Soldiers Field to play a practice round on the front 9 where Shannon will play a JV match for the Mayo Girls Golf team Tuesday.  Oh well.

Ipod to the rescue again; Cat Stevens, Can't keep it in.  Perfect.  I'm up for your love, love heats my blood.

Tomorrow is Easter.

Friday April 22, 2011

A quick note about our first day of the "new normal" schedule. It went off without a hitch, except for Mother Nature cutting golf practice short. I'll add Her to the list of things out of our control.

My goodness, Shannon is strong willed. (Some might call her stubborn.) She needed to get to school early so she could "get on the same page" with her teachers - her words, not mine. The teachers are encouraging her to cut herself some slack. She wants to do things by the book and complete all her assignments. Hmm, I wonder where she gets that ... it must be from her dad.

We received nice notes from both girl's teachers and administrators today just making sure the lines of communication remain open as we go forward and that our kids needs are being met. So grateful for that support.

Dan and I got both girls off to school, and then he managed to clean up our kitchen for the first time since people started bringing goodies to us last Saturday. Trust me, that was quite an accomplishment. It's the small things...

Shannon completed her now truncated school day at 12:35, including taking three separate medications at school, and we were off for day 2 of radiation. She already has the hang of it: check in, get your beeper, it buzzes, you go back. Put your ipod on their dock, get locked into place on the table in your mask, listen to three songs or so, and it's over. If you twitch or wiggle, the GPS makes the table adjust slightly so the radiation beam is hitting the tumor. Grab your stuff, stop at the scheduling desk and find out what time your appointment is on the next weekday. Routine ...

So, that's the "new normal", at least until further notice. Tonight, we enjoyed a short visit with some family offering support to Dan and I and company for the girls, and then it was time to call it a day. Shannon was tired tonight and her stomach unsettled. Lots of chemicals being pumped into that little body now. Perhaps the first inkling of what's ahead ...

No profound thoughts from me tonight, just the facts. Time to try for some sleep. Erin's soccer team kicks off the season tomorrow at 8:30am. Go Fireballs!

Good Friday

Isn't Easter all about The Miracle?

Thursday April 21, 2011

OK, my turn to take a stab at writing these words. It's not as easy for me to put myself out there emotionally as it is for Dan, but as we keep saying, in our "new normal" so many things are different. So here I am writing a blog for all to see ...

Today was the day that treatment began. First up, blood draw where the results showed, as Shannon said, "I am really completely healthy except for this tumor". Yep. Next appointment was back in hematology oncology with Dr. Khan for a consult and to receive the prescriptions for anti-nausea meds and the chemotherapy drug Temador. Shannon had lost 5 pounds since Friday, so even though she has been attempting to eat healthy to keep her strength up, Dr. Khan said throw in some high calorie foods. Finally, an area I know something about. Shannon can't wait until Sunday - she gave up ice cream for lent, so once it's Easter, packing in the calories gets a whole lot easier!

We also met with a social worker for the first time and Shannon shared some thoughts but also spent plenty of time looking at Mom and Dad to see how we were reacting and protecting us a little, no doubt. We will meet with her weekly and separately which hopefully will give Shannon an outlet. Up to this point, Shannon has had such grace and composure through this all. I want to scream and swear and complain and she keeps it together almost all the time. As my dear friend tells me, our kids are always showing us how to live ...

The next appointment was a first time meeting with the surgeon, Dr. Wetjen. Despite my joke about surgeons (sorry to any of you out there reading this) Dr. Wetjen was actually very nice! But, his news was sobering, even if we had heard it before. No need to biopsy, we know what it is and it's a bad tumor in a bad place. If there was a clinical trial somewhere that gave us a better chance, he would send us, but there isn't. For the first time the thought of coming up with a Make a Wish idea was addressed. I ... can't ... go ... there ... yet.

