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Rachel’s Raise of Hope 2015

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Blessed and humbled by the incredible group of people that are fighting for more tomorrows for my girl!! RACHEL’S RAISE OF HOPE!!

 

With the craziness that has started this year in our home, there have been many mixed emotions concerning fundraising for my sweet Rachel this year.   I have spent a lot of time trying to sort out emotions, feelings and correct responses in light of the situation with Kim.  People have been so incredibly generous and kind in helping in her time of need!!  It has truly been overwhelming.   And, at times it has felt like a kiss from Heaven in the midst of a really difficult, and emotionally taxing time.  Being a single mama, the needs are great.  Paul and I see them.  They keep us up at night praying, thinking, pondering how God will make a way.  We know that He will…as HE always does!  But the load has been especially heavy.  And yet, the outpouring of love and support has been pretty amazing too.  WE are SO thankful!  It has provided much encouragement and strength for us all.

I often feel like our life is pretty crazy on any “normal” day, let alone throwing in the stress from trying to do all we can for my sister and nephew.  Helping to tell her story and update friends and family on the battle that has ensued while preparing for the ones yet to come.   While SO THANKFUL to do it, it has been difficult.   In many ways, I feel like my fight for Rachel has taken a back seat.  I have pondered this SO MANY times and in SO many ways.   Usually by now I am full into fundraising season for my girl.  I am asking and begging everyone I know to help us get one step closer to a cure for my girl.  But, this year…how do I do that when others have already given so much??  YET…how do I not when I know the ramifications of not getting to a cure soon enough?   Those are thoughts that I can not bear to entertain.  Yet, my mama’s heart has struggled with wether to do Rachel’s Raise of Hope this year or not.  Sounds silly for some, I am sure, but asking for help is HARD!!  And yet, I know that without help, the future is not very bright for my baby girl.  IMG_1495

Something that has come to mind over and over as I have pondered this thought is the first days of Kim’s diagnosis, I did what I know best.  I researched this disease (on reliable and respectable sites =)).  I can not tell you the flood of relief when I got to the outcome line of the first article about Hairy Cell Leukemia,  “Several treatments are available, and successful control of the disease is common. Remission is likely, and with appropriatetreatment, the overall projected lifespan for patients is normal or near-normal.” IMG_5560

While I understood that this would still be a great and frankly, lifetime battle for Kim, the words, “lifespan for patients is normal or near-normal” brought tears instantly to my eyes.  A large part was because I knew that there was treatment and that my sister was tough.  Treatment and her sheer will would bring her to a good spot with this disease.  But, honestly the tears also came in the recognition that those were words that I LONGED to hear for my girl!!  Actually, even writing this last sentence the tears are welling.  I think of all of the mama’s and daddy’s that worry over theirlittle ones while desperately trying to manage all that it take to keep their child well.  We fight hard for a little bit more time.  Rarely, if ever does a parent with a child diagnosed with cf hear the words, “You can expect a near normal lifespan!”  Many of the people that I know of have died in their early 20’s, 30’s if they have defied the odds and 40’s if they are pretty lucky.  The cf world is a tough one to be a part of. While there are many triumphs, there are many, many heartbreaks.  A recent heartbreak for the mama that lost her thirteen year old this month.  Thirteen is JUST TOO YOUNG!!  We cry and we pray, and we HOPE.   We desperately hope that our path will be different.   As a community we forge on.  We learn to celebrate the good.  There was news this week of a beautiful cfer that received a second lung transplant this week!  We cheer those milestones, while still the heartache is very real knowing that the pain of even a second chance at life is because of this difficult disease of cf.  While there are many triumphs,  there are far too many heartbreaks.  Not a day goes by that I do not think of the preciousness of life for Rachel and those like her that struggle in so many ways that most never know everyday of their lives just to be somewhat normal.   Rachel, although only 9, she knows this struggle.  The simple struggle to just strap on her vest every morning, and night, the time away from things that she would rather be doing, the struggle to remember the copious amounts of pills that she needs to survive, the push to do what she does NOT want to do, it is constant!  While there are some very good days for her, EVERY.SINGLE.DAY. there is the struggle for health, breathe, and life!  As much as I hurt when she hurts from the pain of cf,  I am merely watching my loved one, I can only imagine what it would be like to know that this is your life, your body that is constantly failing you.  CF is daily stealing the preciousness of life from her. IMG_8536

I have several stories that I want to share today.  Not really because I need you to know them, and certainly not for you to feel sorry for her or us.  We are blessed, and we know it!!  I share it more for me to have a record of our journey through this life.  The difficulties and joys.  Through this last month we have had several of these “icky” cf moments.  Ones where she has looked at me in pain from cf issues.  These come with both the physical and emotional distress.  Just this last week she asked, “Do people ever outgrow cf?” I, sadly responded, “No, but sometimes new medicine are developed to help with the symptoms.”  With tears in her eyes she dejectedly said, “Then, I guess I will have to live with THIS forever!”  This particular conversation nearly broke me.  I could see her pain, and yet there was nothing I could do about either her physical pain or her emotional pain in thinking about the future full of more discomfort and burdens.

