We are officially PRN (aka kicked out:) )

So, we had a rheumatology visit last week.  I’m embarrassed to say it was our first visit in a YEAR.  Our last visit was in May, 2014.  We had another scheduled last September – and then the doctor needed to reschedule and they left me a message…and I kept forgetting to call and boom!  It was May again.  Obviously, that can only happen when things are going really, really well.

Caitlin has actually been volunteering at the hospital two days a week.  Eventually, she was scheduled down in Peds Rehab, where she saw all of the therapists and nurses that have watched her grow up – and they would gape and marvel at how tall she is, how mature – how fast time has flown and how miraculous her progress has been.  It wasn’t long before she was permanently there each week – filing, helping out and making appointment reminder calls.  After so many hours spent there over the years…what a thrill to be there as part of the team, instead of as a patient.  Then it was realized that she is overdue for a visit and the nurses told her to remind me.

When I called, the receptionist did not know her name and suggested that maybe she had been dropped from the system.  “Just look for the 2 massive three-ring binders”, I said.  “That’s her file.”  Ohhhh….yes! Caitlin!  Yes, of course!  It’s been awhile…..

Seeing her doctor is like visiting family.  I am filled with a feeling of gratitude and appreciation for him….and we have such a long, shared history.  Hugs all around.  Smiles all around.  Sharing stories… the driving, the new boyfriend she has….the colleges she has visited.  And from him – his poor puppies attacked by coyotes…his summer vacation plans…his suggestions for becoming a nurse.  And all the while through the chatting, he is inspecting,  bending her knees, elbows, wrists – feeling each finger, turning her head, raising her arms up – having her make what he calls the ‘Buddha prayer hands’ to test her wrist flexibility. praying_hands-500x375 He glances at me with raised eyebrows and a shrug and a smile at the corner of his mouth.

There is nothing.  No inflammation.  No signs of active disease.  The remission continues.

Amen.

“Well, what do you want to do?” he asks my daughter.

“What do you mean?”

“I mean, you are officially PRN.”  Even without knowing what the definition is – without knowing that it stands for the latinxigRad6iA ‘pro re nata’ – to mean “when necessary” – she gets the gist.

“Are you kicking me out?”  She asks incredulously.

“Not exactly the words I would use….” he pauses…”But I do have 800 patients on the waiting list, and you don’t need me.  You are done.”  I silently add in my head…”for now.”  Because I don’t have the courage to ask him if he thinks it really possible that we are done for good- I don’t want Caitlin to hear the answer…and I’m not sure I could handle it if I acquiesced to that possibility and it turned out he was wrong.  A recent article outlined a limited study that examined flares after condition control and treatment withdrawal.  Surprisingly, the study found that systemic kids are the least likely to flare after condition control, and in the first year after stopping treatment – which is something I have never, ever heard of before.  If anything – it’s my experience that it’s a fairly long, rough road with very few smooth patches for systemic kids.  Which is one of the reasons that I have always found Caitlin’s remission so mysterious and miraculous.  And I am not using those words flippantly.

Then again – I always remind myself that it’s the sickest kids I see most – and the parents who are struggling through the rough days that are posting and asking questions and reaching out for the most part.  Are there a bunch of kids out there on “PRN” status?  Are there a bunch of young adults who are “done” with all this? Maybe there are… a bunch of JA warriors who graduated on and are so busy living normal, pain-free lives that they aren’t around to tell us that it’s possible.  That it can happen.

It has been another 15 months of no medication. And that was a short stint of meds after 2 years of no medication.

We decided that a series of baseline x-rays is in order… to see how the hip implants are doing, and to get a sense of the level of deterioration in her knees, wrists and ankles especially.  He vaguely referenced the need for initial films in case of ‘future replacement surgeries’ – and I know he means that her knees might have too much damage, even without future disease activity.  But I don’t dwell there.  Because we are PRN now.

We decide that we will make an appointment next summer.  So that she can come see him after she knows where she will be going to college, and he can make recommendations for care providers in that area – most likely an adult rheumatologist – because she will be transitioning.

Here we are.  Officially PRN.  I’ve still got my JIA mom membership card.  But I would gladly turn it in for Emeritus status, if such a thing exists. No guarantees.  But lots of Hope!

 

Posted in Overcoming obstacles, Remission | Tagged , , , , , | 4 Comments

How Much for a Cure?

