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Archive for February 2012

CF Foundation Conference, Part 2: Julia Rae

Wednesday, February 29, 2012

During one of the sessions at the CF Conference, a very talented and gorgeous young entertainer named Julia Rae sang for us.  It turns out she has Cystic Fibrosis.

Julia Rae's song, "Be That Girl" was recently chosen for the feature film "The Greening of Whitney Brown" starring Brooke Shields.  It's a fun song that I love listening to on repeat.  (Although, I think I love this one even more: "Sing It At The Top Of Your Lungs")

Julia Rae has a beautiful voice, but it's even more beautiful when I consider all of the things does to keep it sounding that way!

I love seeing talented young adults like Julia Rae is demonstrating CF doesn't have to hold you back from your dreams.

(And can I just say how honored I was to learn, when, the other night, I wrote on Julia Rae's Facebook page to say I'm a new fan that she actually reads Bennett blog!  How fun is that?  Small world, this CF Community is!)  


CF Foundation Conference, Part 1

Monday, February 27, 2012

I met him! I really really met him! And he was gracious enough to let me take a picture with him!

This is Bob Beall.  He is the CEO and President of the Cystic Fibrosis Foundation (CFF) and has been for the last 30 years.  Bob is revered as the CF community's fearless leader who has been integral to making seriously significant headway for finding a cure.  No one will quite understand the love CF Mamas have for Bob.  But we love Bob!!!

I met Bob briefly last week as I had the opportunity to attend the Cystic Fibrosis Foundation's Volunteer Leadership Conference in Bethesda, Maryland.  I wasn't quite sure what I was getting myself in to but I am so very glad I went!


This is a picture of the beginning event.  There were about 500 people there total.  Half of those were staff members who were attending the conference as a part of their CFF staff conference.  The other half were parents/family members/friends of those with CF - people who are serious and dedicated to raising money for a cure.  I had no idea how infectious these people could be! 


This year's conference was run by two wonderful co-chairs, a husband and wife duo, named Perry and Kelli Clark, whom I had the privilege of meeting.  (I wish I had had my big camera so I could have taken better photographs but I needed something small enough for the purse.) They are the parents of three boys.  Their youngest, Wells, has CF.  Kelli is a spunky mama-bear who strikes me as someone who will get things done to save her son, but always in the most gracious way possible and with a smile.  She's the kind of CF Mama I want to be! 


These are just some of the people at the conference.  Many of them were honored with awards for their dedication.  These are people who encourage me to keep fighting, even as I get tired of the day in, day out effort it takes to keep Bennett healthy.  If they can do it, so can I.


The conference was educational, inspiring, fun and emotional.  Moving videos like this one were shown from time to time over the course of the conference.  Hearing a mom talk about how her son asked her if he will have to do CF treatments in heaven left not a dry eye in the place.


Dr. Preston Campbell, a very talented Pediatric doctor from John Hopkins gave us a "State of Science" Update, which was awesome.  It's true, I had to tell myself while listening to him, we seriously are very close to being able to manage this disease...not a cure, but something almost as good.


This is just one of the many slides that Dr. Campbell showed.  He talked about the progress of the newest CF drug currently in trials.  We don't know if VX-809 is going to work.  Dr. Campbell said there is a 50/50 chance.  But we should know the results late this summer or in September.  More was said but I'll put up another post for that one.


My tag.  I'm a official.  In this CFF thing for life.


This is a bad picture but I had to take it.  Only at a CF function would you find little bottles of hand sanitizer sprinkled about the table, next to the platter of fruit and chocolate covered strawberries.


 
I was so excited to meet Casey and Holly Liles.  Holly and I grew up minutes away from each other but never knew each other until our sons were diagnosed with CF.  While we have a common friend, we actually became friends over Facebook through the CF Community there.  We won't ever be able to get our little boys together to play but we certainly can stay in touch via the internet and through opportunities like this. 


