Fear Fantasies

This time last year, we had a cancer scare in our family.  My mom had some routine testing, which revealed some unusual cells.  Further testing revealed that she had uterine cancer.

I can remember the day I went to her house after work, to pick up my toddler – and she did the whole “Do you have a minute to talk?… Now, don’t get upset, But….” intro.  That’s always a great lead-in for bad news.  By that point, she had already scheduled a complete hysterectomy and seen the surgeon.  She just hadn’t wanted to tell me because she didn’t want me to worry.  I found this INCREDIBLY ironic coming from my mom, who has mastered the fine art of worrying.  Her worry could turn coal into diamonds!  But since she lost her own mom to cancer when she was only 23, I can imagine what painful memories and wistful worries this diagnosis stirred up. And being that she is the best mom in the whole entire universe, of course she didn’t want ME to worry.

Later that day, I was telling a close friend about the diagnosis and the plan.  There would be surgery the following week - with complete removal of uterus and ovaries.  There was cause for great hope, the diagnosis being so early, that surgery would eradicate the cancer.  “But what if it doesn’t?” he asked.  “What is the next step?”

“I haven’t thought that far ahead.. I’m just focusing on the surgery”, I replied.  “That’s right.  With Caitlin’s disease, you’ve probably become used to not pondering the deeper implications…”. What’s that? He went on to explain that I hadn’t started thinking about potential chemo and radiation for my mom yet, because I’ve become so accustomed to dealing with one day at a time.  It’s a survival mechanism – an adaptation that has evolved over 11 years of having a child with a chronic illness.  So true.

I used to call these the “What ifs”, but my friend Laura, another JA mom, more appropriately labeled them Fear Fantasies.  You know what these are.  You’re laying in bed, trying to sleep… and the bear starts to wake from his hibernation. Fear.  And you wave big chunks of dinner under his nose, until he’s awake, and eating, and getting stronger… and you can almost never get him back to sleep.  You start thinking…

What if my child never gets better?  What if this medicine really does cause lymphoma?  What if that red patch of skin on her arms is the start of melanoma… because TNF blockers can increase the chances of skin cancers?  Why can’t I get her to gain weight?  Will she ever be back on the normal growth chart again?  Will she ever be able to play a sport or cheer or (insert desire here) ?  What if the insurance doesn’t approve that new medication?  What if my other children get JA?  What if her eyes become involved?  What if I have to home school her because she can’t make it to school anymore? How can I help her deal with anxiety… what if she becomes suicidal? What if something happens to me… who will take care of them?  What if she needs hip replacement?  What if the hip replacement fails? What if she has problems getting a job because of JA?  Will she be able to have kids of her own, or is this medicine hurting her fertility?  Will her future spouse be loving and supportive… what if he’s not?  Will her own kids have an auto-immune disease?

What if she never gets better? What if, what if, what if?

You could pretty much spend all night planning out the future in negative potential scenarios.  It’s endless. And not productive.  It only serves to rob you of your peace of mind, your sleep, and your rational ability to make educated, difficult decisions – which you are required to do all of the time, especially if your child is chronically ill.

Fear.  I’ve become very adept at putting that bear right back to sleep when he starts to stir.

That’s not to say that I don’t spend time becoming educated about possibilities. Before we start a new medication – I spend a great deal of time researching potential side effects. I’m very familiar with what the long-term implications of this disease are. Every decision gets appropriate, lengthy consideration. And I certainly am one for preparing for a worst case scenario… And of course, naturally, I have done my share of worrying.  But it never made a medication work.  It never made the test results better.  And it didn’t stop her from needing surgery.

It’s hard to describe the redirection that takes place in my head when I start to feed the Fear.  It’s like I just slap my brain from one side to the other, give myself a little “not gonna go there” and move on in another direction. Just keep focusing on the goal and moving towards it. I can’t feed the Fear.  I can’t spend a lot of time second guessing and playing the What If game.  If I did, I would either be paralyzed in place, or moving backwards. If the worrying could prevent the bad things from happening… then we’d all be golden!  But it can’t.  I love this quote from Michael J Fox on the topic..