Lunch time was spent haggling with the insurance companies to get prescriptions approved so that treatment could start today. Taking the chemotherapy pill is suppose to coincide with the radiation. I'll spare you the nuts and bolts of it, but tracking down doctors to re-write prescriptions was no easy task. In the end, the Mayo Pharmacy made it happen, hallelujah! At 3:30, Shannon was off to her first radiation treatment. One of the hockey moms who works in the radiation oncology department was there to walk Shannon through it and put her at ease. I am so grateful for people's kindness. This is a woman whose daughter has never been on Shannon's team and I knew of her daughter, but had never met the woman before Tuesday. Now, here she is answering any questions we have and being with Shannon as if she were her own child. Unbelievable.

By the time we got home, Grandma had handled getting Erin on and off the school bus, made an after school snack, and helped with homework. (Except for that pesky 5th grade math that was a little beyond Grandma) Each of the next 5 Thursdays will look something like today with weekly check ins with each team of doctors, the social worker, blood work and still the daily radiation.

Tonight Shannon was absolutely exhausted, but she did share this funny story. When they made her radiation mask on Tuesday, she was smiling. So now, in order to make the mask fit effectively, she needs to smile through 42 radiation treatments!

We enjoyed a great drop-off dinner by some hockey friends, the Pankows, and we are trying to get our arms around accepting this kind of help. Our friend Ellen Wente is managing this for us. The "new normal" includes letting other people decide what's for dinner.

Now that we have this blog up and running and are ready to share, it's going to be kind of boring for the next few days, we hope. Dan and I both need to find a way to work a little and sleep a little, Shannon will go to school for four hours a day, head to radiation, and then if she's feeling up to it, off to golf practice. Erin is gearing up for the Fireballs first soccer game on Saturday.

The world spins madly on ...

Wednesday April 20, 2011

(This was originally written as an e-mail to family)

When tragedy strikes there are so many things that come up.  Things you would never consider - mostly rooted in incredible efforts of support.  Tonight I am kept awake by this concept of communication.  So I grabbed the Ipod and the laptop and headed for the fireside recliner and I write.  I'm learning that writing is really good therapy for me.  You should know, nothing is sent without Jen's blessing and her most practical and sensitive editing.  That's good.  No doubt - I need a filter!

Today we had a mostly great day with the girls.  There was downtime to rest up for Thursday for Shannon and family around in small dosage.  There was a soccer practice with Erin's Fireballs that went really well, fun.  We play our first game Saturday morning and Jen and I - along with our good bud Bart Grafstrom (Bloomington Lincoln class of 1981 same as Dan) - are coaching and think we might have a really fun group.  Coaching rec soccer can be a challenge.  You just never know how 11 girls from all over SE and SW Rochester will blend.  So the Fireballs will become part of our narrative over the next 6 weeks...ironically the season will pretty much span the exact length of Shannon's radiation treatments.  Our one crack at frying the shit out of this damn brainstem glioma.

We returned from Wednesday night's practice to find Aunt Connie, Grandma Gwen and Aunt Megan folding our clothes while watching Secretariat with Shannon.  The scene brought me to tears.  So special.  Honestly, just a little snapshot into our completely whacked out new life.  But there is gratitude and a new appreciation for amazing little things going on all around us.

So back to this topic of communication.  Jen and I are learning how deeply embedded we are in this community.  I suppose, both of us were born here and both of us have worked in fairly high profile professions for many years in Rochester.  I spent 13 years on TV and Jen has taught tennis to literally thousands of kids over the last 20 + years.  Many of them sons and daughters of so many of Mayo Clinic's brightest stars.  Go figure.  Jen's nearly photographic recall of names and faces of kids she has taught over the years never ceases to amaze me.  Just like the other day when I shared that our radiation oncologist Dr. Laack came in to tell how how she was going to attack Shannon's tumor and Jen asked; "Are your sons Soren and Xavier?  I taught them tennis!"  I know personally, nothing softens me up like someone that tells me they know my kid.  I sensed Dr. Laack was taken aback.  Cool.  What a blessing.

So needless to say there are alot of people that know us.  Know of us.  And it seems as though they all want to know what's going on with Shannon - all at the same time and we are kind of freakin' out about how to manage the communication.  How can you be mad about that?  In our new whacked out world, nothing softens me up like someone that asks me how my kid is doing.

