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





Tuesday, September 24, 2013

In It to End It

I'm nearly embarrassed to read the date of my last blog post was months ago in *July*.  I've never liked to let life slip away so fast, but in reality I haven't been sure what to post about.  The stress of micro-managing our household with 3 CF'ers, the same treatments day in and day out, or that we've had the "Trinity needs to gain weight or we need to consider a feeding tube" talk AGAIN...nothing has come to me as worth a blog post.  It's stressful, it's crazy.  Sometimes I forget that this all isn't "normal" and I feel a bit better.

But what does come to mind as I sit down next to empty nebulizer cups and vials is our kickball tournament.  6 years of putting on a huge production to celebrate with our friends and family.  To date, we have raised $60-$70,000 alone for the CFF from this event.  And in the eight years of fund raising, if I had to guess, would be that we are nearly at $200,000.

Each year we dedicate a moment of silence for all people who have passed away from CF and share a life that has touched us personally.  As we get to know more people in the CF community it is unfortunately getting more and more common to have a personal connection to at least one person who has left this world in the past year.  This year, we have chosen to honor Theron Branch.  And while we never got the chance to meet him in person, we didn't have to to know that he is quite deserving.

My family had the honor to meet Theron's dad, Steve Branch from the country duo Branch and Dean this past August at our local-county fair.  After my mom made contact they personally reached out to her and asked that she meet them backstage with my dad and sister.
Their hit single, The Dash was written after Theron passed away after his battle with CF.  It's a huge tribute to raising and bringing awareness to the entire CF community.  Steve shared with our family that Theron's biggest fear in facing death was that his memory would not live on and would be forgotten.  Extremely the opposite.  In a small town in southeast WI we have an autographed CD from two guys that call us family now.  And Theron won't be forgotten.  In fact, he will be remembered for not only a moment, but for a lifetime-ours.



This year our t-shirts will display the words "In It to End It."  Everyone who comes out on Saturday is there for the same reason-to end CF.  And it's so close to happening for so many.

And every now and then, someone comes along like these guys and inspires us to keep going.  Keep fighting for every breath they breath.  To live our dash the best we can.  Long years or short on either end.


Branch & Dean's song lyrics begins with the years that Theron blessed the world with his earthly presence, but the title is more concerned with "The Dash" between the years.

"Your life is made of two dates and a dash.  Make the most of the dash."

Wednesday, June 12, 2013

"There's Nothing Like a CF Mom"

We've all been following the story.  The controversy.  The heartache of a mother's plea for her daughter to be placed on a lung donor list.  Today Sarah, a 10 year old with CF, got a new pair of lungs.  But what pains me more, is that the world has called her story a "sparked debate."

And as a CF mama, this is not a Fox News report.  This is a matter of life and death.  For Sarah, for thousands of CF kids. 

I've never met Janet Murnaghan, but I imagine that she is amazing.  Inspiring.  A fighter.  In an interview Boomer Esiason (former NFL Quaterback dad of CF son Gunnar) said that Janet deserves a ton of credit.  "There's nothing like a CF mom."

I probably won't ever meet Janet or countless CF moms for that matter, however I see myself across the television screen each time the story is run.  I know Janet because we both got that "phone call".  We both can tell you where we were when the news broke of a CF diagnosis.

I am Sarah Murnaghan's mom.  We stand with Janet because we are exactly the same.  My CF moms and I share a connection that runs deeper than our friends, even our family.  We know the same heartache inside and out.  We see what you don't.  The fight against health care and insurance.  We battle nebulizer treatments, vest therapy, and enzymes at every meal.  Our kids fight the battle against life.   We fight the battles no one wants to.

We are Janet Murnaghan.
Jessica.
Jodi.
Crystal.
Jen.
Mary.
Sandy.
Leanne.
Rachel.
Margarete.
Breck.
Bridget.
We are Sarah Murnaghan's mom.

We stand with you Janet.  We love you and are praising God for the gift of new life today.  We thank you for the life who will live on through the beautiful choice of organ donation.

To my beautiful CF mama's remember the words of a CF dad: "There's Nothing Like a CF Mom"!



Thursday, May 30, 2013

May Clinic

This is my all time favorite photo.  Cayden doing his neb treatments in the car on the way to our North Carolina Vacation.  Fitting in treatments are what we face every day without fail.

We had the most amazing family vacation; I could go on and on.  But I wanted to share our last clinic appointment results in May.

