My Moments to Breathe

Wednesday, November 2, 2016


Let me tell you about this little guy.

His name is Mavis.

He is ours! We got a dog! 

This blog is over 2 month old, but as you know, life around here as been a little preoccupied. But after 10 years of hoping and asking and down right begging, Jeremy finally said yes to a dog.

He was owned by a couple in Michigan, and after the wife passed away from cancer the husband was looking for someone to take care of him. I don't personally know this couple, but they did such a great job on this dog. He is amazing...really I say aMAVing and Jeremy just rolls his eyes.

He is 1.5 years old, knows tricks, walks like a champ, and loves his new family. Jeremy is his person, and has been since day one. Which, of course, makes me smile since out of the 3 of us he wants the dog the least. I say this, but will also say he is great with the dog.

When I was in the hospital and still to this day Jeremy walks the dog when I can't, plays with him, lets him out, feeds him...etc. Thanks Jeremy for taking care of the guy when I can't.

Laila loves this dog so much, he sleeps in her bed every night. All we have to say is "go to bed" and he walks to her room, jumps up, and doesn't get up until we wake her up. And even still he doesn't want to get up. 

He loves walks, playing, fetching, tummy rubs, did I say walk yet, his family, anyone who comes in the door, squirrels, and ummm walks. 

We love him too! I am so excited to finally have my Mavis.

Crossing off another one! 85. Own a pet named Mavis

Tuesday, October 11, 2016

Acute Lung Injury

This has been very tough.

It started Saturday September 10th, and has been a whirlwind since then. I woke up fine, walked the dog fine (yeap, just wait for this blog) and then boom. I was on the couch and not feeling too great, so I decided to go lay down in bed. I made it half way down my hallway when I started to get dizzy and warm and black started filling my eyes. So I hit the wall, slid down and laid there until I felt I could get back up. It didn't take too long. So I slowly got back up, went to the kitchen and then found the next wall to slide happened again. A quick text to Jeremy and he was right over with juice, toast, and a helping hand. I managed to fell well enough to make it to bed for a 2 hour nap. I got up feeling OK but it got better during the day. I ended up making dinner, doing the dishes...normal things.

I woke up around 2 on Sunday with a fever, did my tests around 6 and knew I needed to call the doctors. But still not too bad I stubbornly argued just getting some antibiotics at home. Well, a then-hidden blessing, they told me I needed to come in and just make sure. Seeing as it was Sunday I had to go through the ER, and it was cramped...the Iron Man was the same day in Madison and there were plenty of people who needed attention. 

They did all the normal tests, X-ray, Blood work, check heart rate, blood pressure, oxygen level. They poked and prodded three times to get an IV (I guessed it would be three pokes before and I was right...its like I have done stuff like this before!) As soon as they checked my oxygen and it as 91% I landed myself a nasal cannula of the good stuff. It helped, a lot. I had yet to see my X-ray but the 2 doctors I saw told me it looked like I had a bad case of pneumonia. Ok,I thought...lets get IV meds started...I need to feel better before the week is up, I have a talk and gala to go to!

From there Jeremy and I were escorted to a room where I would be staying for a few days. Monday morning they would be a bronc to see what type of pneumonia they were dealing with. No biggie, really in the grand scheme of things...they can fix this. 

And then that fear was thrown in face, and out my mouth. I coughed up bubbly blood. "Do you guys see blood with pneumonia?!" The answer wasn't really what I had wanted. I start to get a little nervous. They hav me do PFTs and my beautiful 120% was now down to 74%. WHERE IS ALL MY GLITTER!? They took me down for my bronc and I saw my X-Ray, wow. It actually had me hold my breath and my heart started to pound, my glitter was stuck down low, covered in a cloudy white mess. This couldn't be my X-Ray, could it? And then I started to  for get sleepy from the meds. I woke up thinking the worse was over.

But it wasn't.

I started to not be able to do the little things anymore. They started bump up y oxygen more and more. What is going on? I can't breathe. They bump my oxygen. They say I have to wear a face mask, ok, now I have to do high flow oxygen because regular flow isn't enough. I can't eat without my oxygen dipping down into the 80's. I can't walk myself to the bathroom and then back without the same results. And then I lay down to catch my breath, but there is nothing there. Not enough air and I get scared. I keep telling them I need more help, my oxygen isn't going above 80% now. I need to be put on Bi-Pap. They need to force the air in my lungs. They need to take me to ICU. They are in talks about putting me under, putting me on a vent and letting my lungs heal. No.

