Tuesday, November 10, 2015

Pumpkin Pictures 2015

Every year (since Bennett was just a year old),  I have taken pictures of the kids outside with a pumpkin in October.  I love getting to see how much they grow in a year.

Here are this year's pumpkin pictures (see all of Bennett's past pumpkin pictures are at the end):

These two are best of friends.  Avonlea asks for Bennett every morning when she wakes.  Bennett loves to push Avonlea on the swingset outside.  They love watching TV together.  They love to wrestle with each other.  They are truly best buddies.

2015: Avonlea, 2 years

2015: Oliver, 7 years

2015: Bennett, 6 years old

2014: Bennett, 5 years old

2013: Bennett, 4 years old

2012: Bennett, 3 Years Old

2011: Bennett, 2 Years Old

2010: Bennett, 1 Year Old

Saturday, October 31, 2015

Happy Halloween 2015

Happy Halloween

...from our littlest Tango dancer, our bravest Spanish superhero, Zorro, 
and everyone's favorite, our playful Pinata!

A big thank you to my friend Margaret who helped sew lace on a black skirt and the top of a red leotard.  Finding am already-made toddler flamenco dancer costume was a bit challenging.  :)

Zorro was an easy costume to pull together.  Oliver's favorite part of his costume was his sword.  The mustache idea was his own. :)

I made Bennett's pinata costume by hot gluing strips of felt on a an oversized one-piece pair of pajamas.  It took forever but it was well worth it!  He loved seeing people laugh when he told them he was a pinata.  Brian and I thought this costume so well reflected his personality!

We have had quite a few rainy days in Texas lately so we were worried that Halloween might be cancelled.  Thankfully, it cleared up a few hours before go time.  All three kids loved trick or treating this year.  Oliver enjoyed explaining each of the kids' costumes.  At one point he said, "I'm Zorro.  He's a pinata.  And she's a Spanish princess."

Bennett, the most social of the three kids, really enjoyed thanking people for the candy and telling them "happy halloween."  At one point in our trick or treat outing, we came across a house in which a neighbor, dressed as a witch, was standing outside making scary hallowing noises.  Bennett, confident that he did not need to be scared, walked up to the neighbor lady and said, "I really like your voice.  You make really good scary noises!"  It made the neighbor's day.

Avonlea cracked us up tonight.  Earlier in the day, Brian and I had practiced with her how to knock on a door and say "trick or treat." But all that practice went right out the window when Avonlea got up to the first house.  Tightly clutching her pumpkin bucket (which she called her "purse"), Avonlea went up to the first house, knocked with her tiny fist and then shouted loudly: "Open the door!!"

Thankful for moments like these,

Thursday, October 29, 2015

2015 Pumpkin Patch Pictures

Excuse me while I insert some of our annual pumpkin pictures for the Grands... ;)  

See how much the kids have grown through our annual pumpkin patch pictures!

 Pumpkin Patch - 2015 (Oliver, almost 8; Bennett, 6; Avonlea, 2)

 Pumpkin Patch - 2014 (Oliver, almost 7; Bennett, 5; Avonlea, 1)

Pumpkin Patch - 2013 (Oliver, almost 6; Bennett, 4; Avonlea, 3 months)

Pumpkin Patch - 2012 (Oliver, almost 5; Bennett, 3)

 Pumpkin Patch - 2011 (Oliver, almost 4; Bennett, 2)

Pumpkin Patch - 2010 (Oliver, almost 3; Bennett, 1)

Pumpkin Patch - 2009 (Oliver, almost 2; Bennett, in Mommy's tummy)

Pumpkin Patch - 2008 (Oliver, almost 1)

Pumpkin Patch - 2007 (Oliver, in Mommy's tummy)

Monday, October 26, 2015

Raising money for a cure for CF in memory of Sonny

This past August, my good friend Casey (below in red), along with his sister Laci (in pink shoes), held the 15th Annual Sonny Rose Memorial Softball Tournament in Jonesboro, Louisiana.  This year's fundraiser benefitted the Cystic Fibrosis Foundation in honor of Bennett.

Casey and I went to high school together.  He's a great guy and a strong supporter in Bennett's fight to win out against CF.  Casey and his sister know what it's like to lose a sibling so they don't want Avonlea and Oliver to ever have to experience that feeling.  Casey and Laci lost their big brother, Sonny, to a car accident about 15 years ago.  

Here is a sweet childhood picture of Casey (in red), Sonny (in blue) and Laci (in pink).  

Recently, I asked Casey to help me remember who Sonny was as a person.  Here's what he shared with me:

"Sonny was a great brother, a loyal friend and a fun guy to have around.  He was an entertainer and the life of every party.  He loved sports, especially baseball.  Sonny had a big heart and loved kids. He would be honored knowing that we are raising money, in his name, to help find a cure for Bennett."

Sonny, left, and Casey, right

Our family was bummed not to be able to travel to Louisiana for the tournament since school had just started for the boys.  But we're hoping to be there next year.  

This year's fundraiser raised $2400 for Bennett's Brigade.  First place went to "Beauties and Beasts". Second place went to "Dirty Dozen." Third place went to team "Old School".

