Keep Reading Please!

Yes, I’m doing well.  Yes, I know I’ve been blasting you with Lung cancer Awareness information.  It’s because I LOVE YOU.  It’s just one month.  Stay with me here.  I’ve something personal to share that you’ve not seen.  Maybe it will impact your mind with visions of the power of hope, faith, and medical research.  It did mine when I recently read it.  It’s my CT scan report from February 25, 2016, the one that accompanies that image of my lungs that I’ve posted.

I didn’t realize it, but I was rapidly declining, dying, in late January  2016.  When I got my diagnosis and we made our way to Dana-Farber, it was a whirlwind of activity to make sure that the cancer in other parts of my body was lung cancer metastasized, and to begin radiation as palliative care in the hope that it would give me some breathing relief.  In the midst of all this, Dan and my sister were staying up with the medical stuff, the “kids” were taking care of things at home, and I was simply working to breathe, heart racing, one breath at a time.  I think I was unaware about my actual state.   How scared Dan must have been, knowing and being alone with me as I worked to breathe, heart racing, one breath at a time.

If you’ve been reading my recent updates, you know things are good.  The tumor in my left lung hilum has been shrunk too small to see, my liver, colon, and brain are stable.  Now read that February 25, 2016 CT scan report and be WOWed like I just was.

February 25, 2016 FINDINGS: 

CHEST: 

There is new complete collapse of the left lung. The primary tumor cannot be distinguished from the surrounding collapsed lung parenchyma. 

The mass displaces the left main pulmonary artery and left pulmonary veins with significant decrease in caliber of the left pulmonary artery. 

There is new large left pleural effusion.

There is a discrete enlarged, enhancing 2.0 x 1.7 cm lymph node posterior to the main pulmonary artery (2:29). There is also 14 x 8 mm subcarinal node. These nodes were previously difficult to distinguish on the noncontrast images from the prior PET/CT.

ABDOMEN:

Significant increase in the right hepatic mass measuring 4.5 x 3.9 cm, previously 1.9 x 1.7 cm (3:26). There is increased enhancement in the surrounding liver parenchyma on the arterial phase images. There are 2 other sub-5 mm hypodense lesions in the segment 6 that are too small to characterize. 

PELVIS: There has been interval increase in the serosal deposit at the rectosigmoid junction in the pelvis measuring  26 x 23 mm(3:69), previously 18 x 15 mm (3:69).

Okay, that’s it.  Were you WOWed reading that, knowing that I’m still here and functioning well three years after that?   I was pretty darned impressed with what medical research has made possible.  A targeted therapy cancer drug stopped the spread of the ROS1 cancer.  When it crept by crizotinib (under the cover of darkness I think!), and found my brain meninges, a second target therapy drug, not even approved yet, was available to me and stopped the spread again.  Hope, faith, and medical research.  Wow.  Research funding is needed.

I’ve been fortunate to be in the right place at the right time while on this cancer journey.  I started treatment in one of the premier cancer treatment centers in the world.  There, I can participate in clinical trials that are only available in a few places in the country,  and unfortunately not accessible to many.  Also, luckily (or thanks to hope, faith, prayers) I’ve met the criteria to enter the clinical trial.  Being healthy in all other ways helps in this.

Four things I hope you’ll take from this post:

  1. Take care of your body, listen to it, and advocate for it.
  2. If you have a cancer diagnosis, find the best treatment available to you.
  3. Always have hope.
  4. RESEARCH FUNDING IS NEEDED.  You can help by advocating, spreading awareness, or donating. Over 400 Americans are dying every day.  Help, please.

If you want to donate to the patient-driven research being conducted on ROS1cancer, here’s my donation page: ROS1 research donation .

That’s my story and I’m sticking to it.  Thanks for reading.  Always have hope.  Today I’m spending the day with one of the grandchildren.  How lucky am I? I say, VERY!  Here, finding joy in the everyday every day.

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Stay Focused on HOPE

“It is what it is. Life is what you make it.  When life give you lemons…”  You get the idea.  Don’t offer me any more of them right now.   Please.  And, thank you.

Today I had a meltdown, a rather big one.  I share this because sometimes I think I make this living with lung cancer stuff seem much easier than it is.  And that’s not fair to all those living with lung cancer or their caregivers.   I have so many things that are going right on this journey and so many blessings every day.  The reality is that many are really suffering and over 400 Americans die of lung cancer every. single. day.