Dear Lord, of please wrap me in your arms. I mange to tell everyone that will listen that they can't let me die. I don't know how to say goodbye to everyone. I only gave Laila a quick hug and kiss...I can't die, I can't leave her. Jeremy was by my side, but how can I leave him too. My parents were on their way from MI, they can't watch their daughter die. I haven't seen my sister in awhile, I can't leave her. So much is up in the air, so much isn't finished. Please, Lord, don't let me die. 

My bi-pap would beep when I would stop breathing for awhile, the nurses would come in and remind me to breathe. I had to be reminded to use my lungs. I could no longer walk. I could no longer eat. What is going on?! 

Every test they performed came up negative. It showed nothing. Nothing for virus, nothing for bacteria, nothing for fungus, nothing for rejection. They can't find out what is wrong with me. How do you fight something that doesn't have a name? With everything. I was on 3 antibiotics which didn't help. So I was placed on steroids. I was put on 3 days of 500 mg/day dose and then tapper for the next 6 weeks. Praying that this would work, and now praising the Lord that it did. 2 days of being in ICU and I was able to move from bi-pap to high flow oxygen. I could stand up and take 2 steps to use the bathroom. I could eat pureed soup and drink milk. I could now talk to my family and friends when they came in my room. I was slowly healing. I wasn't begging everyone to make sure I didn't die.

I was done with two ivs that blew and a midline was placed in, only to have to not return blood when the nurse tried to hard to draw from it. why the haste you ask? Well, that nurse poked herself with my needle and needed blood from me to make sure I had no other disease she could catch. She wasn't happy and took it out on me. I was moved out of ICU at 3 am that night. Through scared, drugged, hazed eyes I shed some tears. I just needed to sleep, so I could heal. But was happy to be back in the land of all my good nurses who took care of me way too well. 

The gala came and went, and my family all said they had a great time. They sent me pictures all night so it was like I was there. Jeremy and Laila took over and gave one of the best speeches I have ever heard. Yes, my 7 year old got up in front of hundreds of people and read the speech she wrote. Check it out on Facebook if you can. They did an amazing job.

The next few days were filled with tests upon tests, pokes upon upon pokes trying to figure out what was wrong. Maybe I was aspirating all my food, so I did a swallow study...and gagged through the whole things. I don't aspirate my food, that would be such a waste anyways right. Still nothing was culturing a positive. Ct scan, xrays, tests and tests and tests. But I was still getting stronger little by little, and was able to now get up and at least sit up, move to my chair, maybe even walk to the bathroom once in awhile (10 feet away)...but to me all those were victories. A few days later I put my big girl pants on and told them I was going to walk the hallway (with the only RT I really trusted...she even washed my hair, changed my shirt, and got socks for me. I was more than a patient, I was a person she cared about!) and I did. And everytime I walked farther, and a little faster. My oxygen staying at about 92% while on 70% high flow rate. But I didn't care, I was walking. And to keep my energy up I was starting to eat more (which was running a marathon type breathing and sweating) and for extra intake I was drinking a protein shake on top. I was determined, I was getting some fight back,

My anxiety was high, and not much would really calm me down. Poor Sunday doctors got the brunt of it when they wanted to do more tests, poke more. My potassium was high, my EKG had changed. I was done and they all knew it. So much knew it that my nurses came in just to talk. Nate just sat next to me and listened to me cry and talk. Sue came in and brought ice water. Joey came in and just talked football with me. These are good nurses. These are the ones that deserve more. I told the doctors they couldn't come in anymore. That was I was ready to go home and that everything they said was didn't make sense...I asked over and over if the extra protein shake I was drinking had anything to do with my levels being off. Instead they treated me a few times and then put me on a renal diet...with boast which I refused to drink. They didn't listen until the 4 time...I was right. Sometimes you have to be very fully aware with whats going on, and its hard. 

The good news is in that small amount of time, I had gone from highflow, to face mask to now a cannula with 2 ml of oxygen flowing through. Thank you Lord! My lungs were still healing.

I didn't sleep that night, again. I made a list for 8 am when I would see my team and argue the fact that I needed to go in. 2 weeks was too long. Jeremy came as soon as he could because he knew my anxiety sent me through the roof. I told him and Laila not to come Sunday because I didn't want Laila to see me like that. I wasn't confident, I was scared and not handling anything well. My team, who had been warned, walked in and asked how I was. Followed by a you can come home...I didn't have to argue my points. But I told them I had some really good ones HA!