Thank you to Casey, Lacey, Casey's family and everyone who participated in this year's softball tournament.  My heart is incredibly grateful for the gift of love that was been given in the name of Sonny to Bennett and all those suffering from Cystic Fibrosis. 

Deeply thankful, 

Thursday, October 22, 2015

Mental Health and Cystic Fibrosis

Terminal diseases are depressing.  Chronic diseases are anxiety-producing.   Cystic Fibrosis is both.

My final blog post on what I learned at this year's North American Cystic Fibrosis Conference is about the big announcement by the Cystic Fibrosis Foundation regarding mental health:

Across the country, CF Care Centers will soon begin screening (and, for some, treating) CF patients and their families for anxiety and depression.

(This post is my third of three blog posts about my experience at the 2015 North American Cystic Fibrosis Conference.  To read my first post, click here.  To read my second post, click here.  This specific blog post addresses items that were presented in the 3rd plenary at NACFC.  Watch this plenary yourself, click here.)

A recent international study showed that CF caregivers and people with CF have a depression/anxiety prevalence of 2-3X higher than that of the general community. 

Out of caregivers and those affected by CF, CF moms scored the highest in anxiety and depression.

This study also showed that if a caregiver had a higher anxiety/depression score, the child was likely to as well.

CF Foundation announced at NACFC that they believe mental health is an important unmet clinical need.

The CFF has begun working to address this issue by:
* creating mental health guidelines
* developing manuals on how to create referral networks
* writing handouts on psychotherapy
* encouraging local CF Care Centers to establish "mental health coordinators" in their CF Clinics
* implementing strategies for prevention/screening/case management for those needing interventions and
* offering trainings for CF clinicians on cognitive behavior therapy and psychopharmacology.

There was naturally a lot of excitement in the room when this announcement was made.  I think everyone was relieved to see a plan in place for addressing an issue that most already recognized: CF can take a huge toll on one's mental health.

I am so appreciative that the CFF is being forward-thinking in this area and bringing awareness to this issue.  Hard work was put in to this study and its' coordinating plan to address what to do with so many in our community struggling to cope.

I'm a huge proponent for psychotherapy and the use of medication to treat mental health issues. I'm so glad that the CFF is encouraging conversations between doctors and patients/caregivers regarding this issue.  

But I have two concerns on this topic I think are worth mentioning:

1.) I'm concerned that surveying and referring CF caregivers and patients to mental health resources may lend itself to be a "quick fix" to a much bigger problem that has yet to be addressed: the cognitive burden CF brings to a family.

The fact that CF moms, who very often (although not always) carry the caregiving burden for the child with CF, have the highest rates of anxiety and depression gives us some insight in to the fact that this issue goes beyond the disease itself.  As a CF community, we have to address the fact that while CF treatment may be keeping us healthier, we have a "quality of life" issue that must be addressed.  

So much of CF care today is filled with a day-in and day-out, over-and-over-again monotonous time-intensive treatment regimen - paired with a lack of confidence, at times, that what is being done is right or best - and punctuated by infections/flareups/exacerbations that require significant logistical changes.  As people with CF grow up, more and more medications and treatments are added over time.  This takes an emotional toll both on the person with CF and their family.  

It is the most helpless feeling to do all of the things we do for CF and not really know whether or not it matters (Should I be doing 2 treatments daily or 3?  Am I sterilizing my equipment the right way? Should I treat this fungus in my lungs or leave it alone?  Is it better to do IV meds at home or in the hospital?)

What I wish CF clinicians understood about CF is that simply referring patients and caregivers to a therapist or simply prescribing a pill is actually, inadvertently, simultaneously adding to our cognitive burden.  It's one more appointment to arrange, one more pill to remember to take, one more co-pay to make.

I wonder how significantly beneficial to the mental health of those in the CF community it would be if we addressed the cognitive burden of Cystic Fibrosis.

2.) I'm concerned that if there is not mutual trust between the patient and the healthcare provider then surveying people with CF and their caregivers for mental health will not be ultimately beneficial.  

It's well-known among patients/caregivers that some patients/caregivers are not always fully forthcoming or honest with their healthcare providers.  This isn't because they don't want to be.  Many times this lack of honesty is due to a lack of time to talk further in the clinic.  Sometimes it's due to the patient feeling unheard.  Other times it's because the patient/caregivers fear that they have to say would upset the clinician.  Whatever the reason, we know patients struggle with this issue.

Trust is fundamental to bringing value to the patient/caregiver screenings.  If patients and caregivers are not already feeling a sense of trust with their CF Care Teams, if they are already not open about their lives with their healthcare providers, they will not likely share their issues with depression and anxiety.

How might we address building greater trust between patients/caregivers and those who care for them?

My suggestion would be for their to be more opportunities healthcare providers and for patients to work together outside the clinic, to get to know each other as humans first.  Maybe this shared trust could happen through working together on a patient and family advisory council.  Maybe NACFC provides opportunities for clinicians and caregivers to get to know each other better.  Maybe social media provides a place for clinicians and patients to interact.  However it happens, if patients and healthcare providers can learn to talk to each other about normal human things first, it will be easier to talk about more challenging things like feelings of depression, anxiety (even thoughts of suicide).  

