Thursday June 30, 2011

Wow, are we on a rollercoaster ride this week... First, the good news - today’s follow up call from Dr. Laack provided a more positive take on the MRI results. She feels that the radiologist was being very cautious when he told her yesterday that there was “some” shrinking of the tumor. After seeing the MRI scan for herself, Dr. Laack said she was “very,very pleased with the response of the tumor”. The contrast dye that was used during the MRI showed that it is “leaking” into the tumor which means that there is "significant change" in the cells from the treatment. So, Dr. Laack was upbeat and offered hope that the treatment is having the intended effect. The next MRI in two months time will hopefully show continued shrinking of the tumor. But, as we discussed with Dr. Laack yesterday, there is no magic bullet, no overnight miracle. Shannon beating the odds will have to play out over time.

Now, the bad news. Shannon has continued with the nausea and vomiting and was on a different anti-nausea pill today that really wiped her out. She was unable to even keep fluids down, so we ended up at St. Mary’s late this afternoon for a liter of IV fluids to help with the dehydration. Poor girl. Still no definitive answer on what's causing her to feel so sick. Could be the flu. Could be cells being released from the tumor and touching a nausea center in the brain. Hard not knowing and hard seeing her down and out.

Hopefully Shannon can rest a little easier tonight. She is perking up a bit as the anti-nausea meds wear off and the fluids take effect. She even managed to eat a piece of toast! We are headed back to St. Mary's tomorrow morning so Shannon can receive a second liter of fluids. Hopefully that will get her headed in the right direction.

MRI update

Shannon made it through her MRI but Dr. Laack couldn't access the results of the scan for our meeting.  She was told by a radiologist that there was some shrinkage - but Dr. Laack is the expert at reading brain scans and she was not going to tell us anything definitive until she saw the scan.

In the meantime, Shannon underwent a thorough exam to help pinpoint the causes of the nausea.  It may just be the flu.  It may be reaction to Bactrim.  It may be radiation and chemo on the attack. 

So we're trying to keep Shannon hydrated - forcing blue Gatorade tonight.  Watching The Voice together on Jen's birthday.  Trying to turn the corner.

Dr. Laack will call us in the morning when she gets a closer look at the scan.  Then we will post.

MRI Moved to Today

Shannon has continued with the nausea, vomiting, and headaches and also has begun experiencing some tingling in her lip and tongue on the same side of her face that she is having the ear pain and head pressure.

So, they moved the MRI from Friday to today at 12:55pm. We will see Dr. Laack late this afternoon and then we will know more. Trying to narrow down what is going on.

Lots of anxiety for Shannon. She's worried about making it through the claustrophobic feeling in the MRI tube. Hard enough when you are feeling good, let alone on an upset tummy.

So, all those good thoughts you've been saving for us for Friday, we'll take them today...


Just a quick update on Shannon. She did vomit again overnight and that prompted us to follow up with neurology and oncology today. After speaking with doctors and nurse practitioners this morning, there are a few possible explanations:

One, it could be just a flu type bug, which is obviously hard to prove.

Two, it still could be a reaction to the Bactrim, which is designed to be a long-acting drug. Shannon was relieved to hear from hematology today that she will not have to take her scheduled doses this coming weekend. We will wait until our hematology appointment next Tuesday and then make a new plan for the necessary antibiotics to accompany the maintenance chemo.

A third potential explanation was offered today by Dr. Laack. If the tumor is "dying" (her word, not mine) then the tissue in the brain around the tumor could be swelling in response to the tumor change. Swelling could cause nausea, vomiting, headaches. This would be discovered at the Friday MRI and steroids would then be ordered again to help relieve this, just as they were at the beginning of Shannon's treatment.

The response of our medical team to our questions was very prompt and has helped ease our minds a bit. We're feeling grateful for the Mayo Clinic today. The doctors have said they would be surprised if these symptoms were from tumor growth. It should be too soon for that. Still, as any parent knows, it's hard to see your child sick and weak. Even harder knowing what we know.