But so many people feel compelled to tell us what they would do.  How Caringbridge was a great forum for them when so-and-so's son or dad was sick.  Did you know there is Caringbridge?  Did you know Mayo Clinic offers a site for you to communicate information to family and friends?  We get it.  And we know you want to know what's going on (not allowing a Jen filter here) but we're not here to provide you a forum for you to feel better about yourself by posting a reply that is more profound than the one above it.  We have witnessed a couple experiences with these types of forums where the site just gets hijacked by people who want to feel better about themselves by going on and on about a kid they've never met.  Another risk we have learned from others is that after a couple weeks or so if you become just too exhausted to post - then the replies come enmasse: "what's wrong?  Is everything OK?".  Still I know many others have had tremendous experiences with those sites. 

That's kind of happened on Shannon's Facebook a little.  Today she just lied around and didn't even try to keep up.  Jen recognized that maybe Shannon is realizing the gravity of the situation based on the way people are posting.  We hope that's not the case.  We were hopeful that it would be a source of inspiration for her.

Don't be confused.  We are so touched by the outreach.  We are just exhausted by all of this and tomorrow is just the beginning. In my recovery program we talk all the time about planning the action not the outcome.  I know, I'm guilty of planning the outcome.  So Jen and I are sounding this out. 
Today's song that I love and have played over and over; Ingrid Michaelson's Maybe. Klenex please.   Remember when you first fell in love and EVERY song seemed to have lyrics written just for you?  That's where I am right now.  I too have been finding Jen reclining with music in her headphones more and more here over the last few days.  It is how she has been ending her day. That's great.  She loves her music and her playlists are where I find goodies like Ingrid Michaelson.  Jen is so cool.  My inspiration.  Our leader.  Shannon and Erin are just budding with confidence and self-esteem - in part because of that great security blanket they call Mom.  

I'm not sure how much longer I can blubber like this, I'm not sure I can hold up and keep finding the energy to write.  But it seems as though if I just get started it all comes out.  That's the other challenge; I probably will require more filtering for a publicly posted blog.  That sucks :)  But we'll see - once again - plan the action not the outcome, right?

So tonight we put the kids down and came up to log off, listen to some music, wind down and prepare for a big day tomorrow - and we hear footsteps coming up the stairs - it's Shannon closely followed by E. With really bright eyes - not a hint of tearing or sadness - Shannon says; "OK, I need to know right now - am I going to die in the next 6 weeks during radiation?"  Oh my God.  Poor little angel.  We assured her that the next 6 weeks were going to make her feel better - that the radiation and chemo might wear her out after a few weeks but initially she will feel really great.  And then we will see.  We assured her that the reason she pounded out the MCA's was to be set up for 8th grade...we'll make choices on sports, activities, etc. based on how we are feeling at that time.  Day at a time.  Oh, we love that kid sooo much.  She has taken on an almost angelic persona with her words and actions.  God has blessed us with so much...but sonofabitch...

Jason Mraz A Beautiful Mess is now playing...

OK - It's go time!  We're coming for you get your shit and get!

Tuesday April 19, 2011

(This was originally written as an e-mail to family)

Another update from Willow Lane.  Things are coming together with Shannon’s treatment plan and Thursday is a massive day in her life.   But until then we have a little normalcy.

Miracles are everywhere - we came in to meet with the radiation oncology team this morning at 8a and they are pretty much all hockey Mom’s and they were waiting for us with hugs and tears. 

So for today’s appt to set Shannon’s mask that will hold her head steady during radiation one of the Mom’s took Shannon away while the other one – who happens to be the dosimetrist  on our radiation team - stayed with Jen and I to chat.  Shannon was in and out setting the mask in about 12 minutes.  We took a quick tour and saw the technology that is providing us with hope.  Pretty friggin’ amazing machines.  I hope you never have to see one J They then brought us to the scheduling desk controlled by a sassy gal named Shanan.  That Shanan will play a key role in getting our Shannon the best tee times (OK for non-golfers treatment times). 