This is Amy, the person I work with most with regards to our Great Strides event.  Amy works at the CF Foundation and works tirelessly to raise money for a cure.  But this isn't just her job.  Her son James, a young adult, battles Cystic Fibrosis, too.


And this is my new friend Kara.  She happened to be on Facebook one evening after our event updating the CF community on what we had learned at the Conference.  Because I meet so few mamas that I speak to online, I asked if we could hook up at some point.  Turns out, we were at the same session the next day.  Kara has two young sons, just like me.  The oldest, 4, doesn't have CF.  The youngest, 2, does.  So glad to meet another Mama fighting for her baby! 

Oh! And there is one more thing...a surprise announcement coming from the CF Foundation about a new logo.  It will be our first logo change in 55 years!  I won't spoil the surprise but I will share a picture of the new corporate campaign logo the Foundation is working on:


More about the VLC Conference, coming soon!...
 

I did Pinterest before Pinterest was invented.

Wednesday, February 22, 2012

Ok, this has nothing to do with Bennett or Cystic Fibrosis. But I couldn't help but share these pictures.  They remind me of the stories I will one day tell my boys about growing up in the 20th century.

Yes, boys, growing up in the 20th century would seem quite archaic to you:
As a child, I recorded my favorite movies on VHS.   In 5th grade, I used those super large 8" floppy disks and typed DOS commands on a black/green Mac computer in computer class.  I owned a walkman and loved to listen to tapes of my favorite songs while writing the bus to school.  In 8th grade, I learned to type on a typewriter.   My family had one of those heavy bag phones, complete with a cord that we used in the car.   I actually texted my friends using a beeper in high school (holla!).   And I was made fun of for walking to class across campus while chatting on my cellular phone (because nobody did this at first).

So, this is just one more thing to add to the archaicness of the pre-I-now-can-do-everything-on-the-internet days...

The other day, while cleaning out a closet, I found "my binders"...the infamous binders.  In college, I began gathering together magazine clippings of things I like into big binders.  I labeled my binders by topic: entertaining, decorating, organizing, kid ideas, baby ideas, recipes, etc.  Over time, I ended up gathering more than 8 binders of fun things I wanted to use in the future.


But, after several moves, including in and out of my first apartment and into my first home, I began to realize that I just couldn't keep collecting more ideas.  And, honestly, I needed to start cutting down on how many binders I had.  But it's hard to throw away great ideas! :)


After finding my binders again for the first time in two years the other day, I realized: I did Pinterest way before there was ever such a thing.  


The really great thing is, as wonderful as these ideas I originally clipped out are, there are even more on this new Pinterest website which allows me to "clip" ideas and save them for later - all without having to add another physical binder!  Ah, the magic of the internet: less physical paper!


So, goodbye binders!  You were nice when I needed you - but now I can do all of this online!  Thank goodness for the internet.  It's hard to believe how life has changed technologically since I was a kid!  I look forward to see what new things happen in the next 20 years.  Although, I'm still waiting for that Back to the Future hoverboard to be invented! 

Eating Update

Sunday, February 19, 2012

It hit me a few days ago that I haven't given an update in a while on how Bennett is doing these days.  In fact, it hit me, because over the course of several days, numerous friends have asked me the same question: "How is Bennett doing with his eating?"


I honestly haven't thought much about his eating in a while because things have been relatively well and relatively poorly at the same time.  

The good news is Bennett eats several meals per day and regularly communicates he *wants* to eat.  He most often asks for "nomnies" which is his best way of saying "m&m's" (which apparently sounds much like the word "money" to him, hence a "nomney").    Bennett's favorite food is "ought-gogs" (hot dogs) ...especially with "etch-up" (ketchup) and a drink of "appul joo" (apple juice).    Despite that he has favorite foods, he is fairly open to trying new foods, which is always pleasing for a mother of a toddler!