So, for now, Shannon needs to lay low. Her day has consisted of TV, movies, naps, Tylenol, Zofran, saltines, and her new favorite Gatorade flavor, Rain Lime. Maybe the Twins will even give us something worth watching tonight... it doesn't hurt to dream, right?

Monday June 27, 2011

Our Dells vacation got a little messy.  Sunday while Jen, Eric and Papa and I were hacking it around Trappers Turn Golf Club, Shannon got sick back at Kalahari.  More vomiting and we cut short our golf to take her to the ER in Baraboo.  Grandma's texts and voice mails alerted us as we found a cell signal at the turn.  The cell coverage in the Dells is not strong. 

Dr. Rodriguez from Mayo Neurology was on call and advised us to head in to the nearest ER so Shannon could get checked out.  She wanted to rule out an anaphylactic shock to the Bactrim she began taking Saturday.

The Bactrim is prescribed to help Shannon's immune system for the next round of chemo - set to start here in the next week or two.  Shannon was to take two doses on Saturday and two on Sunday.  She made it through the Saturday dosage but she puked up Sunday's pill shortly after taking it.

Logic would tell you the introduction of Bactrim coupled with some overexertion from a couple exciting days at Kalahari should explain the reaction.  But the panic on Shannon's face told us she was worried it was tumor related.  She asked us as we rushed out to the car to head for Baraboo; "is there a chance I will die today?"  Oh Sweetie.

After examining Shannon and listening to the 12-year old explain her journey as an oncology patient at Mayo Clinic, the ER doc in Baraboo called Dr. Rodriguez in Rochester to consult.  He told us Dr. Rodriguez was the expert on tumors but he knew his anaphylactic shock and he said definitively this was not it.  And we were discharged.

Shannon is well aware that Friday she will undergo an MRI that will determine her immediate future.  There's no doubt she's processing.  There's no doubt she's scared.  We are all scared.  So separating daily 12-year old ailments like water in the ear or some nausea relating to sea sickness or overexertion is impossible to discount as the stand alone symptoms of a summer packed with activity.

We feel so badly for Gwen and Chuck, Eric and Jen, and Jack and Laurynn who did not sign up for this either.  And for sister Erin who quietly goes about her business of being a happy and fun loving 10-year old.  Just like our journey across Lake Michigan, 95% of the trip to the Dells was really great - but that 5% is the ass kicker. 

Bruce Springsteen's Long Walk Home comes up just at the moment I am trying to find the words for this blog entry.  "Hey pretty's going to be a long walk home..."

Saturday June 25, 2011

This weekend we are in the Wisconsin Dells celebrating the 45th wedding anniversary for Grandma and Papa Harkins. The 10 of us are sharing a condo at Kalahari. Today was spent enjoying the outdoor waterpark and indoor amusement park. Shannon and Erin and cousins Laurynn and Jack are daring the adults to keep up with them. We are doing our best!
Cousins at Kalahari

