Wednesday, July 1, 2015

I got kicked off my hospitals Patient Advisory Council... for being a patient advocate

Picture taken from Twitter at @FlipTheClinic.

Almost as quickly as I answered the phone, I heard the words:

"We are going to have to remove you as Co-Chair of the Patient Advisory Council."

I had a feeling those words were coming.  Several days before I had been contacted by my CF Clinic's Hospital Administrator requesting a conference call regarding my recent blog post:, a blog post I had written to remind myself I am not powerless, even if sometimes I feel that way.

I wasn't surprised to hear her words.  But I was disappointed...because it was confirmation of what I had come to learn: my hospital does not yet seem ready to really listen to its patients.

This was the first time ever that my hospital administrator and CF clinicians had initiated a phone call to me to talk about my personal feelings regarding improving our CF Clinic/Hospital.  I had many times solicited their thoughts.  But never had they solicited mine.  Until now.  Until the decision was made to ask me to leave.

I accepted the words, knowing I had no recourse.  So, I asked questions to better understand. 

"Can you tell me what exactly I did wrong?"

The hospital administrator reassured me that nothing I had written was an issue.  Neither had I violated any rules.  I wasn't removed from the Patient Advisory Council (PAC) because I wasn't committed.  Quite the opposite is true.

It was explained to me: I was removed because the legal team and hospital administrative team at Children's Health - Children's Medical Center had decided I was "not accepting of the PAC process."

The hospital administrator read back to me the words in my blog post I had written to describe my feelings, words such as "frustrated", "disappointed", "blamed", "neglected", "powerless", "barrier after barrier."  

I heard her tick each word off as though they were a list of transgressions, something I had done wrong.  What I wanted more than anything in that moment was for her to see behind each of those words my transparency and vulnerability.  What I wanted was for her to reflect on them, recognizing that how many other of our patients might be feeling similarly.  Instead of using those words as reasons to remove me, I wanted her to ask, "how can we work together to address these feelings?"

Instead, she went on to explain
 that the reason I was being removed was because work with the Patient Advisory Council "needs to be on a constructive level, not a frustrated/negative level."  

I listened intently to her words.  Where exactly were we missing each other?  Everything I shared publicly, I had shared privately.  My words should have come as no surprise to anyone involved.  

I began to wonder...

Who exactly determines what is "constructive" work?  The patients or the clinicians?  What if one party disagrees?  Is it, for example, considered working on a "frustrated/negative level" if the patient is the one who feels the work is not "constructive"?  Certainly seems like it in this case.  

In regards to the exact "PAC process" that I was not following, I still don't know.  But I'm left to believe that I basically wouldn't rubber stamp what the hospital wanted to do.  

I am of the opinion that the patient voice and patient experience is much more valuable than to just nod and smile.  Patients want to do more than approve work that has already been done.  We want to partner together to change and improve care.

And, can I just stop for a second and reflect on the hospital administrator's comment that a patient's work cannot be at a "frustrated level"?  How in the world can one ask a caregiver of child with a life-threatening progressive disease chained to a broken health care system to not be frustrated?  It's intensely frustrating.  This disease is frustrating.  What feels negative to me is that my son's health is slowly deteriorating and I am desperate to save him.  I don't have time to wait.  I don't get to quit.  I can't go home at the end of the day and put this all away.  This is our life.

My blog began the moment Bennett was born.  It was supposed to be just a vanilla blog for the grandparents and a few friends to watch our second-born son growing up.  But when Bennett was diagnosed with Cystic Fibrosis, it became a place to share about his condition and our efforts to find a cure for his disease.  As I began to learn things along the way, I began using the blog to share ideas and insights for other CF families.  If I'd found a way to hack the system, I wanted to share it with others, just as I want to learn from others. 

It's interesting that such an innocent blog for such an awful condition would upset a hospital legal team and the hospital administrators prompting them to remove one of their most engaged patients from a committee created to listen to the patient voice.

But what this situation has done only better illustrates my original point: patients must be their own advocates.

The internet has changed everything for patients.  Patients talk to each other - in real life and through social media.  CF patients, more than anyone, depend on the internet.  CF patients cannot be together in the same room so we rely on communication via Facebook.  CF patients are often given tests and must wait for days for results so we rely on Google searches to explain the unknown.  CF patients have a tremendous amount of care they must manage, the internet helps inform decisions and understand diagnoses.

