New Year's Eve

Shannon is resting a little more peacefully after a rough start this morning. Her breathing became shallow and raspy sounding, possibly due to increased cranial pressure, again. She has been asking for water all day as she tries to clear her chest. It has taken a while for the morphine and Ativan to help calm her down and allow her lungs to relax. We’re hoping for a more restful night - no 3:00am milkshake! - but we’ll take it as it comes...

It's New Year's Eve, a night where we always reflect on the past year and think about the one ahead. I could never have anticipated what would happen to us in 2011.

Last year at this time, we were busy with all the normal life things - school, jobs, hockey, and basketball. Life was sailing along, and we were busy planning our big family spring break trip to New York City and Washington D.C.

Our trip was one of those where you do all the legwork to prepare for how to spend your time and what sights to see and then, magically, things go just as you had hoped they would. We have a couple hundred photos from the trip, pictures of our "perfect" little family with the girls at just the right ages to enjoy it. Shannon and Erin smiling in Times Square, goofing in Central Park, taking in the history at the U.S. Capitol, and the obligatory pose outside the White House. Not a clue that two weeks later, Shannon would be diagnosed.

So now I sit here and reflect on that time B.D. - before diagnosis, and the ensuing 8 months that bring us to today. Those carefree spring break days are a moment in time, but the lessons we've learned since April 15th changed us, changed me in ways I couldn't imagine.

We learned new medical terminology and we learned our way around the campus of the Mayo Clinic. We learned about perseverance and a positive attitude from our own child. We learned that people are kind and generous beyond belief. We learned that people like our kids and they like us. We learned to take each day as it comes. We learned to enjoy the good days. We learned to battle through the bad days and stay together no matter where life takes us - even to Tennessee.

I learned some things about myself, too. I learned that writing is cathartic for me. I learned that I can make good friends. I learned that I can be strong. I learned that having things planned and staying on schedule isn't as important as I thought. I learned that I love being a mother.

2012 is almost here. Happy New Year.

Really early Saturday December 31, 2011

Shannon seems to be settling into a pattern of finding peak alertness at 3am.  So here I am taking a shift and she's back asleep and I am stuck here with my thoughts.  She just clearly told me; "food"..."shake"..."shake"...

So, I'm up making a milk shake at 3:30 in the morning.  I sprinkled a little hot cocoa packet with some pepermint flavoring in with some ice cream and skim milk and the kid just killed it.  Before dozing back to sleep she mustered up a slurred "thank you".  How great is that?

I'm going to make some observations about human nature.  I do not want people to overreact.  I'm reminded of the big voice out of the sky from Field of Dreams, "If you blog it, they will come".  So I have to be a little careful of what I write so as not to offend.  But maybe it will offer some insight into our view of the world from our Willow Lane Hospice.
  • People like to bring stuff.  They don't know what else to do to help ease your burden so they drop off nuts, pasta, deserts, breads, chickens, chocolate bars, peanut brittle, fudge, soda's.  Nobody brings beer anymore.  I guess that's OK.
  • People need to tell you: "We are thinking of you and your family constantly".  I guess that's a good thing too.  There's really no downside to telling us that.  We really can't believe people are thinking about us as much as they are but they are.  Heck, I'm not thinking about us that much.
  • People are compelled to fill "dead air".  Talk sometimes is a release for nervous energy.  I spent 13 years in broadcasting and in that business "dead air" is the enemy.  But in our world sometimes some quiet reflection is OK.  We don't always need to be talking.  Sometimes just sharing the same air, the same space, enjoying a moment in time is good enough.
  • People are really sad for us.  There is so much compassion for our situation out there it blows you away.  People are kind.
I truly believe I am the lucky one because I get to be with Shannon and Erin and Jen each and every day.  Our families and friends seem to feel better when they get to be around the girls and their energy.  They generally give off a pretty peaceful vibe.  Shannon is stirring again... "more water..."

Friday December 30, 2011

We are having a really tough time keeping our chins up today. This journey has taken yet another unexpected turn, and our hearts are conflicted. One thing Shannon didn't want was to suffer or end up in a hospital bed. While we're still at home tonight, a hospital bed was delivered to our door today.

Shannon's rebound day from yesterday continued into the wee hours of the night. At 3:00 am I was awakened by Shannon saying "What ... time ... is ... it?" I came to her side in the leather chair and explained that it was the middle of the night. She was wide awake and wanted to drink water and ask about the whereabouts of Erin and Dan. The mind was hard at work.

So when our hospice nurse Diane arrived today, she was startled at the uptick in Shannon. While that would seem like a good thing, there are complications... if death was no longer imminent, some needs had to be addressed. We decided it was time for a hospital bed for Shannon's comfort and to ease the difficult transfers we have been making. Dan's rotator cuff has been taking a beating as he's been using a fireman's carry to move her from a bed to the couch to the chair.

Why the changes? Dan and I had a long conversation with Dr. Wetmore (on her day off!) this morning and explained the changes we've seen. As we talked about what we were seeing, she was rattling off the different cranial nerves that are affected and trying to get a mental picture of Shannon and what might be going on with the tumor. Dr. Wetmore had told us before we left Memphis that there was always a chance that the cystic area of the tumor could decrease due to pressure on it. Without a CT or an MRI we can't be completely sure, but it appears that is what most likely has happened. Fluid in Shannon's brain is flowing more freely than it was. An uptick in alertness like this would have been the result of the surgery we declined to have one week ago.

So, where does that leave us tonight? The pressure in her head has reduced and it is less likely that will be the cause of her life ending. She is more alert, but the right side function is non existent and she can't hold her own head up. We have possibly entered a longer stretch of comfort care and we now have to think about how to keep her hydrated and fed when swallowing is still very difficult. 

We are exhausted from the steady stream of visitors, but being alone with our thoughts is no picnic either. We must find some more strength to carry on and keep honoring Shannon's wishes as best we can. Today was a hard day.

Shannon is alive, but this is not living.

Thursday Post #2

Shannon has had a pretty good rebound day.  Heaven can wait.

There were eyes open responses and more attempts at communicating words.  Her sock was bugging her and it took about five tries before we realized she was saying "toe".  Really frustrating for me and Jen but I can't imagine the agony Shannon must feel trying to get enough air in her lungs to create a sound.  Only to have us respond; "I didn't understand you Sweetie." Shocking stuff if you had interacted with her within the last month or two.  Tonight she was able to communicate that she was craving a Diet Coke.  Morphine and Diet Coke. Did we mention that we are living in bizzarro world?

The Wild game is on the TV and Shannon seems to be looking in that direction.  We have the sound up.  The Wild are playing Edmonton at the X.  34 days ago Shannon and I watched the Wild play Edmonton at the X - sweet seats too.  That was the Friday after Thanksgiving.  Might as well have been a million years ago.

I wanted to take a second to talk about Erin O who had a great little getaway from our home hospice to hang out with her friend Lexie.  Lexie's dad Shaun is the Boys Basketball Coach at Mayo HS so the girls were able to sit on the bench and tend to water duties as the Spartans scored a win over JM.
Ms. Erin continues to carry around an amazing amount of confidence and perspective considering that her heart is being ripped in two as her big sister keeps slipping away right in front of her eyes.  But she loves friends and fun - as a 10 year old should - and her time with the Lang's lasted through two basketball games a sleepover and a baking session.  Not once did she call to say she was sad or wanted to come home.  From all indications Erin is going to be OK. 

Thursday December 29, 2011

Today marks one week since we left Memphis. We were unsure whether Shannon would even make it home, but here we are 7 days later and she's still with us.