Dr. Laack checked in and answered a couple questions and we were out of there by about 8:40.  Then we were off for Willow Creek and Shannon was thrown in the conference room to take the MCA’s which she said went just fine!  She was in school all day.  Took the bus home with her friends.  She got off the bus with another  stuffed animal and two giant get well banners with signatures and smart-assed middle school comments.  (And random signatures celebs like Megan Fox and Adrian Peterson).

Wednesday Shannon goes to school all day and then to golf practice…nothing at Mayo.  Today’s golf match was snowed out but that frees her up to skate tonight with her spring hockey team.  She’s pretty jacked for that.

We had to manage through a couple complicating situations that came as a result of people caring so deeply for our family.  We are overwhelmed a little by all the offers to help us and to honor Shannon.  It’s just a little too much too soon.

Let’s get through Thursday;  baseline blood draw, hematology appt and chemo scrip, surgical consult and hopefully first doses of radiation and chemo.  That’s not certain so pray for that.  If we can’t start Thursday, treatments will not begin until Monday.  God grant me the serenity to accept the things I cannot change…

We just can’t express how much we love you all.  The support is amazing.  Just friggin’ amazing.

Monday April 18, 2011

(This was originally written as an e-mail to family)

Feeling a touch overwhelmed tonight.  The outreach has been amazing, exhausting.  So many ups and downs to manage.  Shannon just fell asleep in my arms wrapped in a new Twins fleece blanket cousin Laurynn gave her last night.  The Twins were still ahead while she was awake. 

Today was another good one to check off.  Jen and I met with school admin and teachers at both Willow Creek Middle and Bamber Valley Elementary.  A paragraph on each meet would not cover all the cool stuff.  Shannon and Erin are loved very much at both schools.  Unreal.  Shannon can call her own shots to get through the year.  She wants to be there as much as possible.  She can take the MCA - state standards - in a conference room with some comforts afforded.  When Shannon told the WC team she wanted to excel in MCA's to set herself up for flex classes in 8th grade - Mrs. Mammel her english teacher told her "Shannon I could've told you would've qualified for Flex in October!"  Shannon gave that a big smile.  The principal told Shannon he too wanted Shannon to take MCA's - because he knows it will help their performance numbers!!! 

Erin is in great hands at Bamber Valley.  She has a counselor if she needs her.  She will be providing the counselor with counsel as often as she needs it :)  Erin continues to provide us all with wisdom on a regular basis.

Mr. Myhro...the golf coach at Mayo HS is putting Shannon in the JV lineup for tomorrow's triangular match vs. JM.  She will golf #6 spot on the JV.  9 holes at Eastwood.  God please make the snow stay away until about 5:30...please.  Shannon thinks that is about the coolest thing in America. Mr. Myhro knows she's at her strongest today. 

Then we made it to the Mayo Clinic.  Our morning consult with the hematologist and peds doctors setting the course for Shannon's treatment was tough.  They laid out the plan and we're going to go hard at the tumor while Shannon is strong.  Oral chemo Temodar - we're hoping it can be one pill at bedtime for 6 weeks.  Then 6 weeks of radiation starting Thursday.  Tomorrow's appointment is a treatment planning session to make the thermo-plastic face mask that will keep her head in place while they zap the tumor. The radiation will enter her skull at right about where a high pony tail sits.

We're learning that a fever and low white counts will require emergency room visits.  Anytime that happens she will need a transfusion.  We are learning about the side effects that will likely occur, can occur and might occur.  They feel the first couple weeks she'll feel pretty good.  The cumulative effects of the chemo/radiation will eventually take their toll.  I think we all know someone who has gone through this process.

If the morning consult was the bad cop - the afternoon consult was the good cop.  The radiation oncologist is a hockey playing Mom and she has already heard much about Shannon from her hockey mama buddies who's daughters play hockey with Shannon.  Her name is Dr. Laack.  Jen taught her sons Soren and Xavier tennis at the RAC.  She shared a really cool story of hope at the end of our meeting.  Shannon was running out of questions because she was completely focused on getting to golf practice.  She made it there by 3:15. 

Back at Mayo tomorrow at 8a...

We love you all - your attention at this time is welcomed - responses are not always possible.  More updates as energy permits...we'll try for's good to have goals :)