For these reasons, we feel like his eating is 100% better than it was a year ago.  We are very thankful to all of the work done with him at the Feeding Clinic to get us to this place.  We no longer utilize the Feeding Clinic protocol or force him to eat the foods we have predetermined for him.  But we do use television for distraction and use verbal feedback and rewards to encourage him to stay focused on eating.   




One of the greatest benefits to Bennett is his brother's appetite.
Bennett tends to want to eat when Oliver eats, especially when it comes to ice cream!
When Oliver is interested in a food, Bennett is at least willing to try it, which is wonderful.
 Bennett still "pockets" his food, it seems forgetting he has food hidden within his cheeks.  But we've found that if we ignore it, he will either eventually get distracted and eventually swallow it - or he will indicate he wants to simply spit it out.  We don't make a big deal about either one.

The bad news is, while Bennett is eating, he isn't eating enough.  Bennett is very thin.  His GI doctor isn't concerned.  But I am afraid his CF doctors may be alarmed when we see them next month.  Bennett hasn't lost weight but also he hasn't gained.  And, overall, he is skinner than he should be.

But our choice to increase his feeding tube is difficult as it may slow his process off eating orally.  I have had to simply stop worrying about it and just wait to see what the doctors suggest at our CF appointment.  I don't have alot of control in this area so I am trying to be patient.

My greatest desire is to see Bennett's eating skills continue to strengthen so that should we end up needing to put him on the feeding tube for longer amounts of time, these skills will not be totally lost.  Bennett has been on the cusp of losing or not gaining oral eating skills over the last two years.  So, the longer we can encourage him to eat by mouth, the better.


This picture just cracks me up.

The nice thing is Bennett has a sweet tooth.  So, we often find ourselves encouraging him to eat the high-caloric, high fat foods by rewarding him with a high-caloric, high fat dessert.  This works in our benefit: eat a bite of her french fry and you can have an M&M.  :)

Bennett likes to go fishing in his chocolate ice cream for lost M&Ms and gummi bears. 
Bennett is still fed through the g-tube at night.  But he is given only eight ounces of formula at night.  The main thing I want to continue to do is to protect Bennett's belief that eating is fun and enjoyable.  I want to do this so that, should he not feel like eating, he may have a habit of eating food simply because it's social and enjoyable to do so.  There is no better place to cultivate a love for food than our favorite local ice cream place, 3Spoons.

Such a silly boy!
Clearly, Bennett is eating and is enjoying it!  We'll see what the docs have to say in a few weeks.  For now, I'm delighted to see Bennett appreciate food.  And I'm, quite frankly, delighted to not even be worried about it right now!

Bennett's Brigade Tshirts

Tuesday, February 14, 2012

I am super excited about this year's Bennett's Brigade T-shirts!  They were designed by our friend Melissa and we think she did a great job!

 

This year's t-shirt is for $15 ($5 from all adult shirts will go to the Cystic Fibrosis Foundation).  However, anyone who donates $100 or more to Bennett's Brigade will get their tshirt free (so, if you're already donated $100, I'll be contacting you for your address)!

The t-shirts will be printed on the Gildan tshirt color called, "Antique Irish Green" with black and white ink on the front and white ink on the back.

The t-shirts come in Adult S, M, L and XL (let me know if you are interested in sizes XXL+).  The shirts also come in Youth sizes XS (2-4), S (6-8), M (10-12) and L (14-16).  Children's shirts will be printed on Gildan Irish Green.

Even though the CF Walk isn't until May 19, in order to get t-shirts ordered and mailed out in time, all orders must be received by April 19.

If anyone is interested in purchasing this year's Bennett's Brigade t-shirt, please email me at breckgamel at yahoo dot com with your size and address.  I will give you an address of where to send a check.


If you aren't interested in buying this year's Bennett's Brigade t-shirt but want to attend the CF Walk this year, just plan to wear whatever irish green shirt you have! :)

Grandma's Got CF??