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So – nobody won the Mega Millions jackpot last night, which means that it is likely to reach over $250 million for the next draw.  I don’t know about you, but when I think about that kind of money, what I imagine more than anything – more than buying a house with enough bedrooms for my kids, or buying a car, or sending my folks on a cruise around the world… what I imagine most is this:

I am sitting in a room with the best and brightest researchers in the field of auto-immune disease.  We lock ourselves in for days, weeks, months even – discussing the most promising research projects to tackle – What lessons can we learn, what answers can we find? What are the next puzzles to solve? If each new thing we uncovered was like one of those blocks in Jenga – and we pulled it out of the  mysterious tower of pediatric rheumatic disease like Jenga pieces – how long until we make the tower fall and the disease is no more?  jenga

Maybe we won’t know exactly which way to go… but we will have several promising ways outlined.  And then I just write a check. I would gladly hand it all over if it would be enough.  Can you see the check?  How much do you think it’s for?  I bet you have dreamed of writing that check too.  And then, after the work is completed, after the project discoveries pull all those pieces out of the tower – no kids have to live with this sticking disease anymore – because we will know how it is caused, how to stop it.  There will be a cure.

Do you ever wonder?  How much it would take?  If we had a blank check right now… what number would we have to write in to find a cure?  What else would we need to make that happen?  I mean, we all say we want a cure – we want it yesterday.  But in many ways – I cannot concretely define how much closer we are than we were when Caitlin was diagnosed 14 years ago. I can tell you much of the advancements in that time – I can tell you about cytokines that have been identified, how we transitioned from”rheumatoid” to “idiopathic”, about medications that have been developed and how the treatment protocol pyramid was flipped.  So, I guess I can tell you the distance from where we were, to where we are now.  But I can’t really define the distance between where we are and where we want to go as clearly.

I had a rare opportunity to be at a meeting with seven pediatric rheumatologists a few months ago.  It was shortly after the Powerball Lottery had just paid out a $564 Million jackpot, and my head was swimming with check-writing, research-buying, cure-finding fantasies.  After the meeting, I was riding back to the airport with several doctors, and I leaned in and asked one of them…. If you had unlimited time and money, how much do you think it would take us to get to a cure?

Her answer was not what I expected at all.  She said, with barely a moment of hesitation, “$50 million and ten years.”

Hmmm.

Now… let me caveat – this was one doctor’s opinion.  But she is a pediatric rheumatologist involved in research.

So, I don’t know about you – but my initial reaction was two-fold.  The first: $50 million…. is that all?? The second : ten years is too long.

$50 million dollars?  What if that was close to being accurate?  I mean, I don’t have that much in my back pocket… but somehow it doesn’t seem unattainable.  Last summer the Ice Bucket Challenge raised $115 million for ALS research.  That was astounding.  But I bet – if it had been true that $200 million was what was needed for a cure- we could have gotten there.  I don’t know the way to get a $50 million check….but if I thought that would get us a cure…If I believed that it would mean understanding these diseases – and mean no more lupus, no more more scleroderma, no more dermatomyositis – no more more juvenile arthritis….I would do everything within my power to find the way to $50 million dollars.

As for the ten years, it seems too long.  I  know for sure it seems too long to the mom of the 18 month old who was just diagnosed. She can barely imagine how they will cope through toddler years – thinking of her future tween still dealing with JA is almost too much to contemplate.  Ten years of childhood is too long to have to say “No” to bounce houses, or not be able to sit on the floor, or not be able to jump on a trampoline without paying the price the next day.  It is.  In so many ways, tomorrow is not soon enough for a cure.

But we’ve done 14 years already.  Ten more will make my daughter 27.  And when I think of the things she might be wanting at 27?  Well…I’d welcome a cure for her then – I’d welcome a cure gladly before she has to worry about whether this will affect her own children.  Or possibly her brother’s future children.  Before it affects her career.  Ten years? If it meant never having to flare again?

I just keep thinking about those numbers.  $50 million dollars and ten years.

In my heart, I don’t think she is right.  But, I decided that now, I’m going to keep asking that question.  I’m spending more time really investigating how other diseases are making progress – how patients are collectively driving research and treatments – how shared data is speeding up change and advancement towards remission and cures.  I’m really trying to put a number on the distance between where we are and where we want to be… and trying to understand how we can all play a part in getting us there. It’s not some magic fairy that is going to solve this – no single person will find the solution.  We all will play a part I think.  And so, I keep coming back to that fantasy of the blank check, and my question….

How much for a cure?

What do you think?

Posted in Awareness / Advocacy, Diagnosis, Flares, Remission, Uncategorized | Tagged , , , , , | 2 Comments

Edge of Seventeen….