“Don’t spend a lot of time imagining worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.”

As it turns out, last year, it was OK that I had not pondered the deeper implications.  After the surgery, the doctor came out and showed up pictures of my mom’s uterus and ovaries on his I-phone.  (I’m not kidding.) And there were no visible signs of tumors or cancerous growth.  The pathology results would later confirm what he told us that day… he got all of the cancer out.  There was no need for additional treatment.  My mom was OK.  She left the hospital that night (again… not kidding) and she was back on her feet a couple of days later.  We didn’t even give that stupid bear a single sunflower seed!

How do you avoid feeding the fears?

Et Tu, Lou?

OK – I’ll come right out with the admission first. I watch too much bad reality TV.  I admit it. Please don’t judge, lest I skim your dvr memory and find those recorded episodes of Big Brother or Storage Wars.

So – to the topic at hand. Celebrity Apprentice.

In this week’s episode, Lou Ferrigno served as project manager for the men’s team.  After several weeks of mentioning that he was being under-utilized, he finally stepped up and offered to do something more than flex his muscles. Well, OK… he did that too.  The challenge involved making a hip new video, intended for a viral future ( because planning a viral video always works so well..) about a….are you ready?   About a…mop. Lou really took the bull by the horns (or grabbed the mop by the handle, if you prefer) and led his team to victory.

On Celebrity Apprentice, the winning team’s project manager gets money, sometimes a whole lot of money, to give to their designated charity.  This has not only the tremendous benefit of financial gain through one check for the chosen cause, but a HUGE ripple effect of awareness and increased donations.  Because despite the fact that many people won’t fess up to watching, Celebrity Apprentice generally has between 6 and 7 million viewers each week.  For some lesser known charities, being the chosen cause of one of these celebrities takes them to a whole new level.  Trace Adkins chose FAAN (Food Allergy and Anaphylaxis Network) because his young daughter suffers from food allergies.  Gotta admit – I had never heard of it before, but I know all about it now.  And I love Trace even more for going to bat for something close to his heart.

So, this week…. just before Donald the Trump announced the winner, he’s chatting up Lou about being such a survivor.  To which Lou replies that Yes! He’s been through so much and he’s already had both of his knees and hips replaced. ”Arthritis” he says.  And then Donald jokes that this is the reason that he never works out – all his super exerciser friends fall apart at 50 so it’s better not to do that. He never works out and he’s still chugging along after all (By the way, Mr. Trump – you’re fired.)

Then the chit-chatting is done and the big winner is announced.  Lou gets the win and $50K!!! For his charity….wait for it…. Muscular Dystrophy Association!  He was so happy to contribute to their research and technology so they can find a cure.  So… obviously I’m going to pause here and say that OF COURSE that is a worthy charity.  Of course it is.

But I’m just wondering if Lou, a man who obviously deals with arthritis, knows that more children in America suffer from juvenile arthritis than muscular dystrophy, cystic fibrosis and cerebral palsy combined. Does Lou know that the MDA telethon last year raised $65 million… in one weekend… when all of the Arthritis Walks in the country in 2011 combined for about $12M?  If Lou knew that, might he have chosen Arthritis research as his cause? Maybe he would see us as the underdog that he’s seen in the mirror.  Or would the producers have told him that it wasn’t sexy enough? No way to tell, really.

But I feel like I should drop Lou a note…. just to give him some of these details. And maybe producer Mark Burnett too… so if a celebrity shows up next season without a great cause, he might throw them our way.  Want to join me?  Any of you good friends with Donald Trump?

The Yin Yang of Arthritis Awareness

You’ve seen this before, right?  Heard the phrase? It’s a common perception that Yin Yang refer to good and evil.  But the dark and the light are necessary opposites – and they work together in balance to create interconnection and harmony in the world.  One would not exist without the other.  Yin is the black portion with the white dot,  and Yang is the white portion with the black dot.