It began quietly, building throughout the day.  Dan and I were both aware it was happening.  He tried to steer it in a more positive direction.  I could do nothing but let it go.  Every little thing throughout the day reminded me of what I cannot do because of lung cancer.  (Not my usual self.)  By the time I realized that my somewhat crazed state was likely my medication doing it’s job in my brain, I was in tears.  Sobbing, I said over and over, aloud and in my head, “I don’t want this lung cancer anymore.  I don’t want this lung cancer medicine anymore.”  Well there.  Okay then.  Now that’s wishful thinking.  Because really? Really, for me there is no choice.  I can’t just wish this cancer away.  Anymore than there’s a choice about aging.  What’s the alternative?  Death.  That thought knocked some sense into me.  I’m not ready to give up on life yet.  I’m still a healthy, young woman, just with lung cancer – my first brilliant oncologist Dr. Gandhi told me so!   I wiped my tears, apologized to Dan, who held me through it all (as he always does), and moved on with my day.

Tonight I’m back to normal, my normal.  Living well with lung cancer.  And I know my medicine, the fair Lady Lorlatinib, is reaching and working in my brain.  I don’t mind that my fingers and hands feel prickly as I touch the keys.  Neuropathy, it’s a brain thing.  It’s like I told my oncologist about my odd headaches, vision flashes, and messy speech – it means the medicine is working in my brain.  Lady Lorlatinib is working very hard to contain and control that nasty little ROS1 riding around in his sports car throughout my body.  I am grateful for this powerful drug and the research teams that identified ROS1 and treatments to slow down that speedster.  Tonight, why, I even laughed when I put my cup into the cupboard to warm instead of the microwave.  Huh, no buttons to push.  Oops!  (And no, everyone doesn’t always do that – I never did…)

My purpose in sharing this post  is why I share my journey at all – to help people understand the metastatic cancer journey.  To inform people who are well, so they may reach out to others with compassion.  To inform others with cancer about the importance of finding excellent treatment, keeping your body healthy, and living with peace and hope.  For me today was just a blip on the screen.  Kind of like those teenage PMS days. The real me – I am at peace with my life,  filled with hope, and surrounded by love.  I pray for that same state of being for all who travel this road.

This is Lung cancer Awareness Month.  Beware!  And BE AWARE.  If you have lungs, you are at risk for lung cancer.  Early detection can mean possibly being cured, saving a life.  Detection and genomic testing can mean a targeted treatment, saving a life.   Research funding is needed so that the heroes can do their work, finding treatments, causes and preventions, and cures.

Me.  Finding joy in the everyday every day, in the barn with the goats, snuggled on the couch with the three little dachshunds, just being here with Dan, in our home on the side of the mountain.  Thanks for listening.  Your prayers and thoughts of strength and positive energy for all who have lung cancer are needed and appreciated. Love to all.

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Good news Health Update

Chest and abdomen scans, brain MRI, and blood work all look good!  Wow, that means the cancer that is there  is stable and the drug isn’t messing with my body badly enough to need to make changes.  Now, unless I become symptomatic, we can breathe a sigh of relief for another nine weeks.  That takes us through the holidays all the way to my third cancerversary!  Yup, three years since the big blindside.  Three years of figuring out how to live well with metastatic lung cancer.  Three years of living!

Below:  February 2016 and May 2016 after two months on my first targeted therapy, crizotinib.

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Yesterday at 3:30 a.m. we left home to drive to Dana-Farber Cancer Institute for the above tests  and an appointment with my oncologist and clinical trial nurse.   Big traffic jam getting in, but 6 hours later we arrived, parked, made our way to Dana L2 (I think).  I got my beverage of the day in prep for the scans.  Then blood draw (extra for the study) and IV in for scans.  Scans done and in for brain MRI.  Ear plugs, bean bags around my head, hockey mask on, and slide in for a noisy, long nap.  Did I say it was long?  Oh yeah, I did. IV out. Then back to Yawkey and up to 3 for a very quick cafeteria  lunch, and on to the 10th floor.  Vitals done (anyone wonder why the blood pressure might be up), EKG, and off we go to the patient room.  Whew!  In comes a fellow (yes, a fellow fellow) and the nicest trial nurse you can imagine.  Dr. ? (the fellow) told us the scans looked good and that Dr. J, my oncologist was waiting for the results of the MRI and would be in shortly.  We talked about my neuropathy, and my theory that the tendon inflammation I have (hands and feet) is related.  No one can explain it to me, still.  After listening to my heart and breathing (all good!), the fellow left, we talked with Nurse D, and then soon the Fellow and Dr. J were back. The brain MRI looked stable too.  So, good news all around.

