Wednesday November 30, 2011

We had a good chat with the girls this morning over breakfast.  Shannon was receptive to discussing clinical trials.  Erin, as always, an eyes-wide-open listener. 

We are in agreement that as long as Shannon can feel productive as a member of the Rochester Rebels 12B's we will keep skating.  Watching Shannon and her pals goof and laugh in the locker room and at DQ on the way home from our game in Waseca - it's hard to imagine a treatment plan with more benefit to Shannon's mental health.  However, our desires need to be weighed against all possible opportunities to extend Shannon's life. 

Dr. Rao told us Monday that the National Institute of Health trial wants Shannon - she's an ideal candidate.  But NIH recommended we start immediately while they can treat the whole tumor.  NIH Nuerosurgeon Dr. Lonser will tell us all about the procedure.  We have his number sitting right here.  The NIH procedure would require a surgery - inserting a small plastic tube into the tumor area to apply an experimental toxin directly to the cancer.  If we wait too long we may miss our window of opportunity with NIH.  Aggressive tumor growth - even changes in 4 or 5 weeks - could make it impossible to treat the entire area.  Shannon's next MRI is scheduled for the first week in January.

Enlisting in the NIH trial - post-haste - would mean picking up and heading to Bethesda Maryland while Shannon is still feeling good enough to play hockey and go to school.  She said to us this morning she usually gets to school and the sadness goes away.  Being around her friends is really good medicine.  We have so much to consider.

Today we hope to hear from Dr. Wetmore at St. Jude's.  Will Shannon be a candidate for that clinical trial?  That trial involves daily oral meds - a receptor inhibitor to interfere with tumor growth or spread of the cancer.  That trial involves a four-week stay in Memphis.  So much to consider.

Shannon told us this morning the steroids are working.  She feels better.  Less pressure in her ear after just three 1mg doses.  But while the steroids help with the symptoms they are not doing anything to slow tumor growth, they just mask the effects. 

Both clinical trials are Phase 1 studies - gathering data.  There is no proof that either trial will buy us time.  So much to consider.

Today Jen and I are circling the wagons and taking care of business to keep us ready for whatever is ahead.

Tuesday November 29, 2011

Not much energy in me to write tonight, but I had a quick score update to post.  The Rebels went on the road and skated to a 5-0 victory over Waseca.  Shannon scored a goal 19 seconds into the game.  A self described, "cheesy goal" from the side of the net, but we'll take it.

Shannon looked all right out there, fighting her mind and her body a bit, but loving being out on the ice.  She even stood her ground at the blue line and got leveled by the biggest girl on the opposing team.  No harm, no foul - Shannon bounced back up.

Seeing her skate hard during the game and laugh hard after the game with her teammates was a nice little pick me up for all of us ...

Monday November 28, 2011

This should be the beginning of a Temodar week, but this course that we were so sure we were going to be on through next March has taken a detour.  Shannon has begun presenting some new symptoms and the first course of action is to start her on the steroids again.  Shannon is mad as hell about what she knows this will do to her appearance.  Getting off steroids was a great day in this journey and returning to them feels like a step backwards, for sure.  But, a slight tremor in Shannon's left side, a little drooping in her lip, and some nausea have forced the doctors hand on this.  The hope is that these symptoms are coming from swelling around the tumor and the Decadron can have an immediate effect.

Dan and I had each noticed the almost imperceptible change in Shannon's face over the last few days, but neither of us wanted to be an alarmist, so neither of us verbalized it.  We each thought - "maybe I'm being hyper sensitive to every little twitch", or "maybe Shannon's just really fatigued", or "maybe it's nothing" ... but Dr. Rao confirmed it during her examination.  In the car on the way to school, Shannon was not only mad about steroids, but she was checking her face in the the mirror and expressing her anger towards us for not telling her what we thought we saw.  I think she only half believed my explanation that we weren't lying to her - just trying not to alarm her.  Shannon expects us to be completely honest with her about everything, and the protective instinct we have as parents sometimes backfires in this situation...

So, as for the Temodar, we are waiting at least a couple of days to start this cycle.  Shannon's records are being reviewed by two clinical trials right now and Dr. Rao explained that she would not be eligible for either trial until at least 4 weeks after her last dose of chemo.  So, we will wait to hear from St. Jude's and National Institute of Health on whether or not they think we should continue our current course of action and reassess after the next scan, or, if they think Shannon is a candidate for a trial and how soon this would happen.