So we packed up, waited for paper work, waited to make sure I had enough oxygen to get us home, that a at home system would follow shortly so I wouldn't have to worry about tanks. I had to get my midline pulled, get dressed and we were out. 

I cried most of the way home, just thankful that the Lords will was that I was living and going home. Laila and I were reunited again and there was tears on both ends. we didn't leave eachothers side all night, she even slept on the other couch so she wouldn't be far away from me. I had her hand and I wasn't letting go.

Jeremy's parents came a few days later to help cook and run errands, take care of Laila. It was nice to be able to still not worry about using energy. Just relearning how to breathe again. I couldn't cook or do much so we needed a little mending. 2 days after they left my Mom came to help us too, she worked her buns off PLUS made some of the best chicken! I just dropped her off today and wasn't ready to say goodbye. I didn't realize I could hate those words so much. Thanks for the help guys!

Yesterday I had a follow up appointment and all my labs looked really well! My PFTs were still at 74%, but we will never know how bad they had been in the ICU so my doctor said he was good with that, to keep doing what I was doing and see if this is my new base or if things still improve. I walked my 6 minute walk WITHOUT oxygen and now am able to do things without it. I wasn't allowed to leave the house for more than an hour at a I can start doing things again. I drove today for the first time in a month. I walked the dog I wore makeup. I looked like a girl again...a human again. I have lost about 15 pounds, and am trying to work on gaining that back. Its hard because right now I am diabetic due to the medicine, so I'm trying to figure this out right now.

Praising the Lord for everything he has done for me and my family once again. This was a lesson for me in letting it be His will, not mine. A hard lesson when faced with, but once I was reminded over and over and over again to give it to Him, my brain and lungs and heart would relax. Thank goodness He is in control.

It is still a long road and I have to rest just as much as I have to be active. Tomorrow I plan on vegging out on the couch and watching marathons of Project Runway. My work literally has to be breathing...I have to remember and expand! I am still on higher dose of prednisone which means I am a crazy person, so if you see me and I kind of shy away...please don't take offense its just for everyones own good HAHA!! Thanks to everyone who have helped us this past month, we all appreciate it more than any words can say.

Enjoy this week and don't let things bother you when they are little, because those little things are just that...LITTLE. That cold will pass, the boss yelling at you will be fine, the bad grade is just a bad grade, to start a fight over something so little isn't worth it. You never know when the last moment could really be that last moment, I can tell you that I will never just give Laila a quick hug and peck goodbye anymore...even if it means we are a few minutes late!

Sunday, July 10, 2016

The Sky!?

Yikes, it has been months. I actually missed writing a ton, so I am back and ready to catch everyone up.

We have been pretty busy this summer, and its been pretty fun. Plus we have so much more in the next few months to come.

Our Family Feud episode aired. Did you all see it? If not try and find it, it was such a fun time. And I still think the Sky can be black and white! Ask me about it, I can have you convinced!

We went to Kansas City for a Tigers game and to visit some life long friends. The trip was filled with crummy gas stations, flat lands, and Iowa. But well worth it, always great to go back down nostalgia lane with the Freys (we have known Dan separately since about 2nd grade! Here is where I could slip in some funny stories or inside jokes, I have more than 42...but I will spare you all!) While we were down there Laila knocked one tooth out and the other one almost out. It was pushed out by Daddy 2 later. The dentist said everything looked ok, and she has an appointment in a few weeks so I will be interested to see if he still think it looks ok. The girl split her gum from the tooth to the top, and it still has a split. Praying that everything will still heal well.

We celebrated our 10 year anniversary July 2nd. Wow, 10 whole years. Making it 18 years total we have been together, passing the mark that we have been together longer than we haven't in our short lives. We were just babies, a sophomore and junior in high school. Again, babies! It blows my mind. We have grown up together. Had a great time, and waiting for the bigger celebration later this year. Hopefully!

Jeremy's oldest brother Ben, his wife Leigh and our 3 nieces and 1 very cute nephew came over the 4th to celebrate with us, and again it was a fun filled, non stop, on the go weekend. And once again I wouldn't change a thing. This past weekend Jeremy's youngest brother, Nick, and his wife Theresa came and again, we had so much fun. We ate, ate, and ate...its what we do. We haven't seen them all since Christmas so you can imagine the catch up, laughs, talks, and fun we had.