Last night she showed her first signs of distress and finally said yes to some pain medication. 8 months since diagnosis and last night was the first time we used anything for pain. So a couple of small doses of morphine helped the lungs to relax and not work so hard to clear themselves. She slept soundly through the night last night in the leather recliner that kept her more upright and allowed her to breathe more easily. I suspect feeling relaxed is the best she can feel right now.

Yesterday brought a steady stream of visitors and a couple of them were really poignant, memory-filled visits. The most emotional point yesterday was a visit from our old neighbors, the Gushulaks. When we moved into this house on Shannon's second birthday, there were two little girls living just across the street. When Erin was born the following year, we had a foursome: Abby, a year older than Shannon, and Tessa, a year older than little E.

The pictures and stories we shared yesterday brought back so many of those early childhood memories. Your kids first best friends. The ones who spent hours playing school, drawing on the driveways with chalk, and selling really lousy lemonade to the neighbors. These girls show up in a lot of our home videos. Nikki was the mom I could call and say, "please take my kids for an hour because they are driving me crazy!" and she wouldn't question my skills as a mother. And vice versa. Our girls haven't spent as much time together since the Gushulaks moved from the neighborhood several years ago, but the memories came flooding back yesterday as Abby held Shannon's hand and cried.

Another day is upon us ...

Wednesday December 28, 2011

There have certainly been some changes in Shannon's breathing patterns but she remains stable - and most important - resting peacefully.  Our hospice nurse Diane came and spent time here today.  O'Hara visits on her schedule for Thursday and Friday as well.  I am almost wrote God willing.  But God's will is a real mystery to us right now.

Some of our dearest friends are trickling through and taking turns holding Shannon and sitting with her.  She is less responsive and the squeeze replies are less frequent.  Our friends keep apologizing for their tears and we keep telling them it is OK.  Truly, there is something comforting about seeing people weep for you and your child.  They care so deeply.  Oddly, I draw strength from it.  Every once in a while Jen and me and Erin will join in.  But you can't really be like that all day so you take turns.

Erin took off to hang out with some basketball buds - holiday tournament time for the high schooler's so the girls are hanging out at Mayo Auditorium.  She needs this.  She is well tended to.  Erin may choose to sleep away from home.  That's her call.

It's a bizzarro world we are living in today.  All I know is that people seem better when they leave then when they get here.  Shannon still has that way about her.

Tuesday December 27, 2011

Home hospice was set up today and practical matters needed to be discussed, details of which are not for blogging. We have a plan and will attempt to honor Shannon's wishes to the best of our abilities.

Shannon has had a mostly restful day, but she has tried to say a few more words and it is very difficult to understand her. You can feel her frustration as she curls the toes on her left foot when we can't decipher the syllables that come from her mouth. She can hear and understand everything we say, but it's a bit of a one way street right now. She can't open her eyes very easily, so using a keyboard to type or pointing to things isn't an option. I can't imagine what is going on inside her head. Tonight Dan is reading stories to her to help occupy her mind...

Today a few words came out more clearly than others: jello, egg ... and she's taken in a few bites of each of those and let it slide down her throat. She's also sipping some water from a syringe to keep her mouth and throat wet. These may seem like boring details, but this is the reality that we are living right now. Tiny little moments of interaction amidst hours of holding her hand and watching her rest.

Lots of time on our hands. Time to think. We are here, being present, and waiting ... it is surreal ...

December 26, 2011

We are holding steady.  Shannon is still requiring pretty close monitoring.  A labor of love truly as friends and family take turns holding her hand, chatting with her.  Her nods and head shakes acknowledge that she is tracking.

A meeting was called tonight to address our beloved Rebels - Shannon's hockey team.  All players and all parents lined the benches in locker room #3 in Graham #2 tonight.  Jen and I told the girls and their parents about Shannon's status and her future...our future as a family.  Our friend Kelli P - who has a day job as a Mayo Clinic social worker - volunteered to come along for the meeting.  The message to the girls was this; what would Shannon do?  She would want them to play hard, have fun, win games, be kind to each other.  Not necessarily in that order. Kelli told them it is OK to feel sad, sick, sleepless.  Erin O'Hara even chimed in to tell the group Shannon is not having much fun right now and that the next stage will be a good one for her sister. Damn.  We love those Rebels.

Tuesday we will meet with hospice people from Mayo Clinic.

Christmas 2011

Shannon O'Hara spent Christmas Eve and Christmas Day smothered by love.  Cousins, aunts, uncles and both sets of grandparents took turns holding her hands, telling her stories, laughing and crying...together.  All weekend our home was packed to the roof with love.
While Shannon never really opened her eyes she responded with approving nods of her head and squeezes of her left hand.  Fr. Mahon - our Pastor from St. John the Evangelist - sat with Shannon and lead a family service that has to rank among the most spiritual moments of my life.  Even Shannon gave it a good squeeze.  34 of us crowded around Shannon in our family room and prayed for a peaceful transition to her next life.  Another beautiful moment in our journey.

Now it is quiet in our house and Erin is taking her turn crying on her sister's chest.  Through sobs she told us, "I am not ready for her to go away."  We are all taking turns today.  Sometimes the tears help you power back up for more fight.  It's a Christmas none of us will ever forget.

Christmas Morning

Dan and I sat with Shannon at 3:00am and talked about some favorite memories. She would squeeze Dan's hand to acknowledge our words. It was a moment of beauty.

Shannon is sleeping again now, saving up energy for those O'Hara cousins and aunts and uncles who will be arriving in a few hours.

There is no Christmas card or photo coming from us this year. Instead, here's one from the archives - Christmas 2004:  Shannon age 6, Erin age 3 1/2.  Merry Christmas, everyone.

Christmas Eve

It's the best night of the year for young children. And for parents of young children. As I watch Shannon lying here, I can't help but think of those early Christmases. Shannon, our first born and the first grandchild and first niece on my side of the family. On the other end of the spectrum, she is grandchild number 18 on the O'Hara side. She truly has the best of both worlds - one side to spoil her rotten with attention and one side to fill a room with voices of love and laughter.

I think back to the craziness of trying to have the "perfect" gift for Shannon from Santa each year. One year it was the toy kitchen, complete with pots and pans and all the little toy food you could imagine. One year it was the toy vanity with makeup and a mirror that had a button you could push to make it light up and this little voice would say phrases like, "You are pretty!" or "Oh, how beautiful you are!"

Toy kitchen, toy vanity ... and I thought of myself as a feminist! But, at the time, it seemed important to get her what she wanted. I was trying to be a good mom. The wow of Christmas morning ... it would make those big beautiful brown eyes light up.

I also reflect on these memories, because as she grew into a pre-teen and then a teenager, she wasn't bound by the traditional. She wasn't afraid to be herself. She doesn't wear makeup, has never asked to. (It's comforting to me that I didn't scar her with that toy vanity thing!) She's avoided middle school girl drama by just being a good person, being kind. By believing in herself and not needing to prove herself to anyone. We heard such beautiful words today from a couple of Shannon's teachers about the kind of person she is and what she's meant to them. Those words brought us to tears.

I find myself sitting here thinking about Erin. An old soul. Thank goodness for that. She is watching her sister slip away and handling it with courage and grace. She will feel the love and the pain of this Christmas forever. She will be the one in our family to carry on our memories.

But, she's been preparing for that job since she was a toddler. Those early Christmases would play out like this: Shannon, a ball of energy, bouncing off the walls with excitement. And Erin, idolizing her sister, sitting back, observing, taking it all in. She gathered a lot of information by being quiet, being still, listening. She still does.

We spent today with a few close friends this morning and then my family this afternoon. For my brother Eric, his wife Jen, and their kids Laurynn and Jack, this was a tough day. Shannon is slipping further. Less time awake today. Less responsive today. Slipping ...