Shannon listened today as Dr. Rao explained the need for the steroid again and also began to discuss the possibility of a clinical trial and what each of them would entail.  She listened to all the information and then politely told Dr. Rao, "I need to go now so I can get to school."  In the elevator we discussed that if we have to pursue treatment somewhere else, we hope we won't have to go until after the Rebels hockey season is over.  Maybe that's a pipe dream, but Shannon is gearing up for practice tonight and an away game in Waseca tomorrow.

It's all so overwhelming right now... to think that these research facilities in Bethesda and Memphis are reviewing our scans today and Wednesday means we will soon have a second and third opinion to consider.  Shannon told Dan and I, "If we have to do something, we should try the St. Jude's study (oral meds) first and then if that doesn't work, I would try the brain surgery at NIH..."  Now, this is putting the cart before the horse a bit, because we don't even know yet what their recommendations will be.  But, Shannon is trying to process all of the what ifs and, truth be told, Dan and I are processing all of this right along with her.

My heart just aches for my little girl.  No 13 year old should have to think about how far they will go to try to save their own life.  But, if and when the time comes, Shannon the Cannon will lead, and we will follow...

Saturday November 26, 2011

I needed a change of tune from my usual mellow singer/songwriter vibe, so today on the iPod it's Mumford & Sons. While the music is alt rock mixed with bluegrass, the lyrics are still poetry. Songs about fear and grace and love and time ...

Time. It's ever present on our minds right now. How much do we have? How should we spend it? How do we get more of it? The goal is to not waste it worrying about it.

Yesterday, Shannon spent her time watching hockey. That meant she and Dan made a trip to St. Paul for a second day in a row, this time to watch the Minnesota Wild game. After that, they headed to watch her cousin Teddie play a tournament game over in Minnetonka. While taking in Teddie's game made for a really long day, Shannon wanted to see him play. Watching Teddie play 5 years ago at a tournament here in Rochester is what inspired Shannon to give hockey a try, so there's always been a connection there.

While Shannon and Dan were on the go, Erin and I had a mellow day. Erin's friend came over to spend the day with her and then Erin and I finished off our night by watching the movie Elf. Erin got some down time in her own home, just what she has been craving.

We have two more days here at home on this holiday weekend. Usually we spend this time getting out the Christmas decorations and getting a tree. The holidays are always a time of reflection on the past year and thoughts towards the new one. That will be a struggle this year. Our goal right now is to fill our time doing the things we want, the things that make us happy, the things that fill us up. It's a strange way to live, not looking back, not looking forward. But, we will try to continue to enjoy the moment we are in as best we can, making the most of our time...

"Well I'm scared of what's behind and what's before ... There will come a time, you'll see, with no more tears, and love will not break your heart, but dismiss your fears ..." After the Storm by Mumford & Sons


Just looking to string together A Few Honest Words.  OK, I'm already in trouble because I stole that from Ben Sollee who's song I am listening to this morning as I get my day started with some music and some writing.

Most of my material is not original.  I draw inspiration and perspective from people all around me all day.  I learn stuff from them and apply it somewhere down the line.  Sometimes people say; "man, is he smart!"  But sometimes they say: "hey, where have I heard that before?"

The truth is on a day like today - Thanksgiving - it is not that hard to string together a few honest words to express how I am feeling.  I am scared.  I am happy.  I am grateful.  I am lucky, really lucky.  Always have been.  I have a heart that lives on flutter and often needs to be swallowed because it is beating in my throat.  Summoning up a good cry does not take much.  But that's a good thing.  It means I am alive and feeling much.

The adversity this family is facing is no different than that of thousands of other families going through really challenging times.  And I've stated it many times; embedded in a really bad situation is an amazing journey of support, inspiration, hope and love.  We just needed our eyes opened to it.  God keeps putting people in our lives that make it OK.

We are going to celebrate Thanksgiving with O'Hara's today at Doug and Maggie's in St. Paul - a house full of love and laughter.  Bring your earplugs!  Our thoughts and hearts will be with the Harkins' in Las Vegas also.

Shannon is awake - just walked upstairs with a big ol smile on her face.  Sunny the wonderdog is licking her like she's been away for months.   Happy Thanksgiving.

Tuesday November 22, 2011

We have been all over the map this week with our emotions, but tonight we're feeling pretty good around here.  Could be that it's a five day weekend with very little on our agenda.  Could be that meeting with our social worker is helping us to process and cope.  Could be that a follow up appointment with Dr. Rao encouraged us to explore our options with clinical trials which will give us a second and third opinion about what the MRI scan shows, and she also encouraged us not to give up hope that what we are seeing is treatment effect without the aid of steroids. Could be that Shannon felt up to going to hockey practice tonight.  Could be the new iPhones BOTH girls received today!!

