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Will the helicopters return in time for us too?

Tuesday, January 31, 2012


The cheers are reverberating throughout the internet.  My Facebook page is filled with chatter among my friends who have children with Cystic Fibrosis.  Everyone is going nuts:

The FDA approved Kalydeco, a drug previously known at VX-770.  So many in our CF community are ecstatic!   The day felt like it would never come but it is here.  For many, this is the hope they have been waiting for for their children.   

As of today, those with Cystic Fibrosis ages 6 and up who have one copy of the G551D mutation gene now have access to a pill that will *dramatically* decrease their Cystic Fibrosis symptoms and has the opportunity to significantly extend their life.  It is not a cure.   But it's as close to a cure for Cystic Fibrosis at we have ever seen.

But there's a catch.  And it's a big one, especially for me.  This miracle drug will help only 4% of those with Cystic Fibrosis.  And Bennett is not in that 4%.

Today, I felt the reactions of the CF mothers whose children will be helped with this drug.  So many of them lit up their Facebook pages with comments like, "What do you do when the FDA approves a drug designed to treat the underlying cause of your child's rare genetic illness?  You scream and cry and laugh!" and "I'm shaking, crying and jumping for joy. Glasses raised for my child getting the chance to live a NORMAL life!"

Oh, their joy!  I can't even imagine what I would feel like to be in their situation - if I found out Bennett had the opportunity to slow down his disease and extend his life.  What an amazing feeling it must be!!

But, as I read these comments and felt the excitement filling up the hearts of our little CF community, I found myself sort of sullen and withdrawn.

Why, I wondered, would I feel withdrawn and sullen on such a wonderful day as this - the day when so many of my friend's children are getting a chance at living their lives without this devastating disease?  Wouldn't I be dancing in the street and overjoyed for them as well??  Don't I, being a mother with a child with CF, most understand the desperation and immense joy they feel to have something like this for their child?

And then an image came to me.

I can imagine this must be what it feels like to be with a group of people stranded on top of one's house while the flood waters rise around us.  Everyone is in it together.  Everyone is wet, cold and frightened.  There is no guarantee we will be found.  But we try to hope.

In an effort to be found, we call out together and chant, "Help us!  We need help!"  We cry with each other knowing that we may not be saved in time.

And then, in the distance, we see a helicopter!  Someone see us!  They are coming!  We all cheer with anticipation.  Hooray!  We will be saved!   We watch the helicopter approach us, each of us begins to dream what it will be like once we are saved.

But as the helicopter nears, we realize, there isn't room for all of us.  Not yet.  Not now.  And so, only a few of us get to aboard the helicopter.  We pat the backs of those who get to get on - and we tell them how excited we are for them.

But there is an emptiness that begins to fill in our hearts:  We wish we could go too.

The good news is that we have been found and may soon be rescued.  But the bad news is some of us must wait much longer to be saved.  Those of us who are left behind much watch the helicopter take off again, without us.

We each silently wonder, will the helicopter return in enough time to save us too?

I am so very happy about this drug.  The work of the Cystic Fibrosis Foundation is amazing and this drug is just proof that we are on the right path to finding a cure.  I know that there are other drugs in the pipeline that may hold the key to helping Bennett one day in the future.

But I must be honest that in the midst of the excitement, I can feel sort of disappointed that I'm not one of those mothers clicking the keys on my computer and placing on my Facebook status that my baby has a chance at a normal life, too.

For now, my son's disease will continue to wreak havoc on his body while we wait.  And he is certainly not alone.  This is the case for the 96% of those with Cystic Fibrosis who must wait a bit longer for help to come.

But I also realize that I can't focus today on how the helicopter just came and left - on the fact that this drug (as wonderful as it is) won't help Bennett.  First, because I don't want to take away from other's joy.  But secondly, and most importantly, because...


I must remember that I'm not necessarily waiting on a helicopter (or a pill) at all.  My trust and hope is in God.  


I must remember that God is a good God.  He is a God who will leave 99 sheep to go find that 1 lost sheep.  God will not forget Bennett or my cries to him on behalf of Bennett.