(Listen to Suzannah Fox describe how the internet has changed the world for all patients - my very favorite story begins at 6:30 minutes in:)

I had one goal in mind with regard to our CF Clinic Patient Advisory Council: to help set the stage of clinicians and patients to work in genuine collaboration.  

I want my hospital to be one that doesn't remove a patient when they ask for more but who values their experience and insight.   

Isn't it interesting that I felt so unheard on my Patient Advisory Council until my hospital/clinicians got wind of my blog?  It's ironic that my hospital finds patients where they are but cannot work with them to to be there too.

I'm disappointed not to be able to be a part of the PAC anymore.  But I'm not surprised.  Change is scary - and so are patients empowered so that they don't need permission.  

I don't take my removal from the PAC personally.  I still really like my CF Care team and the hospital administrator who informed me of my removal.  The people in these big systems are individuals just like the patients they care for.  Patients are more than their diagnoses and clinicians/administrators are more than their jobs.

My removal isn't personal and neither are these barriers put before us patients.  But it's sad for patients... because patients/families need more.

These words are how I ended the blog post that originally got me kicked off the PAC in the first place.  But they seem even more relevant now:

"What I've realized is the limitations I put on myself are imaginary.  When I believe that change must begin from the top, I am unknowingly telling myself I can do nothing from the bottom.  And that is absolutely not true.  The truth is: the power is at the bottom. 

I must go forward, whether my CF clinic, my hospital or the CF Foundation chooses to come along or not.  We want them to be a part of what we are doing.  And I believe they will be.  But those who deal with this awful disease day in and day out, with no relief, have no time to wait for others to do it for us.

We are the experts in our own care.  We just need to recognize the resources we have at our fingertips and put them to use.  We need to wholeheartedly embrace the idea that we, as patients, don't need permission to make our lives better.   The permission is already there."

Monday, June 29, 2015

Baby Bow Tie + Kendra Scott Fundraiser in Dallas

Last month, for the second year in a rowBaby Bow Tie's Kat Armstrong (left), a champion for Bennett and all those with CF, organized at Baby Bow Tie + Kendra Scott Gives Back Fundraiser to raise money to help us find a cure for CF.

Additionally, this year,
Michelle Staubach Grimes (right), author of the children's book, "Where Is Pidge?" held a book signing during the fundraiser.   Thanks so Taylor Alexandra (not pictured) who donated her time to capture beautiful photos of the event. 

This photo captures the first moment as we walked in.  Bennett went right to Kat to say hello.  These two have a special connection.  Bennett knows she is someone who wants very much to find him a cure and had thrown this big party just for him!  Kat knows this is a little boy who needs a miracle. (Photo credit:

A Baby Bow Tie headband for little girls.  (Photo credit:

This year's fundraising event was held at the Kendra Scott store in West Village in Dallas, Texas. (Photo credit:

This fundraiser lasted from 5-8pm.  Twenty percent of all store sales during that time went to the CF Foundation(Photo credit:

Although many of the shoppers that night were friends and acquaintances of ours, many others were just random shoppers that had stopped by to pick up a thing or two.  I loved how they were helping us get a cure for Bennett, even if they didn't know it. (Photo credit:

Here are the Kendra Scott girls that helped make this year's fundraiser successful! (Photo credit:

What perfect patriotic pieces - this sweet little bow tie (I love how Baby Bow Ties have magnets so it's easy to put them and keep them on) - and cobalt blue Kendra Scott studs(Photo credit:

I love the simplicity of Kendra Scott jewelry.  It looks great casual or dressy. (Photo credit:

Bennett tells Mrs. Kat about something interesting. I'm not sure what but they both look in to it. :) Kat has an adorable toddler named Caleb so she has a tender heart towards little boys.  Caleb is why Kat created Baby Bow Tie.  (Photo credit:

The event ended up raising more than $1200 for the CF Foundation in honor of Bennett!!

Despite the fundraiser being more than 2.5 hours away from our home, we had quite a few friends who came out to help support Bennett.  One of those was the mama of one of Bennett's best friends, Parker.  We enjoyed getting to see Dana, who recently moved to Dallas, and her friend at the event.