I am reluctant to share this news, because it seems quite excessive.  To be honest, Dan and I are a little bit embarrassed about it.  Erin didn't even have a phone before today!  But we had several people offer to do something nice for us, for our girls.  And they did.

While what we really want can't be bought - not even from Apple - our girls are grinning from ear to ear.  These new toys have brought a little relief from the stress and pain they feel, a little diversion, a little mindless fun, a little joy.  So what the hell, new iPhones it is...

Hopkins Thanksgiving Tournament Champions

This photo doesn't begin to tell the story of the support and love we felt while watching Shannon and her Rebels play their way to a thrilling tournament victory.  So many family and friends from the Twin Cities and Rochester showed up that we filled the stands.  Some even took a break from hockey and braved the snowy conditions to drive to Lakeville and watch Erin play basketball.  And Shannon's teammates and their families were right in the thick of it, pulling so hard for all of us. They love our kid and we love them for it.  We laughed and cried and cheered our way through two overtime victories.  It felt like this was supposed to happen because one of the things on Shannon's bucket list was to win a championship.

But the cold, hard reality of last Tuesday's news was never far from the surface.  And by the time we returned home, Shannon was sullen and worrying about her mortality.  She said she thinks the tumor is growing.  She struggled in the championship game with fatigue and balance.  She worries that she will never be able to have that experience again.  "It's too bad my first championship came at the end of my life" she told me through her tears.

So today we start trying to buy more time.  We broached the subject of clinical trials with Shannon last night.  We are headed to Mayo today to sign a release forms for Shannon's records and discuss with doctors what options we might have.  St. Jude's in Memphis or National Institute of Health in Bethesda have trials going on right now.  We have to continue to fight, so we will...

Friday November 18, 2011

We've been looking forward to this weekend for a long time - ever since the Rebels' hockey schedule came out in October. Our team's first tournament - a three-day event in the Twin Cities. At the same time in another corner of the metro, Erin's basketball team kicks off the season with a one-day jamboree Saturday in Lakeville.

Certainly, all focus has changed again but we are coping and a busy weekend with friends, family and teammates may be just what we need. Some competition might be the perfect outlet for pent up anger. If only Jen and I could suit up.

Spirits around our house have been lifting with each passing day. I returned from my sales trip to Illinois last night in time for hockey practice. After hockey, Shannon insisted we catch the end of Erin's practice and then we all enjoyed a Culver's Scoopie Meal together. Then we were home for precious time together organizing for a couple nights in a hotel, two tournaments and lots of people that want to see us, hug us, offer support and cheer our girls to happiness.

We are all up for that.

Wednesday November 16, 2011

Today was a day eerily like the one we lived through exactly 7 months ago.  We were given devastating news that's almost impossible to process.  Trying to share this news with family and friends is exhausting - and necessary.  Today we knew that each time we picked up the phone we would bring someone to tears.

The difference this time around, though, is there is no definitive course of action for us.  What to do next?  There is no next treatment plan.  If this turns out to be new tumor growth, we will have decisions to make.  This next phase of our journey will involve much more personal choice.

We did our best to carry on today.  Dan traveled to Illinois, the girls got up and went to school, I did the laundry, life went on ... Shannon came home from school and did her homework.  She's working on her research paper for English so she will be prepared for ninth grade.  She went to the bank to deposit money because she's saving for an iPhone.  It's almost surreal to watch her.  It is gut wrenching.  But, it's not denial on her part.  It's her carrying on the life she wants to lead.  Both girls were subdued today, but they are functioning.

With the help of the Cancer Education Program at the Mayo Clinic, we are checking into any clinical trials that may be available.  We don't know what we will find, but we are going to educate ourselves so we can help Shannon make the best choices.  We don't want to grasp at straws and we won't chase false hope, but we need to explore our options.  The future is more uncertain now than ever, but we will get up tomorrow and do the best we can...

MRI Results

Unfortunately, not good news to report here tonight.  Today's scan showed a brightness in the tumor area which is an indication that the tumor has probably started to grow again.  The only other possible explanation is that dead cells have continued to vacate the tumor and that allowed more of the contrast dye to seep in.  While Dr. Rao presented that as a possibility, tumor growth is a more likely explanation.  She will schedule another scan in six weeks - right around Christmas - to check for further tumor changes.

We are heartbroken and Shannon is angry.  So we enter this next stage of our journey.  We will keep a watchful eye for clinical symptom changes in Shannon that would be caused by tumor growth.  We will start exploring possible clinical trials around the country that may offer some hope.  We will honor Shannon's every wish to the best of our ability.  We will lean on you all for love and support.