Cayden, Trinity and Cooper all gained 2 lbs each-huge hurdle for them all (especially Trinity).  Cayden's PFTs were low so his CF pulmonary doctor wants him to come back in one month instead of his regular 3 month check-up just to repeat them.  He won't have a "full" appointment until August.  And while he wasn't overly concerned about the low numbers, he wasn't sure why they wouldn't be at his baseline level either.  It could be a pure fluke, but you just never know.  We left for our trip with Cayden coughing a fairly wet, barky cough.  After a few weeks it subsided, so my theory was that his month switch from TOBI to Hypertonic could be the reason. 


While we were on vacation, our friends (The Brown Family-Jackie and Tammy, plus Micah!) represented the Topel Trio as we raised our personal record breaking amount of $14,000 and counting!  We are so completely grateful for our family and friends' support in making this happen.  It is an exciting time for our kids and thousands of others waiting for the cure!  

Today is a bittersweet day-a year ago today I was posting a blog on Cayden's hospitalization.  It was a horrible day, but I am so very grateful for the care he was given and thankful for the blessings of good health this past year.  Its an incredible blessing to not be hospitalized, especially with 3 kids with CF.  Sometimes I think we take it for granted how healthy our kids our, not realizing how much worse it could be.  
 
My last pic for this post is our thank you postcard for this year!  It turned out better than I could have imagined.  I love what we do, I love what we are about.  I love that we are part of making a cure for CF!


Thursday, May 2, 2013

10 million

Confession: This is a topic-stealing post from our friend Josh.  An avid blogger, lover of children, creator of Moganko, and an all around great guy fighting CF like a beast!  You can check him out at:
http://www.welcometojoshland.com

I copy his post because it's at the front of why we fund raise for CF other than for the obvious of a cure.  Never in a million years did we think we would be caring for 3 children with cystic fibrosis.  We didn't even know what it was.  We were "blissfully uninformed" as he puts it.

"More than 10 MILLION AMERICANS are symptomless carriers of the defective CF gene.

That's a lot of people who are blissfully and rightfully uninformed of cystic fibrosis—what it is, what it does and how it changes your outlook on life. Honestly, I can't blame them because I'd probably be the same way. Why worry about what isn't in your world?

Every year, 1,000 families just like those "blissfully uninformed" are diagnosed with CF..."

We have met countless people through the cause.  Some close and others not very.  But each person hears our story and we pray is informed that God-forbid their world collide with CF.

Our family members are carriers.  Friends who least expected it.  Gratefully none of them have been one of the 1,000 families learning of a new diagnosis.

This past Wednesday I was able to share our family's story with a Catholic parish in Montello, WI.  It was absolutely humbling for me to share with them and while I certainly know I touched them, I pray that they never have to know CF the way we do.  But if they do, I want them to know that there is hope.  They can fight and to never lose hope.

We are now nearly finishing up our fund raising for the month, wrapping up until September's kickball tourney.  It is the most exciting year ever.  We are heading into the walk already with over $13,000!  It blows my mind to type that many zeros after the comma.  To my knowledge we haven't ever went into a Great Strides walk with that amount.  We are almost half way to our goal.

Clinic updates will be coming in the next few weeks...everyone is doing so great!

Thursday, April 11, 2013

Tirelessly

Every year we go into auto pilot.

March arrives and we start over. Fund raising and tirelessly sharing the joy of why people should invest their time and money into the CF Foundation.

And as each new year passes, oddly enough it gets easier.  It gets easier because the Foundation is full of hope and promise.  Yes, it sounds cliche but on the contrary.

The days and weeks ahead will be full of sharing the glory of what every last dollar has meant and done over the past year, but somehow we still fall short of what words to say, use, that can POSSIBLY convey the absolute truth of what miraculous things are unfolding before our very eyes.

This weekend we will be selling our "65 Roses" and as much as we want to "convince" people that this is THE charity to be investing their money in, the truth is they convince us to continue what we are doing.  Tirelessly.  They inspire us by their generosity and help us push through the hardest of setbacks.  Our parish priest recently got a letter from the Foundation sharing the exciting news of VX809 moving into Phase III patient studies.  His response to the letter is what we will share this year- "Is this really true?"  It is the question we ask every day, knowing with full intention that it is.  And for someone who is not in the "know" of CF research we can respond YES this is true wholeheartedly.

We have so much to celebrate because of these people.  They have no idea.  And I hope we can share even a piece of our joy with them.  Because without them we would be hopeless.

Every single dollar matters.  It's how we start with nothing and end with $30,000!  Please consider giving.  Donate to the Topel Trio