Wednesday June 22, 2011

Today was get away day - we were up early packing the van and headed 60 miles north to Muskegon to catch the 10:15 ferry back to Milwaukee. Shannon had a bit of an upset stomach and didn’t eat much breakfast. That turned out to be a good thing. The water was pretty rough on our ride and Shannon ended up getting sick. 6 weeks of radiation and chemotherapy couldn’t make her puke, but Lake Michigan got the best of her.
It feels like each day there is at least one instance that brings my emotions to the surface. Today this was it. Shannon was embarrassed and had a moment of fear about being sick and asked me point blank, “I don’t think this is anything to worry about, right? It’s just the rough water, right?” Of course it was, but she still had to ask. Just our daily reminder that we are always waiting for the other shoe to drop... Seeing the fear in her face made me cry and I struggled during the rest of our ride to gain my composure. I knew intellectually that this almost certainly had nothing to do with the tumor, but seeing her get sick got to me. I put the ipod on to settle by mind... David Gray and his track My Oh My:
My oh my, you know it just don’t stop
It’s in my mind, I wanna tear it up
And tryin’ to fight it, tryin’ to turn it off
But it’s not enough...
One rough boat ride aside, we had a great vacation in Michigan that included not only the four of us and our dog Sunny, but also my friend Teri and her dog as well. Having Teri drive the three hours from her Ann Arbor home to join us for our adventure was wonderful. Walking and talking on the beach with T was good for my soul. I miss her already.
Yesterday was made to order - hot and humid all day, with the temp reaching 93 degrees. It was so hot, even I went swimming! (I take an endless amount of grief from my water loving family for being such a wimp...)
The five of us took a mid day walk down the beach a mile and a half into the town of South Haven. By the time we got there, we realized that all of us walking back home was going to be asking a lot of Shannon and Erin. (Probably of me and Teri, too!) So, Dan ran back down the beach, in the hottest part of the day, to the house and drove the car into town to meet us and shuttle us home. Women’s lib be damned, the four of us girls appreciated his chivalry.
Last night we had one of those experiences that we will always remember. While the girls enjoyed some down time relaxing and watching TV, Teri, Dan and I enjoyed some conversation while looking out over Lake Michigan. On the Summer Solstice, the pink sky of the setting sun gave way to ominous storm clouds rolling in across the water. Lightning strikes were constant out across the horizon and we watched the storm cells approach from miles away. Amazing. As we sat and tried to figure out the meaning of life, Mother Nature reminded us that some things in this universe are just simply out of our control...

Tuesday June 21, 2011

Just as the doctors ordered, we are enjoying our "time off" from appointments and medications. Enjoying it, but I still feel like we are living in an alternate reality - when you are on a perpetual vacation, is it really a vacation?

Don't get me wrong, this is a beautiful place and a part of our country that the girls have never seen. They do love an adventure. We are renting a house, exploring new towns like Saugatuck and South Haven, and building sand castles on the shores of Lake Michigan.

Erin is our little fish. If there's swimming to be had, she's in - even in 58 degree water! Shannon loves walking up and down the beach, but she has been not quite herself. A little more quiet, a little more sassy ... maybe she's just acting like an almost 13 year old on vacation with her family! So, we try to call her on her attitude just like we would if everything was normal...

One more full day ahead of us here. Lots of beach time and hopefully a walk to town for lunch. The forecast is for hot and humid weather with a chance for a thunderstorm to blow in across the lake. Works for me...

Monday June 20, 2011

Our commute across the Upper Midwest took us by auto from Rochester to Milwaukee on Saturday.  Then with the auto (and Sunny) on the bottom deck - we spent Father's Day on the Lakes Express ferry into the Port of Muskegon, Michigan.  Now we are 60 miles south on the sandy beaches of Lake Michigan.  Warm and muggy...storms predicted.  The adventure continues...

Thursday June 16, 2011

Our summer whirlwind is just getting started and we are already exhausted!

Not really, but sort of.  I think we are just discovering that this hyper-speed pace we are choosing "is what it is".  I kind of hate that expression but in this case it "is what it is".  The good news is that there is very little time to pout or over-think because we unpack from one event and start organizing and sorting laundry for the next event.

Our trip to Lake Hubert worked out well with the girls getting some extended time with Grandma and Papa O'Hara and also their "quirky" Aunt Molly and Uncle Norv!   Games of Five Crowns and Quirkle were interspersed with chill time on the beach, boat rides and trips to Nisswa and Shannon and Erin's favorite shopping destination; The Chocolate Ox.  The laughs and happy times are a constant.

The weather was better in Nisswa than almost anywhere else in Minnesota.  The south winds kept the water calm in our bay and the loon pairings were active and fishing close to our dock.  The water was a cool 68 degrees but as usual; crystal clear.
The clouds broke Tuesday afternoon and we had several sunny hours on the beach with temps around 75...really nice.  Good time to throw the football off the dock, float on a raft, sit in the sand and read.  Our neighbors the Gustafson's gave us access to their boats.  Each day we went for a ride around the lake.  The girls love being out on the water.  On one of our boat rides we saw a grouping of around 30 immature loons gathered together in the middle of Lake Hubert.