Saturday, February 11, 2012

"Grandma's Got CF?"  This is the question my family has been asking each other since we heard this could be true.

Wait, could Bennett's 85 Year Old Great Grandmother Seriously Have Cystic Fibrosis??

You won't believe it but there is a very real possibility she does -
so much so, that her new Pulmonologist is a Cystic Fibrosis doctor...
that he has already ordered her the Vest...
that he has already placed her in the CF Registry...
that she's in the hospital right now doing a "tune-up" (what CFers call a hospitalization with a round of multiple IV antibiotics)...
that she's already cultured psuedomonas.

Here, before I go any further, let me explain some of the back story...

There is one thing I have never shared publicly about Bennett having Cystic Fibrosis.  It's probably one of the most disappointing things for our family that has come out of this disease.

And it is this:

Bennett's maternal great grandmother (whom we call "Grandmom") has never held, hugged or kissed Bennett.  And to do so would put his health at serious risk.

I honestly could have never dreamed something so unfortunate - for a great grandmother to never hold her great grandson - and for a great grandson to never be kissed by his great grandmother, even though both of them are alive and well.

Grandmom is the only living grandparent on my side of the family and has been for a very long time.  My family, myself included, are very close to her and love her tremendously.  So, it's beyond logical to me why something so ironic would happen to her and Bennett at nearly the exact same time, before either of them every met, forcing us to keep them physically away from each other.

Around the time of Bennett's birth and CF diagnosis two years ago, we learned that my grandmother, who had been most recently fighting lingering lung issues, had gained a diagnosis of her own.  She had cultured pseudomonas aeruginosa.

I knew as soon as I heard my mom share with me her diagnosis what that meant.  Since Bennett was still a newborn, I knew very little, at the time, about Cystic Fibrosis.  But I certainly knew that that was a bad word in the world of CF.

"Psuedomonas," as it is nicknamed, is a bacterial lung infection that typically affects only those who are immuno-compromised (the elderly) or those with damaged lung tissue (those with CF).  (It rarely affects healthy people.)  Psuedomonas is often highly resistant to antibiotics and can be fatal.

This is why Cystic Fibrosis patients are encouraged to stay 4 or more feet away from each other - to prevent transferring serious antibiotic resistant illnesses to each other.

For a long time, my grandmother's doctors tried to help her.  Everyone in our family believed that this was likely acquired because she was older and could potentially be eradicated if she got well.  But, unfortunately, she continued to suffer.

Personally, I was surprised to see her doctors did not give her TOBI and other medications I knew were on the market for treating psuedomonas.  But, I think, the doctors kept thinking this was all fairly normal stuff.

Eventually, my grandmother's doctor suggested that she visit the CF Pulmonologist near her home in Mississippi.  This was the very best thing she could have done.

After examining my Grandmother and ordering multiple tests, he became suspicious that she, too, could have Cystic Fibrosis.  At first, it was laughable.  How could Bennett's 85 year old great grandmother have a disease that so many learn they have in infancy - a disease that kills fifty percent of those who have it by half of her age??

But as time went on, and as the doctor kept looking closer, we all began believing that this might not be completely off base.  The truth is, more and more people are being diagnosed with Cystic Fibrosis later in life.  They are calling it "delayed CF". (see: http://www.msnbc.msn.com/id/37834646/ns/health-health_care/t/aging-cystic-fibrosis-more-adults-diagnosed/).

My grandmother's genetic testing shows she and Bennett share his 621+1G>T mutation.  She does not, however, have the other mutation Bennett has, which is DF508.  In fact, preliminary testing does not show what other mutation she may have.

The CF Pulmonologist has said that either my grandmother has a missing mutation that has not been identified.  Or, she has an unknown gene mutation that is causing the symptoms of Cystic Fibrosis to be expressed.

