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Cure vs. Control?

This last week the CFF had a conference where they detailed the expected plan of action for the next few years.  It was amazing!  After getting over the fact that the new medication would not be ready for us to use tomorrow as I somehow hoped it would be…the joy that the finish line is in sight is HUGE!

Research and Development

Research and Development

First, I must clear up a questions and concept that many have as relates to a cure vs control.  While these new “super drugs” will certainly add decades to Rachel’s life and the lives of those suffering with Cystic Fibrosis, it will NOT take CF from her.  So it will be a control, rather than the “cure” (since the word cure means free of).  She will ALWAYS have CF and she will always have issues, even with these drugs, that are related to CF.  Kind of like insulin is to a diabetic.  They still have to be careful, but the insulin extends and improves diabetics lives significantly.  Also, as explained by our pulmonologist, it may be quite some time before the studies are completed that would allow for CF people to safely take away some of the inhaled nebulizer treatments and lung percussion that is the basis of care currently.  HOWEVER, for me the thought of doing all that we currently do each and every day AND KNOWING THAT IT WOULD ADD YEARS IS AWESOME!  I happily (okay, not always happily, but with joy) do Rachel’s treatments now, but it is hard some days knowing that despite these great measures…her lungs are STILL being destroyed every. single. day!  I would be beyond thrilled to do the same amount of work and know that it would give her a more normal life expectancy!   I am so excited for the “control” to get to her!

Here are a few highlights from the conference.

~Road map to the finish line of a cure is in place!

~Kalydeco will work for other mutations (so instead of helping 4% the reality is more like 18%)

~They have several arms of research with the combination study of 770 and 880, plus a back up plan of a drug called 661 just in case the first two don’t work as well as they expect.

~The CFF (Cystic Fibrosis Foundation) is dumping every dollar from the royalties of other drugs right back into these new drugs.  CF drugs are expensive!  So, I guess for once, I am glad that they are and that all of that money (royalties off of 80k plus for each CFer would have to add up quickly) is going back toward developing these new life-saving drugs!

~Clinical evidence shows that restoration levels are at 25-30%.  In reality, only a tiny percent is needed to change the sodium content of the cells to a more normal status…so this 25% is HUGE SUCESS!!!

~By 2016 Expected combination drug approved affecting and restoring up to 90% of the CF population to a more normal CFTR (cystic fibrosis transmembrane conductance regulator, responsible for the main defect of CF).  So while that is still 4 years away…it is a reality that is CLOSE!!

~The speakers at the conference stated, “Those with CF start planning your 401K’s!!!!!”

~AND- currently where 30 year olds often needed lung transplants…be prepared to be going strong at 60…running road races with your own lungs!

HOW COOL IS THAT!!  I tell you after reading these comments…let me tell you this mama is pumped to kick CF!  I feel like we are on the last mile of a long marathon.  Now, I have never run a marathon, but have run some long distances and often times that last part takes the guts and strength of a champion to finish well.  I feel like that with CF.  I am praying desperately for the money to come in to keep these drugs and trials on track.  Rachel has had a very good run of health the last year or so…but as we know with CF, things can change with little warning and start heading south quickly.  The deep prayer of my heart is that the Lord would keep Rachel well long enough to truly benefit from these drugs.  The higher her lung function when she is able to get these drugs…the better she will be.  These drugs stop the progress of CF, but can not undo lung damage incurred!

So, as much as I am humbled to ask…I continue to beg and plead for Rachel’s life and future.  4 years is a short amount of time, but when fighting for one’s child- it can seem like an eternity!  We need these new drugs.  The money given will literally CHANGE THE FUTURE FOR RACHEL!  It is hard for me to conceive that money has the power to change a life…but in this case, it truly does.  Is it easy for me to ask strangers and friends to come alongside and help us?  Um..NO!!  It is difficult, and humbling in a way that I can not explain…but it also comes with a knowledge that if I don’t ask others…it won’t happen, or more to the point, it will happen only too late to make a difference for Rachel’s life!  As a mom, that thought hurts my heart and soul.

So, tomorrow morning again I will rise with the hope that comes from walking with the Lord in the strength that He gives.  I will seek first the kingdom of God.  I will pray for the Lord’s guidance and direction on my day.  Then, as I have done daily, I will pray for a cure for my sweet baby.  I will seek direction and guidance from the Lord on whom to ask to help us in our fight.  God walks this road with us, and He cares for the sick and the weary.  That speaks of Rachel and our whole family.  I am thankful for God’s goodness.  I am thankful for the many that He has sent alongside us to encourage, support, and help us in our fight.  I can not wait to give the Lord the glory for curing this awful disease some day soon.  We will celebrate and rejoice with tears of gratitude to the Lord and all of His faithful servants that walked with us on this road.  It will be the biggest party this side of Heaven!  We are so very close…but we must not stop!  We have to cross the finish line!

1 Cor. 9:24 Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it.


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