On Wednesday it rained and made it the perfect time to pack up and head back to the Roch.  I was able to manage some work at the cabin with Internet access where ever my Sprint air card can find a cell signal.  With Jen driving, answering emails on the drive was also a solid use of my time.  I still have some good opportunities for new business in my pipeline that I need to keep in the air.  So far, so good.  I enjoy my work and my company and most of my customers so I do not mind checking in and replying even on vacation days.

Shannon and Erin are such troopers - great travelers.

So we were home Wednesday night...Shannon played hockey, we watched the Bruins hoist the Stanley Cup, and a Twins win over the White Sox....Thursday, the girls overnight with their BFF's the Gushulaks in Pine Island and Saturday we leave for Milwaukee...our ferry across Lake Michigan departs Sunday and then we will experience the eastern shores of Lake Michigan for a few days. 

South Haven forecast is calling for hot temps, maybe some summer thunder boomers. In Michigan, no one knows our name or our story and that might be - literally - just what the doctor ordered.


I am feeling a little self conscious about this blog today. It feels a little presumptuous. Everybody has stuff going on in their lives. Everybody. Anyone reading this could blog about their lives and it would give us a chance to know them better. We’ve chosen to write this blog as a measure of self-preservation - so we didn’t struggle to communicate individually with the family and friends that we wanted to keep in the loop. But, while what we are going through is all consuming and seems to be all we can focus on sometimes, we want to be mindful that other people have stories to tell, too.
Spending time on the Mayo 16 E pediatric unit always helps with perspective. We were there yesterday for Shannon’s blood draw and a quick look around at the children who are disabled and the looks on their parent's faces helps me find gratitude quickly. For now, Shannon is a smiling, soon-to-be teenager ready to do her best to enjoy a summer of fun.
The blood counts were good. Better than good. Nine days after ending chemo and one week after finishing radiation, all of her important numbers - platelets, hemoglobin, leukocytes - have begun trending back up. No appointments necessary from now until July 1st.

We finished soccer season today with a matchup against Erin's first best friend - our old neighbor Tessa. Fun stuff. The Fireballs have been a great team to coach. So, now with no more school, no more soccer and no more appointments, we are off and running with our June travels: a trip to Lake Hubert, followed by a trip to Lake Michigan, followed by a trip to the Wisconsin Dells.
There’s a little detail about this summer travel we’re planning that I feel compelled to mention. The freedom to do all this without stressing about it is due directly to the generosity of others. So, thank you.

Friday June 10, 2011

I had a chance to catch some of Oprah's final show.  Say what you want about Oprah, she has been an incredible inspiration to the masses.  On this day I was caught up by her ability to articulate her values and the confidence she has in those beliefs.  She reminded me that in God's universe "there are no coincidences, only a divine order."

She also stated that the ability to make a difference, to be a difference maker is right there in all of us.  You just need to go take it...assert it.  Oprah's confidence makes it sounds so easy.

Around our home the only person with that kind of certainty is Shannon.  Our "going-into" 8th grader has the most confidence in exactly what her role is.  And she's seized the opportunity to be a difference maker.

For me, Jen and Erin there seems to be less certainty in what we should be, how we should act, where to focus our energy.  I was a little out of sorts this week without the structure of daily radiation which provided us an order, a certainty to each day. 

With the kids focused on the field trips and the final days of school, I tried to work on my golf game but on the golf course my lack of certainty is completely exposed.

Thursday night at the Rochester Mayo HS Girls Golf banquet, Coach Myhro reminded us how critical confidence is to golfers and the girls should work on that as they practiced and played this summer.  Shannon always handles herself well on the golf course because she has always had so much confidence - a commitment to what she is doing.  So I'm going to try that now.  I know I can do it.  I've been good before.  I'm going to be good again. And - darn it - people like me!  (Stuart Smalley's voice echoes...that's not helping...)