My grandmother could either have more extensive genetic testing done or none at all.  (Sweat tests are inconclusive due to the inability to get enough sweat.)  But the doctor has decided not to delay getting her care.

Since her symptoms are so classic of those with Cystic Fibrosis, the doctor put her in the hospital for a week to be given IV antibiotics (she will finish the rest of them at home).  The doctor has ordered her a vest and a nebulizer, which she will use multiple times daily.  And, the doctor, has placed her in the CF registry (something that happens with all CF patients) so that her case can be used for further research among doctors throughout the country.

Since we live two states away from each other and I am unable to visit her right now, I don't have pictures of my grandmother in the hospital (although I did hear over the phone the sound of her getting her "pat-pats," her hand percussion therapy given by a hospital respiratory therapist in order to break up the mucus in her lungs).

In fact, I haven't seen my grandmother in almost a year.  This is because we cannot bring Bennett to my grandmother's home (too much risk of infection).  And she can't come to our home (again, the risk is too high).  We have been able to see her briefly a few times since Bennett has been born.  But it's been in a public place and we've had to keep them a part.

I won't lie that my heart is broken over the fact that keeping my son well prevents his Great Grandmother from being more physically involved in his life.  And my heart aches to know my grandmother is fighting for her ability to breathe while I am unable to travel to see her because I have my own little guy's breathing issues to care for.

But, all is not lost.  As a family, we have decided to make way for Bennett and Grandmom to see each other, if only for a short time and if only from several feet away (we've once met at restaurant and once at a mall).  Our once often family gatherings have significantly lessened.  But we will continue to find safe ways to make it happen.  (Maybe as Bennett gets older and can be willing to wear a face mask, Grandmom and Bennett can be in each other's presence more safely.)

Nonetheless, I'm so proud of my grandmother for being the fighter that she is.  She now has a connection to Bennett that none of us have: she actually knows what Bennett is going through! (Can't wait to see Grandmom wearing her new Vest!)

And by golly, if my grandmother is going to have to endure life like a CF patient, I'd love for her to be officially diagnosed one...likely the oldest person with CF diagnosed ever, I'm sure!  But, we'll see.

Nonetheless, my sister made the joke that this year at our annual Cystic Fibrosis 5K Walk fundraiser, we might not just be walking for Bennett.  This year, we might just be walking for Great Grandma too! :)

Bennett's Great Strides Video 2012

Wednesday, February 8, 2012

Here it is...
Bennett's Great Strides Video for our Great Strides for Cystic Fibrosis Walk 2012

It's something I both look forward to and dread at the same time each year: my effort to tell Bennett's story through pictures.



Help us find a cure for Bennett: http://www.cff.org/Great_Strides/bennettsbrigade

To share this video with others, send them this link: http://youtu.be/KS2NdJZyXZs

(You can see the videos we did for 2011 and 2010 here.)

CF Research in Dallas

Monday, February 6, 2012


Last week, I had a wonderful opportunity to attend an event put on by our local Cystic Fibrosis Foundation chapter.  I was most interested in attending the event because it was going to give me an opportunity to see the CF research in real life!


At the beginning of the meeting, Bennett's CF doctor, Dr. Cannon, spoke about her current research at University of Texas' Southwestern Medical Center.  I *love* listening to Dr. Cannon speak as she is incredibly knowledgeable of the most current research.  This is one of the reasons we changed Bennett's care to Children's Medical Center in Dallas.  When Brian and I heard Dr. Cannon speak about a year ago, we were hooked and wanted her to care for our child too!


While at the event, it was fun to meet a CF mom I keep in touch with via Facebook.  Susan has a 16 month old daughter who has CF.

After a short presentation, we were off for a tour of the lab to find out what research is being done to help find a cure for Bennett.


We got to see frozen human cells that the researchers use to do experiments on.  These petri dishes are kept at a chilly -80 degrees!