It was a special treat to have a chance to meet Michelle Staubach Grimes, daughter of football legend Roger Staubach and author of the children's book "Where Is Pidge?"  Michelle's best friend passed away from Cystic Fibrosis so she is a big supporter of the Cystic Fibrosis Foundation.

This was the first time Oliver had ever been to a book signing.  So, he really loved getting to have a book signed to him and learning how Michelle wrote the book.

Avonlea, wearing one of Baby Bow Tie's newest girl hair bows, loved sitting down with the "Where is Pidge?" book.  She has always loved reading and looking at books so it's no surprise that when she saw there were books there, she had to immediately sit down and read one. (Photo credit:

This is Meredith, manager of the West Village Kendra Scott store, and someone who I adore.  She was at our fundraiser last year and this year and asked to take this picture with us.  But the truth is the honor is ours.  She has been so helpful for us raising money for the CF Foundation and wants to see our little guy get his cure!

Brian and I really enjoyed getting to see Brian's high school friends from Missouri who now live in Dallas.  Thanks for coming, BJ and Kat!

The Baby Bow Tie + Kendra Scott even was held on Red Nose Day so our dear friend Megan was so thoughtful of the boys to make sure to bring them a surprise treat.  All three of our children have had a "ball" with these big red noses. 

Bennett wanted to give a message to Mrs. Kat: "Thank you for helping me get a cure for my Cystic Fibrosis.  I love you."  Brian and I echo his message and have one of our own to all who came out that night to raise money for the Cystic Fibrosis Foundation: "Your coming out and supporting Bennett's fight against CF made our hearts swell with gratitude.  Thank you!!"  (Photo credit:

Friday, June 26, 2015

Another Surgery Scheduled. This is number 6 for Bennett.

For the last few months, Bennett has been complaining of headaches.

His complaints were never very consistent.  Sometimes it was the left side of his head.  Other times, it was his right side.  Sometimes it hurt when he was running.  Sometimes it hurt when he was sleeping.  I figured it was just 5 year old stuff - making things up when it is convenient.

But, after 2 months straight of complaining every few days, I decided to have him checked out.

The first thing I considered was having him looked at by his ENT.  Sinus issues are frequent among those with CF.  I was delighted when the ENT told me what I had expected.  His nasal cavity looked clear of nasal polyps (a common issue in CF due to inflammation from mucus build-up in the nose).  I was delighted to know we were in the clear.

But then, the ENT suggested that we do a CT scan on him to make sure there was nothing hidden inside causing him issues.

Bennett hasn't been sick for a long time.  He made it through the cold season with almost no issues at all.  He has yet to culture any serious lung infection and has never developed a cough.  So, when our ENT suggested this, I couldn't imagine why a CT scan would really be that necessary.

Nonetheless, we went ahead and had one done.

Turns out: Bennett's sinuses are completely blocked. No wonder our little guy is having headaches. The only way to resolve it is sinus surgery.

Bennett's CT Scan - June 2015
I was shocked when I saw the CT scan.  See those two cavaties under Bennett's eyes?  They are supposed to be black (black indicates air).  Instead, they are almost completely filled.

Image found here:
Bennett's maxillary sinus, sphenoid and ethmoid sinuses are almost completely blocked by mucus. (Thankfully, his frontal sinuses are not blocked because they don't typically develop until the teenage years - one less sinus blockage to worry about).

Unfortunately, sinus surgery is par for the course with Cystic Fibrosis.  We knew it was only a matter of time before Bennett would join his fellow CF patients and need sinus surgery.  But, it's pretty wild to think his sinuses have completely blocked with dry thick mucus, all while he has been otherwise asymptomatic.

These are those moments when I feel shocked that CF is seriously causing havoc inside Bennett's body.  He looks so healthy.  He acts so healthy.  How could he possibly be sick?

Although I have resolve now, I did have a good cry shortly after learning he needed surgery again.  Sometimes it's easy to just see things like this as "just part of our life - another surgery, another day".  But, at other times, I stand back and ask, "what in the world!? are we seriously dealing with a nasty progressive disease we cannot stop?"  It's a crazy feeling to be in this place, putting my fairly healthy child back in to surgery again.

