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Archive for June 2014

No Good: Deregulation of Respiratory Therapists in Texas

Monday, June 30, 2014

Last week, I learned of a recent recommendation by the Texas Sunset Commission that Respiratory Therapists (RCP's) in Texas should be de-licensed or, as they stated, be "discontinued". 

According to San Antonio's News4, "The Sunset Advisory Commission reviewed the Department of State Health Services advisory programs and found the agency's regulatory functions are 'unmanageable' because of the expansion of regulatory responsibilities and shrinking resources. The commission recommends eliminating 19 regulatory programs because they 'duplicate existing safeguards... and could be safely eliminated.'"

I found out about this issue last week when a Texas CF Foundation (CFF) chapter's Executive Director turned to me, in my position of the CFF's Northeast Texas Advocacy Chair, to see what we could do.  Apparently, a Respiratory Therapist who works at a north Texas hospital with CF patients had originally contacted her to see if she and the CF Foundation could help fight this recommendation.


Having not yet heard of this movement to deregulate the very vital Respiratory Care Therapists that my son uses at the CF Clinic, I contacted the CF Foundation's Public Policy team to see what they thought.


Within 24 hours, I received a call from the CF Foundation's Public Policy team asking if I could attend a very important meeting in Austin the next day, in order to speak on behalf of the CF Foundation and the CF community it represents.  The CF Foundation was very concerned about the potential of de-regulating Respiratory Therapists and the potential harm it would do to the health of CF patients.


Although I wasn't able to attend, a Respiratory Therapist who works at for Dell Children's Hospital in Austin went on our behalf.  She read a letter from the Foundation (see below) and was able to get the CFF's strong opposition to this suggestion on record with the committee.  


I have included the the letter that was read at the Advisory Commission meeting on Wednesday, June 26 in Austin:








A few of the important statements to note include:

"We [the Cystic Fibrosis Foundation] are greatly concerned that the Sunset Commission’s 
recommendation will have a negative impact on patients relying on RCPs.

"Medical mistakes are a major 
cause of mortality in the US. The complexity of the current healthcare system, the speed with which new drugs and treatment options reach the market, the technical expertise required of RCPs demands that multiple layers of oversight exist. The only consistent oversight required of all RCPs occurs through licensure/regulation by the Department of State Health Services (DSHS). 


"Our [the Cystic Fibrosis Foundation's] recommendation is not to deregulate RCPs’, but for the Respiratory Care Practitioners program to either remain with the DSHS or to be transferred to the Texas Department of Licensing and Regulation (TDLR)."


Several years ago, I volunteered to be a part of the Cystic Fibrosis Foundation's Advocacy program.  Each Spring, I meet with other Advocacy Chairs in Washington DC to help lobby for the needs of those with Cystic Fibrosis.

But, it wasn't until this specific situation that I observed just how vital the CF Foundation's Advocacy program is to our CF Community.  Despite how amazing our Public Policy team at the CF Foundation is, they cannot stay on top of all of the very small changes that are happening on the state-level with regard to healthcare.  This is why CF advocates are vitally important.


As CF parents, our eyes are on our children's health and on the potential life-changing medications that continue to move out of the labs and through clinical trials.  For me, there is a tendency to think that that's all to which we really need to pay attention.  


But with continued changes in the healthcare laws, as CF parents and CF advocates, we must also pay attention to the small changes that are happening in our government as they have the potential to dictate much change for the way our children undergo care.


Thankfully, due to strong representation of Respiratory Care Therapists in support of licensure, the commission is planning to hold the recommendation to de-license until further review.  Apparently, there will be a subcommittee lead by Representative Four Price, to research licensure options outside of DSHS.


I will continue to follow this on-going issue that would have a significant impact on CF patients in Texas.  


But I encourage CF families and advocates in other states to pay attention to similar changes happening in their states.  Michigan has seen a similar proposal in their state.

And, for those who have not already signed up to receive updates through the CFF's Advocacy Action Alerts, I encourage people to sign up here.  We need more eyes and ears caring for our CF community.

Last weeks' meeting is evidence that our voices do matter.