The second one was a conversation that we were having around the lunch table about a family that we know that has extremely spoiled children.  Each of their children get amazing gifts for birthdays and Christmas’.  At one point Rachel said, it would be fun to be in their family.  To which I responded, (as one of my funny, snarky friends says to her kids), “Why don’t you see if they are taking applications for new members of their family.” =)  I thought it would get a chuckle.  But instead, Rachel pensively said, “I don’t think they would take me.  I come with too much stuff and work.”  Talk about a moment that hit this mama between the eyes!!  I have heard older cf patients say that they knew very young that this disease was REALLY tough on their family and they felt awful because of it.  While, I know that Rachel has heard that OVER, and OVER many times before about her life having a purpose and being special, it also gave me a heart wrenching insight into her mind at times and how she sees the struggle of cf and herself.  THAT WAS an “icky” cf moment!!  I post some of these hard conversations, but there are too many to count.  Sadly, it is what comes with a difficult, deadly disease…heartache and a longing for hope!

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Precious picture from last year. Can you see Rachel peeking out? A joy deep within her soul knowing people see and care about her struggle with this difficult disease. LOVE!

I must say though that Rachel is an amazing young girl.  She smiles more than most anyone I have ever met.  The “yuck” of cf does not define her.  Most times she tries to ignore what she can of it.  And, when I take a step back and think of the responsibility and absolute fortitude it takes for Rachel to “do life” and compare it to myhealthy children…it is startling, even to me, at times.  Through her pain, I continue to remind her that God has a special plan and purpose for our suffering.  As hard as it is, He has allowed cf to be part of her design.  God’s ways are perfect and therefore He has a very special plan for her life to bring Him glory through the trials.  She is only 9, but I know she gets it.  I hear it in many of her conversations throughout the day.  Despite her childlike understanding, it is still hard.  I intensely long for the day where there would be talk of a near normal life span.  Maybe some medical bumps in the road, numberous medications perhaps, treatments possibly, but at the end of the day…LIFE!

So where does this lead me to…not sure??  I honestly wasn’t sure where I was going with this post when I started.  Just some of the musing in my mind over the last weeks and month.  I guess, I wanted to let you know that despite the fact that Kim is in a fight, which I plan to be there every step of the way…I ALSO plan to continue the fight for Rachel.  I am not sure exactly how I am going to do it this year.  I have spent some time praying about it, and thinking about ways that I can still spread awareness about CF and raise a bit of money for a cure.  Currently, working on ideas for tshirts.  This is one of Rachel’s absolute favorite parts of fundraising for a cure.  She deeply loves the Great Strides walk and seeing everyone out wearing “her” shirts.  (If you have ideas for shirts, please send them our way, as my brain is a little taxed this year it seems. Trying to talk her out of the color purple. =0 ) Somehow, I still must find a way to work toward bringing the cure a one step closer for my girl.  The cure IS COMING…praying it is soon enough!!

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A fun treat from the Cordial Cherry. Perhaps the cutest little “puppy love” dog I have ever seen. Let me tell you how hard it was to eat this cute thing!! BTW, Rachel really, enjoyed these treats too. Praise the Lord for a treat that she wanted to eat!!

Have to share one other really cool way that I see the Lord working out the details.  Through Rachel’s gymnastics we have met an amazing family.  They have learned about cf and have joined our fight for a cure for Rachel!  The mom works for the Cordial Cherry with her sister.  This sweet mama has been brainstorming with me at practice each week of easy fundraising ideas.  She is a “go-getter”!!   Before Christmas she printed cards with Rachel’s story and a plea for help to fight this disease.  We sold a few before Christmas, but this last week she did a phenomenal job telling Rachel’s story and educating people about cf.  She sold ALL OF THE CARDS and raised an amazing amount of money for Rachel’s future.  If you have never been to the Cordial Cherry, please check them out http://www.thecordialcherry.com.  What a blessing to know that others care enough to give of their time and resources for your child!  I can not even begin to tell you what a gift this act was.  It was a reminder that even though these last couple of months have been difficult, God knows.  He cares… AND He sends others to encourage and uplift spirits!  Thank you, Jennifer and Melissa, for your love and care for our family.  May God bless you!

Okay, please mark your calendars and plan to join usfor:

Great Strides Walk
MAY 16th, 2015
9:30 Stinson Park

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Because of you, we have hope for the future of our entire family! THANK YOU AGAIN for your love and care!

 

http://fightcf.cff.org/site/TR/GreatStrides/84_Nebraska_Omaha?fr_id=3412&pg=entry our team picture is on the page to sign up.  How cool is that? HOPE FOR A BRIGHT FUTURE!! Find Rachel’s Raise of Hope and sign up to walk with us in May!

 

 

*Thank you again for the prayers and encouragement over the last couple of months.  I can hardly believe it has only been 5 weeks today since Kim went into the hospital.  Tomorrow she has an appointment.  Praying that I will have good news to report!!

 

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One Response

  1. Thank you, Tiffany, for sharing… You do such a wonderful job of pointing your children and the all the rest of us to God and His goodness in the midst of the hardship and difficulties of life. Praying for you all.

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