My health:

Its been good. My lungs are still great, but a little sluggish with the missed sleep and all. But nothing some extra TLC won't fix. I good mixture of exercise, sleep, and good eating. But, no, its nothing to worry about. My numbers still rock!! I have often thought this year of all the things I probably wouldn't have been here for. I wonder how much would have been different, how some people would be different. Its hard to think about, but once in awhile my mind goes there, and the emotions catch the best of me. Then I get a hug and eat a caramello and everything goes back to the back of my mind again.

I finally found out that YES, I do have a slight hearing problem. But YAY for me not being crazy and imagining the problem. I have a toning issue, making it hard for my tears to not jumble sounds basically. So, I need to do some exercises to help train my ear. Its hard, and I find myself getting frustrated with it. So if you are talking to me and there are others noises around and I ignore you, its most likely that I can't hear what you are saying or that you are saying it to me. It was caused from some antibiotics that I was on for some years, but in the long run I do understand that the issue I have now is better than what could have been without that medicine, without that bandaid that helped me last as long as I have.

I hope you are all having a great summer, enjoying the sunshine, warm weather and the outside. We sure are trying around here! Soaking it all up before the weathers changes for the fall in a few months! 

Wednesday, April 20, 2016

A 2 for...

My surgery. Ugh. Groan. My surgery.

I will blow off some steam and then let it go.

I was blessed enough that my mom came to help. She helped a ton, and thanked the Lord for her many times. The weight of Laila having a normal(ish) life was lifted as much as guilt allows it to. Also thanks to Jeremy who handled me well. And my other 2 visitors while I was in....great catching up with both of you!!

I knew going into this that I was spending a few night hooked up to an IV until the cultures showed what meds I needed. And even though I wasn't thrilled about that, I wasn't upset that they were taking care of my lungs. 

I packed my bags, full of comfy clothes and things to do during the long days. Every Team Cassie shirt, cute new socks, my fav pants, the game SET, coloring books, magazines....etc etc, and Jeremy and I headed off to Madison on Sunday night. I had to be at the hospital before 5:30 am. 

We go to Madison and I did what I normally do before surgery. I eat as much as I can, drink some, take a bath, shave, wash my hair a good last time, pray all night, and just try and relax. I was ready for the next morning. Tired, but ready. 

I was ready for the headaches to be gone, the pressure in my sinuses, the infection gone, and just get to the next level of the process. I was so excited about the thought. After three pokes, they finally got a sort of good IV in and without warning gave me the relax juice. I just remember telling the anesthesiologist he was a trickster, going into the OR (and thinking it was so tiny compared to the transplant one....well duh) and moving unto the table. Then waking up in pain, Jeremy wasn't there, and I wasn't sitting up much. 

I was shortly moved to my room, given pain meds, and finally Jeremy was aloud to come in. Ahhh I was starting to feel ok, wake up more, talk to people and eat. Such is surgery, its over and on the mend.

But that would just be too easy, right? I ended up being semi allergic to one of the antibiotics they put me on. My arm burned, turned red, and blew up in little itchies. So I was like, yeah, just stop that one then and lets move on. So they did, but of course they still needed to pull my IV out. And put another in. But this time it was a midline in my upper arm with the IV team. So another poke, more tape, and a sore arm later...I was doing more meds. And it was over, and I could heal.

I would call home often, and Laila would call me when I didn't call her. The call was full of tears, almost each time. A little girl just wanting her mommy to be back home, and her mommy wanting to be back home just as much.

I was excited that Thursday looked like the day that I would be going home. I was feeling good, my packing was coming out, I could go for a real walk, and I just ordered my pancakes...I was a happy girl. So lets go! The packing first.

ENT came around 9 to do it in my room, even better. I knew from previous times that the packing hurts for about 5 seconds and then a rush or relief. But this rush of relief was a huge rush....a rush of bright red blood. Non stop. So they spray it to help stop. Didn't help. Pinch and head on knees for 30 minutes. Didn't stop. I was spitting and wiping blood out of my mouth. I went through over a book of gauze. So they had to put the packing back in. Didn't stop it. The blood was all over my shirt, down my neck and cheeks, my mouth was crusted with dark red dried blood. All day I sat with blood spilling over my packing. I knew what this meant, I was warned.

Another surgery. They had to stop the bleeding. So as my pulm dr was ready to send me home or oral antibiotics. I was stuck with a midline and getting ready for another surgery. But I was suppose to go home!