I often hear discussions about the best way to present arthritis to an uneducated world.  This seems to be quite a hot topic lately. It seems that all of us, all of us who suffer in one form or another, whether directly or via somebody we love – we all have a very passionate and vested interest in getting the world’s attention.  There clearly are not enough people standing up for our cause.  Not enough celebrity endorsements.  Not enough news stories.  Not enough corporate donor dollars.  We are seemingly in the shadows despite being the biggest player in number of people affected.  We’re just not sexy enough or understood enough to draw the urgency and attention we need.  So we need to get the word out.  But how best to do it?  On the one hand, arthritis is often misunderstood and mischaracterized as a gnarling “old” disease – which is not something that will really rally people behind the cause.  On the other hand, by putting forward too hopeful and shiny a face, don’t we belie the truth about the ugliness of the disease?  Which is the face of arthritis to show? The Yin or the Yang?

Disease is not pretty no matter what color the ribbon, but there are plenty of diseases that have no problem drawing celebrity support.  And let’s face it, that’s one of the main ways of creating massive awareness.  Where would the cause of Colon Cancer be without Katie Couric?  How much research funding for spinal cord injury was generated by Christopher Reeves?  How much closer are the keys to unlocking Parkinson’s Disease because of Michael J. Fox?  And the number of celebrities who support Cancer Research are far too numerous to mention….

There are celebrities that have come forward to talk about their arthritis.  However, the numbers are pretty slim compared to the numbers of celebrities who must be actually personally dealing with the disease.  There’s something about “arthritis” that keeps them quiet, that prevents them from speaking out or supporting the cause.  Perhaps it’s that arthritis is the leading cause of disability and they don’t want to be labeled as somebody who might not be able to finish a film, or show up regularly on set or for whatever their gig is.  Perhaps it’s that arthritis is mistakenly associated with aging…. Which is not something that any celebrity wants to be associated with.  But, frankly – there’s just something about  the perception of arthritis that is unappealing – enough to cause even celebrities who are affected to shy away from our cause.  A famous 90210 cast member’s daughter was diagnosed with juvenile arthritis (and thankfully, she’s doing well…).  At the time, there were a few news stories about her shock at the diagnosis, the fear she and her husband felt, the many tests etc.  And yet, after that, there was never any other word about it.  I was able to find, however, several stories about how her kids support Cookies For Cancer.  Don’t get me wrong – it’s a great cause…. But really?  Her kid is diagnosed with arthritis and she doesn’t want to get behind the cause?  And yet… I saw her on The Doctors a month or two back… talking about how migraines are misunderstood.  Wow.

In that context – arthritis does need a makeover.  We do need to find a way to highlight the fact that arthritis does not discriminate by age, ethnicity, religion, nationality, gender or socio-economic standing.  But we need to do it in a way that is appealing…. Hmmm….. Hope is appealing.  People preventing arthritis or controlling it with an active lifestyle sounds pretty good.  Somebody who would otherwise have given up a career as an actress, or a tennis player, a golfer or a CEO – but was able to follow their chosen life path because of medication X,Y or Z… well, that’s pretty positive. Maybe appealing.  Faces that people recognize and trust are appealing.  Happy, shiny, smiling faces of people living well with their arthritis – very appealing.

So I guess this would be the Yang.

However. One of the most powerful things I have ever seen personally for arthritis awareness is a video that a father shot of his young daughter trying to walk during a very bad flare.  It was excruciating to watch. She waddled back and forth, her knees and ankles swollen, crying and begging to sit down or be picked up.  I wanted to turn away like I do with the commercials of abandoned puppies and kittens in cages…. But I didn’t.  I watched and cried like just about everybody else in the room.  I cried because I had already lived that truth.  Many people cried because they were learning for the first time.

But the thing is… it’s the truth.  It’s as much the truth as the fact that some people are living well and their disease is controlled.

And having been there… and fearing that I will be back again someday – I can tell you that one of the most frustrating things to watch when you are despairing in the throes of battling arthritis is happy, shiny faces.  Arthritis is not that simple.  Control is not always that easy.  And though the hope can often help you move forward, sometimes  it makes you want to scream the truth from the mountain tops that people are suffering.  It makes you want to force people to watch videos of kids that can’t walk, and moms who can’t pick up their kids, and look at pictures of beautiful, talented, wonderful hands that can’t do what they want to do anymore because of this disease.  It makes you blurt out the names of people who have died because of the disease.  You feel like it’s only if people truly understand the disease, understand the dangers, see the damages,  recognize the toll – then and only then will they throw some energy and attention behind the cause.  This is the dark truth…. So I guess that would be the Yin.