So now it's time to tuck in on another Christmas Eve. There is nothing I could put under the tree this year to make those big brown eyes light up. So, give us another day. Give us Christmas Day with the O'Haras.

Sleep tight, everyone.

Post #2 - Friday December 23, 2011

As I sit here by the fire with a glass of wine, the house is quiet. Erin is with her friends. Dan is at the store. Shannon is sleeping. And I am attempting to put thoughts into words ...

The posts about our decisions the past 36 hours or so only tell part of the story. So many little pieces of information went into the decision to leave Memphis so we could be home for the holidays. With that, we took a leap of faith as Shannon's condition was deteriorating. But, having a ventriculostomy in Memphis on December 23rd would have meant Memphis was home for the holidays. To reiterate, the surgery would have improved Shannon's alertness and relieved the pressure in the brain, but it would not have anything to do with quality of life or improved right side function. And the pressure would most likely eventually build up there again, and we'd be right back where we started.

We made our decision that being at home was most important to us, and Dr. Wetmore supported our choice. She was a rock for us on one of the most difficult days in this 8 month journey. So beyond competent and compassionate. Amazing. I will never forget that.

When Dan said that we had frank discussions with Dr. Wetmore, he wasn't kidding. Discussing the unimaginable. Dr. Wetmore taking the time to talk to Erin. The end could be near. As in, 12 hours in the car near? Yes. Thankfully, as you know, that did not happen.

So we woke up today to a house decorated for the holidays and stocked with food and cards and presents. And yet, there was business to attend to. A wheelchair to pick up. A handicap parking sticker. A conversation with Dr. Rao about more unimaginable stuff. Conversations with Mayo's home hospice. The business of preparing for death.

Amongst all that today, was beauty and grace in being with Shannon. We've invited some family and friends to stop by, different people throughout the day, to see with their own eyes, to talk to Shannon, to cry, to feed her, to hold her hand, to be present.

Shannon feels no pain right now. Her breathing is becoming shallow, but she is eating and sleeping and listening and sometimes saying a few words. She told coach Bart today, "Tell the Rebels good luck." She is aware, but not fully conscious all the time. It could be hours, days, even weeks. We hope to spend the holidays with those we love without attending to the business of dying...

We are so conscious of all who have shared this journey with us and we want you to all be a part of this stage, too. We will try to continue to share, to let you in, as that has been such an important thing, for all of us, but especially for Dan and I.

But, our pain is ours to carry.  Not yours. And it is Christmas time. A time to focus on those you love. Those dearest to you. That is our plan. Make it yours, too ...

Friday December 23, 2011

Team O'Hara is home where the heart is.  Safe and sound.  Took us 12 hours exactly with multiple stops for food, coffee, Red Bull and puke. Might have to post two-a-days for awhile.  Our home looks like Christmas.  Thanks to all who made that happen.  Wow.

Thursday December 22, 2011

Greetings from US Highway 218 just around Mt Pleasant Iowa.  Don't worry Jen is driving.

We are making our way.  Shannon is resting comfortably.  Erin is watching Mr. Popper's Penguins on Shannon's Ipad.

We left St. Jude's at around 11:30am.  Hope to be back on Willow Lane in Rochester around midnight.

Shannon's condition is not improving - fatigue continues to keep the Little Battler pinned down.  We had some frank discussions with Dr. Wetmore.  When we said goodbye to our sweet team - Dr. Wetmore, Nurse Vicky, and Nurse Practitioner Valerie we were hugging goodbye maybe forever.

However, our appointments are still on the books next week and with any kind of rebound we will go back.  Shannon wants to stay on the Crenolanib.  The plan is to spend time with our families over the Christmas weekend and see how it goes.  The name of the book might have to be 17 Days in Memphis.

Wednesday December 21, 2011

At this writing we are packing up and ready to pull up stakes in Germantown TN.  Thursday morning Shannon is due for lab work for the trial.  We will leave in the morning packed for the road trip and as soon as we are dismissed from St. Jude's we will cross the bridge into Arkansas and head north for Christmas.

Shannon was wiped out today.  She never really left the sofa.  Not until bath time and then it was right to bed.  We are hopeful a patch stuck to Shannon's right arm Wednesday will keep nausea under control.  The challenge of keeping an oral 6-hour anti-nausea drug into a patient sleeping 20 hours a day made the patch a necessity.

Erin and I had another tearful pillow talk last night.  She told me she is done with Memphis.  When we come home she wants to stay home.  She's sad.  She wants her big sister back the way she was - but E knows that is unlikely and she's trying to sound out how our lives will look together in the future.  When you get that one figured out kid let us know.  She's processing.  Way not fair.

Erin's decision means Team O'Hara will skate shorthanded for next week's return to Memphis for Shannon's labs and exam.  So Shannon, Mom and Dad will party like rock stars and celebrate New Year's in Memphis (yeah right...midnight is a foreign concept)!

Jen and Shannon will stay in Memphis through the first week of January - a key MRI set for Jan 4.  I will make sales calls in Wisconsin that week and Erin will return to school (speaking of foreign concepts).  Sunny's Tennessee run is over.

OK, so now I'm selling's possible the reason Shannon is wiped out is there is a fight going on and ground zero is her brain stem.  If the Crenolanib is starving cells - as it is designed to - a reaction could be extreme exhaustion.  Either that or the Olson's just made us eat too much.

Memphis Lives in Me is a really meaningful song to this family - from Memphis the Tony Award winning musical we took in together in New York City at the end of March.  Two weeks later they found the tumor.  Ironic that now here we are in Memphis fighting for Shannon's life.

Tuesday December 20, 2011

I should never write here about no vomiting, because as soon as I do ... shortly after my post last night, Shannon awoke and wasn't feeling well. You know what happened next, and the rest of the night and early this morning, Shannon was uncomfortable and struggling with it all.

But, our day got better as Shannon fired up to spend time with the Olsons. Another trip to the Waffle House, followed by some sight seeing in the minivan. While Shannon slept through some of it, we were all awake and eyes wide open when we reached the Lorraine Motel, the sight where Martin Luther King Jr. was assassinated.

We carried on our Memphis by car tour with a drive by Graceland and then allowed ourselves some down time this afternoon. Upon waking from a nap, Shannon announced that she wanted to go to a movie with the other girls. So, off to Alvin and the Chipmunks for Erin, Hallie, Anna and Shannon.

I have to admit, I was a little nervous leaving my child, in a wheelchair, in the care of someone else. Shannon was ok with it, though, because Anna was by her side. So, let go, Mom, let go ...We finished our night with pizza and ice cream, saying goodbye to the Olsons and thanking them for bringing a little bit of sunshine to these dark days.

Shannon is learning acceptance and so are we. Acceptance that her disease is progressing, acceptance that she is physically very limited, acceptance that she has limited energy. Acceptance that this great plan to be home for the entire holiday season needs to be adjusted. We will be returning to Memphis between Christmas and New Years and staying until the 4 week MRI scan takes place January 4th or 5th.

Shannon found a little joy tonight listening to the other girls tell jokes and make fun of their dads. Straining to form the words with her slurred speech, she managed to join in on the fun. Cracking a joke that made us all laugh, and calling her dad a dork. Just like the good ol' days.

Little moments of happiness amidst the sadness ...

Monday December 19, 2011

Things are status quo for Shannon. No right side improvement and the fatigue continues to beat her down, but no vomiting or nausea, and she is tolerating the Crenolanib. We had a short day at St. Jude - just a visit to E Clinic for Dr. Wetmore to eyeball Shannon. We are still on target to come home this weekend for Christmas, but our plans going forward are in flux. Dr. Wetmore has some trepidation about us being home for 11 days with the condition that Shannon is in, and rightfully so. It might be time for another new plan ... we will keep you posted ...