So with kleenex in my bed, I was wheeled down for pre-op. Put under in hopes that cauterizing the vessel would work. Just praying so hard.

I woke up, and there was no blood on me, there was no bandage under my nose trying to stop it. It worked. Phew. I could hopefully go home on Friday if all went well over night. And praise the Lord, it did.

I walked away with a swollen nose, and with a fat and numb lip, burns from the tape on my face, 4 bruises from IVs...but I got to walk away. I got to walk away with no blood, with no Iv, and holding my daughters hand. Again, praise the Lord.

I had a pre-op appointment this past Monday, a little nervous for what all was going to be done. Ha...nothing like walking in and the announce "Our problem child here." 

All I could think was maybe I was THIS doctors problem child...but I am tranplants golden one. 

They didn't do anything to my nose that day, they treated it like a brand new baby...a brand new baby that they didn't want to bleed all over the place. So they told me to rinse 8 cups of salt/steroid meds through my nose a day to help it heal. But did also say everything looked good considering what they all had done, And the best news...all the infection was cleared out and it had only cultured staph. No ultra nasty bug. 

So I am sitting at home, healing, fixing meds to make sure all levels are normal, eating as healthy and my prednisone will let me HaHa!

And so it goes, I can let it go!

Tuesday, March 22, 2016

Here we go

This past month has been pretty busy. 

On February 15th Laila had her tonsils out. She did really well, didn't cry too much, expect when I first got to go into recovery with her. This was one of those moments I thanked the Lord for a healthy child. It was so hard to watch her do that.

She ended up having to spend the night because she threw up blood, but in reality we are pretty sure it was her red medicine she took 10 minutes before that. Come to find out, her body reacts much like her Moms. Whenever something happens that it doesn't like, it turns into a high fever...but only for the first part of the day. So for a few days we sat and cuddled and took pain meds (well one of us did) and slept. And slept. But she is all healed and doing now praying bugs stay away from that child.

I have also been very busy with doctors. I had a skin check for abnormalities, and they found nothing. So all the years of sunblock, umbrellas, hats and every other form of shade has worked in my favor. She said I have done everything right, and to keep it up. So my skinny white legs will stay so porcelain this summer, again. And knowing the numbers I have vs. the numbers others have that don't follow some rules....I will take my legs.

My sinuses have also been a beast lately. Like I can't get them to act straight. So after a few years of trying to struggle with sinuses that pretty much are  my least favorite thing...its time to go in and fix them. 

I have tried to rinse often, but my ear started to hurt so my doctor told me I was doing it too much. I had a CT scan and my sinuses are full of infection, more than what they can probably see. I am in pain often, my face ends up swelling and being tender, and I get headaches. Ok, so, I am hoping that this will help all of those. 

They are going to get all the infections out, mostly in the sinuses in your cheek. and then scrape some bone away to open it enough that gravity will help it flow down where it all should be. 

Sigh, another surgery. More proof that I just don't think I can do anything normal. But I am alive, I am breathing, and I am ok. So in the next few days I will have a date set for that.

Work is going very well. The kids are starting to get to know me, and the girls I work with a nice too. They have been awesome about the time I have needed for Laila, and my health so far. Very blessed.

Jeremy has been super busy, especially this week with Holy Week and the church getting the finishing touches on the remodel. He has been busy dealing with sick girls, and I am sure excited to get us all fixed again!

The next few weeks are packed full of fun things, I am looking forward to it! I will try and get on the computer next week to write more! Now I need to go make more lists, and try not to fall asleep too early!!

Friday, February 12, 2016

PFTs, Duckmasks, and Donors

I had a doctors appointment yesterday, on a cold winters day. It wasn't really a "planned"visit, at least not a planned for more than 4 days type. With all the germs flying around and this nasty whatever I have in my sinuses that hasn't gone away with 4 weeks of antibiotics, my doc wanted to check me out.

I admit I was a tad nervous. I had to fess up that I was around more than your average germs, I had to fess up to having a job, and had to fess up to being sick. But once again, the Lord has me in his protective arms. My xrays must have been clear of crud or infection because nothing was ever said about them, I walked 1920 steps in 6 minutes and my oxygen stayed pretty normal around 97% (although I liked seeing that 100% I had for over 1.5 years....I'm wondering if my body is just so use to O2 now that its getting lazy with it. Expand those lungs and get back to that 100%! But here is the kicker. The levels in my lungs went up even more. Yes, thats right, they are even higher. They are now at 119%. Can we all just pause and look at the number for a moment.