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My daughter Caitlin, my oldest child, turns seventeen tomorrow.

Writing it, saying it – doesn’t make it any more believable.  Wasn’t I just carrying her in a backpack? Weren’t we just painting the bedroom pink and thrilling over Princess sheets and the new, big girl bed?  The sigh at the argument over whether she could wear the red sparkly slippers to the park seems fresh on my lips. The long battle over when to get her ears pierced….when to be able to wear lipstick – still a catch in my throat.  Now, the America Girl collection is packed on the top shelf of the closet, above the fashions, the stylish boots (that are almost my size) and collection of nail polish and makeup…. and she would like a piercing at the top of her ear now, please.

That doesn’t even begin to touch the arthritis journey… and what that has meant to her childhood.

And here we are, on spring break, touring colleges.  COLLEGES.  Because she will be a senior next year.  Hypothetically, in a mere 17 months, she could be moving away to go study. Away.  From me.  Here we are, with a young woman who drives and volunteers at the hospital.  Who is interested in possibly being a nurse – or possibly pursuing business marketing.  Here we are, looking at dorms and being handed flyers from student clubs, and examining the amenities of the rec centers and libraries.

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This is a period of much transition.  I am trying so hard not to be a helicopter parent – and yet, my soul is not supporting free range.  Every time she wants to go to a new friend’s house, go to the beach, drive out of a ten mile radius- I feel like it is a fresh examination of the balance between letting her gain experience and a sense of responsibility, and holding the reigns tight enough that I KNOW she will be safe. But always, there is the voice that reminds me….  It won’t be long until I am not there – until she may not be here.  So, I want her to stretch the wings here – where I can pick her up if I have to, help when I can- discuss the lessons….. instead of her doing things for the first time when she is miles away.

The question of how arthritis might come into play is a big one for us.  Even though Caitlin is still in remission, still off all medication……which is a miracle and mystery to be sure…. there is no guarantee with this disease.  I was at a meeting last month and had a long talk with Mike O., whose son was very much like my daughter.  He was in remission – doing great – until his first semester at college, when he flared so badly that he had to take a semester off.  Three years later he is still struggling to get the disease under control again. It is affecting his grades, his energy, his ability to live away from home, his ability to hold a job.  That story, which I have heard a number of times from other parents and from so many doctors – the story of how juvenile arthritis dormant through teen years comes roaring back just as somebody embarks on adulthood- hangs over me like dark clouds.

So – in  all the moments that we are trying to thread with our gratitude that things are going well, we are also trying to prepare for the possibilities.  Seeking that balance of wanting to enjoy all of these exciting days, and trying to prepare this young woman for what may happen.

Even though I have not been the best at building her skills for this transition (which is another post coming soon), I am very impressed with the questions she is asking and the points she is considering.

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Where is the health center?  What are the hours?  Where is the closest rheumatologist?  How many doctors and nurses are on staff? How big is the campus?  Where are the buildings where my classes would be?  Where would I keep refrigerated meds if I need them?  Where would they be delivered?  Would I need a locking fridge?  Does the campus have a policy on locking syringes?  Does the campus have an office for disabled student services?  What kinds of accommodations can I request?

What strikes me – is that these questions are all intellectual for her – not emotional. In the last four years, she has essentially been off meds.  For a few short months, she was on Humira and MTX…. and I administered the injections.  She is on the edge of seventeen, and she never gave herself her own shot.  Never.  What if she has to for the first time… in a dorm room…freshman year of college??  I don’t know that she really understands what that could mean.  It’s been a long time since she had to understand daily life with flaring JA.  In my heart, I think there are so many things she has forgotten – a blessing and a curse, potentially.

She is on the edge of seventeen.  There is a nice, talented choir boy / computer geek (her words) who would like to take her to junior prom… but he has to come have sloppy joes at our family dinner table before he can ask (our rule).  He will be the first date really – one of so many firsts on the horizon.  She is still a teen – still tempted to roll her eyes at our parental assertions – but now I also hear her voice saying my words to her younger brothers and I have to stifle a laugh.  She is on the edge of adulthood – of planning college, planning adventures, and already feeling some sense of nostalgia over her childhood starting to show in the rearview mirror. Every time we take a family picture, I have to stop myself from getting all blubbery at the notion that soon it will just be me and all boys… because she might not be with us on Easter.  Or Valentine’s Day.  Or some random Sunday morning pancake breakfast.

