Tuesday, February 28, 2012

Life Post-Miracle

This entry is not about science.  My heart is writing this time.  As amazing as the chemistry behind Kalydeco is…it just can’t describe the perspective on life that this experience has given me.   I’m sure that everyone can relate to feeling desperate in their own way.  I mean, maybe there has been a time that you sat down to pray to God and said, “If you just give me this one thing, I will never ask for anything ever again.”  Something so important to you that you would gladly give everything else you possess, just to keep that one thing.   Let my child be alive and healthy. 

When your baby suffers from cystic fibrosis, you never have to think when you blow out those birthday candles, or when you see a shooting star, or when you sit down to pray.  The wish is always the same.  Please just let my baby breathe and live and grow.  Please just ease his suffering and allow him to have the life he deserves.  Please don’t make me attend my child’s funeral.  Please let there be a cure for cystic fibrosis. 

Everyone’s experience with cystic fibrosis is unique.  We found out when Brady was 3 weeks old via a positive newborn screen and subsequent genetic panel, which identified his mutations.  There are chunks of time from Brady’s infancy that I seriously don’t remember…or I’ve somehow shoved that pain down into the furthest depths of my mind.  The script I had written for my life got thrown in the trash and I am the type of person that likes to be in charge.  Feeling so out of control was mind altering for me.  I’m not trying to claim that it was in any way harder for me than any other person who receives the same news…I just want to express that it nearly made me crazy.  I had an extremely hard time accepting the diagnosis in the beginning and I became very isolated for about 9 months.  I did not want to talk about it at all.  I don’t think I left the house much.  It was a very dark place for me mentally.  Especially since every day that went by I fell deeper and deeper in love with Brady.  I think the FEAR aspect of cystic fibrosis is what really altered my personality the most.  I hope my friends would back me up when I say that I’m typically pretty gutsy.  But this…this had me paralyzed with fear.  In the midst of this time of fear and depression, I read about VX-770 for the first time.  I tried my best to examine the data Vertex presented objectively, and to manage my expectations, but you can imagine that I grasped onto this concept of “fixing” Brady’s CF with both hands.  Before I had even truly come to terms with Brady’s CF diagnosis, I had a glimmer of hope offering me a sort of “way out” of what felt like a horrible nightmare.    Right then I wrote the new script for my life: Be as aggressive as we possibly can with treatment to preserve Brady’s lung function until this drug becomes available, and then give him the chance to live a long healthy life.  That has been my singular focus.  I know it is more common these days, but when Brady was born it wasn’t typical protocol to put infants on Pulmozyme at 6 mo., but we requested to do it and his Dr. agreed.  We requested Hypertonic Saline at 20 months, also in the absence of lung problems, to further assist his mucociliary clearance and PREVENT lung issues.  The infant trial was going on at that point, and there was no clinical data for use under age 6.  We had to do the first treatment in the office under Brady’s Dr.’s supervision to make sure he tolerated it well, and then continued our treatment schedule at home. 

AND NOW he has KALYDECO!!  Every day I hear more great personal stories about this medicine changing lives.  Once again, not a day goes by that we don’t pay special attention to how fortunate we are to have Kalydeco.  
I am 34 years old and THIS is my first tattoo!  The Kalydeco molecule, the words "Honor the Gift," and Blue Lightening!  A day will never pass that I don't think about this gift!

I remember attending a parent education event put on by my son’s clinic when he was about 2 years old and having an argument with the VEST representative.  He told me that Brady would need the VEST for the rest of his life and I disagreed with him.  Of course, I went on to explain to him how this new investigational drug was going to take away the need for his VEST one day.  This was just one of many, “oh you poor desperate crazy mommy” looks I received before VX-770 started getting some press. 

With every treatment that we do, for a split second I think, “one down.”  I have always envisioned a finish line.  Because I am such a visual person, I began saving the little vials that hold breathing treatments.  Each little vial represents a chunk of time that Brady dedicated to caring for his lungs.  Here is one of many vases I have filled with these little babies.  I think it is an interesting conversation piece.  My husband thinks that if I collect one more garbage bag full of these, I might be a HOARDER. 

I don't normally keep it in the middle of the room like this, I just wanted to show the size of the vase!  I use it to raise extra money at my CFF events by having people guess how many vials are inside!


The reason I wanted to tell you all my quirks is to show how surreal these last few weeks have been for me.  Having this dream come true is the wildest thing I’ve ever experienced.  This has been the focus of my life since I heard the words “cystic fibrosis.”  That wish to end all others arrived at my doorstep. Brady is breathing easy. Something has shifted in me.  I see the day coming that my collection of vials might be complete...
My life is divided up into three sections now: Before CF, Pre-Kalydeco, and Post-Kalydeco. 

Still, each morning when I sit down to Facebook with my coffee, I see another mother describing her child waking up gasping for air, or entering the hospital, or struggling to grow.  Then I post my Kalydeco update on Brady.  There is a part of me that says, “Can you imagine how your post sounds to that mother?  She must wish I would just shut the hell up.”  Sometimes Brock threatens to take my computer away from me because I’m so often sitting in front of it crying.  Sometimes happy, more often sad.  Since Brady is in the 4% of patients with the coveted G551D mutation, there are 96% still on the sidelines just watching this miracle take place.  A day does not pass that I’m not incredibly grateful for this gift we have been given.  I'm obligated to share.  I seriously feel it is my DUTY to bring as much attention as we can to this “success story,” particularly since it was fueled 100% by the Cystic Fibrosis Foundation and those who support them.  We feel more motivated than ever to fundraise for the CFF.  For the 3rd year, my husband and I are hosting a golf tournament at the Coeur d’ Alene Resort on May 11th.  http://onparforacure.weebly.com/
Brady loves to be the star of the golf tournament!