I mean we are talking about the little CFer right? The 1% less than 120. Thats like more than 500x better than I was pre transplant. I was in tears yesterday after I saw this. Happy happy tears. I am living pretty close to how an average normal person lives. My mind can't comprehend this. 

The next 2 weeks I will be going into Madison 2 more times for 2 more appointments. And praying those turn out much like yesterdays. This crazy doubly-blessed life of mine.

On a sad side note. One of my nurses is retiring and yesterday was the last time I will see least in that setting. She was a blessing. The first face you saw going into clinic, and even when you were sick she would smile and get a smile out of you. She made me feel so loved, always did. She told me how happy she was that I was there, living. That she remembers everything about my journey since I started at UW. I will miss her so very much.

The little bit of me inside (Ok I say little but really its HUGE...more than I will ever lead on) is still wanting to know anything and everything about my donor and family. Its hard for me to know that their lungs are inside of me, keeping me alive, and so unbelievably emotionally undesirable to me; and I don't know anything about the person they were born into. Like these lungs, think about it, had a good home for who knows how long and now they are mine. The ones I was born with are in a garbage (and some pieces used in research!) and the ones I breathe with now don't belong to me. 

And thats how I treat them, they aren't mine. They were a priceless gift, given to me blindly and I need to take care of them better than I take care of any other things on or in my body. OK, but to get back to what I was going to say...

I asked if anyone knew anything about my donor...basically age and sex but nobody knew. But....BUT...I found out so much about my potential first donor. My dry run donor from back on the July day. Like I know their story. I know it. Crazy emotions right now. Even though those lungs couldn't survive in me, I now know who that person was. I know about them. 

I know the name. The age. The sex. What they look like.

I know.


Right now I feel like I can't say much on my blog for probably dumb reasons, but at the moment don't feel comfortable. This helps some sort of mental state of limbo a tad. One of the donors I know, even if its not the person who lives inside of me, its the person who still signed their donor card and therefore was giving me a chance at life. I still am so thankful for that. And of course thankful for the surgeon who know that those lungs were too damaged from the cause of death. I can't even tell you the feelings, in full, of how and what I am feeling. I don't even know if any of the things I just wrote really make sense.

But hug your loved ones right now. Laugh just because you are here to do so. Eat that extra piece of cake (I know I ate about half of it!) And sign your donor cards!!

Saturday, February 6, 2016

Shortribs, Wine, and the CFF

Lastnight I got to do one of my favorite things, help raise money for the Cystic Fibrosis Foundation. And the food and drinks were out of this world!

It was the Milwaukee Wineopener and I was asked to be the speaker. There really isn't too many things that humble me more. I open up about my story of CF patient turned transplant survivor. To this day all the emotions run high when I talk about it, and at events were everyone there is her to support people like, tears and smiles both flow pretty steadily. 

The feelings of pre-transplant come flooding back. The getting ready to die feeling that my brain pushes back are now brought up to the foreground and I need to take to minute to remember that, yes, I am breathing. Yes, that is cool air coming in and out of my lungs. Yes, dying has been put on hold. Deep breathing, expand those beauties and show everyone what donations can do. 

I said it lastnight, and I will say it again and again. Without people like those who were there lastnight, and people like you who have supported, donated, and helped out...I wouldn't be here as long as I have. I wouldn't have been a sister, daughter, wive, and mom as long as I have. Isn't that crazy!? Thank you all and give yourself a hug from me (and my family.)

Bid for a cure set a new record for the event, and that money and donations from other events help make a cure something that could happen. The cure for CF may be too late for this girl, but if it means that there are little girls and boys out there right not don't have to worry about what CF will rob them off, of hurting them, then I will forever speak (or volunteer) and the Foundation. I will forever do my part and make CF stand for Cure Found. 

I meet incredible people with some incredible stories at events. I get to catch up with so many I have met in the past. I hear from parents how well their own children are doing. All from putting skis out and going in the snow, to moving on to the next big chapter in ones lives....and the best part if these things are huge for CFers, for their families. I talk to parents about how they feel about their child, about the accomplishments. I really have no words for the feelings I get when I have conversations with them. No words. I not only understand a little more the thoughts  and feelings of my parents when I was young, but can understand the scared hope in their eyes. 

Keep on fighting CF warrior and caregivers, keep on fighting!!!