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She’s a great kid, in my unbiased opinion… and I tell myself all the time that the titanium in her hips is a metaphor for her strength and unbreakable spirit.  That no matter what challenges come, she will be able to persevere and overcome. I tell myself that it was enough test already, enough struggle and being forced to use her very last spoon just to get through the day… there doesn’t have to be more of it.  Right?

The Edge of Seventeen, with the world waiting.  And I am standing behind her…. holding my breathe.  Happy for every great day, every accomplishment. But also Praying and Dreaming.  Still Dreaming of a Cure.

 

 

 

Posted in Awareness / Advocacy, College, Family, Overcoming obstacles, Remission | Tagged , , | 4 Comments

Big Sur, big moments….CCC days 3 and 4

“Courage and perseverance have a magical talisman, before which difficulties disappear and obstacles vanish into thin air.”  John Quincy Adams

So, the riders actually made it to Big Sur on Monday…and soaked their feet in the river, sitting in Adirondack chairs in the water while sipping beer.  But the cell reception is absent, so I couldn’t get the details until our evening phone call last night.

10678544_10203716160357308_6081594654706937337_n10710787_841469609197929_4189949543869280773_nDave and Dan were sporting some jerseys we picked up at a brewery this summer on our vacation in Moab.

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It was a 40 mile ride between Monterey and Big Sur – which offered plenty of time to stop and enjoy the sites.  Despite learning the lesson year one that he was going to be able to complete the ride, and that he should now stop and enjoy the journey – this is still not one of Dave’s strong points.  While other riders like to stop at the local taco spot for lunch, Dave powers through those quaint towns.  Basically he only stops long enough to get some fuel at a rest stop or take photos.  Sitting down for any length of time, he says, causes “Café Legs” – or cramping, stiff legs that are not eager to pedal again.  But the sites on Monday were too great for even Dave to resist.  Along the coast that day, not only were there sea lions and dolphins, but several pods of whales – who were blowing, breaching, spying and generally entertaining the riders who were stopped to enjoy the majesty. So the day, with its beautiful vistas, seems to have had a more relaxed pace and vibe – which translated into more conversations, more people to meet, more connections.

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The stop at Big Sur River Inn also is acceptable – being near the end of the ride day.  (There’s also a shuttle going to and from the campground for convenience.)  It was here that Dave got to talk to Jerry.  I’ve been following Jerry’s story as he trained and fundraised for this ride in support of his 4 year old grandson Carter – who is so dang cute he looks like he popped off a Gymboree ad.  Jerry has a facebook page and has branded his efforts 525_4 Carter.  He’s been telling the story, getting local businesses involved and really going gangbusters.  Without having met him, I get the sense that all of his efforts are to balance the frustration he feels at seeing his precious grandson in pain…. and not being able to do anything about it.  When Dave talked to him, he could see that look… that shell shocked, just- been- through- hell -and- can’t -barely -turn- around- in- case- hell- is -chasing -you look. It’s that look that I remember on my own face for a long time… years probably, after Caitlin’s diagnosis.  That disbelief, that awe… that small flickering flame of hope trying to grow.  It’s the look I see on other parent’s faces when they are new to the family, and they are telling me their story with a sense of desperation – and there is a moment when our eyes meet and I can tell we will both cry.

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I don’t suppose Dave cried – but the moments he had that day brought him to the brink.

It’s always a fine line when we meet people who are newly diagnosed.  We want to share our story – and we don’t want to lie.  But we certainly don’t want every person who is already freaked out by every black box label and crazy statistic they have read on the internet to think that their kid will try and fail so many medications.  Or have their femoral heads sawed off and replaced with titanium.  But we also don’t want them to not “get it”.  They need to know what the monster is and that they will have to fight.  But that there are a lot of happy endings.  And middles.  And everything around in between.

Jerry clearly gets it.10665806_10152554265733673_4064968462862362567_n  And I believe that as he is pedaling this ride, every mile he is thinking of his beautiful grandson Carter…. knowing he would never stop pedaling and telling his story  if it meant the end of arthritis for that little boy.

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(this is Jerry with Amy D and Monica- two of the staff who make this whole ride possible!)

Dave is fond of saying that there is at least one moment at every event we attend or work that just shoots an arrow of this mission directly to your heart.  There is always a story, or a person, or a family… there is something that makes whatever you are doing – whether you are pushing a porta-potty across a hot parking lot, or handing out water, or setting up at 4am, or pedaling up a steep hill at the end of a really long day- there’s is always something that reminds you WHY.  Why you are volunteering.  Why you are spending your time.  Why you want to make a difference.