The highlight today was the arrival of friends Anna, Hallie, and Tommy Olson in time to meet us at St. Jude. Anna is one of Shannon's BFF's and Erin and Hallie are school and basketball buddies, too. Lots of smiles from Erin as she and Hallie enjoyed some outdoor time, including a great hike with their dads and Sunny at a nearby park. 

Anna was content to hang with Shannon, watching her sleep and upon waking, reading her all the cards and well wishes the Olsons had transported from friends back home. No appointments scheduled tomorrow, so we are hoping to do a little sightseeing with a trip to the National Civil Rights Museum. That's the plan. Here's hoping Shannon's energy level and comfort allow ...

Sunday December 18, 2011

Trying to draw inspiration from my Ipod to help me through a tough night.  John Hiatt's Have A Little Faith In Me is helping...

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

when the tears you cry
are all you can believe
just give these lovin' arms a try baby
and have a little faith in me

I have been struggling all day and I don't think it is because of another Vikings drubbing or the last gasp from Dublin Danny's fantasy football season that are bringing me down. 

We had friends visit us in Memphis and we were given a preview of what reactions to us will be in the days ahead when more of our loved ones get to be with us - with Shannon possibly for a final time.  The visit was wonderful and our relationship with this family pre-dates kids or marriages - old friends.  What was painful was the goodbye when it just kinda dawned on all of us... you know.  Saying goodbye to people is going to be messy.  And now I am listening to Jason Mraz A Beautiful Mess.

Saturday was a pretty good day but Sunday Shannon struggled.  Her energy was low and it was obvious she was struggling tracking the action in a busy apartment with dogs and kids and a TV with football on and lots of conversation and white noise.  So she slept.  Later in the day she watched 60 minutes with just Jen and I and said it was easier watching a show like that than watching football.  I know that sucks for her - for us - because she loves watching sports and constantly commenting on everything (just like her Mom).

When Shannon was a little girl we used to dance around our Rochester house on 21st Ave - stereo cranked loud for Marvin Gaye and Tammi Terrell's classic duet What You Gave Me;

Like a breath of spring you came
and as you leave I can only sigh your name
cries of anguish echo from way down
but never reach my lips to make a sound

Though it seems my world is crumblin'
Honey you don't owe me anything cause;
What you gave me girl is more than enough to last

Monday we're back at St. Jude's to see Dr. Wetmore and our team at E clinic.  Nothing major.  Just a check of vitals and a pee test for the trial.  I think there is stabilization.  The higher dose of steroids is probably making a difference.  But it's still a shocker to see the little battler so helpless. Maybe the chemo is zapping all her energy fighting.  Maybe it will get better...

Saturday December 17, 2011

How many times have we written here about adjusting to a new normal? We are attempting to do it again, but this one is really difficult. Our new normal is coming to acceptance that Shannon is disabled. This time the new normal involves navigating the world with a wheelchair in tow everywhere we go. We are learning to use an apparatus called a gait belt to help us move her without fear of dropping her. Another skill, as Shannon said "they didn't teach you in mom school." We must find small moments of joy amongst the overall sadness.

Shannon talked with a friend of hers on the phone this morning. Listening to her explain what's been going on in her own words and with her impeded speech is so heartbreaking. Yet her friend made her laugh and sent a text later saying how good it was to talk with Shannon. I hope that Shannon's friends can remember the wonderful kid that is trapped inside her terrible body. I think they will.

Today it was sunny and 50 degrees, and we ventured out. Shannon's request: to go out to breakfast at the Waffle House. The large dose of steroids - up to 14mg per day - mean Shannon's appetite is healthy. Wanting food is one thing. Being able to feed herself and swallow it is proving to be a more difficult task. She is learning to feed herself left handed, but it's made more difficult by the patch on her left eye. Try it - eating with your non-dominant hand with one eye closed. Oh yeah, and with numbness on one side of your mouth and with your brain forgetting to tell your mouth to chew and your throat to swallow. Despite that, she managed to polish off two eggs, toast, hash browns and a waffle.

Shannon is coming to acceptance, too. She lets us wipe her mouth if she can't feel the food on it. She lets us get her in and out of the wheelchair and the van. She lets us help her with her eye patch. She lets us read to her. You an imagine all the other things she needs help doing. She told me, "this is pretty awkward". No kidding.

Sunny the Wonderdog continues to make us smile. Today we were soaking up some sun outside our apartment and Erin was pushing the wheelchair a little too fast for Sunny's liking. Sunny tried to protect Shannon by pulling the blanket off her, and in the process almost pulling Shannon out of the chair! The girls made it into a game of taunting Sunny and Sunny was happy to play her part.

The wheelchair we are using now is just a loaner from St. Jude's. It's not fitted to Shannon and not one she can propel herself with only one working arm. We will get her fitted for that next week and hopefully we will have it before too long. Right now, Erin likes to be in charge of pushing the wheelchair, but I think Shannon will be glad when she can propel herself. We have some thinking to do about how we will navigate things when we get home. A split level house built in 1984 certainly isn't ideal.

Some of these worries - at least the financial part - were taken care of by the fundraiser the RAC did for Shannon yesterday. Such a wonderful effort by my employer and my fellow tennis pros. Dan and I were amazed at the faces we saw in the photos - friends, family, and even the girl's bus driver showed their support and made donations to ease our burdens. Let's just say, Shannon can pick out the most mac daddy wheelchair she can find. Saying thanks doesn't seem adequate, but it will have to do...

Hard to believe that we will be home in a week. Shannon's deterioration will be hard for all to see, but I know family, friends, classmates and teammates are anxious for a chance to see us, to see Shannon.

The Rebels won again today. They improved their record to 12-1.

It's going to be a different kind of Christmas this year.

Another weekend in Memphis

Our ability to predict what is going to happen on any given day is completely kaput.

Jen and I both woke up today taking glances around our apartment each thinking to ourselves; "how long is it going to take to pack this place up?".  We were pretty sure we were heading back to the 507.

Before we could leave, Shannon was due for labs required as part of the clinical trial we came down to St. Jude's to take part in.  But before Shannon got another poke Dr. Wetmore wanted to see us.  She came in and announced that it was "time for a new plan.  First, let's go look at some pictures."  So we were steered into a consult room... Dr. Wetmore, Nurse Vicki Fergus and Team O'Hara.  Pretty cute to see Erin pushing her sister's wheelchair into position in front a bank of monitors and then holding Shannon's hand.  Dr Wetmore proceeded to pull up image after image of Shannon's brain from scans taken at Mayo in August and November comparing them to the two scans taken at St. Jude's December 7th and December 14.

What jumps out at you; this ain't no cell death causing some swelling.  The tumor is alive and growing and growing fast.  Even from December 7th to December 14th there appears to be significant change of at least 10%.  So let's just get all our cards on the table before we make any decisions.  The reason Shannon has lost her right side - her dominant arm, hands, legs and feet - the reason her vision is blurry and the reason her ears are constantly ringing and the reason she feels like shit is the tumor is growing against key nerve regions in her Pons.

So Dr. Wetmore laid out our options; 1) Go home and say enough is enough 2) stay on the study at a lower dose of crenolanib which will keep her in the trial or 3) stay on the trial at the 220mg adult-sized dosage that is definitely taxing Shannon's system to the max.  Guess which one she picked?

Shannon kept asking; "what gives me the best chance"?  Of course, the answer is the 220mg blast of chemo for 28 straight days.  Daydreaming about the mapping of our route back to Rochester, I heard Shannon announce; "let's stay."

Either way - we decided as a group - we would be home for Christmas.  Either Shannon is going to stabilize as the drug gets fully into her system or we are going to be miserable and pull the plug on the trial anyway and head home.  We'll know by next Thursday.