How $56 was turned in to $421 for Bennett

Saturday, June 28, 2014

This was my view a few weeks ago when I agreed to Skype with my friend Lani in Illinois.  She wanted to share with me how much her friends and students had raised for find a cure for Bennett.

I was sad that it was too late at night to have Bennett join us on the Skype call.  But, it was *such* a treat to get to see some of the faces who cared enough to give to the Cystic Fibrosis Foundation on behalf of Bennett.


Lani is a Resident Counselor (RC) at the Illinois Math and Science Academy, a residential high school for students gifted or talented in math and science.  Each year, Lani encourages the students in her building and wing to do something philanthropic.

Last year, she encouraged her girls to donate to finding a cure for Bennett promising she would meet what they raised.  Lani and her girls were able to raise
 $100 for Bennett's Brigade.

This year, she took it a step farther, asking others to match what she raised and she ended up raising more than 4 times that amount!!

Lani is the Resident Counselor in building and wing 1506A.
This is how Lani turned $56 to $421, in her own words:
"Instead of just challenging our sister wing, this year I decided to bring it to my RC staff. We have a Facebook group, so I posted a link to the video for them to see.  I asked a few personally, as well, if they could help in any way, even if they couldn't match the full $30. 

Then, I talked to a couple other people out side of my staff to see if they would be willing to match my girls up to $30 as well. 

I had one friend whose sister had passed from CF and said he would match up to $100 and another who after hearing the story said he'd match up to $50I shared this all with the girls and the challenge was on.

In the end, we ended up collecting $56 in my wing alone (20 of the 24 high school girls donated at least $1.00).  Plus my match, made us close enough to $100 that my friend gave us the full $100 and my other friend gave the $50. Then I had 3 friends match the $30, 1 gave $40, another $20, one $15 it was amazing! 

Then, I visited my aunt one day and shared with her what I was doing. She was so touched she took out her check book.  Her check is for $18 which is the Hebrew number for life. Gifts are often given in increments of $18 for bar and bat mitzvahs in the jewish culture. 


I thought it was so perfect and touching for her to pick that amount to donate for Bennett." 


This past week I had a rare opportunity to thank Lani in person when she came for a visit to Dallas.  She shared again with me how it all worked how and then she said, "I wish I had done this last year...it was so easy!!"  I loved seeing the grin on her face when she shared her delight that raising money for someone else could be so joyful and easy!  I thanked her from the bottom of my heart for her willing to ask others.  She reminds me how powerful telling Bennett's story and asking for help can be in raising money for a cure.  I am so very grateful for Lani's determination and willingness to do this for a little boy she still hasn't had a chance to meet.  



Thank you, Lani (back left in the green shirt).  Thank you also to (in no particular order): Kristy, Michele, Stefanie, Bella, Simone, Annie, Shruti, Sachi, Angie, Ella, Ashu, Binita, Greeshma, Eveline, Joanne, Vivian, Shelly, Claire, Sue, and Phuong, JD, Jonathan, Eric, Shemika, Lauren, Dale, Jack, Kavita, and April and Debbi...as well as Lani's aunt, Debbi (not pictured)! :)

Lumacaftor and Bennett's Game Pieces

Wednesday, June 25, 2014

Yesterday was a big day in the CF Community.  A medication named Lumacaftor (also known as VX-809) was moved out of a Phase III clinical trial and is now headed for FDA evaluation.  If approved by the FDA, it will hit the market and hopefully be available  in 2015.

Bennett's two CF mutations are F508del are 621+1G>T.  Since he does not have two copies of the F508del mutation, he is not expected to benefit from Lumacaftor.  Nonetheless, we, along with the entire CF community rejoices when any progress is made in the world of Cystic Fibrosis.

The success of Lumacaftor is one in which we expected but were disappointed to learn did not perform nearly as well as we all had hoped.  So, I feel a little bittersweet about it.  It is showed some effectiveness for those it's supposed to benefit but it's no miracle drug.

Thankfully, the CF Foundation (CFF) does not put all of it's eggs in one basket.  The CF Foundation is very busy supporting and following many other medications in the pipeline such as Ataluren, VX-661 and N6022.  (Apparently, there are others but the CFF has not shared specific information about these yet.)