At the Orange County Arthritis Walk – Dave spent the morning in the CCC booth telling people about the ride.  There were two riders that signed up as a result of that 3 hours.  Two people out of 3000 that were there that day.  But – it was John, a JA dad and veteran. He found Dave at Big Sur and thanked him for motivating him to sign up.  John is active 46417bf3-1f36-467f-b951-f05ef4dbf40dduty military police in the Navy and is riding in honor of his daughter Hayden, who was diagnosed at age two.  Dave then thanked him for his service and I believe there may have been handshakes. (In my mind it was hugs, but I wasn’t really there..)

The honoree for the Big Sur day was Natascha- who is a 28 year-old dynamo who was diagnosed with arthritis at age 12.  It was a very difficult journey getting control and along the way, she was in a wheelchair, on crutches, splints and plenty of pain.  Natascha enjoyed her AF camp experiences so much, that she became a counselor as an adult – and now she is a mentor and trailblazer for kids with arthritis.  One of the best things about her is her perseverance and fortitude.  This chick does not give up.  She sticks to it so much that she is riding the ride this year.  Not part of a day.  Not just one or two days.  The whole ride.  It’s not really possible to spend time with Natascha and miss getting a mission arrow through the heart.

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So, it was one of those days.  Big Sur was beautiful.  The scenery was beautiful.  But the most beautiful thing was the people.

And while I am thinking about all the remarkable people on the ride – I want to extend some thanks to the remarkable people who supported Dave in making this week sojourn possible.  Dave’s parents drove all the way down from Oregon and his sister drove in with my nephew to cheer the riders on the start line- I know it meant a lot to him. Dan’s family was there too – both in SF and in Santa Cruz.  My family has been doing some serious overtime, with babysitting and pick-ups and drop-offs (not because I am at the wine bar!  It’s just too many things happening at the same time:) – I swear I gave them a two-page schedule with attached maps for everything I asked them to help me with while Dave is gone.  Dave’s work has been fantastic – not only his office mates, but the vendors, the guys all through the field- they have donated and supported him black eyes and all.  And naturally – all of the people who donated to Dave and Dan made this possible.

Thank you – and my most heartfelt gratitude to you.  May blessings rain down upon you all!

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Road warriors….

Just taking a slight detour from the success and great moments happening on the CCC – to spend a moment recognizing what it took for the riders to get there…. and the dangers they face on the road.

I have great mind redirection muscles when it comes to negative thoughts and fear fantasies. It comes from years of practice not going down the “what-if” road when it comes to JA issues. So, I try to give my brain a little slap if I start to dwell too long on the thought of what could happen to my husband, or my very good friend – or any of the other riders as they pedal down the coast mere inches away from speeding traffic on windy roads.  I mean, people ride all the time, right?  We live in a cycling state!  There are tons of shops dedicated to the sport, and pods of lycra-clad road warriors can be found at every beach coffee-house on weekend mornings (or even weekdays for that matter.)  So, it’s OK, right?

But this year – there was a training incident.  On the bike.

Dave came home from a 50 mile ride about two months ago – on a Saturday morning.  When he walked in and I asked him how the ride was – he just shook his head.  As he got closer, I saw the blood.  And realized he was cradling his hand.  He had gotten separated from Dan and had backtracked to find him.  He climbed a hill to get a better view, and not seeing Dan, headed back down the hill at high-speed – directly into a pole.  He wasn’t dodging a car, or puppies running in the road – he just for some reason rode directly into the pole. No explanation.

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The result was that we spent the day in urgent care and then the emergency room, where it was determined that Dave did not have a concussion (Yay!) but did need 5 stitches on his brow and had a probable fracture somewhere in his wrist.  It turned out to be a scaphoid fracture and he was issued a splint.  In terms of bike injuries – this was nothing.  BUT – it was the first one and it sort of opened up the fear fantasy factory for me.  About a week later, Dan sort of did a slip and slide on the pavement and left most of the skin from one arm behind…. and I started thinking maybe we should rethink this thing!

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Ultimately, it just meant a splint for Dave for several weeks (and visits to ortho for follow-up) – and lingering pain.  It put a big crimp in the training schedule for sure.  I was grateful it wasn’t worse.

All of the riders are facing some of my greatest fears when they do this tour.  I don’t believe I’ve ever come close to claiming I would do the ride as a rider someday- because I’m not sure I could overcome those fears.  The fear of riding near cars.  The fear of riding near other bicycles! The fear of riding uphill and actually travelling backwards because my legs are not strong enough to overcome gravity. The fear of being the cause of some accident, be it cycle of car because I’ve let my fears turn me into an uncontrolled lunatic on wheels.