Shannon took home the "Spartan Award" given to the player that displayed courage and spirit through the course of the season.  Shannon's buddy Courtney was "Newcomer of the Year".  It was a good night.  Again, a challenge to keep emotions in check.  But this night was about the golf team.  Good luck at state Katrina. 

I want to use this forum to express tremendous gratitude to the families of the 32 players out for Mayo HS golf this spring.  You played a really key role in keeping our spirits high in some really tough times.  Shannon loves being part of a team.  Just loves it. Thanks for making a difference.

Now if there is divine order, and no coincidences, Erin will get Mr. Mhyro as one of her teachers next year when she is a newcomer at Willow Creek Middle School.

Thursday, Erin said a tearful goodbye to Bamber Valley Elementary.  Thank you Mrs. Hammel.  Erin will never forget you.  Aloha means goodbye.

I have some solid song recommendations this morning;  Ray LaMontagne You are the Best Thing...Donavan Frankenreiter Bend in the Road...and an oldie but goodie from Joni Mitchell but the version I really like is from the Counting Crows Big Yellow Taxi..."don't it always seem to go, that you don't know what you got til its gone.." 

So now we plow forward into a summer of unknowns.  We will do so with confidence and gratitude for the many blessings we have in our lives.

Tuesday June 7, 2011

I am writing from the comfort of our air conditioned house as it is crazy hot here today - 99 degrees this afternoon! I find myself thinking about Erin and the 100 other 5th graders spending two nights down in the dorm style rooms at Eagle Bluff. Not ideal conditions, to say the least! I'm anxious to have her return tomorrow and share her stories with us.

The last couple of days have been strange without our daily routine of heading to Desk R for healing sessions. Dan and I even found time to play a round of golf together today. Something we did and enjoyed often before everything changed. Today we hit good shots, we hit bad shots, we made birdies, we made bogeys - just like the good ol' days. Sometimes we let our minds wander to where we've been and where we're headed, but we did our best to enjoy a good walk together...

Today's appointments brought some closure to the treatment phase and provided a game plan for what's ahead. First off, Shannon, Dan, and I had a chance to chat with our social worker. She continues to provide support and strategies for us as we try to balance what we want and need with the wants and needs of our family and friends. The support continues to be amazing and we never want to discount how important that is to us. But, sometimes the timing just isn't right. Sometimes we are just mad or sad or tired or don't want to talk and nothing anyone could say or do makes it better, yet people try, because they care. We strive to be as graceful as we can on this journey, but sometimes we fail.

While Shannon met with the social worker, Dan and I spoke briefly with Dr. Khan in hematology and clarified that the maintenance dose of chemotherapy will begin in early July. The exact date is yet to be determined, but the guideline is 6 weeks after the last dose of Temodar was taken, which puts us around July 13th. Dr. Kahn also explained that Shannon won't have to do another infusion treatment, but instead will begin taking an oral medication, Bactrim, each weekend once she starts taking the Temodar again. This will provide the protection her lungs need when her immune system is depleted by taking the chemo.

Shannon's second appointment today was a follow up with Dr. Laack in radiation. We learned that the hair loss will end in the next week or so and that the timeline for it growing back is around three months. She also confirmed that the follow up MRI will take place exactly 4 weeks after radiation: July 1st. So, that day, Shannon will have a scan and then an appointment with Dr. Laack to see the results. It goes without saying that we will be anxious to see how effective the treatment was...

The last appointment of our day was with our neurologist, Dr. Keating. She loves to chat and while Shannon was eager to move things along, Dan and I enjoyed sharing stories back and forth with her. A complete neuro exam showed all positive signs and Dr. Keating told Shannon she looks great. She also complimented Shannon on her strategic placement of her headband! We will next meet with Dr. Keating in August to check all the neurological markers again.