At this point we really want Shannon's data to matter - if we can't complete the trial her labs are thrown out.   Shannon wants to matter.  I sense that's a big part of how she's weighing her need to feel good and her want to be around friends and family.  To keep going in the clinical trial gives her the best chance to accomplish all goals (and get home for Christmas).  It gives her a fight.

By the end of the day we were back in our apartment. We had purchased Shannon a new Ipad and she had a renewed determination in her eye.  She had been ignoring texts and Facebook requests because she couldn't see them on her phone.  She can see the Ipad much better. She can see and with her left hand she can execute replies to her friends.  Her Facebook post tonight says it all: "Thanks everyone!  I have a whole weekend to myself.  No appointments. Yay!!! Can't wait to see Anna Olson on Monday!!" 

Yes, one of her BFF's is coming to Memphis to see Shannon.  Just what the doctor ordered.

Friday December 16, 2011

This is going to come as a shocker(not): Shannon wants to stay in Memphis and keep fighting.

Dr. Wetmore showed us the scans today. You can see why Shannon has been feeling so crummy. The tumor is growing and causing all sorts of challenges. But the kid won't quit.

She was given many options including returning to Rochester immediately.

We will update later with more time to process. Holy schnikees.

Thursday Night Update

We had hoped a day off from St. Jude's and some fresh air would brighten Shannon's spirit, but Shannon reached rock bottom today.

She is a prisoner in her own body right now and she told us tonight, "I don't want to give up, but I don't want to live like this. I can't do anything for myself."

The only time she is comfortable right now is when she is sleeping. She is having trouble seeing, hearing, and swallowing.

We are hoping for grace and peace as we make tough decisions in the days ahead.

Thursday December 15, 2011

We are taking a day off from St. Jude's today. Shannon is status quo and there's nothing they would see today that they can't see tomorrow. She'll keep taking her meds and we'll keep hoping they work. She is more alert and the eye patch she is wearing is at least allowing her to watch TV and look around without feeling dizzy.

Grandma and Papa Harkins are returning to Memphis today, cutting short their sightseeing in Nashville.  We are planning for some sort of an outing this afternoon if Shannon feels up to it. She said, "Let's do something fun today." That's a good goal.

We are all processing and coping. Dealing with what we see now and what may be ahead. Trying to remain hopeful while being realistic.

KTTC and my coworker Brent Frueh did a really nice piece on the news last night about the Shannon fundraiser tomorrow at the RAC. If you didn't catch it, check it out:

Wednesday December 14, 2011

We have been on a long journey since April with lots of highs and lows. Today is amongst the lows.

Shannon had an emergency MRI today to try to get to the bottom of the loss of function in her right side. We were hoping that we'd see a lot of swelling caused by bleeding in the brain from the Crenolanib doing a number on the tumor. While there is a small amount of bleed from the tumor, what the MRI showed is that one cystic part of the tumor - kind of like a blister - is expanding. The position is just so that the spinal column is being pinched and the flow of the spinal fluid is being stopped. Hence, the paralysis.

Dr. Wetmore introduced us to a neurosurgeon today who may perform a procedure to reduce the swelling in the brain by putting in a stent. We will try steroids for a couple more days before making that decision. While this procedure might relieve some of the pressure, it does not access the tumor or improve the right side function.

So, as prepared as we were for this trip to Memphis, we now are dealing with something unexpected. The truth is that this loss of function was coming slowly over our last few days in Rochester. We had seen it in Shannon's facial droop and coordination. It is just a coincidence that it reached this tipping point shortly after our arrival in Memphis. While it is very hard to be away from home at this time, taking Crenolanib gave us the best chance to fight this tumor. And to do that, we had to come to St. Jude.

Shannon told Dr. Wetmore that she wants to do whatever gives her the best chance - drugs, surgery, whatever. She's still trying to fight. She wants to stay on the study for herself and for the kids who come next. So she will keep taking the Crenolanib until we see more results after 4 weeks. There's still a hope that it will show it can stop tumor growth.

The support from Minnesota is so appreciated. Shannon wishes she could communicate more with her friends, but she just hasn't been capable of it. Texts and e-mails to each of us remind us of the support we have. The Rochester Athletic Club and the RAC Tennis Department are putting on a big fundraiser for Shannon this Friday morning. I wish we could be there.

We all cried today, but Shannon cried the least of all of us. She was busy figuring out how to manipulate a wheelchair with only one functioning hand. Thank goodness she's the toughest of us all.

We will try to sleep tonight, hoping for yet another unexpected turn to come our way. If we've learned anything on our cancer journey over these past nine months, it's that you can't predict what will happen next ...

Tuesday December 13, 2011

Another long day of drip, drip, drip at St. Jude's. More iv fluids, and more steroids given intravenously as well. While the nausea medicines have kept Shannon from getting sick, they have made her very lethargic. It is an inexact science, a bit of trial and error to get the right cocktail that keeps you from throwing up, but doesn't knock you out. Let's say that's a work in progress...

The steroids needed to be increased as well today because Shannon's right side is still not functioning. She can't use her right arm or get her right leg to work properly. It's almost unimaginable that she was skating 9 days ago. Now, she needs a wheelchair.

It is likely there is much swelling around the tumor and probably bleeding as well that is irritating the brain. So today, Shannon received 12 mg of Decadron - twice the highest dose she had ever needed in the past. Just like that.

One bright spot today was Dan and Erin taking a break from the Medicine Room at St. Jude's to take Sunny out for a walk on Mud Island - a great park area in the Mississippi River, just minutes from St. Jude. Dan and Erin walked and talked and enjoyed some sweets afterwards at little shop called Miss Cordelia's.

We will reassess again tomorrow at St. Jude with Dr. Wetmore. The goal is to keep Shannon on this high dose of Crenolanib because that gives us the best chance to kill tumor cells. But, Dr. Wetmore is prepared to back off the dosage if Shannon just cannot tolerate it.

It's hard not to feel like we've gone backwards. Looking at Shannon lying in a hospital bed just tears at our hearts. But, we are trying to keep the faith that the chemo is killing the tumor. Things have gotten much worse, but that doesn't mean it can't get better again. We could live with Shannon feeling really crappy for a while if there's a return on the other end. We have to believe ...

Monday December 12, 2011

Monday was an unscheduled day at St. Jude's Children's Research Hospital for Team O'Hara but we are hopeful the issues addressed today will lead to a rebound.

Shannon has been just clobbered by nausea, fatigue and - more disturbing - a loss of function to her right side.  What started as face numbness has worked its way down her right arm to her right leg.  When she talks she sounds severely inebriated.  But for most of the day Shannon did not even attempt to talk - she just slept.  We transported her around St. Jude's in a wheelchair.

The rapid progression of the numbnesss - along with a couple days of vomiting - sent us back this morning in 911 mode.  Shannon needed fluids and she needed drugs that she just couldn't keep down on her own.  By about 10:30am she had an IV in place and for the next 6 hours it was a slow drip, drip, drip.  More steroids, more zofran, more zantac and saline. 

Dr. Cynthia Wetmore was all over us today.  Shannon is the first patient in her trial to get this high a dose of the crenolanib.  Her opinion is that one of two things are happening; 1) the tumor is growing or 2) the drug has had an immediate impact and cell death and edema are causing these problems.  The second explanation is not only most hopeful - it seems most logical. 

The MRI taken just last Wednesday did not indicate much change to the tumor and Dr. Wetmore feels that if there is tumor growth it would not happen that fast.  The symptoms would present more gradually.

When Shannon passed the pee test - when she was able to urinate - we were allowed to go home (OK, home is a stretch but back to our apartment home in Germantown.)  That happened about 5pm.  We will head back tomorrow for further monitoring.