I’m just saying – these riders are warriors. And even though I believe that many people could do this – you could do this if you wanted to – they ARE doing it right now. So, my utmost respect to them.  Eyebrow scars and all.

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Back in the Saddle, CCC 2014

I was going to start with an apology intended for those that have no interest in reading about this particular event – but I changed my mind.  Because, frankly, I’m too dang proud of my husband and the other 190 riders joining him in the 2014 California Coast Classic – biking 520 miles down the coast and raising $1 million along the way.  Also – I’m too moved and inspired by the stories I hear and the people I meet not to share with you.

So, the ride started Saturday in San Francisco.  It’s Dave’s 4th year riding as Team Princess Parade – and our great friend Dan’s second year riding.  Dan’s wife Michelle, their two kids, and my two sons and I drove up on Friday (after school) so we could be there Saturday morning to see them off.  It was a beautiful morning – just a slight chill in the air as the morning fog burned off, as the riders gathered at Fisherman’s Wharf for breakfast and a kick-off ceremony.  2014-09-13_08-22-50_172 2014-09-13_08-15-25_875

The ceremony was dedicated to Christiana Powery, who passed away in 2005 from Juvenile Dermatomyositis.  Her parents, Dwight and Maria,  ride every year, and they have a large team called Also Touch.  This is actually their 8th year, and their team raised over $30K this year.  Over all of their efforts, they have raised more than $275K.  In remembrance of Christiana, all of the riders have a SpongeBob sticker on their name tags and bike tags- because that was her favorite character.  In my mind, it feels like just yesterday that I learned about Christiana’s passing.  For reasons I don’t need to explain to you (because you understand), it was particularly devastating.  She was only 10 years old- Caitlin was 7 at the time – and the thought that such a young life could be taken so quickly, so dramatically, due to a disease similar to what my daughter had…. well. Can’t really spend too much time there, can we?

When I saw a sign later that day with the years of her life written on it – I was stopped with such a mix of gratitude and disbelief.  So thankful for my own daughter – (who was not even with us because she was enjoying 2 nights of One Direction concerts!) and so filled with wondering about what Christiana would be like this year – as a 19-year-old young woman- had she lived.  I don’t suppose there could be a better mission moment for why this ride is so very important.  I didn’t seek out Dwight and Maria that morning.  But to be quite honest – I sometimes have a hard time talking to them.  Not for the reasons you would imagine.  It’s not because I pity them, or even out of empathy – or because there are no words, even after 9 years, to say to parents who have been what they have been through.  Really, I am sort of in awe of them for their strength, resiliency, tenacity and GRACE.  They have so much grace that sometimes, I feel like I can’t be too close to it- because it’s like it shines so very bright you can’t get too close.  Sorry if that seems really weird – but it’s true.  So, I will just finish by telling you that they are extraordinary – and that if you can do it, you should visit their website to learn about Christiana and their story.

After the riders took off, and we had checked out of our hotel,  our motley crew headed to rest stop #2 to ring cowbells and thank riders as they stopped for rehydration and snacks.

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Then we moved on to stop number 3. There we met up with the honoree of the day, Mia.  Mia’s folks are repeat riders in her honor, with their Team Sluggy. It’s always a treat to see kids that you know from previous events – because of how much they have grown!  Mia is 11, diagnosed with pauci (Oligoarthritis) at age 6.  But it is a small part of who she is – an active runner and gymnast and Taylor Swift fan, who will accomplish whatever she dreams.

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Along the way, we rang bells as we passed riders on the road.  I worried that having a loud bell suddenly in your ear as you pedaled on a 6″ shoulder of a very busy highway might be dangerous,  but we started ringing well behind the riders and they smiled and gave us a thumbs up.

The 87 mile day ended in Santa Cruz, where the riders set up their tents on the football field.  My husband loves this part of the trip – the camping every night. Even though hotels are an option, and several riders do that – Dave loves the whole tent condo experience.  I have to say, I was tired at the end of that day – and I traveled the course in my minivan – so I can only imagine what kind of reserve it would take to finish that ride – and THEN set up a tent and all your gear.  Just another reason these riders are magnificent:)

Dave and Dan wisely chose spots on the edge of the field, near the track – just in case there was a repeat of the previous year when the sprinklers went off.  Turns out it was for very good reason – as Dave found himself stomping his size 12’s on the sprinkle head to hold the water at bay while he yelled at Dan to drag the tents to the track – at 12:30am!  There is a rumor that perhaps the high school football team played a part in this, because I know very well that the staff did everything they could to prevent this…. but the riders were quick to react and fortunately, most escaped without a solid drenching.