Dr. J suggested I might want to reduce my dosage again to see if that helped with the neuropathy.  Early on in the trial we reduced the lorlatinib from 100mg to 75mg for that reason.  I said, “No thanks, I don’t want that nasty beast back in my brain.”  (Not that it is totally out.)  We talked about it a bit more, and Dr. J said, “So you can live with it this way?”  And of course I replied, “You used the key word there.  I choose to live. I’d rather not take a chance on it now.”  And so, I remain at 75mg.

Finally it was off to floor 2 to wait for the cancer fighter, our Lady Lorlatinib.  I imagine her dressed in white this day for Lung cancer Awareness month, riding from the heavens on Pegasus.  She is a powerful ROS1 cancer fighting targeted therapy drug – that I know.  Whenever I feel her working in my brain, I am grateful.  Grateful to ALL that make it possible for me to live.

When everything was done, it was only 2:45 p.m. We find the car in P5 and head to Seabrook (much cheaper place to stay), an hour away.  In good traffic that is.  Two hours for us yesterday…   Dinner and off to sleep. Up at 5:00 a.m., a stop for breakfast, and home before 10:00 a.m.   A whirlwind 30 hours!  For both of us – thank you Dan.

And now here I am on the couch with the dachshunds, bird feeders filled!  Finding joy in the everyday every day.IMG_0763.jpg

 

ROS1ders are raising research funds to learn more about, and to find treatments for ROS1 cancer.  If you can help us, just follow the link below.  Thank you.

Donate to ROS1 cancer research

Feeling Grateful for the Opportunity

Feeling grateful, again, still, always.  Yesterday was a purely nice day.  It was the day of the annual Save Your Breath 5K to benefit the work of (Free ME from Lung cancer) , an organization that more Mainers need to learn about.

On the first Sunday in November, runners gather at the Y in Augusta at 7:00 AM (only it feels like 8:00 due to time change).  Many there are running because they love running this late season race, many others because they love someone with lung cancer, have lost someone to lung cancer, or have lung cancer themselves, and some run for both the love of running and the cause.  This latter describes my grandchildren and  their mom, my daughter by marriage and heart.  They love to run and they got up at 5:00 a.m. to travel to the race in my honor, to support Free ME from Lung cancer.  And running with my grandchildren was their great-aunt, my sister.  On the sidelines with me were Dan, my son and my brother-in-law. It was so wonderful to watch Team polepolebreathe.org in their tie-dye T-shirts (over or under their warmer gear) running or watching on this crisp, clear November day, supporting the lung cancer community. Just perfect.

After the race we went to breakfast at Mulholland’s Augusta House of Pancakes.  It’s a great restaurant, we love that you can walk in with a large group (last year I think we had nine) and they will happily accommodate you.  A couple of interesting things happened there. First, a governor candidate stopped by our table, noticing the “matching” Ts and asked my granddaughter what we were up to.  Ten year old C. did an impressive job of explaining.  The candidate seemed to have no awareness of the event, despite the promoting Free ME from Lung cancer does in that region of the state (and has for the six years of the race.)  If that candidate wins, they will get a letter from me while we are still “fresh” in their mind.

And then came an opportunity, for the children and for the grown-ups as well, to understand better why we participate, why I post.  It happened as we were leaving.  Our waitress must have asked my son (walking out just in front of me) if we had a family member with lung cancer.  He replied his mom.  With eyes filled with tears, she shared that she’d just lost her mom.  He quickly said, “My mom’s right here.”  By then, while I hadn’t heard the words she’d said, I knew she’d been deeply hurt by this cancer monster that took my dad and has so changed my life.  I stepped up, and she asked if it was me who had lung cancer.  Nodding, I said, “You look like you need a hug,” and reached out to her.  Here, in the middle of the restaurant, two strangers sharing  this bond, her grief, my hope, our compassion. In that hug I could feel the love for her mother.  She asked about my health, so grateful that I’m doing well.  And even though she doesn’t know my name I know I’m on her prayer list, and she on mine.  An opportunity to understand.