All that's left on Shannon's Mayo Clinic schedule this week is a blood draw on Friday. One more check of the counts before they free us for three weeks. After that, we have no return appointments scheduled until the July 1st MRI.

So the next five days: two more days of school, one golf team party, one blood draw, one last soccer game, one hockey camp, one cousin's graduation open house and then we are free to go and travel and enjoy the first part of our summer and try not to think about the tumor...

I updated my iPod today and the song that struck me was Coldplay's Everything's Not Lost:

When I counted up my demons
Saw there was one for every day
With the good ones on my shoulders
I drove the other ones away...

Monday June 6, 2011

A final push to summer vacation for the O'Hara's. 

Erin told me last week after her 5th grade graduation that ceremonies are for parents "but field trips are for kids!".  Her 5th grade class departs this morning for the Eagle Bluff Environmental Learning Center.  Three days and two nights deep into the bluffs of SE Minnesota near Lanesboro.  She's so dang excited.  We're excited for her too but it might be kind of warm in those dorms at Eagle Bluff.  Record highs are predicted for Monday and Tuesday.  I think E will be just fine.

Shannon's 7th grade class heads for Oxbow Zoo Monday.  Field trips and fun activities mark the final days of school.  On Thursday...cue the Alice Cooper classic...School's out for Summer! (no, I do not have that one loaded in the Ipod)

So with Erin away on a road trip, Jen and I will take Shannon to our Mayo Clinic appointments Tuesday.  A final blood draw to check platelet counts, another thorough neurological exam with Dr. Keating and a final rundown with radiation oncologist Dr. Laack who was kind enough to make an appearance and hand out hugs for us at Shannon's bell ringing last Thursday.
Even though the acute healing phase is complete, the radiation and chemo are still working their magic for the next couple weeks inside Shannon's brain.  But we expect mostly positive reports as Shannon has been feeling strong and her energy levels have been setting the tone for the family.

We hope the heat holds for our trip to Lake Hubert next weekend.  Either way - the kids are ready to rock!

Healing sessions are complete!

Ringing the bell

Saying goodbye to Jacque, Janelle, Shanan the Scheduler and the gang at Desk R

Yes, she was smiling ...

Friday June 3, 2011

It's a sunny and windy Friday morning here in Roch and I am finding a few minutes to relax. Starting my day with coffee and live tennis from Paris - the French Open men's semifinals. Going to root hard for Roger Federer today, but it's a long shot...

Thursday was eventful as Erin graduated from 5th grade at Bamber Valley. It's the only elementary school our kids ever attended and since Shannon started kindergarten there in the fall of 2003, it's been a big part of our lives. There were plenty of tears shed during the ceremony. Some were shed for Erin reaching this milestone, but emotions got the best of us when one of the 5th grade speakers, a neighbor of ours, talked about Shannon and her fight. Many of these families are connected to us one way or another and there was a round of applause from the parents and students who acknowledged our battle. Erin's classmates surrounded her for support as she cried. My first instinct was to feel badly for Erin - this was her day and the celebration was supposed to be about her. But, the reality is that when Erin or any of us looks back on this stage of our lives, it will always be intertwined with Shannon's health. We cannot pretend it isn't so ...

The rest of the celebration was more light-hearted as we ate lunch outside with Erin and her pals and their families. Nothing more need to be said about what had transpired. Erin has good friends and her friends have good families.

We didn't have our normal Thursday of appointments as we had adjusted our schedule to accommodate the graduation and Shannon's finals schedule. We did manage to do bloodwork and see all of our doctors over the course of a couple of afternoons this week. Nothing but positive reports - bloodwork looks good and by all accounts, Shannon has tolerated the treatment incredibly well.

So now we've reached a milestone day - the last healing session. Radiation will end today at about 1:20pm when Shannon rings the bell at Desk R to signal the completion of treatment. I find myself feeling conflicted. Proud that she has been so strong and hardly ever complained about this hand she's been dealt. She just battled through it every day, usually with a smile on her face.