Surgery has been planned for July 9th.  It is planned that Bennett will be admitted for a one night stay at Scott and White in Temple (where he had his last surgery).

We have several weeks to prepare and have begun speaking to Bennett about it.  His last surgery went so well that we are all very confident this one will go off without a hitch.

But it is still disappointing that our little man will have to endure his 6th surgery before his 6th birthday.

...and just to think, the lung issues haven't even begun yet. :::sigh:::

Thursday, June 25, 2015

Bennetts School Raises More than $1000 for a Cure for Cystic Fibrosis

Our family is extremely appreciative to the St. Paul's Episcopal School - Waco community who helped raised $1257.50 for the Cystic Fibrosis Foundation in honor of Bennett.  What an amazing group of generous people we have at the kids' school!
These are just some of the children who went above and beyond to help raise money for a cure for Bennett.  Truly, our hearts are overflowing with gratefulness to these sweet specific kids, as well as all those they represent at St. Paul's (staff, students and parents) who helped them make this happen.

Each year, I'm invited by the St. Paul's administration to come and speak about Bennett's condition.  This is a great way to teach children about helping others.  In addition, it helps children learn about Cystic Fibrosis and how sometimes people are sick, even when they don't look like it.  For the first time, I brought Bennett's percussion vest with me when I came. This picture captures the moment when I turned on the machine and Bennett started singing "Twinkle Twinkle Little Star."  The children, up until that moment had been curious and quite but when they heard Bennett's singing voice vibrating, they erupted in laughter.  Bennett loved getting to share his treatments with his school.  And the children and staff appreciated better understanding what it's like for someone with CF to take care of their lungs.

This sweet picture is of Meg, Eric and their mama Mandy who held a school-wide bakesale to raise money for Cystic Fibrosis.  It was Eric, who several years ago approached his mother to ask how he could help raise money for a cure for Bennett.  He and his sister have lead a bake sale fundraiser ever year ever since.  What a treasure this family is to ours!  

We are also thankful to BJ Restaurant in Waco who donated more than 100 warm cookies to St. Paul's to help the children celebrate all the money that was raised for a cure for Cystic Fibrosis.  The boys were at school when I dropped by the restaurant to pick up the cookies but the assistant manager and I decided to capture this moment next to pictures of other children with Cystic Fibrosis hoping for a cure.  BJ Restaurants' corporate chosen charity is the Cystic Fibrosis Foundation. BJ's donates a portion of profit of every one of their Pizookie desserts to helping find a cure for CF.  We are very appreciative that our local BJ's would want to support helping extend the life of one of their little customers.

Warm cookies from BJ's Restaurant await the children at lunch time - a sweet treat to thank such caring and thoughtful children and staff at a school who wants to see Bennett be able to live long and use his St. Paul's education to make the world a better place.

Thank you St. Paul's, BJ's Restaurants and all those who are helping us put an end to Cystic Fibrosis.

Monday, June 22, 2015

Last Day of School 2015

May is always a whirlwind for our family.  It's "Great Strides for Cystic Fibrosis" month as well as the end of school and beginning of summer.  It's hard to keep up as it is, much less when it comes to blogging about it.  I'm behind on my blogging but in an order to catch up, I thought I'd start with some First/Last Day of School comparison pictures.  It's so crazy to see how much change can happen in 9 months time...
This year Bennett finished Pre-K.  Oliver finished 1st Grade.  
And Avonlea completed the toddler class.

Oliver, 7 years old

Bennett, 5 years old

Avonlea, 1 year old

Oliver lost his baby teeth but he began gaining his adult teeth.

Bennett is noticeably taller these days.

This year, Avonlea's hair has grown, her vocabulary has burgeoned and her newfound independence is evident.

If you like to looking back at pictures of babies growing up, be sure to check out our Last Day of School 2013 and First/Last Day of School 2014.

Sunday, May 31, 2015

Designing a new way of CF Care - an update

Last week I was privileged to attend the second CF Care Model of the Future meeting.  This project brings together 40+ clinicians, researchers, patients, caregivers and Cystic Fibrosis Foundation representatives charged with completely redesigning the way we do CF Care.  I thought I'd share about the work being done and where we are in the process.