The cancer journey – when you’re stage IV I think “journey” describes a healthy, forward-looking approach – is filled with wonderful opportunities.  Sometimes you need to seek them out and sometimes they find you.   Be open to them.

Lung cancer awareness can save lives.  Test your home for radon.  Know the symptoms.  Don’t ignore that persistent cough-cough.

Finding joy in the everyday every day.

Health Update Sept. 6, 2018

Nothing but smiles!  You know it’s good news when at the end of everyone’s long day, we’re all smiling – oncologist, patient, and caregiver.  Worth that traffic, worth staying overnight, worth going through a day of tests every nine weeks (lots better than the 3 at the start of the trial).  “Everything looks good.  Your brain MRI looks great!”  Wow, what more can we hope for in a visit.  Feeling grateful and blessed.

Yes, I still have metastatic (stage IV) lung cancer.  Yes, it is still hiding out in my lung, my liver, my colon, my brain.  We coexist in one body.  We will for life.  But, oh what a great life it is!  Since my first targeted therapy (my superhero Crizotinib Xalkori) in March 2016 to now I’ve learned to find joy in the everyday aspect of living in ways I don’t think I’d have taken the time to if not for this ROS1 cancer.  Since the Lady Lorlatinib (my clinical trial drug) charged in (July 2017) to protect my brain meninges as well as the rest of my body, I continue to not only survive with metastatic lung cancer, I’m LIVING well.  I know I am lucky that I’m able to simply enjoy my days, at home, free from fretting about needing to work, free to do as much (or as little) as I feel like doing. My heart aches for those whose circumstances don’t allow them to do this.

I continue to volunteer for Lung Cancer Alliance as a phone buddy and as a patient representative on a grant advisory board, as well as on an advisory board for the Maine Lung Cancer Coalition.  Also, as a ROS 1der, I try to spread awareness about the Global ROS 1 Initiative ROS 1 Patient Driven Research and the need for research funding so we may work toward the next treatments (as resistance occurs and the targeted therapy becomes ineffective), and ultimately a cure in the future.  Donations (ROS1 research donation) and ideas for raising funds and funding sources are welcome.

Thank you for your continued interest in this cancer journey, your prayers and positive words of encouragement.  Time for me to pick some peppers and tomatoes, maybe make a little salsa.  For the next few weeks I’ll be finding joy in the everyday, every day at our Salt Pond camp with Dan, the three little dachshunds, and… our two Nigerian Dwarf goats and two Tennessee Fainting goats (yup, it’s true, the herd grew.).IMG_9895.jpg

Health Update July 3

Health Update July 3, 2018. “Scans look good!  Blood work is all the same.  How are you feeling?  What have you been up to?”  This is how the oncologist (one of my heroes in this journey) comes into the the room.  “Phew! I feel great now,” I think.  Moments before Scanxiety had taken a stronghold over my usually calm mind.  It’s nerve-wracking, this journey in which the things that are likely or even certain to happen eventually (like drug resistance) may carry with them few to no options at this moment in time.  Time on a drug means time for researchers to work their magic and develop the next line of treatment.

Just to recap this journey – diagnosed Jan. 2016, metastatic non small cell lung cancer -tumors in left lung hilum, liver, pelvis.  (NO. I never smoked.  Silly you, silly me.  I HAVE LUNGS!)  Okay, enough on that. Radiation to lung as palliative care.  Genomic testing showed that the ROS1 mutation is driving this cancer. March 2016 – First wonder drug crizotinib – lung tumor can’t be seen, others stable!  March 2017 – nasty beast crept into my brain meninges where crizotinib couldn’t go.  But while the fair lady crizotinib was saving my life, researchers were developing her stronger, more versatile friend Queen Lorlatinib.  July 2017 – entered Lorlatinib trial.  Lucky to be able to do that at my treatment center.  (That’s why we travel to Boston for treatment, they’ve kept me alive.)   Clinical trial means trips to Dana- Faber every three weeks, then six, now every nine weeks.  Both drugs are oral, taken once or twice a day.