I’m not saying that we should not show the good stories.  We need Hope.  But we need the hope because of the ongoing truth about the dark side of this disease.  That needs to be heard as well.

As far as I am concerned, we need the whole Yin Yang.  And I grateful  to those brave enough to lend their stories on either road.  To me, it’s the end result that matters… and both are ways of leading us closer to a cure.

What do you think?

Virtual Hip Replacement Surgery

 

Caitlin always seems to find new ways of surprising me.

Last week, she mentions sort of casually “Oh yeah, there’s this web site I keep meaning to show you.”

So, one night after dinner she pulls up this web site for her dad and I to see, and walks us through a virtual hip replacement surgery.  It’s a cartoon – so it’s not gory.  But it is very detailed and accurate.. with you at the controls walking step by step through a hip replacement surgery.  Can I just say… bone saw?

We kept pausing it and peppering her with questions.  “Where did you find this?”. Computer class.  The teacher showed us. “When was that?”  In December of 201o,  right after the last surgery. “Did you show your friends?”  Yeah, they thought it was pretty crazy – but I think it made them understand that my surgery was a big deal.  “Did this upset you to see this?”  Not really….

We were so shocked.  Caitlin was only 11 for the first surgery and she did NOT want to know any of the details.  She really didn’t know what they had done – only a vague idea.  When she saw the first post-surgery x-ray I think she taken aback.

But now, she just sort of mentions casually that a year ago she learned about the whole process in very specific detail and didn’t mention it.  Crazy.

Gotta admit – it’s a cool site.  If you ever wanted to find out what the surgery is all about – you should check it out!  If hip replacement is not your cup of tea, you can also design a cell phone or conduct a crash scene investigation.  Lots of fun stuff

Micro-Movement Blues

The pain started again three weeks ago.  It was familair…but not in the oncoming flare familiar sort of way.  No fevers. No hot swollen joints.  Just really bad pain in her left hip.  It reminded me of the days that led us to the surgeon almost five years ago.  Back then, she was experiencing her first dance with remission – and then she started being unable to sleep because of this pain.  It was so exasperating.  I know that sounds terrible and selfish… but it was. The surgeon told us then that her hips were crumbling from the inside – she had avascular necrosis.  It wasn’t a matter of if she would need surgery, but when.  He told us that the longer we could wait, the better…. and that when she was no longer able to walk, we would need to proceed.

Two and a half years ago was the first surgery – replacing the left hip that was completely collapsing.  At the time, I researched the surgery as much as possible… and there were some fairly large outstanding questions.  Primarily…. how long would the implant last in a child that was still growing?  There’s not a lot of data for us to refer to.  Even though Caitlin’s surgeon specializes in pediatric surgery, she was his youngest patient.  I called the Hospital for Special Surgery in New York – as they too specialize in this.  At the time, the doctor told me that he had patients who had undergone replacement at 12, and were still doing fine at 18.  Caitlin was 11.

So, we knew that she would need a revision at some point.  We just didn’t know when.  And after so many years of stunted growth from inflammation and medications, I really did not expect or fear that my daughter was going to sprout up all of a sudden.  She’s 5’2″ now, which is somehwat a miracle after all of the years below zero on the growth chart.  So, pathetically, I sort of imagined that Caitlin would need a revision when she was 18 or 19.  As if, all of a sudden, after high school… a bell would ring signaling that she had reached her maximum growth potential… and then, without necessary endurance of chronic pain – she would just have revision surgery.  And because this is five or six years in the future, of course they will have developed the most AMAZING technology for implants – that will never have a recall…. and will last the rest of her life without complications.  She would recover from the surgery in a matter of weeks, and head to college with the trauma of the arthritis and it’s effects relegated to history.  That seems fair to me.  That didn’t seem too much to hope for, right?  Admittedly, I have chosen not to spend a lot of time playing out the potentially bad scenarios of how this might all go down.  When I hear stories of implants “failing”, my mind sort of shuts like a steel trap and there is forced redirection to the land of happiness and rainbows… denial at its finest.  Or if you prefer this quote from Michael J Fox

“If you fixate on the worst case scenario and it happens, you’ve lived it twice”.  I don’t want to live that kind of pain for my daughter again.