Cindy George (RN and CFF representative), myself, Erin (a CF mom) and Emily (adult with CF) capture a picture of a friendship that has been created from hard work, difficult conversations and the sharing of lots of good ideas!

After our first CF Care Model of the Future meeting in January, we all split in to multiple groups to focus on improving different aspects of CF Care (e.g. "Quality Improvement and the Care Center Network", the "CF Registry", "Patient-Generated Health Information", "Community Integration", etc.) For four months, our respective work groups met weekly via phone and video chat to discuss the myriad areas of which CF Care is involved and dreamed up ways they might be improved.

Eight weeks in to our regular meetings, each of the groups submitted their ideas for the larger CF Care Model community to see.  In total, we came up with 77 different ideas for projects, improvements or programs that we believe could benefit the way we do CF Care.  These ideas are not complete but are certainly a good start to improving the system.

This is a list of just some of the 77 ideas presented at the CF Care Model of the Future Design Meeting.
Because this is the part that gets me super excited as a CF mom, here are just a few of the ideas that were dreamt up: a more patient-centered accreditation process for CF Care Centers, an online "exchange" where all CF stakeholders could share their ideas, documents, pictures, etc. as a way to share information and quality improvement projects, a patient and family research advisory committee, personalized CF treatment plans, crowdfunding for CF research, patient access to medical records, home health/mobile monitoring guide, a repository for de-identified N=1 study data that is readily accessible in the CF Registry, real-time search tools in the CF Registry, a virtual playbook that would allow CF patients to share the ways they have "hacked" the system to benefit their care, an online CF Dashboard that could provide all of a CF patient's or CF Clinician's data in one place, use of telemedicine, methodology and engagement standards across the Care Centers, patient and family quality improvement training, a collaborative quality improvement network, a mentoring program, etc.  (I could go on and on...but aren't those awesome!?)

At this in-person meeting, each of the work groups presented their one or two favorite ideas to the entire group.  It was really fun to see how well some of the ideas had been refined.

After presentations of just a few of the good ideas, everyone at the meeting was asked to rate (not rank) the ideas so that we could all get a better idea of what ideas the group believed we could begin to work on further first.

Every idea is a potentially good idea. No ideas have been thrown out or declined.  Some ideas were just moved up in order of easiest to implement and highest impact/potential to help the community the soonest.  Everyone knows time is of the essence.

Michael holds the microphone and shares data from our ideas.  The ideas that were ranked as having the highest impact but were also the easiest to implement now include: pre-visit planning, automated care management tools, a platform for efficient, effective and transparent knowledge, a pediatric to adult transition program co-designed by patients, caregivers, clinicians & coordinators, a collaborative QI network, CF-specific central IRB, transparent Center-level data sharing and a national CF Parent and Family Advisory Council Network.

A word of caution, the list above isn't necessarily what ideas is going to be created first.  But these are the ideas that will likely move towards further development and testing. 

CF patients are an integral part of our work.  Even though most all of them could not be present due to cross-infection issues, they were a very present voice in the room virtually.  I always always love hearing the voice of a CF patient.  Nobody cares more and has more at stake than they do.

One of the ways that we evaluated an idea was through the use of personas. Personas were fictional people who were created from real CF patients/stories.  The goal of the personas were to evaluate how an idea might benefit a CF person and the complications a CF person might have with engaging with that improvement.  Two really smart researchers who did this kind of stuff for a living did this for the CF Care Model project.  Here are just a few examples of the personas they came up with:

Every person has a story and lives within a system.  The use of fictional personas when creating CF Care helps everyone think through an idea from the perspective of someone battling the disease.

Throughout the presentation and ideation of new ideas, we were asked to consider which personas might benefit and mark this on our sheet.

Our tables were filled with all the essentials to a creative ideation session: candy, markers, post-its, and toys.  The bottle of hand sanitizer is pretty standard at CF functions (all those in the world of CF are aware of germs).  Microphones were at every seat so that Virtual participates joining us via webcam could hear the discussions.  The bottle of enzymes were for the CF empathy card:

Several times a day, someone would stand in front of the room and instruct our tables to use our CF Cards FOR Humanity.  These cards had on them small CF-related scenarios (either from the focus of a CF patient or a CF Clinician).  We were instructed to do what the cards suggested on them and answer the corresponding questions.  The goal was to learn to feel what it's like to be a CF patient.  Everyone felt these were very helpful in becoming more empathetic to an experience that is otherwise difficult to understand.

