Tuesday, March 25, 2014

We Will Walk and Not Grow Weak


Dear Family & Friends-
We will walk and not grow weak –Isaiah 40:31.
2014 has already been an incredible year.  It has brought with it new challenges to our daily CF care and great joys.  The Lord has certainly blessed us with the grace to continue fighting this disease and allow our kids to live normal, healthy lives.  The drug similar to Kalydeco we told you about last year (VX-809) is now in Phase III studies and as we shared previously, has been shortened to a 6 month study instead of 12 months!  Vertex expects to submit a new drug application (NDA) to the FDA in 2014 for approval of the combination treatment for people with two copies of the Delta F508 mutation. About 50 percent of people with CF in the United States have two copies of the Delta F508 gene mutation (which is the mutation Cayden, Trinity and Cooper have).  We can’t wait to see this news come across our computer screens and Facebook accounts!  It’s an incredible feeling to know something great, what has been beyond grasp for so many years, is literally right around the corner!
This year has not seen any hospital stays or major CF flare-ups (praise God!), but we are embarking on a large change to Trinity’s CF care in the coming months.  Our doctor has asked us to meet with surgeons to place a G-tube for night time feeds.  Trinity is now around the 20th percentile for BMI and studies have shown that CF patients who are in the 50th percentile or above do better in the long range.  There is also significant data that shows early intervention as a key factor in fighting the lung aspect of this disease. It has not been an easy decision to make, but we are at peace with this plan to her CF care and she is doing remarkable in sharing how she feels about having a “button” to feed her Pediasure shakes at night.  Trinity continues to take an appetite stimulant, Pulmozyme (nebulizer treatment), and airway clearance every day.  Trinity started doing PFTs (pulmonary function tests) last February and continues to do a great job mastering this way of measuring air function.   She never lets us forget her enzymes and she has even started helping out with meal time by counting out her and her brothers dinner meds.  She has navigated full days of kindergarten with Mrs. Streich and learning what it is like to deal with CF at school. 
Cayden continues his “routine” medication to combat of cystic fibrosis.  “Routine” meaning we will never be done when we run out.  He will likely be on them forever.  However, because he has had great PFTs since his last hospital admission 2 summers ago, he got the green light to have an “off” month between rotating 28-days of TOBI and hypertonic saline.  Both are nebulizer medications given twice-daily so Cayden wakes up every morning around 6:30 am to get his nebulizers and treatments done before he begins his busy day in Mrs. Koehler’s third grade class.  Growing up has meant facing new challenges and independence in his CF care, going to friends on his own, sleepovers, and being ready to take his enzymes to lunch on his own.  His favorite subject is math and he’s looking forward to his acting debut, playing Jesus in the Stations of the Cross with his third grade class at school.

Cooper is 3 going on 10! He has a huge personality and loves going to preschool two days a week.  He is still above and beyond the 100th percentile for weight-a true CF miracle and just like Cayden and Trinity he takes Pulmozyme (nebulizer treatment) daily.  We can’t believe he’ll be turning 4 this next month!  His pulmonologist, Dr. Green would like him to start PFTs at his next 3-month check-up in May. 


Colin is in Mrs. Kotz’s first grade class and loves doing math. She told us at conferences this fall that he is a kind friend, always thinking of others.  I’m sure having 3 siblings with special needs has certainly helped him become such a fine young soul.

It’s hard to believe that we have been at fund raising for 9 years now.  It’s incredible to think of the amount of money we have raised in that time and that this past year we raised more than we ever have!  Our kickball tournament raised $15,000 bringing our combined team total for 2013 to a new record of $31,000.


Let this be our personal invite to you.  To help us make certain that drugs like VX-809 will come to be available to patients in the very near future.  This is such an exciting time…we can barely believe it ourselves!  That things only continue to progress in the direction of a cure.

There are so many ways you can support our team. 
  1. If you would like to help financially and make a donation to our team “Topel Trio”, please send a check payable to the “Cystic Fibrosis Foundation” to Tiffany & Chris Topel, 123 S. High Avenue, Jefferson WI 53549.  Or visit our Great Strides webpage: http://fightcf.cff.org/goto/topeltrio to make an online donation and watch our 2014 montage.  Mark your calendars to join us on Saturday, September 27th for our 7th annual “Kickin’ for a Cure” in Fort Atkinson. 
  2. Share our family’s story/this letter to someone you know who might be interested in helping us raise money for the Cystic Fibrosis Foundation.  We also try to blog monthly with updates on our kids’ health @ www.youthministermom.blogspot.com 
  3. Walk with us!  Join our family on May 18th at Elver Park in Madison.  Don’t live near Madison?  Great Strides also happens around the country so you can walk anywhere!  Send us an e-mail and we would be glad to help you connect with a walk or to join our team. 
  4. Lift our family up spiritually. Even if you can not financially support us, please know that we appreciate and are grateful for all the love and prayers we receive. It means so much to us and gives us the strength to continue fighting each and every day.  It is one of the greatest gifts of support you can offer. 
  
We can never thank you enough for your support.  We are incredibly blessed by amazing family, community, and friends.  And without you we couldn’t do all we are for the CF Foundation.  We pray that your family will be blessed this year in the same way that we have been.  Thanks for being the cure! 

With Love, Chris, Tiffany, Cayden, Colin, Trinity & Cooper Topel





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