We also lead a team of walkers, Brady’s Buddies, in Great Strides in Spokane, WA on June 2nd.  http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7873&idUser=286719

With this gift comes the responsibility to make sure that the other 96% feel hopeful.  Every parent should be hopeful because those new drugs are just around the corner.   I know there are many patients and parents that have been disappointed by promising clinical trials in the past and they are hesitant to believe this can be true.  My hope is that you open your heart up again because this time it is REAL. 

To summarize my feelings right now, I would say everything is coming up roses…

-I cherish every moment with Brady and every breath that he takes.

-I live every day in gratitude.

-I will work to honor the gift of my own health and teach Brady how important it is to nurture his health as he grows up.

-Nothing can bring me down—I just don’t get upset over life’s small issues anymore.  Everything seems sunny when bathed in the sweet light of a miracle. 

-I never dreamed I could feel this free and light-hearted again.

-I will work to repay the Cystic Fibrosis Foundation for this gift until the fear of CF has been lifted FOR ALL!

What a rollercoaster ride this has been.  I don't remember applying for this job, but I am certainly honored to have it.  Sharing Brady's story is truly my privilege.  To reference a great blog by a fellow CF mama, I’m not sure why Brady was selected as one of those first passengers on the helicopter ride to safety.  http://bennettgamel.blogspot.com/2012_01_01_archive.html
But I do know that I will not let that pilot forget that others are waiting.  Ideally, we will circle back, through those rising flood waters with a cruise ship…with capacity for everyone, rather than another small helicopter.  That way, there will be plenty of champagne ready for us to all celebrate a victory over CF together!! 

Thank you to everyone who works so hard to support the CFF.  I see how many people are working to raise money for Great Strides and other events right now!  I know you have your own personal reasons for supporting the CFF, but it is still important to say thank you.  Thank you for doing what you do, because for Brady-- the outcome is real and it is miraculous.  Those millions of dollars given to the CFF for research have manifested themselves into an extremely expensive bottle of pills in my kitchen.  Those pills are changing our lives.  Thank you.  Good luck to everyone fundraising this year!  The ball is rolling!  We just have to keep pushing forward!  I hope that you look at my posts and go ahead and curse me a little if you like ;)  I can handle it, but then get out there and do your best to support the CFF because you see that same healthy future for yourself or your child!  Brady is living breathing PROOF that they are on the right track, and I'm telling you it is possible to turn those dollars and that determination into something spectacular.  We repeat the sweat test on Brady tomorrow morning.  Baseline number was 105, what will his new number be??  Updates to come on Brady's new health stats compared to his baseline stats!  We are having another blood draw this Friday so we can discuss the results with Brady's CF Doc at our March 8th appt.  We also plan to discuss tapering Brady off of some of breathing treatments at this appointment.  Sooooooooo exciting!!


9 comments:

  1. God Bless you for sharing your optimism and excitement. Our turn will come in time and I am so happy to rejoice with you!

    Love from another CF Mom!
    Kathleen from Calgary

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  2. Excited to hear what the new sweat test number is!! I'm SO HAPPY for you and your family :)

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  3. Rebecca, you could have been writing my story. My son, Caleb, is 2yrs old and we, too, learned of his diagnosis after a newborn screeing. He has one copy deltaF508 and one copy r117h. We CAN'T WAIT for this summer's clinical trials to begin. Thank you for sharing your experiences. We'll be following Brady's progress very closely! My blog is doshlebin.blogspot.com if you want to follow ours. Congratulations on your miracle! Can't wait to hear the sweat test results this afternoon!

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    1. Thanks for reading Erin! I'm so glad they opened up the trial to all gating mutations and R117H! I can't wait to see those results! I will follow your blog, thanks for sharing! Let me say that it just gets more and more surreal! Brace yourself!

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  4. Thank you for sharing Rebecca! Although I am in the 96% who is severely jealous of your son's miracle, I would never curse you! YOU give the rest of us SO much hope, and reading your story puts my life back into perspective when I start to doubt my future. Your writing is so optimistic, makes me smile, and makes me cry! I excitedly showed my bio-major friends your tattoo and they thought it was WICKED cool (excuse my Boston slang). And I really love the vase of vials ! I used mine to make a sweet mask for halloween!
    you can see it here: http://ihavecfsowhat.blogspot.com/2010/10/cf-and-who-i-am.html

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    1. That is really RAD Lauren! I do read your blog, but I had not seen this entry! I've spent a lot of time trying to conjure up the amazing art project I will do with the vials one day...problem is that art isn't my strong suit! Anyway, thank you for reading. I truly am so optimistic about upcoming treatments! If they are anything like Kalydeco, they will be worth the wait and blow your mind. Cheers to HOPE!

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  5. Hey Rebecca, I just saw this story and I was wondering if you could blog about what it means for the search for the drug for DF508, the article explained it a little bit but I was wondering if you heard more about it!


    http://news.harvard.edu/gazette/story/2012/04/big-advance-against-cystic-fibrosis/

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    1. I will definitely do a blog on this when more information becomes available! Sounds really promising!

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  6. Hello, I ran across your foot tattoo when googling images of Kalydeco, I LOVE IT. I just started a trial to expand appliication of K, I am in the Nof1 trial for people who have partially preserved channel function. I started a blog for it and would like to know if I can use the image of your foot on my blog post, I love it, i also have a foot tattoo but may just need another one! http://www.bignewbreath.blogspot.com/

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