Day 2 was a much shorter day that brought the riders to Monterey.  Most riders were in by lunchtime, which afforded the opportunity to go into town to catch some football and some fried artichokes.  Yes… a local specialty!

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It was also team jersey day – so the guys were sporting their great Princess Parade jerseys.  Mark J is also on the team this year – and not pictured is Laura – riding this year as a princess:)

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Today, the riders are headed to Big Sur – which is one of the favorite stops on this tour.  Dave says the coast has been a bit foggy – so he didn’t get great photos.  However, they did see a pod of dolphins and a bunch of sea otters – so it has been a great day for coastal sites.

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There – they will soak in the river and enjoy some local food and drink before heading to camp.

I always ask Dave if he has ever met any new and interesting riders.  He texted me about Glenn from New Jersey.  Glenn has serious osteoarthritis and has already undergone knee and hip replacement.  He was looking online for a new riding jacket online and stumbled upon a CCC jacket.  Intrigued, he investigated further – and in a spontaneous bucket list cross-off, he signed up for the ride.  Dave says Glenn has been a tinkerer with bikes, but upgraded this year – and has been a tremendously strong rider every day.  Kudos to Glenn and to all those like him who take a leap of faith on an adventure like this!

Every year, I am struck by what an incomparable event this is.  And even though the kids and I follow along where we can, and ring cowbells and give high-fives – there clearly is a special bond that exists only among the riders, staff and volunteers that spend this week and this journey together. Someday, I hope that I can follow the whole week – and meet every rider.  I can make a mean peanut-butter and jelly sandwich too!  Alas – with three kids in school and activities, it will need to wait.  Hopefully, Dave will still be riding in 2027 when our youngest graduates!!!

If you are a bike rider (notice I purposely did not say cyclist?) – and you have spirit – I hope you will consider this event for 2015.  I promise I will be there, somewhere, and some day, to cheer you on!

Until then – please send up your prayers, positive thoughts and good vibes- that these riders will be safe in their travels and their efforts to get us closer to a cure.

Ride on!!

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Musings on the ice bucket….

Ice-Bucket-Challenge

I don’t suppose there is any way you could have missed this, because it has been EVERYWHERE. And every day, I think “Surely it is waning… I am seeing the last of it…”, but for weeks, I am consistently proven wrong.  It’s in the paper.  On the radio.  On TV news and talk shows. All over my facebook feed, my Instagram.  On the way home on Sunday night – I saw two different groups outside on their lawns doing it.  It’s somewhat of a recent obsession and I can’t stop thinking about it.

I can’t stop thinking about the Ice Bucket Challenge.

Had I written about this back when it first started crossing my consciousness – I suppose I could have culled a list of people I knew who had participated – and even thrown in a couple of – *gasp* – celebrities!  But now – it’s too massive and the impressive list of people who have joined this miraculous movement is far too ginormous to capture.  It’s so many well-known people now, that somebody has taken the time to make a list for Wikipedia. Some of my favorites have been Weird Al, Jack Black, and the Foo Fighters, who did sort of spoof on Carrie – and then challenged Stephen King to do the challenge (and he has also done his own video in response).  I could go on and on and on.

When I first started seeing these videos about a month ago – it was a general charity challenge not connected to a specific cause (and it also included the consumption of two beers along with the dousing of the ice bucket). I’m not sure where those came from – or if they were connected at all – or just a coincidental anomaly.

When I started really seeing these show up en -masse – I wanted to know how it originated.  What is the story behind the movement? Well, it is the story of Pete Frates – who is battling ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease.  He is newly married – expecting a child soon – and is not expected to live because the disease he has is a deadly one.  He is only 29 years old, and he is determined to make a BIG difference.  This movement began in support of him – by people who know him, love him and respect him – in response to his request that there be some urgency and action around making ALS a thing of the past.

As of this very moment (because it’s sure to change by the time it I hit the post button) – the ALS Association has raised $41.8 million dollars through existing donors and 739,275  new donors.  This is compared to $2.1 million during the same time last year.  Just writing that makes me want to cry for Pete Frates – for his family – for the people who know and love him,  for every person who loves somebody suffering from the disease or who has ever lost somebody to ALS. It makes me want to cry in solidarity for the gratitude they must feel to have not just the money – but the VOICE – of so many people saying it.  ALS. I am so happy to see all the people I know who have participated – Cheers to you all!!