By the time we returned to our pad Shannon wanted popcorn and mac and cheese.  We tried to pace her.  But she was hungry.  Now she's sleeping again.  In a chair, wearing a shamrock blanket given to her by the Rochester 12A girls hockey team.  She looks cozy.  If she is sleeping she can't puke. 

Sunday December 11, 2011

Today was a slightly better day, although everything is relative... our day still started and ended with vomit. TMI, I know..

Shannon woke up hungry today so she took her Decadron, Zofran, and Bactrim and chowed down her breakfast. It didn't stay down for long. After consulting with Dr. Wetmore, we re-took the steroid and anti-nausea and Shannon was cautious with food choices and movements for the rest of the day.

Shannon slept a little less today and even managed to play a card game with Erin, Grandma, and Papa this afternoon while Dan and I went for a walk. She followed along with texts from one of the hockey mom's at today's Rebels game. (Just to update you all, the Rebels suffered their first loss of the season yesterday, but bounced back with a victory today.) The highlight of Shannon's day was a FaceTime call from some of her friends, the Olsons and Langs, from back home.

Shannon continues to be unsteady on her feet as she struggles with numbness down her right side. Today she also has a ringing in her ears that she tells us is "really annoying". These symptoms could be caused by dead cells that are vacating the tumor and touching nerves. It's pretty tight quarters inside the brain stem. That's what we're hoping it is. That's the positive spin I'm going with until I learn otherwise. I'm not ready to accept the alternative.

Today we did what we usually do on Sundays - watched a lot of NFL football. We coerced Erin into doing some homework today and got her caught up on her assignments from last week. Shannon has been unable to do any work these past three days, so that's been a bummer for her.

We also offered Erin the chance to escape Memphis for a couple of days since we haven't been able to get out and do things like we had hoped. Grandma and Papa rented a car and they are going to spend the next week traveling around - maybe Nashville or the Smoky Mountains - and they offered to take Erin with them. But, given the option, Erin wants to stay here. She wants to be with us. She wants us to stay together. Erin was in tears tonight after seeing her sister get sick again.

Tonight's episode of nausea came shortly after taking the Bactrim again, so now we are supposing that the Bactrim is not sitting right with Shannon and her new cocktail of medicines. Hard to reconcile that these drugs that are hopefully helping can make her so sick. While we had planned to have a couple of days away from St. Jude, we will head in tomorrow for a consult with Dr. Wetmore.

I would be lying if I said this wasn't hard. It is. Hard for us to be away from home. Hard to be missing our friends. Hard to be missing the pre-Christmas craziness that I always put myself through. Hard to be missing Rebels games. Hard to see Shannon sick. Hard to see Erin sad. Hard to admit that Shannon may never be healthy enough again to enjoy the things she once did...

But, as the 10 year old said, we should stay together. And for now, we will keep fighting.

Saturday December 10, 2011

Shannon's condition continues to deteriorate.  She looks like she did in late June when the after effects of radiation kicked her butt for about two weeks.  She just can't shake the fatigue and now the numbness is working its way down her right side.

Today the four of us - along with Grandma and Papa Harkins - drove back to the St. Jude campus for labs, another EKG and a second dose of the crenolanib.   Shannon told me; "if I have to feel like this for the next two years, I don't want to feel like this." 

Dr. Wetmore is in the know about Shannon's condition but wants to hold off on pumping up the steroids to make sure it's not just a virus of some kind running its course. The symptoms have been coming on over the last couple weeks. We aren't scheduled to return to St. Jude's until Tuesday.  Dr. Wetmore suspects - and we are praying - that a dead cell from the tumor or some dead cells may have triggered swelling which is causing pressure on Shannon's fifth cranial nerve.

We had to help Shannon around campus and outside this afternoon to take in some fresh Tennessee air and soak up some vitamin D.  The sun is shining bright here in the MidSouth -  it's cool but the 40 degrees felt good to us and we each took turns getting out and walking.

Grandma and Erin are baking Christmas cookies.  It smells good in here.  Jen is working on a puzzle.  Shannon is out cold on the sofa with a puke bucket close by.  No sight seeing today.

Friday December 9, 2011

Tonight we are settled in our two bedroom apartment in the Memphis suburb of Germantown that will be home for the next two weeks. It feels really good to be "off campus". Shannon and I hadn't left the confines of St. Jude since Monday when we arrived. Our set up here is good and gives us a little more breathing room than we had at the Grizzlie House.

The best part of today was seeing our minivan roll in with Grandma, Papa and Sunny the Wonder Dog in tow. They had an uneventful adventure through Iowa and Missouri and Sunny enjoyed every minute of the ride! The girls were so happy to see Sunny and the three of them rode together in the backseat of our jam-packed van as we headed out to the burbs.

The worst part if today is how Shannon is feeling. She made it through her blood draw, EKG, and E Clinic visit this morning, but immediately needed a nap. Then after lunch and moving to our new digs, she needed a nap. She doesn't feel up to doing much, and she had a few tears today when it was too hard to concentrate to do her homework. Dizziness, numbness, and fatigue have a grip on her. We hope this is a temporary phase and that she will rebound soon so we can spend some of our free time exploring Memphis.

Tomorrow takes us back to St. Jude for the 48 hour blood draw and EKG, and then Shannon will get her second dose of chemo. The trial protocol calls for one dose, then just blood count measurements until the 48 hour mark, after which the second dose is taken. From here on out, she will take the chemo, named Crenolanib, every day.

Grandma, Erin, and I have plans to do a little shopping tomorrow while Shannon naps and then the women folk are hoping to do our traditional Christmas cookie baking tomorrow afternoon. Shannon (and Erin) seem excited about that, so I hope it's a day brightener.

Thursday November 8, 2011

This day deserves a wow! 

At the end of the day, a new, highly selective inhibitor drug - a chemo called crenolanib - is in Shannon's system and our next fight is underway.

The day started at 7a in the Triage Unit at St. Jude's Children's Research hospital with an IV inserted in Shannon's left hand that will stay in place until Saturday.  The first blood draw provided baseline numbers.  The crenolanib was introduced by 8:50a.  Three little tablets that Shannon ingested easily under the guidance of a PK (pharmacokinetics) nurse named Sherry who made us all feel comfortable and safe.

Then Shannon had to give about 5 tubes of blood after 1 hour, 2 hours, 4 hours and then the final draw came about 3pm.  In between, there were meetings with researchers, child-life specialists, Dr. Wetmore's nurse practitioner... and an encounter with Carmen Electra.

I made Jen and Shannon rush out and check out today's celeb spot of the day as Ms. Electra waited to jump on an elevator.  They were not impressed and headed back into the Medicine Room.  We are learning that the celeb sightings around St. Jude's are pretty common - especially around the holidays.  So hopefully we can chronicle a few more over the course of the next couple weeks.  The girls accused me of being a creeper - but Carmen didn't notice.  A striking woman I have to admit - but she's a little too tall for me.

But our little Shanner had a tough day.  She was tired and lethargic and a little nauseous.  Lots of chemicals coursing through her blood stream.  And lots of blood drawn.  We helped her around the campus and tried our best to get her to eat some bland foods and drinks fluids.  But we are suspecting she may be worn down from sleep deprivation and the overall stress of being away from home, managing a school load from afar, uncertainty and - there's no denying it's impact on her energy -  the Big C.

Today's day brightener; the sun.  It made an appearance in our world for the first time since arriving in Tennessee.  Tomorrow's day brightener; Sunny.  Our dog should arrive with Grandma and Papa Harkins mid-day when our appointments are completed for the day.  At that time we will pack up and head for a town home we have rented out near Shelby Farms Park in Germantown TN.  We will set up camp there for the next two weeks.  Our pad has king sized beds, a kitchen, multiple TV rooms, a fitness center and access to tons of green space, trails and fresh air.  We are ready to turn over our room here at Grizzlies House.