VX-661 as it is thought to be a stronger drug than Lumacaftor and is expected to be more helpful for those carrying one F508del mutation (which Bennett does).  Testing may begin later this year and, if all goes as expected, we may see FDA evaluation for this drug in 2016.

A CFTR Modulation Expansion timeline from the Cystic Fibrosis Foundation

Since Bennett needs only one mutation fixed to be "cured," we are also paying attention to medications that might benefit Bennett's 621+1G>T mutation:  Gene therapy may work for his 621+1G>T mutation but we're not necessarily hopeful this will benefit him any time soon.  There is some indication the 621+1G>T benefits from Kayledeco in the lab.  So, we are also following this study: http://www.clinicaltrials.gov/ct2/show/nct01685801.

Watching these medications move from one clinical trial to another, in hopes of FDA approval, feels a bit like playing the game "Chutes and Ladders."  My child's gene mutations feel like game pieces that I'm watching be moved across a game board.  Maybe this game piece will work with this strategy, if not, maybe this other game piece will work with this other strategy.

Since promising clinical trials can be unsuccessful and successful clinical trials can be refused FDA approval, it can feel like I never really know where we are in the game.  Am I climbing a ladder?  Or are we slipping down a chute?  Are we at the beginning of the game or nearing the end?  If I think I'm near the end of the game, is there a chance I could be thrown back to the beginning?

I am grateful that we have game pieces to play with.  And I am grateful that we have many different clinical trials and medications to follow.  We are much farther in "winning this game" than we were even 20 years ago.

But I have to remember that even if the medicine I'm following is not successful and the clinical trial I'm watching does not result in the kind of promise I was hoping for, Bennett's breath is not ultimately dependent on a clinical result or an FDA approval.  

Bennett's life has and always will exist in God's hands.  Matthew 4:4 

Making a Hardcopy of Bennett's Blog (aka how to turn a blog into a book)

Tuesday, June 17, 2014

A few weeks ago, I was talking to my mom about technology and about how scary it is that so much of our lives are saved on our phones, on our computer and on the internet.  On one level, it seems safer and more accessible.  But, on another level, I also know that backups sometimes fail and companies sometimes shut down their websites.  

This made me think about this blog.  Bennett's blog is my own personal journal of Bennett's birth, diagnosis and fight against Cystic Fibrosis.  I don't know what I would do if I would ever lose it.  So, the other day, I decided to put the blog in book form:

I wasn't able to fit it all in one book (as in, the website said they don't print books that big, ha!)  So, I decided to split it up into year-long increments.  I started with 2009.


I was shocked to find out the first book (from 9/30/09-12/31/09) turned out to still be 534 pages long.


I chose the very first picture I ever took of Bennett to be the cover photo on the book.  It reminds me just how far our little superman has come.


I am super thankful for this post about how to make your blog into a book.  Not only did this blogger share her thoughts on the best website to use, but she also gave a breakdown on how to do it.  I chose to do a few things differently but overall, I thought her insight was very helpful and I recommend it to anyone interested in doing the same. Taking blogger Jocelyn's lead, I went with lulu.com and I was very happy with the product!!


So, here's how I did it:

There are lots of websites to use, but I chose lulu.com.  In order to upload it to Lulu, I needed to make a pdf of the blog.  I found a free website called blogbooker.com.  It allowed me to easily convert the blog to a pdf.  I was then able to easily upload to the Lulu website.  

Although blogbooker.com saved me waaaay more time and effort than going through coping and pasting each post to a word document as this blog post suggested, using Blogbooker meant that I couldn't make any edits to the copy before it uploaded to Lulu.  I was ok with it since I'm not selling or publishing this book.  At 500+ pages, I didn't want to spend the time necessary to edit.


In the process, I did indicate I wanted each blog post to start on a new page.  I think it made it come out nice and clean.  I was very impressed with the quality of the print.


The printed pictures are grainy but I agree with blogger Jocelyn when she said she didn't care that much about a good quality printed copy of the pictures in the book since she owned the original copies.  