Since Catlin had her first surgery in August of 2009, she has grown eight inches.  When she had that surgery, she weighed 80 lbs.  She’s just shy of 100 now.  She has hips.  She is developing… and when you look at her, you see the young woman more than you see the little girl.

The surgeon took x-rays and compared them to the set from one year ago.  There is a faint white halo around the hip “cup” implant (the acetabulum).  It’s hard to tell he says – but it looks like micro-movement.  He didn’t seem particularly concerned – and asked us to try two weeks of naprosyn to eradicate any other inflammation.  But he mentioned that if things are loosening, she may require “a little surgery”.  Caitlin’s head snapped up at hearing this news – and her face was white. “But let’s not get ahead of ourselves”, he cautioned, “one step at a time.”

Two weeks later – everything is still the same.  The pain was bad enough to keep her up several nights and home from school twice.  She started taking tramadol at night for the pain. We saw the rheumy and he reported that her arthritis is still quiet, in remission.

So, the surgeon sent us to rule out infection – which required a long syringe into her hip joint under local anesthetic to draw out fluid.  A week later the results are in – and they are clean.  There is no infection.  The surgeon tells me that this is good news – but I wonder if infection is something we can get our hands around without surgery.  “No, infection is bad news…. we’re glad it’s not that.”  Well…. then what are we talking about?

Still not sure…. but it would seem that we are indeed back on that same stupid road from five years ago.  And when I did research to find out more about “revision” in hip replacements in adolescents, what I found was pretty much zip.  Because the original surgery is hardly ever done in kids.  This is such a reminder for me, as if I needed one, that this is an ongoing struggle, with continuing battles…. and no cure. It’s lonely.  And scary.  And completely unacceptable.

But one day at a time, right?  Just get the gloves on and take it one day at a time.

Antibiotics Before the Dentist?

You may remember that my daughter’s dentist and I had a pretty rocky road to travel on the way to our current state of mutual respect.  Now, we routinely exchange information and I honestly feel as if he has come to learn about Caitlin’s condition so that he is treating her with the big picture in mind. (As an example, The Good Doc has curtailed mention of braces over the last three years – after I told him it would have to take a lower priority than getting two titanium hips.)

Three weeks ago, we were heading in for our routine six month check up. The office called me a few days ahead of time to remind us that Caitlin would need to take her prophylactic antibiotic about an hour before we arrived, as she was due for a cleaning.  I knew that there were recommendations, based on the potential for bacteremia  - the possibility that bacteria from the mouth can enter the blood through broken gums.  But this caught me by surprise – because I thought that recommendation was only for one year after an implant surgery, and we were past that.  So, I did a little reasearch…. and it looks like I was doubly wrong.

First of all, the recommendation was actually for two years.  That was the recommendation of the American Academy of Orthpoedic Surgeons (AAOS) in 2003.  That is what the American Academy of Pediatric Dentistry (AAPD) chooses to follow. Apparently, all these Academies don’t exactly agree.  In the Guideline on this issue, the AAPD recognizes that there are “varying recommendations” between the AAOS and the American Dental Association (ADA) with regard to this issue and that they are “collaborating…to develop evidence-based recommendations.”  Ok.  So… this is confusing when there are varying suggestions from all of the experts.  But based on this, it looks like Caitlin is supposed to take antibiotics before a dental cleaning for two years after her last surgery.  This is the recommendation of the AAPD, and therefore the recommendation of my dentist, along with the obvious suggestion that I call Caitlin’s doctors for consultation.