I must remember, even in my disappointment, that whether a pill comes in enough time for him or not, God has Bennett in his hands.  God will one day heal him too.  Until then, I choose to patiently wait.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13


 

22 Responses to “Will the helicopters return in time for us too?”

  1. So sweet, you are a fantastic mom.

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  2. I am humbled and encouraged by your strength, maturity, perspective and honesty. Thank you.

    I do pray that the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. He will not leave you nor forsake you. For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

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  3. My dear friend Breck,

    First of all, my heart breaks that this drug won't help Bennett. Even though there are a lot of excited people out there, there are even more who are in your situation, which is sadly unfortunate. I am proud of how you are choosing to handle it, but I think it's certainly okay to mourn the fact that you can't get on the helicopter right now.

    But, like you said, we have a good and wonderful God who will not leave you or Bennett behind. I think God has bigger and better plans for us than we can ever imagine. The hard part is having the patience and faith to see it all unfold. I know you're a lot like me - the patience part is really hard, especially since you are a strong mom who fights for her children. I just pray that God gives you the strength and patience for God to help Bennett.

    If you don't mind, can you share why this drug will only help a small percentage of those with CF? And, why is Bennett not in the 4%?

    Hang in there, friend!

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  4. Your post made me cry! =( I have felt the excitement of today and yet know the reality that we have a beast that is ready and waiting to destroy our little precious people. =0 Many of these thoughts did cross my mind today. Will it be soon enough to help my Rachel? I pray and hope so. As I reflected today, I remembered that God does not forsake His children. E.V.E.R!!! I have taken comfort in that fact today.

    Do you care if I share your blog as a guest writer on my blog? (Not sure that I even know how yet, but would love to as I am in the throws of fundraising!) These are some of the exact emotions that I went through today. Joy, but a bit of sadness. I think you nailed it with the emotional toil of "waiting" for us mama's. I kept looking at Rachel today thinking how would her life and our lives change if CF was only a pill and even more so...the hope of NORMAL LIFE EXPECTANCY?!! I couldn't even let me heart or mind remotely go there, because the pang of sadness that we are not there yet! Closer, but still so far away.

    Our hearts wait patiently knowing that God has a plan and purpose for our lives and our sweet babies! I will encourage you on that rooftop to rejoice always and when we have that working medication for our little ones...we will still rejoice that God is good and that He heard the cries of our hearts!

    Love to you friend!

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  5. A perfect analogy. We are all in this together. As one of the first lucky passengers, I want to reassure you that the helicopter is coming back...I personally promise to remind the pilot CONSTANTLY about it. It is truly a miracle, but the way this is happening, one mutation at a time, really sucks. Why couldn't they have shown up with a cruise ship instead of a helicopter? So we could all pile in and toast champagn together?? We will never stop working to reach you.

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  6. Your post put this news into perspective perfectly - Thank You! Images of the other 96% of us standing together waiting for the helicopter to come keep popping in my head and I will never give up hoping and praying that for our children - we will not be forgotten.

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  7. Your approach is admirable for sure, but realize that God's solution may not be planned for this life, but for the next...and it's okay, too. Sometimes God's answer to our prayers is, "No." Focus not on this earthly life, but on the eternal life of the soul, only then can you find true peace...for it was God that made him the way he is in the first place. The helicopter won't make it back in time for everyone. I know this to be true because I've already lost my two children to this disease.

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    1. I'm very sorry to hear about your 2 children. I don't think there should ever be a time for a mother to give up. Of course she will pray, scream, beg for a cure to come to all CF'ers. I see nothing wrong with that.

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  8. I'm shocked at your response. This is such exciting news!!! You make it sound like it's all about you, not your Bennett. I am 52 years old with cf and my sister is 53 with cf. My sister, mother and I REJOICED when we heard the news last night! My sister and I don't have the G551D mutation but we know it will help many cf patients. In fact, my sister, has helped in the breakthrough cuz she was able to do studies most of her life to discover this new pill. She is not BITTER! She is grateful it can help others! I have tried to do studies and was not able cuz my cf was not bad enough (thank God). In God's PERFECT time, He will provide a new pill for the rest of us. And, now it will happen soon because of this new breakthrough! I am so happy for the ones it will help! We could all act as selfish as you if we wanted to. Thank God your little Bennett has only waited a couple of years. My sister and I have waited 50+ years! We don't mind waiting another 50 years!!! We can choose to be powerful or pitiful. We can't choose both. SO, I CHOOSE POWERFUL!!! You don't sound very POWERFUL! I'll pray for you and Bennett. I've always prayed for a cure for the cf patients that are a whole lot sicker than me first. God has answered my prayers, once again. God bless you!