The front design leaves something to be desired but, again, I was less concerned about how it looked and more concerned with just getting a print copy for safe keeping.


Somehow, and I'm still not sure how but, somehow, I indicated early in the process I wanted a paperback copy.  Next time, I will make sure to indicate hardcopy.  I think it will hold up better that way.  But, I decided to order a paperback just to try it out.  The great thing is I can repurchase as many copies of this book whenever I want.


As good of quality this book turned out to be and at the price point that it was ($15.96 including shipping), it won't be long until I print the entire blog.

It does inspire me to think about writing more often.  There is something awfully fun about seeing my thoughts in book form.  I feel a bit like a kindergartener whose teacher has put my work in a frame.   But most importantly, I'm delighted that our family now has a very easy way to re-read Bennett's journey...a journey that is far from over and just barely begun.

Bubbles and Bites CF Fundraiser in Dallas in July!!

Thursday, June 12, 2014

BabyBowTie is at it again - helping us find a cure for Bennett and all those suffering from Cystic Fibrosis!!  And they've asked Kendra Scott to join the effort!

If you're in the Dallas area, come join us for a fun shopping event on July 10 with 20% of sales benefiting the Cystic Fibrosis Foundation.  There will be champagne and some nibbles to enjoy while you shop!  Even sweet little Bennett will be there! :)

2699 McKinney Avenue, Suite C305
Dallas, Texas

Please invite your friends!!  You can do it easily through Facebook, just click this link!


How's it going for Mr. B...

Monday, June 9, 2014

He has done it.  Bennett is fully a "big boy" and out of pull-ups completely, just in time for summer. He is soooooo proud of himself!! :)

Brian and I thought this time would never come, his being out of diapers, but it eventually did.  Similarly, several years ago while at the Feeding Clinic, we thought he would never learn to eat, but, then too, he did.

Bennett finally being potty-trained reminds me how life might present Bennett with more challenges than it does for others. But, each time, Bennett rises up to overcome every single one.

I am so thankful that God has provided Bennett with the strength and ability to keep facing and overcoming each challenge that has been put before him (from a bursted colon in utero...to a "failure to thrive" diagnosis...to a bout with the C.diff. infection...to issues with rectal prolapse).

These days, Bennett is a very well-adjusted 4-year old.  He enjoys going to school, has lots of friends and a great sense of humor.

We are delighted that lung issues with Bennett's Cystic Fibrosis continues to stay at bay.  We don't know how or why.  But we are thankful for every single very good day he has been given.  We know his healthy days are numbered so we count them as huge blessings.

Despite his consistent breathing treatments every morning and evening...and despite that he is put on a feeding pump while he sleeps each night, he is a normal little boy who has most recently enjoyed playing t-ball, visiting the beach with his grandparents and pretending he is Spiderman.


Just today, Bennett had a follow-up appointment with Pediatric Surgeon from Scott and White in Temple.  We hadn't seen her in quite some time.  She was visibly surprised to see how much Bennett has grown.  When Dr. Perger learned Bennett is now potty trained, she was even more delighted!  

Dr. Perger shared with me today had had doubts about his ability to be potty trained one day.  She said that she had not known if the surgery would work.  She said rectal prolapse in children is rare and that, if left untreated, can cause the sphincter muscle not to work correctly.  (I had not realized today just how worried she was that he wasn't going to be able to have continence.)  

So, after our visit, as we said goodbye to Dr. Perger, I became tear-eyed, overcome by her positive response to his growth and development.  As his mom, I don't always have the opportunity to sit back and really notice how far Bennett has come.  Today, through Dr. Perger's eyes, I was able to see Bennett's progress.  Although once a tiny sick baby, today, Bennett is thriving, for which I am incredibly thankful!!


Our attention these days has been spent more on Oliver.  Oliver continues to deal with mild anxiety so Brian and I have recently reached out to some experts in child anxiety so that we can learn more about how to address his emotional needs.  Most people would never notice Oliver struggling.  He has learned how to more very effectively deal with his anxiety.  But, as he has developed broad language skills, he has begun to share with us what is going on inside him and to ask for help.  We are so thankful Oliver can tell us he is feeling distress and we can respond with outside support.  