Most of our time was spent discussing where to go from this point in our work.  Usually there was a consensus.  But, at one point, the conversation became very tense as there was discussion and some disagreement on whether or not our measurable goal of the new CF Care Model was high enough and whether or not the system we are creating is revolutionary enough for CF Patients.  It became clear that despite our best efforts, we still have more work to do.  I am SO thankful for the CF patient who lead this discussion by expressing she did not feel this was good enough.  No one is ok with settling with simply "filling in gaps" in the current model.  We all agree that we must change the model completely.  Now that is exciting!

While it's likely that our CF Care Model global aim and goals may be strengthened, I did like the primary drivers that this system is being built under.  These primary drivers describe the kind of system we want.  We want a system that offers reliable, personalized, evidence-based timely care, provides whole health wellness for people & families living with CF, tends towards better value for care, includes a vibrant CF Community and Quality Improvement Network, encourages joyful work conditions for those providing care to people with CF and makes way for better, faster and cheaper research.

A lot of ideas were considered and evaluated.  Some of the ideas were presented in depth.  Some ideas were merely mentioned.  Goals were created for our team to consider.  Some of the goals were not lofty enough - is it adequate to say we are happy with a CF Care Model that increases life expectancy alone - or do we want more?  Is it good enough to set our goal to be a "normal" FEV1 and BMI for all or is that too low of a bar?  This is what we are currently considering.

One really interesting thing of the day was when this robot guy started rolling over to our table at lunch.  Apparently the robot is called a "Nomad" and is basically an iPad on wheels.  Our friend Dan, who is a CF patient who was attending the meeting virtually, was given the controls so that he could control the Nomad and come talk to our group (or any other group in the room he wanted).  The iPad had a microphone and speaker so we could hear him and he could hear us.  It was both very cool and freaky to experience.  I love how the CF Foundation is working hard to make the virtual experience the best it can be for CF patients.  This was the first time this technology has been used at the CF Foundation.  

At one point, Avonlea and Bennett made their debut at the meeting when Erin showed a video of CF children dancing to the song "Happy."  The goal of playing the song was to get everyone up for a physical activity and to remind us all why we are doing the work we are done.

Andreas, a CF dad from Sweden, and Arrica, from the Dartmouth Institute collaborate on CF Care.

Like at our last meeting, posters filled the room, hanging even on the doors, as we had multiple ideation sessions looking at how we can improve CF care.

Dr. Dasenbrook, a CF doc and Chris, a CF Foundation representative talk at their table during a lunch break.  Even during our breaks, we were most always talking about improving CF Care.

These three young women, who work for the C3N Project, are the rockstars of the meeting.  They were constantly behind the scenes taking care of the details and logistics throughout the meeting.  There are quite a few others who are equally amazing, including but not limited to, Sophia, George and Karen (not pictured).

Where do we go with good ideas that are ready to be put in place?  We will begin to prototype some ideas to hopefully begin putting them to the test.  Are they good ideas?  Will they work?  Do they help us do what we want them to do?

Even though some ideas will be better evaluated first, all of the ideas looked at more closely (new ideas will emerge; some ideas may be put on hold).  I love this picture of our design process.  Even though all good ideas will start out along a similar path, testing can cause ideas to take different paths.  It's important for all of us to be patient with the process.  (Doesn't this sound like the clinical trial process?)

Our meeting came to a close after 1.5 days of work together.  Even though the meeting is over, we will continue to work in our teams on moving the ideas from design to prototype to pilot to implementation. We have to remember we are not building a machine. We are creating a system.  Components will be individual and personalized, not one-size-fits-all.  We are trying to transform a system that provides best support to ALL people with CF, including healthy, sick, old, young, etc.

To continue to follow what's going on with the CF Care Model of the Future and/or to share your thoughts, feelings and ideas, tweet and "listen" under the hastag #cfbigidea.