Zemfira Karamysheva, a researcher in the lab, spent about 30 minutes explaining to us about her research, which she really enjoys working on.  She works with amino acids and the CFTR gene.  Unfortunately, I have no idea anything else about what she does.  Between my limited understanding of microbiology and her thick Russian accent, this was as far as I got. :)  Even still, the message I understood most clearly: she is working to better understand what isn't working in my son's body.


One of my most favorite opportunities was getting to watch a really cool 3-D moving image of the CFTR gene, which is where the Cystic Fibrosis mutation has gone wrong.  It is hard to see but the tiny red dot next to the yellow spiral is the DF508 CF mutated gene.  The scientist we worked with tried to use it to explain why the DF508 gene is to difficult to get to - because it's buried in the CFTR gene (we joked about how the white part of the gene is like the brain and the colored spirals are like the spine - both are difficult to access but it's certainly worse for a gene's malfunction to be located within it, rather than in the spiral things where it can be more accessible to fixing).  I also learned more about the letters at the top of the screen.  the DF508 is located within the NBD1 area (the white part).  Bennett's other mutated gene (Cystic Fibrosis patients have CF because they have two mutated genes) is 621+1G>T.  This is gene is located within the "R" (the purple part).  While this information isn't necessarily important to me, it is important to the scientists as they are trying to locate and understand each of the 1800 genes in order to fix them.


I found Dr. Andrey Karamyshev's work to be very interesting.  He is an assistant professor at the University of Texas Southwestern Medical Center in Dallas whose research interests are the CFTR gene and Cystic Fibrosis.  He explained there are about 20 labs in the US doing research on CF at any given time.  Dr. Karamyshev explained that scientists working on cells typically use cancer cells because they quickly regenerate, unlike healthy human cells.  I guess there's is one reason I can be thankful for cancer.


Dr. Karamyshev recently released a study on the Proteins That Interact With CFTR During Translation, which he presented at the North American Cystic Fibrosis National Conference two years ago.  I didn't try to have him explained what he learned.


I had hoped my reading his conclusions would help explain it in layman's terms later.  It didn't. :)


The reality was I walked away with very little information I understood.  But that doesn't mean I walked away with little information.  Instead, I left the CF event so excited to see real life research to find a cure for Cystic Fibrosis going on in our backyard.  I am so encouraged that people go to work every day working with ridiculously complicated subjects, all in hopes of figuring out how to solve why the CF genes aren't working properly.  Next year, though, I'm bringing Brian (who has a bachelor's in microbiology).  Not only do I think he would have *loved* to have discussed this stuff with the researchers, I know next year I might have a chance of his translating for me what the heck they are talking about. :)

Oliver's Love for Oklahoma

Sunday, February 5, 2012

Oliver has one state that he LOVES...

It's not the state he was born in...


It's not the state he lives in...


It's not the state that his parents' went to college (although, we've been working to raise him as a University of Missouri fan for years).


No, Oliver *loves* Oklahoma.


Why, you might ask?  Because he believes Oklahoma the "promise land" for tornadoes.  Seriously.

Oliver loves the TV show Stormchasers where his favorite stormchaser Reed Timmer is from.  For whatever reason, Oliver seems to believe that tornadoes are happening all day, every day in Oklahoma.  He dreams of going there.  He can't understand why we can't drive there.  This is why we get questions like, "Mom, why didn't you put our house in Oklahoma?" and "Why is it taking so long for me to get big enough to go to Oklahoma?"  (I promised him that when he turns 18, he can go chase tornadoes, if he wants. :))


Unfortunately, his four-year-old mind doesn't understand that tornadoes do, in fact, come to Texas too (although, he rightfully complains, never to his part of Texas). Nonetheless, I'm afraid that we may have a Oklahoma Sooners fan on our hands if we're not careful.


Oliver's love for tornadoes has translated to an interest in the United States.   He can recognize about four states right now.


But there is only one state that he regularly shapes with bites out of food.  Yep, you got it:  Oklahoma.