Today marked a year on lorlatinib.  My appointments began with a blood draw and IV inserted. For the first time, the first vein didn’t work, so I got stabbed in both arms.  Next up was the brain MRI.  The techs complimented me on how well I did. “Practice, lots of practice!”  I replied.  When they apologized, I said, “Oh no, it just means I’m still here and that’s a good thing!”  Then I got  my yummy drink for the CT scans of my chest and abdomen. All the while Dan waits patiently.  After these tests in Dana, we walked through to Yawkey for lunch and then up to floor 10 for my EKG and Dr. appointment.  Here’s why the Scanxiety set in at that moment.  After doing vitals (good, oxygen a little low), instead of doing the EKG, the nurse took us through a different door than usual to a room to wait for the Dr.  This weirded me out big time – not my routine, not his room, what’s up?!  Nothing, it turns out.  Sorry that I scared us both.  Different room probably because Dr. Janne doesn’t usually see patients Tuesday, but was going to be away Thursday.  They  truly forgot my EKG, maybe in their excitement to go home for the holiday.  Did it after the appointment, and it was fine too.  All good, see you in September!  Camp Gramma is good to go for the rest of the summer!

Now, I write this blog for a few reasons: to keep those who care updated; it’s therapeutic for me; and to inform people through sharing my experience, and advocate for those on this journey of living with metastatic cancer.  I know I’m lucky to be alive.  That being said – it’s not like someone chooses to have metastatic cancer.  I can now though help others by sharing – thus bringing purpose to this experience.  So when I get wordy or meander off topic, it’s likely meaningful to me for one of the above reasons.  You get to choose – don’t read it, read the first paragraph to see that all is okay, read until I wander, check out the tags and see if you can tell why I chose them, or read it through.  No quiz at the end!

Today too I had to re-sign my clinical trial agreement as there were some changes.  One is great news I think for my fellow ROS1ders.  The trial is expanding from 30 individuals (with ALK or ROS1 NSCLC, brain progression) to 48.  More lives saved!  And the other reason is that now the side effects are better defined, and one with a small chance of happening is a very serious heart condition.  But seeing the list of side effects brings up a part of this journey that I touch on, but try not to dwell on.  It is though what I and anyone else on these drugs experience and some we will deal with for the rest of our lives, however long that may be.  Keep in mind that before cancer I took no daily medication, and have no other health issues.  Here are the risks on the lorlatinib list that I experience:  increase in cholesterol and triglycerides (take a statin now for that); damage to nerves in arms, legs, feet, and hands (tingling, numbness, pain, tendon inflammation now in hands and feet) – drug is reaching my brain!;  mood changes, including irritability (I don’t see it much, but I’m pretty sure Dan does and helps me through it) – drug is reaching my brain!; slowing of speech – drug is reaching my brain!;  swelling of legs; fatigues; weight gain (can’t change this no matter how hard I try).  There are others that I don’t experience.  My strategy in thinking about this is to do everything I can to keep my body and mind as healthy as I can.  No sense in thinking too much at this point as to what damage the treatments and the tests (at least 14 brain MRIs, 14 CT scans in just over a year)  are doing.  Actually the idea of dealing with the long term effects simply gives me hope that there will be a long term in which to deal with them.

Always have hope, faith that there’s purpose in your journey, and love for and in your life.  That’s it for now – I think my mood’s about to change!  And laughter, always have laughter in your life.  Maybe some children, kids, and dachshunds too!  Thank you for your thoughts, prayers, and love.  Love to all.  Enjoying the everyday, every day here, there, and everywhere – that’s me.

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Camp 2018

Father’s Day 2018

Father’s Day 2018

Father’s Day, a special day to honor fathers.  As I write this Dan is coaching a Little League game. He is coaching with Tim, our son, who is also a father.  On the team is Tim’s 12 year old son, one of our five grandchildren.  It is the last game of the season.  This may be the last time these two fathers have the opportunity to coach LL together – with much sadness they think this is so, I’m not so sure.  Time will tell.  To me, on this day before Father’s Day, what they are doing is one day in the greatest of love stories,  This story includes not only them, father and son, but my father as well.