We are always aware that even when CF is controlled, Cystic Fibrosis affects our entire family, not just Bennett.  During a recent conversation with Oliver's play therapist, the therapist mentioned he would like to explore with Oliver his "role" in our family and how he might see his "job" as the healthy child and the big brother of a child with CF.  I really appreciate a conscientious therapist to help us monitor how Oliver is handling all that comes with having a brother with a life-threatening disease.






I should probably mention our chunky monkey Avonlea!  Babycakes just turned 10 months old and is on the cusp of walking.  She has 6 teeth, prefers real food over baby food and loves the heck out of her big brothers.  Oliver is a huge help with her and has the ability to make her smile more than anyone else. Bennett cannot wait for the day when she can actually play with him.  For now, he loves to lay on the floor and let her touch his hair and climb over him.  

She is such a chill baby.  She hardly ever cries, even when being put down to sleep.  In fact, she's an amazing sleeper.  She sleeps hard and prefers sleeping in.  The only time we really see her get very vocal is with food.  She *loves* to eat!  Her favorite food: ice cream (she's clearly a third child if she's enjoying ice cream at this age)! :)


As Bennett was going to sleep the other night, he asked if I would say prayers with him.  He closed his eyes, folded his hands and said, "Dear God, thank you for my superheroes, Spiderman and Batman, for fixing my Cystic Fibrosis."

I felt both sadness and joy at the same time to hear this little prayer. I felt sadness because I know that superheroes aren't real.  And, at this point, neither is our ability to fix his Cystic Fibrosis.  But, my heart felt a sense of joy to "overhear" his sweet heart: He thanked God for sending heroes to help make him better.

Right now, Bennett thinks the superheroes will do it.  But, in time, he will learn that the "superheroes" that are going to make it happen, are our friends and family who walk at his CF Walks and who donate to the Cystic Fibrosis Foundation on his behalf.  His superheroes are those around him who love him.  I agreed with Bennett, I am also thankful God have him superheroes to fix his Cystic Fibrosis - people like you.

Bennett's Brigade :: RALEIGH-DURHAM, NC 2014

Sunday, June 8, 2014


Another first-year team we are so excited to celebrate is the Raleigh-Durham, NC Bennett's Brigade team!!

Before moving to Waco, Texas, Brian and I lived for three years in Durham, NC where Brian attended and graduated with his Masters of Divinity at Duke University.  When we were there, we met so many wonderful friends with whom we still keep in touch.  We were so sad to have had to move from NC to Texas just as we were expecting Bennett.  But, thankfully, our friends have comforted us and walked with us through our cystic fibrosis journey through emails and Facebook.

It was such a delight to have some of these dear friends come out for the Raleigh-Durham Great Strides Cystic Fibrosis Walk this year!  Led by our friends Cynthia and Tim, this team raised $775 to help us find a cure for Bennett.



Baby Lillian, Avonlea's little friend, may be tiny but she's still "in it for Bennett"

Tim, Cynthia, Molly and Evan check out the firetruck
The CF Teams gather.

Watching the bike race.


Fast driver, Tim


Oliver and Bennett's friends' Ada and Miles
Balloon sword fight.

Three of Bennett's little buddies

Run, Miles, Run!!!

Bennett's Brigade :: WILMINGTON, NC 2014

Friday, June 6, 2014

The Wilmington, NC Bennett's Brigade team is what first moved us from a local team to a Cystic Fibrosis Foundation-recognized National Family Team!!  


For the second year, Bennett's Brigade Wilmington, NC has demonstrated that fighting for Bennett's life isn't just something we do here in Texas!! :)  North Carolina is "in it for Bennett", too!!




The support and love from Leah (pictured here holding the rose) and her friends and family ripples through our hearts all year long.  


Bennett's Brigade Wilmington, NC raised $350 for Bennett this year and grew even bigger this year from last!!  







I wish I could reach through this picture and give each one of these sweet people a hug.  
Thank you, Wilmington crew!!!  We love you!!