Because I know how hard it is to watch somebody you love suffer from a disease that nobody seems to know about or pay attention to.  And I AM NOT comparing these two diseases – but people’s response is all about where they are coming from – and that is my origination.  No secret.  And I’m not the only JA Parent watching in wonder, and feeling the pangs of longing just a bit – eager to catch that viral trade wind to sail our little JA cause right into the mainstream.  Certainly, there are people passionate about other rare disease and lesser known causes doing the same thing.

So – I can’t stop thinking about it.  Examining it.  What was it about this donor centered campaign that resonated so well – that all of this could have happened?  It goes without saying that the cause it worthy… but given that so many people never even mentioned the disease in the early day videos – perhaps it wasn’t the biggest hook into this thing. There is some speculation that the timing was impeccable. It is summertime, after all – and what better time of year to engage in a little fun water play! And it is totally accessible – who doesn’t have some type of bucket or bowl and access to some ice?  It also plays on that quest we have to force other people to meet the challenge – to “call them out” publicly.  Naturally, I think it plays into something I believe in my heart and that is the fact that people, for the most part, are generous. They want to help when asked.  But there was something perfect about this time, this cause, this bucket bonanza – some magic – because otherwise, it certainly would have been done before.

There has been some pushback, naturally.  I know that my son is filming his challenge today with some friends – and here in California, you’d best be altering your challenge to capture the water for repurposing, or get lashed for contributing to our very serious drought.  And I have read that some people think that one social media campaign is really not good enough, given the seriousness of the disease – and have even pointed out that the challenge – in its common form – calls for the participant to do the bucket challenge or donate as a punishment for not completing the challenge – which isn’t the best message of philanthropy.  I think though, that even the people who were skeptical at first, have no interest in arguing against the potential benefit of $41.8 million dollars. It’s a success and I am just  happy for how much this has done.  I think people should watch this guy lead with a funny challenge intro and then talk about his ALS and how it devastates his family – if they have any doubt about why all of this was so important.

I do hope for the sake of every ALS warrior – that the movement continues.  I know it will be hard to ever live up to what this summer has meant for their cause… but if even a fraction of the 739 thousand new donors give again next year, or later….and if even one or two of those celebrities keeps talking about ALS, they will stay so much farther ahead of where they were in June.  What a beautiful, ongoing tribute to the passion of Pete Frates and his circle of influence.  Wouldn’t it be wonderful if this turned into a “ribbon season” for ALS… just like you can’t escape the pink ribbon in October – maybe summer will return again next year with ice buckets galore.  Maybe magic can stay.  Because what those warriors need is not just a summer of commitment from fickle hearts who will move along the trend highway – but season after season of people talking and giving and remembering them – until the disease is cured. Don’t get me wrong!  I would absolutely take one magical summer over a decade of shadowy struggle to get to the same place- but I hope this has some staying power.  Because the fight goes on.

And I have to admit – Personally, I have totally stopped trying to come up with whatever the next viral-social-media driven-philanthropic miracle of awareness and funding will be.  Honestly – I think given the total saturation, pun intended, of the public with this campaign – anything following too closely on the heels, or in format too similar,  will be met with bandwagon skepticism and snarky derision.

That’s not to say that I will stop thinking about it.  Or examining it.  Or trying to catch this summer lightning bug in a bottle so I can get a close look.  I think there will be another time when the stars align and magic is ready to commence again.  Because the take away for me is this – I guess it goes back to the famous Maraget Mead quote…

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”

This was grass-roots.  This started as  a bunch of people who did this for somebody they love – out of passion for him and for making a difference in the lives of others with the same disease. This wasn’t calculated, manipulated or engineered by peer-marketing reviews and test groups.  This was organic and it appealed and it just went. It was explosive – like a massive charge of dynamite. They did something silly, easy and fun to spread the word and raise some money for something serious, horrible, and barely spoken about.

I know a lot of people just like the people who love Pete Frates.  A lot of people with the same passion and drive to bring attention, bring funding, find the cause and find the cure for a disease that affects somebody they love. I see it every day – parents chipping away at this obstacle of juvenile arthritis – with lemonade stands, and speeches at the Rotary Club, and making videos to share their story – wearing T-shirts and wrist bands, beating the drum to bring the ears our way.  We may not have managed to get Oprah to respond, or have initiated a viral campaign that captured the news feed for week on end…. yet.  But there is every reason to keep going, with spoons or with dynamite – we will get through eventually.

I think Pete Frates just proved that we live in a world where that is possible.

 

 

 

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