We tried to give Erin as much attention as we could today but it was another all-about-Shannon day here at St. Jude's.  The staff around the E clinic is getting to know us and warming to our Yankee ways.  I think we are a little less invested in relationships at St. Jude's but we have some angels watching over us and helping us negotiate the local culture. 

Friday is a new day.

Wednesday December 7, 2011

We awoke to something that made us feel right at home this morning - snow! The people of Memphis are not accustomed to the white stuff and a few St. Jude's staffers tried to blame us for bringing it with us from Minnesota.

Dan and the girls were able to sleep in a bit this morning. I was up early, drinking coffee and reading the protocol for the experimental drug. Our first appointment of the day was Shannon's MRI. We are feeling more comfortable with our surroundings now - comfortable enough that Erin stayed at Grizzlie House to work on homework while we headed over to the Chili's Care Center - the building where all the scans take place.

We had been told that this was an extensive MRI and Shannon was prepared. Luckily the IV went in easily today, no feeling faint like yesterday. But, by the end of the scan, 75 minutes in the tube had Shannon feeling really claustrophobic. As always, she is such a trooper and made it through it.

By the time we came out of the MRI, Erin had joined us. After finishing her homework and checking in with Mrs. Nielsen and some of her friends by telephone, Erin checked out the shuttle schedule, saw that she could catch the 11:45 and texted her dad that she was coming over to the Patient Care Building. She got on the shuttle - alone - and then navigated her way through the building - alone - to find Dan doing some work near the Starbuck's. Completely confident that she knew her way around and could handle herself. Not bad for a 10 year old.

After a quick lunch, we met with Dr. Wetmore. She didn't have time to show us the scan today, but told us she had taken a look at it and while she saw some small changes she didn't see much tumor growth since the scan done 3 weeks ago at Mayo. That was good news. We will have more details from her on Friday when we have time to look at the scan together.

Although she was in a hurry to make it to a meeting today, Dr. Wetmore did have time to hear one dog story form the girls. This morning, we had face timed with Grandma who was staying with Sunny at our house. The girls had Grandma hold the phone up so they could say hi to Sunny and as soon as the girls started saying her name, Sunny's ears perked up and she licked Grandma's iPhone and disconnected the call!  Dr. Wetmore said she hopes she gets to meet Sunny.

Our day finished up with a helpful nurse, Miss Gina, getting us to photography to get Shannon's patient photo visit done quickly and then showing us where to go for a quick EKG for Shannon - part of the protocol for this trial. After all that, Shannon had earned herself a nice long nap this afternoon.

I am struggling for the words to describe this place. It is amazing and overwhelming at the same time. Everyone here has a story. You don't end up at St. Jude unless you have a story. Some people draw strength from sharing their stories and hearing the same from others, but Shannon is not quite to that point in her journey. She is polite, but she likes it better when people chat with her about other things - her friends, her hockey team, her dog, etc. As always, we continue to try and follow her lead.

Tomorrow starts early. Labs at 7:00 am as Shannon prepares for her first dose of the new chemo tomorrow.

Tuesday December 6, 2011

We want to keep you all updated on this new stage of our journey, so we will do our best to write a nightly blog. Things got better here today for us. After a long travel day Monday and being overwhelmed by our new surroundings last night, today started off rough, but steadily improved.

First on the agenda today were labs for Shannon. A blood draw - something she's done so many times over these past 9 months - for the first time ever left her feeling very woozy. An inauspicious start, to say the least! But, some orange juice and some TLC from the nurses at the E clinic (that's the name for the neuro-oncology clinic) helped her to get the color back in her skin and the sass back in her personality. We worked through medical histories, vitals, neuros, etc. By the time we saw the social worker, Shannon was feeling good enough to rip on both Dan and I. Our social worker here is a southern belle named Jennifer. I think the only thing she and I have in common is our name! She didn't quite know what to think of our yankee dialect or straightforwardness. She was doing her intake interview, poking around the edges to see how well Shannon, and we as a family, were dealing with things. Shannon told her we lay it all out there. We're honest with our kids and they are honest with us - maybe to a fault. In other words, we weren't looking for much help form her and we pretty much told her that!

Truth be told, services like a social worker might be completely new to a lot of patients who come here, but we've been fortunate enough to have that type of support back home. We realize we shouldn't take that for granted. Being here for just over 24 hours, it's obvious to see that people come from all over the country and from all walks of life to this hospital to try and save their children.

Our last appointment of the day was the best one yet. We met Dr. Wetmore and connected immediately. She and Shannon talked about hockey, they talked about teachers at Willow Creek, and they talked about the staff at the Mayo Clinic. Lots of comfort in the familiarity that Dr. Wetmore has with the journey we have taken to get to this point. She spent 10 years at Mayo, so she understands us yankees!

We are making progress on some of the logistics here. Tomorrow we are hoping to finalize some housing that will allow Sunny (oh, yeah, and Grandma and Grandpa) to join us this weekend. Dr. Wetmore also is planning to let us return home for a long holiday break - hopefully coming home from Christmas through New Years - then returning the first week of January to complete the 4 week protocol. We are being given this latitude because of Dr. Wetmore's familiarity with Dr. Rao and Mayo. The labs and check ups we would be doing here in Memphis that week will instead be done at home by the Mayo Clinic. How lucky are we that we happen to live in Rochester? Unbelievable.

We finished our night off with a family dinner here at Grizzlie House. Various corporations sponsor these free events and tonight it was southern comfort food provided by Gus's Famous Fried Chicken. This is stick to your bones kind of food - fried chicken, grilled cheese sandwiches, mac and cheese, bread and baked beans. Oh, and a little cole slaw if you need something green on your plate! It was delicious, and to top if off, the in house movie they were playing was Miracle - Shannon's favorite movie about the 1980 Olympic men's hockey team. Ironic, to say the least.

Tomorrow brings a lengthy MRI for Shannon. Advanced imaging to look not only at the tumor, but at the nerves surrounding it and the blood pathways leading to it. After that, we will meet with Dr. Wetmore to look at results and sign off on participating in the clinical trial. Shannon should receive her first dose of the drug on Thursday. Time is ticking as Shannon continues to be more symptomatic each day.

Thanks to all of you back home who are keeping tabs on us and supporting us on this journey.

Monday December 5, 2011

We made it to Memphis. It was a really long day but we are here and admitted and Shannon was examined and we are cleared for outpatient participation.

Our Mpls to Memphis flight took 5 hours. High winds and low visibility here diverted us to Little Rock where we sat on the tarmac for an hour. Shannon's reaction; "hey, another state I had never been to - Arkansas!".

By the time we got to St Jude Children's Research Hospital it was 5. We made it to our housing here in the campus a little after 6:30 and we are cashed.

We will meet Dr. Wetmore and her team at the Nuero-Oncology clinic first thing Tuesday and away we go.

These kids are such troopers. Erin O is a star too. Left our house in Rochester at 6am...we have no chance of seeing the end of this Monday Night Football game.

More deats tomorrow. We are safe and sound.

Sunday December 4, 2011

The bags are now packed and we are off on our plane to Memphis first thing tomorrow. This weekend brought us in contact with all the groups of people who have been along for this journey. We saw lots of friends and family who came by to see us, hug us, wish us luck. We attended our regular 9:30 mass and Shannon shared herself with everyone in attendance at St. John's through the sacrament of Anointing of the Sick. Finally tonight, we said goodbye for now to the Rebels. We are as ready as one can be for this next step. If only we could take the good thoughts, well wishes, and prayers that have been sent our way and trade each one in for an extra day on this earth for Shannon. Instead, we will carry your love and support in our hearts and it will help us to carry on...