Clinicians, in caring for their patients' well-being, are often concerned about patient "adherence" (adherence describes whether or not a patient is taking the medications/treatments that have been prescribed for them).  It was mentioned at NACFC that improving a patient's mental health will likely improve their adherence to their medications.

However, I'd like to flip this and suggest the otherwise may be true: 
Listening to patients/caregivers and truly understanding the reasons why CF patients/families struggle to do their meds may give greater insight in to not only "adherence" issues but also why mental health issues in the CF community exist at all.

I am proud of the way the Cystic Fibrosis Foundation works to relieve the pain and suffering of families with CF.  How might we work together to maximize these efforts?  Let's look to relieve the cognitive burden of CF and build a greater mutual trust between healthcare providers and their patients/caregivers.  I believe doing so will greatly improve the mental health of everyone fighting this unrelenting disease.

Sunday, October 18, 2015

My NACFC 2015 "Nuggets"

This post is my second of three blog posts about my experience at the 2015 North American Cystic Fibrosis Conference, the largest international gathering of CF clinicians, researchers, patients* and parents.  To read my first post, click here.

There is way more information than I could easily share on my blog so I highly recommend watching the NACFC plenary sessions that were recorded live: Plenary 1 (future of personalized medicine)Plenary 2 (about clinical trials)  and Plenary 3 (about mental health).  I also recommend reading fellow CF mom Rebecca's blog for other NACFC medical/science updates.

To easily share what I learned at NACFC, I am sharing them in "nugget" form:

Nugget #1: We have seen an increase of MRSA in CF lung cultures in the last 20 years.  There are currently limited treatment options for MRSA. A trial funded by the CFF called STAR-TOO shows there is benefit to early intervention for newly acquired MRSA.

Nugget #2: The Inhaled Vancomycin Therapy (AeroVanc) study for those chronically infected with MRSA is preparing to start Phase III trials in 2016.  If it succeeds in Phase III clinical trials and approved by the FDA, it will be the first inhaled antibiotic to treat MRSA.

Nugget #3: There may soon be a new way of doing pediatric PFTs.  It's called the Multiple Breath Washout (MBW) and Lung Clearance Index (LCI).  It may eventually come to a pediatric CF Care Center near you.  MBW/LCI was selected as the primary outcome for efficacy in the European Ivacaftor/Lumacaftor study in younger children with CF ages 6-11.  It was also chosen to be the primary outcome in the Saline Hypertonic In Preschoolers (SHIP) study.

Nugget #4: There looks to be a new standardized way of evaluating "silent" CF disease progression in very young children.  It's called Pragma-CF.  This is the work of ArestCF, the Australian Respiratory Early Surveillance Program.

Nugget #5: We are in the age of personalized medicine, particularly with regard to Cystic Fibrosis.  Some people benefit from drugs while others do not. The CFF has recognized this and are actively looking for more tools to figure out the right therapies for each person.

Nugget #6:  Scientists believe personalized model systems (such as intestinal organoids, nasal cells and stem cells) may eventually help predict clinical benefit of new therapies.

Nugget #7: Novel biomarkers may have the ability to give us more information on patients' disease progression.  Doing so may eventually accelerate clinical trials and streamline therapies.  An example of this is the biomarker of mucus.

Nugget #8: The life expectancy of those with Cystic Fibrosis has increased over the last 30 years.  Evidence-based medicine is part of that success.  This slide shows when medications have been introduced to regular CF care and how they correlate:

Nugget #9: Thankfully, this year there are more medications/treatment protocols being evaluated to treat CF than ever before:

Nugget #10: This year is also the year that patient participation in clinical trials for CF is higher than ever before (even higher than was projected).

Nugget #11: The way the CF community does clinical trials needs to be adjusted.  In a recent CFF Caregiver study regarding clinical trials, it was found that 77% of the patient/caregivers report symptom relief as the primary goal of pulmonary exacerbation treatment.  However, respondents thought doctor's primary goal of antibiotic treatment was equally recovery of lost lung function and relief of symptoms.  The study found that overall, patients/caregivers are willing to participate in clinical trial studies, trust their physicians more than study researchers, expressed legitimate concerns regarding treatment duration and consider symptom resolution a high priority.  According to the CF Foundation, understanding the needs of the CF community will hopefully help CF researchers make clinical trials more conducive to successful research.

Nugget #12:  The CF Foundation just turned 60 years old.  It used to be called the "National Cystic Fibrosis Research Foundation." (Just a random fact I thought was interesting.)

Nugget #13: CEO Bob Beall has officially stepped down from leading the CF Foundation.  Dr. Preston Campbell has taken over as CEO.  But, thankfully, Bob Beall will continue to work at the CF Foundation, he will just no longer be leading as CEO.  Bob explained, "this is a train that you can't get off of."  

If you've heard about the biggest "nugget" from NACFC regarding Cystic Fibrosis and mental health, I haven't forgotten about it.  I'll post my thoughts in a few days on the topic in my third and final blog post about NACFC 2015.