So… phone call to the surgeon, where I obviously get voicemail and leave a message.  Phone call next to our Rheumatology Nurse, who is an absolute goddess, so of course she picks up the phone right away.  She checks the records, offers to call the doc but says that generally they only do the antibiotics for a year post-op.  She offers to call in something if I want it… and frankly, what I wanted was to be able to get the dentist appointment out of the way on it’s scheduled day (which happened to be a school holiday – no missed classes!).  We discussed it and opted for a repeat of her last dose of prophylactic amoxicillin.

The decision was made and then the surgeon’s assistant called me back.  Actually, she said, they recommended prophylactic antibiotics before any”invasive” dental work for life.  Yes… For. Life.  Uhhhh… OK.  So, a little look-see into that with the American Academy of Orthopedic Surgeons confirmed:

Given the potential adverse outcomes and cost of treating an infected joint replacement, the AAOS recommends that clinicians consider antibiotic prophylaxis for joint replacement patients with one or more of the following risk factors prior to any invasive procedure that may cause bacteremia:  and then the top four in the list:

1. All patients with prosthetic joint replacement
2. Immunocompromised/immunosuppressed patients
3. Inflammatory arthropathies (e.g.: rheumatoid arthritis, systemic lupus erythematosus)
4. Drug-induced immunosuppression

So…. yeah.  That pretty much includes her.

Believe me – I’m not a fan of frequent antibiotics.  I fall more in the camp of people who fear that frequent prescribing of antibiotics is not only destroying our body’s potential ability to fight things off unaided… but that we also may be creating some serious drug-resistant superbugs. And for the generally healthy population, I personally believe we should be careful with the thinking that we need an antibiotic to get over every little bug.

However. People who have had a joint replacement do not fall into the above category.  Most of the people dealing with an auto-immune disease also do not fall into that category.  An infection, even one stemming from a nick in the gums during a cleaning, can be devastating.  So, in the never-ending balancing of risks that this disease seems to offer, looks like we’ll be risking tolerance to antibiotics for the sake of protecting against “adverse outcomes” from potential infection stemming from a dental cleaning.

By the way, in all of these recommendations, there was mention of prophylactic antibiotics for people with auto-immune disease, including rheumatoid arthritis and juvenile arthritis, especially if they are on immuno-suppressing medications.  I must admit – in all the years that Caitlin has been going to the dentist while taking prednisone, methotrexate, cytoxan, cyclosproine and a host of other immune-modifying medications – I never knew this.  I never asked.  I trust our rheumatologist and he says that he did not consider her to be a high risk for infection before. Even if I had known it, I’m not sure how the risk-weighing debate would have ended…. maybe we would not have done anything differently.  But even without a joint replacement, it might be worth discussing with your doctor/dentist if you have ra/ja or are on immuno-suupressive medications.

P.S.  The dentist trip went off with out a hitch.  No cavities… no signs of mouth/gum disease.  Took the prophylactic antiobiotics – no side effects.  And the dentist felt Caitlin was now stable enough to suggest a trip to the Orthodontist to discuss braces.  I hope he knows what’s coming his way!

Gleefully Granted Wishes

“I’ve put plastic on your chair…. so feel free to wet yourself with excitement.” - Sue Sylvester

Blow out birthday candles, see a shooting star, throw a penny into a fountain, send a dandelion away with your breath…. And what would your wish be?   I always wish for a cure for arthritis – but let’s assume you have to come up with a more practical wish that somebody could actually grant.  What would it be?

For my daughter, for the last two years, the wish would have involved the cast of her favorite TV show Glee.  It’s been a Tuesday evening ritual of ours to watch the show together.  Some of the subject matter is a little mature, so I welcome the opportunity to watch and discuss with her… sometimes “those” conversations are easier to have when they are about characters on a TV show.  But I also enjoyed rediscovering so much great music with her.  The Choral peeps from my own middle school and high school days were always my safe haven. As a former gleek, there was a part of me that hoped the show would light a fire in Caitlin to pursue some glee of her own.  Mostly though, we just enjoyed it together – a comforting ritual we share after all the guys in our house are asleep.