But, I also feel sad and scared. Scared about the unknown. At least for the last 6 weeks we felt like we were doing something, taking action, talking daily with Jacque and Janelle and working our way through it. I'm sad that we won't have that daily support. After today, we will return for a set of follow up appointments next week and then take three weeks off from appointments and doctors as Shannon rests and recovers and the chemo and radiation continue to work on the tumor. We will return the first week of July for a follow up MRI and get our first look at how effective the treatment was at shrinking the tumor. The first week of July will also begin the maintenance phase of chemotherapy: strong doses of Temodar daily for 5 days, then 23 days off. That's the plan going forward to try and keep the tumor at bay.

So, wherever you are at 1:20pm today, have a good thought for our girl. The bell will be ringing, and my guess is, Shannon will be smiling ...

Wednesday June 1, 2011

Tossin' and turnin' at 00: dark :30 so it's back to the blog for some confessin'...

I was quite disturbed by yet another Twins one-run loss.  How many ways?  How many different kinds of ways can they lose ballgames?  A simple mind might think it's almost like the same dark cloud that is hovering over this Rochester MN O'Hara Family is also following the Twins through their 2011 journey.  But I'm certain that isn't what has my mind working hard in the middle of this night.

A friend sent me this verse from James 1: 2-4 “Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.”  His point of support was that we can grow through challenging times and events if we don't let them consume us.

Bible verses, prayers, music lyrics...they are all around most cases they just need an application.  And an open mind to apply them.  Can you tell I have my Ipod going? Currently playing; new Sheryl Crow, Long Road Home... "Bring me sweet relief, rid me of human grief, I am free from every hurt..."

I feel the need to address the issue of control.  It is an issue that probably creates the most stress around our home.  Probably not unique to us.  But in a time of crisis or inexplicable circumstance controlling behavior can be a toxin.  For someone in a program of recovery, it's a huge red-flag wavin' in the wind.  Let go, let God, right?

Jen and I addressed this with our Mayo Clinic case worker today.  Great stuff to get out on the table.  It's so easy for me to point fingers all around me as to the reasons for this or's meeting other people's's trying to be everything to's my's the weather... its the Twins bullpen...the list keeps growing.  And really all I need to do is look in the mirror.

The painful truth is that none of us have any control.  And what is going to happen next, who knows?  That is certainly the hardest part.  I make light of Jen's planning instinct more than I should.  But this lack of control is really hard on her as she - like most moms - attempts to lay out summer plans; enrolling the girls in camps, locking down trips to the cabin, scheduling stuff that needs to happen like it has every other summer.

It's like she said in her post yesterday; the longest 6 weeks of my life have flown by.  Hell, this six weeks may have been the easy part! The doctors set that up for us in April; 42 days of chemo and radiation treatments that will end Friday.  Then you go away and enjoy life for four weeks.  Then come back and we will scan Shannon's brain and we will know more.  You kidding me? Enjoy life?  I suppose this is where our endurance is supposed to grow?

So perhaps that's why I'm awake this morning.  I suppose this is where I would open the floor to comments.  But this is something Jen, Shannon, Erin and I will need to figure out because if we are lucky and God is willing this could go on like this for awhile.  How about for about 5-years while they master proton beam therapy or the next technology that will shrivel this growth in Shannon's brain?

Staying 100% in the present becomes the real challenge.  Yet that is the only thing we can control.  Erin graduates from Bamber Valley Elementary Thursday.  Friday she has a field trip to the DNR trout hatchery in Lanesboro.  Shannon will take 7th grade finals and then ring the bell at Desk R - a ceremony for patients completing radiation treatment.  Saturday we have Fireballs and hockey and more family...and life goes on...

It's likely Twins Manager Ron Gardenhire is also tossin' and turnin' this morning.

Must own music; Tristan Prettyman, Madly.  All better now.