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    1. Wow, I am equally shocked by your response to Breck! Y.O.U A.R.E. 52!!!!! While I appreciate you and your sisters help with trails. It is our hope and prayer that our little children will someday REACH THAT AGE!!!!

      Knowing that most CFer's currently don't make it out of their 20's?? No disrespect to you, but you yourself said that your CF was "not bad enough". Breck, along with many of us have fought for life and breath from day one! That, is "bad enough", and the thought of not knowing when it will change is hard.

      I don't think Breck is being selfish, but rather hopeful and unfortunately has become weary from the fight. She has fought more in a couple of years than many have in decades!!

      Yes, we are happy. Yes we are excited for the breakthrough, but to know that CF is the same today as it was yesterday for our little ones is HARD! I appreciate Breck sharing this amazing illustration. THANK YOU!

      BRECK, my friend, I SEE YOUR POWER!! MAY THE LORD CONTINUE TO STRENGTHEN YOU!!!

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    2. I do not have CF but do have dear friends with it. In our local community we have had 3 children with CF (all under 5) die this last year. I'm sorry but I do not think it is selfish or bitter to feel the way the author does. In fact I feel it is honest and raw. How easy for someone to judge her and her feelings, but you know what? They are HERS! Let her feel them. Like she said, she doesn't want the helicopter to NOT take the others, she is just hoping for it's return. What is wrong with that? I am so happy to hear that your CF is "not bad enough" and that you have lived 50+ years. I do have to worry about all those children who don't get that chance. Clearly everything is in God's hands and His healing isn't always done on this earth. That doesn't mean a mother should just go quietly into the night. A mother should ALWAYS fight and long, and hope and wish for her child. I commend her for being honest about her feelings! Lets not be so judgmental.

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  9. I too am waiting beside you for that helicopter, holding the hands of my two CF boys. I am thankful that today there was a helicopter and soon there will be the harness that is needed to allow my boys climb up and use that same helicopter too. Just remember there are many of us still standing right alongside of you and together we are all hoping and praying.

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  10. Dear Anonymous 3:36 PM - you are SO obviously not a Mother of a CF child. This post is beautiful, honest and perfect - how dare you say it was selfish and you'll pray for them...prayers from judgmental people are so not necessary. I as a CF Mom feel the same pain (and jubilation) as Breck. I'm thankful she can verbalize it for us. If you can't post anything nice then don't post anything at all... I'm pissed off enough already - please don't make me angrier...

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  11. Every feeling you have is honest, valid and comes from a place of pure love for Bennett. As an adult who has lost a sister and many friends waiting for this drug to come, yesterday was a bittersweet day for me too...

    And yet...I am so incredibly happy for that 4% and I eagerly wait for the day in the VERY NEAR FUTURE when this kind of drug will be released for the other 96%. I'm confident that your little one will get a drug just like this that will slow down the progression of CF until the absolute cure is found.

    Thank you for sharing your honest perspective...it's one that many people feel, but perhaps aren't able to share so openly. Until then, have faith, be peaceful and keep being a wonderful mother to Bennett. Your turn to ride the helicopter is coming. It will make it back in time.