As a matter of fact, when Caitlin had her right hip replaced in November of 2010, it was a Tuesday. The day had started before dawn, with pre-operative tasks.  It had been emotionally and physically draining.  That evening, she was starting to get a sense of her pain as the strongest of the pain meds were wearing off.   By 8pm, the family guests had gone home, we had been introduced to our night nurse and I was trying to set up my cot.  We had almost forgotten what day it was when we found Glee.  It was the first episode that guest starred Gwyneth Paltrow as Holly Holliday – and for one hour, the IV, the pulsing leg cuffs, the oxygen monitors, all the noise of the hospital just disappeared.   It was just a comfortable, normal moment that rooted us back in our lives.

This past November, I was telling this story at the Commitment to A Cure Gala in Beverly Hills.  Caitlin, Dave and I were up on stage to introduce the new kids camp video, which was followed by a paddle raise auction to support camp. I shared the story as I was talking about some of the best gifts that camp offers kids with arthritis, particularly, the ability to feel completely normal. In their element, with the safety of understanding friends and no need to make excuses for a limp, or difficulty moving or whatever.   It reminded me of Glee, that evening after the surgery – and how wonderful it was to just have that “normal” moment.   After the camp video, Caitlin and her friend Alexa talked about camp and got the auction rolling.  (The third Musketeer Mikayla unfortunately was feeling really ill from new JA meds and had to leave before the auction…)

What I didn’t know was that in the audience that evening was a Fairy Godmother.  She heard my story, and she heard my daughter’s unspoken wish.  At the end of the auction, she snuck up to the stage and whispered to the auctioneer that Caitlin, and her two best JA girlfriends, would get to visit the set of Glee.  Alexa jumped up and down, and to my absolute delight – Caitlin started crying tears of joy.  After so many events where Caitlin has muttered under her breath through clenched teeth,  “Stop crying, Mom!”, it frankly made her dad and I giggle to watch her dissolve into a puddle of happy tears!  To say that she was thrilled would be an understatement.

Missy Halperin, AKA Fairy Godmother, is the Senior Vice President of Talent Relations at Fox Broadcasting.  After the Gala, I got the chance to speak with her.  She’s a mom too, and we talked about kids and teens and dealing with peer pressure.  She was at the Gala to support her good friend Teri Hatcher, as she was being honored for her work advocating for kids with arthritis.  I mentioned that I had never applied for a Wish for Caitlin, but if I had, this would have been the Wish.  Missy told me that if I had, she would have been the one the request went to!  Weren’t we lucky that our Fairy Godmother was there that evening?

So that’s how it came to be that three thirteen year girls got to visit the set of Glee last Friday.  They got to sit in the history classroom and watch filming take place on the monitors.  They got to meet Finn, Kurt, Mercedes, Quinn, Santana, Sam, Sugar and the new Irish Guy.  They posed on the Glee “stage”, the locker room, the teacher’s lounge and even at Sue Sylvester’s desk!  They gushed and giggled and asked the actors what had been their favorite song to sing. The actors were genuinely kind and generous with their time.  The girls passed out KGAT bracelets and they took photos… and they felt a little like stars themselves!

 

For them, it was thrilling to meet these talented actors, some of them severely crushed over.  They were star-struck and just overcome with being on set.  Who wouldn’t want to see all the Cheerios trophies?  But it was also more……For just a few minutes – those actors that are adored on one of the top network shows each week, were listening to the fact that Kids Get Arthritis Too!  They were donning a blue foam hand and smiling in pics with these girls.  It wasn’t an ad campaign, or some big national recognition – but for these girls that spend so much time fighting the notion that arthritis only affects old people and is no big deal – this was HUGE.  This was a really lovely, validating moment….and you can’t help feeling that seeds were planted.  Seeds that will possibly result in one of these girls pursuing entertainment.  Or just seeds that help them believe that they can accomplish their dreams, like some of these actors have.  And maybe, one of those actors or crew members will remember the 300,000 kids with arthritis…and it will lead to more seeds, more awareness… more wishes coming true.

So Thank you Fairy Godmother, for making these dreams come true!  And Thanks to you Gleeks for being so great to my girls!  This one will be cemented in memory….

This is Missy…. AKA the Fairy Godmother – who made it happen.