Friday December 2, 2011

A note to the reader: make sure you have a cup of coffee or diet coke in hand for this one - you're going to be here a while!

It seems that every time the phone rings, the caller ID comes up Memphis, TN.  Over the past three days, we have dealt with people at St. Jude on several different fronts.  The research coordinator talked us through the basic logistics of coming to St. Jude.  Dr. Wetmore talked us through the logistics of the clinical trial.  The travel coordinator helped us arrange our flight, shuttle, and housing.  The business office got Shannon registered as a patient and issued her Medical ID number.  The business office called back to verify all our information.  The research assistant called back to make sure all of these things had been done and that we're ready to come.   An email received tonight included an appointment itinerary and confirmed all of the details.  We are quickly learning that this is how St. Jude's operates.   They make sure everything is taken care of.   Having a life threatening childhood illness is bad enough, you don't need to worry about the details...

Our call from Dr. Wetmore provided a little more clarity about the trial protocol.   While we discussed the ins and outs of this trial, we also discussed the fact that 28 days in Memphis would mean being away from home at the holidays.   Dr. Wetmore reassured us that she will make every effort to allow us to fly home for the Christmas weekend.  We told Dr. Wetmore that high on Shannon's wish list would be a pass to come home for New Year's - that's when the Rebels will be playing in the Stillwater Tournament.   Dr. Wetmore gets that.   She spent some time on staff here at Mayo and while she was here, her son played youth hockey...

Dr. Wetmore explained that the 28 day time frame is at the request of the FDA.  This is a drug that is not yet approved, and patients must be closely monitored.  But, Dr. Wetmore is obviously very familiar with the care that Mayo provides and as it turns out, she's also familiar with Dr. Rao.  While Dr. Wetmore was at Mayo, Dr. Rao was a fellow.   Dr. Rao later worked in Dr. Wetmore's lab.  There is a chance that if Shannon is tolerating the drug easily, we may have some latitude to do more of the protocol at Mayo.   Not getting our hopes up, but food for thought...

So, here's what we know - we leave Monday morning first thing and when we get to Memphis the shuttle will take us straight to St. Jude's.   Shannon will have a new patient assessment on Monday afternoon and meet the team, including Dr. Wetmore.   Tuesday there will be lab work, consults, and a patient services orientation.  Wednesday morning brings a pharmacy consult and then a baseline MRI.   If everything goes well, Shannon will start the new drug on Thursday.

We have dotted a lot of i's and crossed a lot of t's, but we are still working out our housing situation.  We know that we will be staying right on campus at Grizzlies House (named for the local NBA team) for the first few days.  This allows us to be close by while we have lots of appointments and consults.   After that, St. Jude's will provide housing at the Ronald McDonald House.  But, Shannon is apprehensive about this for two reasons.   One, Shannon is hoping that some how, some way, we can find a place to live in Memphis where Sunny the Wonder Dog can join us.  Even three weeks away from her sounds like too long to Shannon.  Grandma and Grandpa Harkins are ready to bring us our dog and our car if we can find the right situation.

The other reason Shannon is apprehensive about Ronald McDonald is this: she told us, she doesn't think of herself as one of "those" kids... i.e. a kid with cancer.   Call it denial, call it coping, but it's been working for her.   If we can help this feel more like an adventure and less like a trip to the hospital, we will.  But obviously, at St. Jude's everywhere you turn, there will be "those" kids and we need to help Shannon and Erin prepare for that, too.

We picked the girls up from school today and they had gifts and cards from teachers and friends. It was a bittersweet day at Willow Creek as they celebrated, yet said goodbye.  Goodbye for now.  The outpouring of support is uplifting and people have been coming out of the woodwork to wish us best of luck on our journey.  There have been so many offers to help that if we leave tasks behind, or forget something, someone will pick up the slack.  I'm %100 confident of that and that's making it easier to get ready to go.

So, all the nuts and bolts are taken care of, and that just leaves us with the feelings and the emotions and the reality of it all.  I find myself needing to temper people's enthusiasm about this next step.  Yes, we are taking action and yes, St. Jude's is a wonderful place and yes, we need to be hopeful.  Yet the odds are long and the outlook is bleak.  There is no magic elixir and Shannon will not come home cured.  We are only headed to Memphis because the treatment that worked for a while is no longer working.  But Shannon is ready to keep fighting.  So, we will take a leap of faith and hope for results.  Shannon will try this experimental drug and hope that it becomes the next thing that is used to treat brain cancer.  We hope for response and deadening of cells.  We hope this can prolong Shannon's life.  We hope that Shannon can return home to the friends and teammates she is leaving behind and feel good enough to enjoy some more time with all of them.  We hope ...

Way back in May, local TV station KTTC did a story on Shannon and in it she said she hopes the doctors will learn something from her case and she hopes her life means something.  All the questions that seemed impossible for Dan and I to answer about what is the next right thing to do have gone away.  The four of us all believe the next right thing to do is head to Memphis.  Shannon wants her life to mean something to someone.  It already does, little girl, it already does ...

Thursday December 1, 2011

We are completely blown away - again - at the kindness of people in our lives. Word of our Memphis journey has circulated quickly and the offers are pouring in from everywhere.

17 people have offered to take care of our dog. Six have offered to drive her down to Memphis with clothes and supplies and whatever it is we have requested. Several have offered to dress our home up for Christmas Griswold style. People are dropping off chili and rice krispie bars and my mother-in-law has volunteered to do my laundry.

We have Mayo Clinic employees helping us way beyond the call of duty. Erin's basketball team gave her two extra lives in lightning at basketball practice. Shannon's Rebels are planning a going away pizza party.

And then there are the teary-eyed staffers at Willow Creek Middle School who are going to incredible lengths to make sure our kids will keep up with their classmates. Next time there is a bond referendum - shut up and vote yes. These people are heroes.

I just wanted to take a second to recognize these efforts. Everyone wants to help. We are blown out of the water. You are making the difference. You are making it better for us.

I just told a friend that the hardest part is seeing pain in the faces of the people you love. This business of getting to Memphis and fighting the fight is an action plan. That is the easy part. We will be busy and on an adventure together.

The next few days will be hard. And then we are off to Memphis. I will let Jen update everyone on St. Jude's tomorrow. I just wanted to say thank you and good night.

Destination: Memphis

My oh my how things have changed quickly.  We are headed to Memphis on Monday.

We heard back from St. Jude's late Wednesday afternoon and Shannon was accepted for their clinical trial.  The team there feels that what they see on the MRI looks like recurrent tumor.  A new round of their receptor inhibitor trial is set to begin and Shannon can take one of the six slots available.  Immediately.

The goal of this trial is to test the safety and dosing of this oral medication that is designed to inhibit tumor cell growth and starve the tumor of nutrients by cutting off the blood pathways to the tumor.  We will learn more from Dr. Wetmore today, but the protocol is for Shannon to be in Memphis for the first 28 days of the trial for close monitoring.  Our hope is that we will get to return home for the Christmas holiday weekend and then return to St. Jude's to finish the first portion of the trial.

So, we have a lot of ground to cover over the next four days.  All four of us are going. We gave Erin the option, and she wants to be with us.  St. Jude's is helping arrange the initial trip to Memphis and housing to get us settled in down there on Monday.  Shannon is sad to be leaving school, friends, and hockey, but hopefully we will be moving back by mid January and she will feel good enough to enjoy all of those things.

Dan and I can't believe how quickly this is happening, but at least it feels like we're doing something, continuing to fight. We will update with more information as things become clearer to us.

If you are interested, here is a link to the trial site:

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...