Monday November 14, 2011

Have a good thought for this girl on Tuesday as she heads into the tube for her fourth MRI...

Sunday November 13, 2011

Up early this morning, not exactly sleepless but certainly more restless.  It's MRI week.  My waking thoughts alternating between Tuesday's brain scan and Saturday's hockey game.

The Rebels win over Red Wing required an intense, three-period effort.  Our first year players were given a taste of how quick the pace can be.  No time for indecision.  The 8 Rebel players who were on the team and lost twice to Red Wing last season were especially happy - everyone was.  Shannon kept going over specific plays from the game as we dozed off Saturday night.  Satisfied and exhausted.

It's seems obvious to Jen and I that Shannon's hockey development has been stunted.  The radiation, the steroids, the chemo drugs, the bactrim, the anti-nausea meds are keeping her from playing as fast as she once did.  Last season, she was one of the Rebels top scorers.  This season she is going to have to accept being a solid role player and locker room leader.  She just loves being a part of a team. 

Tuesday is also 7 months to the day since Shannon's tumor was diagnosed.  If you would have told us Shannon would be playing hockey and competing in intense games back on those cold, dark days of April we would have traded in all our chips right then and there.  We are thrilled and proud and grateful.

How many times when I have been blogging has a poignant song shuffled up - exactly where it was needed?  Just now...Annie Lennox...Why... 

Time to brew some coffee.  The Rebels are playing Dodge County at 2:30.  Life is good. 


It's Friday morning and the girls are sleeping in.  The first quarter ended yesterday, so no school today for students.  A little extra sleep and a little down time will be just fine with us.

The weather here has turned cold and, after a beautiful fall, we all know what comes next!  Snow had been predicted for us this week, but it skirted by us.  Dan was not quite as lucky as he was traveling in Wisconsin and they got the brunt of it.  The picture Dan texted to me looked like a winter wonderland.

Erin has been enjoying her school friends and basketball friends this week.  One more week before their first tournament, so the coaches added an extra practice this week and next to prepare.  Although we are less involved with the basketball team since we are not coaching or managing, we are making every effort we can to show Erin that we are interested in her activities, too.  This balancing act is not unique to us or our situation.  Parents everywhere try to treat their kids equally, but somehow the younger one always thinks they are getting the short straw!

Now that she's a week post chemo, Shannon feels her energy level is rebounding.  She's going to need it: back to back to back games for the Rebels this weekend as they kick off play in their district.  The regular season begins tonight with a game in Winona.

Happy Veteran's Day, everyone.

Tuesday November 8, 2011

Today's appointments brought some relief to the anxiety we have been feeling.  Shannon's complete neuro exam showed good, even strength in all her limbs and good reflexes and control of her eye movement.  A slight wobble is present, and the ear pain and some head pressure persists, but Dr. Keating didn't see any changes that alarmed her.  She is hopeful that the symptoms Shannon has been feeling are most likely caused by fatigue and the chemotherapy affecting the tumor.  And, without steroids, these changes are noticeable to Shannon.  We discussed the possibility of needing a small dose of steroids again if these symptoms continue or worsen during the next maintenance dose.

Shannon also did bloodwork today and we looked at those results with Dr. Keating as well.  The line graphs show the effect that all the treatment and medications have had on Shannon's system.  Strange to see the data in picture form that shows how far some of her counts have fallen.  Yet, her various counts that are low are still not low enough to cause concern other than to remind us to be vigilant about avoiding illness as best we can.  To that end, all four of us got our flu shots today.

So, all things considered, Dr. Keating feels Shannon is doing very well.  We will keep an eye on these symptoms during the next cycle of Temodar.  We were relieved with how the exam went, but still anxious to see how the tumor has been changing.  We will have more definitive answers when Shannon has her fourth MRI next Tuesday.

Monday November 7, 2011

The sun is shining brightly this morning and it was nice to drive the girls to school in the daylight, thanks to setting our clocks back yesterday.  Daylight Savings Time also allowed us to get up and moving early enough on Sunday to make it to 9:30am mass.  Erin grumbled a bit about having to get up and get dressed for church.  That's typical.  But what came next I wasn't prepared for.  Erin asked me with tears in her eyes, "Why do we even go to church?  I pray to God, but he doesn't answer my prayers.  Shannon had a headache this week.  She's still sick.  Why would God do that?"  Dan did his best to reassure Erin that while there is tragedy and sadness in the world, there's a lot of beauty and goodness, too.  The God question is one I struggle with - always.  That hasn't changed.  But right now, I'm less concerned about answering the God question and more concerned about validating Erin's feelings and letting her express them.  Her emotions are very close to the surface.  She saw Shannon struggle with some side effects this week and there were actual, physical signs that Shannon is sick.  We cannot forget that Erin is seeing, feeling, and processing all of this, too.