    Peaceful things and lots of love,

    Josh from Joshland

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  12. To "Anonymous Feb 1, 2012 03:36 PM", let's remember to not be judgmental and instead focus on being supportive of everyone who is affected in some way by this horrible disease. We should applaud Breck for sharing her innermost thoughts and feelings about how CF has impacted her family. We should commend her for deciding to keep her blog public so others can benefit from it. We should appreciate her willingness to be honest, realizing that she is providing comfort to others who are experiencing the same thing. It's normal -- and perfectly OK -- for Breck to feel a myriad of emotions, from hope to despair. People relate to honesty, and reading her commentary is helpful and therapeutic to those struggling with CF in some way. And, let's keep in mind that everyone is entitled to their opinion -- Breck to hers and you to yours. But, I am curious: How do you think you've made Breck feel with your post? Are you trying to make her feel worse...because clearly she's already experiencing a lot of pain? Why would you want to do that? My thought is that you know your comments are hurtful, which is why you choose to post them anonymously. Cheers to Breck -- don't for one second hesitate to stop posting exactly what you are thinking and feeling. You are a brave, shining example!

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  13. Thanks so much for your blog Breck. I love reading what you write and I love your heart.

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  14. Hi Breck, I found your blog through your profile on CysticLife. I am soaking you up right now. Thanks so much for writing from your heart and echoing so many of my lonely fears and thoughts. You are right, our hope is in Him. I have to constantly remind myself of that. Thank you also for sharing your feeding struggles with your son. My son is in the thick of some feeding issues and it's just so nice to know I'm not alone. :) Thank you, keep writing, I'll be reading! ;)

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  15. Breck, it warms my heart to read your post and know that you can put into words the thoughts that I want to shout to everyone I know. My grandaughter,Savannah suffers from this awful disease. I know from the visits to the hospital to see the nurses trying to put a pic line in her arms and then after thinking its in and a few hours later the pic line wins the battle and then they try again and again and then fail. Seeing your grandchild having to be stuck with needles in her frail arm and seeing the pain on her mother's face and wishing you could take the place of both of them. The Miracle Pill comes out and after much begging from her doctor he decides it won't hurt to try. We were all so excited as she began to feel better. Ater 28 days her breathing increased by 11% and salt chorline declined by 30 points. When she tried to get the second bottle the insurance company declined to pay. You can imagine how our hearts broke as did alot of people who have walked,fought and donated to this cause and because they said she had the wrong mutation she was denied. This child is 14 and has fought hard everyday with breathing treatments,vest,pills and more pills as many other children have. I just cannot believe she would be denied a medication that has been a God send. Sure Vertex will send her the medicine tonight if she sends a check for $25,000. Next month it will be the same thing. Her doctor sent in repeated letters stating with numbers how in 28 days she was better than she has been in three years and still she has been denied. I too hope they realize if it saves only one person then it will not be in vain. I will pray for your son along with all the children and mothers as I know that God does answer prayer and he will work this out for all of us in His time..Keep writing as it inspires me and I know it does others too.

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  16. I appreciate your honesty Breck. I am in Australia and we are in a position where some people can access the drug and some can't. I am actually paying the huge dollars that Vertex demands for it for my child.
    This drug creates a point of difference: those with the G551D gene and those without, those who can access it because they are very sick (if you are below 40% FEV1 you can get in Australia for free) and those who are not sick enough, those who can afford to buy it and those who cannot afford to but it. This point of difference makes many people unhappy, including myself. I actually feel GUILTY that I can access an effective drug treatment for my child but there are so many people out there who cannot.
    I try and remember that this drug is the FIRST of many drug treatments that will treat the condition at a cellular level. It is normal to feel angry and envious of someone else's ability to access an effective drug therapy. It is a desperate situation.

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  17. I am one who thinks the helicopter won't be there in time. FEV1 of 26% right now DF508 plus a splice site mutation that Kalydeco may or may not help in addition to maybe or maybe not having access to it once it's approved by the government, because I don't have the right mutation.

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  18. Breck, Im speaking at a fundraiser for the CFF and was wondering if you mind if I use your blog in my speech? The helicopter analogy just hits the nail on the head and makes me cry everytime I read it, what better way to get people to donate more to our cause?? :)Didnt want to use it without your permission :)
    Cayla

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    1. Absolutely, Cayla! I'm honored that you would ask! Please use any part of my blog that you find helpful for your speech. Thank you for all that you are doing to raise money for the Cystic Fibrosis Foundation! If you happen to video your speech and put online, I'd love to see it! Thank you for your sweet words!! :) Good luck!!!!

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