I shall try to tell this baseball love story through my eyes, watching it for the past nearly 40 years.  Baseball is only the vessel, or vehicle perhaps, in and through which this story unfolds.  Not that baseball isn’t one of their passions!  Believe me, they all shared a passion for the sport, especially Little League.  But passions, I think, are developed, nurtured over time, under certain conditions.  And in this story of mine, those conditions are love, time, and dedication.  Their many talents and skills, innate and learned along the way flourished under these conditions.

I don’t really remember quite how the beginning of this baseball love story all came to be – I’m sure Dan could fill in the details for me, but it’s my story, so…  When our children were young, about 7 and 5, my dad recruited Dan to help coach LL baseball when my brother was playing. We were part of the group to begin official LL in our area.  I recall many meetings before Coastal Little League was a reality.  A desire to see something done correctly, well and be sustainable brought people together, for the players – children ages 9-12 at the start.  Dad and Dan, working together, were instrumental in making that happen.  Looking back, this was the first test of the conditions of my story – love, time, and dedication.  My dad and Dan’s relationship strengthened and flourished through their shared passion for youth sports, in this case baseball.  

And so it was, before our children were old enough to play, Dan became a LL coach.  And because we always did everything together – our children grew up at the ball field.  And the baseball love story flourished – often with my dad keeping score, Dan coaching, and our son usually sitting on the bench, soaking it all in.  All-star play was especially exciting in those beginning years with Dad as official scorer, a role he kept for years, and Dan learning to become the great coach he is today. And then it came time for our children to play – first our daughter who went on after LL to play softball in middle school and high school, and then our son, where the father-son baseball love story took on a life of its own.

Dan loved coaching Tim’s team, and they were a fun bunch of kids.  Tiny, but mighty.  We lived LL baseball for four years. (Many more before and after, but four with Tim in LL.)   Regular season, all-stars, tournaments, Blue Hill Fair – they just couldn’t get enough baseball.  The summer of 1990 was maybe the pinnacle of the LL experience for many of those involved.  It was a magical summer.  Father and son lobstered together by day and played baseball at night.  If they weren’t playing baseball, they were talking baseball, strategizing and preparing for the next big game.  As a catcher, Tim became the coach on the field, able to see the game only as one with experience can – at 12.  The highlight of this summer was making it to the State Tournament.  I well remember seeing them all -grandfather (my dad), father, and son as they looked over the beautiful new field they would be playing on, as they worked together, again – scorekeeper, coach, and player over the course of the tournament.  There were so many moments lived and memories made that are truly priceless from those few days.  Not just for them of course, but my story is about them, the fathers in this love story.  Love, time, and dedication: to youth baseball, to doing things well, to one another, sustained over time, through love.

Dan continued to coach Tim’s team until there weren’t teams for Tim to play on that he could  coach. Tim played in high school, American Legion ball, and in college.  His dad always there to watch him.  Love, time, and dedication – most of all love – from it the others come.  But the love story had been written and couldn’t end when a boy is 12 or 14 or when there isn’t a team to coach.  There’s always a team to coach!  Because when you’ve built something correctly and well, and you nurture it through the years, it not only sustains, but thrives, flourishes.  And so started a new chapter in this love story – father and son coaching together, son as coach with father helping.  It never matters to Dan.  As much as he loved coaching Tim, he loves coaching with Tim.  He admires his son’s knowledge and skills, the way he conducts himself, his way of working with youth. Dan talks with me about the things he can contribute to their shared passion when working together.  “What love and dedication,” I think! 

Dan’s early coaching led him to coaching many other youth sports over the years with our daughter Mandy and Tim, and even with our grandchildren beginning with PeeWee basketball 14 or 15 years ago.  This year, 36 years after that first season of baseball, he coached his granddaughters’ elementary school basketball teams with Tim and Mandy both working with him.  Love, time, and dedication: to youth sports, to doing things well, to one another, sustained over time,  all through love.

Today I think of my father and how very happy, and yes – proud he would be to know how this love story has flourished. Grandfather and father coaching the son.  Giving one another love, time, and dedication.  And doing it well.  May all children experience such love.  My timeless love story, never to end…

 

And yes Dad (and all you other Coastal LL baseball fans out there), even though they are coaching and playing for what was once their rival team, they won the league championship today!