Shannon was able to play two hockey games this weekend and her squad is looking good.  They put the beat down on an over-matched team from Hastings last night.  A whole group of friends came to watch Shannon play.  She loved it and gave it her all.  And, while the Rebels looked good, Shannon struggled. Rubbery legs caused by fatigue and some returning side effects meant she was fighting to keep up.  Her mind is more than willing, but her body is not quite able.  Not while taking her chemo.  Not while struggling with pressure in her head and some balance issues.  Not with yet another returning symptom as Shannon felt some numbness in her face over the weekend.

We are hopeful that all these side effects are presenting themselves because the Temodar is killing more cells inside that tumor.  As a member of our radiation team reminded us, during the last maintenance dose, the steroids would still have been in her system to help counteract any swelling.  So, this time around, without the aid of the Decadron, its possible the swelling and tumor necrosis caused by the chemo is more noticeable to Shannon.

Possible explanation or not, it's still unsettling to have any changes in the status quo.  Any different feelings in her body trigger some fear and anxiety for Shannon.  And for the rest of us.  Tuesday Shannon will have a thorough neuro exam, and the next MRI is looming in a couple of weeks.  Until then, we will try to stay positive and tamp down the seeds of doubt.

Maybe this week as the drugs leave her system, we will see Shannon's energy return and her coordination skills sharpen again.  Maybe the numbness and the pressure will subside.  Maybe Erin can forget for just a while that her sister has cancer. Maybe, maybe ...

Friday November 4, 2011

Keane's Hamburg Song brought me to tears this morning on my hike around the Willow Creek Reservoir with Sunny the wonderdog. Just caught me in a moment. It's a beautiful song;

I don't wanna be adored
Don't wanna be first in line or make myself heard
I'd like to bring a little light
To shine a light on your life to make you feel loved

There was some serious autumn splendor out there with frost lifting and the sun coming over the horizon creating so many interesting patterns of shadow. Wildlife all around.  Sunny chased a raccoon up a tree. Sights, smells and then a really good song - I was vulnerable.

On the way home from hockey practice last night Shannon was quiet and when probed she admitted she was worried about the next MRI which will be administered later this month. She has been feeling pressure in her head. She talked about needing to make some balance adjustments recently to keep from stumbling. This was the first we had heard about this in weeks. Caught me off guard and when I tried to offer support or possible explanation she pretty much discounted my efforts and said,  "we don't know, we've never been through anything like this before". Nope, we haven't.

The fact remains that we have no idea when the other shoe will drop. To steal from a bit used over-and-over by our favorite radio personality The Common Man when discussing his his radio career; "Is this the beginning of the end?  The middle of the end?  Or the end of the end?"  We just don't know.  Not to make light of our situation, but it's impossible not to occasionally acknowledge the large shadow we have casting over our lives.

There are so many possible explanation for changes taking place that could cause some new head pressure, new balance changes, different feelings.  And some of the explanations could be extremely positive.  The tumor could be responding exactly as desired.  Is the fact that this is happening after 4 straight days of chemo, 5 cycles into this stage of the protocol a coincidence?  So let's pray on that.

It's a big stretch for Shannon's hockey team - the Rebels.  We face Apple Valley Saturday morning and Hastings Sunday night.  We have lots of games coming up.  Competing on the ice brings Shannon much joy.  Let's hope she's out there for all of it.


We have been enjoying an extended stabilization period.  Shannon and Erin are just clickin' off the school days and it seems as though each day after school is a whirlwind of activities. 

Halloween was strange as the 8th grader decided she was too cool for costume and handed out candy at home while the 6th grader dressed as a clown.  All day.  Wore her costume to school loud and proud.

Grandma Gwen and Grandpa Chuck are back in Rochester for a few days to help caddy kids around, hang out with us and connect with some of their Roch friends. We had a nice meal together between practices.  We'll do it again tomorrow. 

Overall, nothing too eventful relating to Shannon's health.  Our Mayo doctors have ordered our family to get flu shots and we passed on the request to Shannon's hockey team.  An ounce of prevention...

Tonight she took her 260mg capsule of Temodar before hockey.  Watching her skate through drills you would have no idea.  That's a tough little girl.  Stubborn to a fault.  Thank God.