Betting on a Cure!

I am so excited to say that my sisters and I, along with our mom, are working on a new fundraising event we’re calling “Betting on a Cure”, a casino night benefitting the CF Foundation!  We think this event will be a lot of fun, and I hope we have a great turn out. 

The casino night will be on Friday, April 9th at the new Marriott Courtyard in Allen off Stacy Road.  The party starts at 7:00pm, and will include the classic Las Vegas games of Poker, Black Jack and Craps!  Marriott has graciously agreed to donate the space to us, so we need to make sure we have as many people there as possible.  This will be open to the public so, save the date and bring all your friends!

Buy-ins to play the games is $40, and prizes will be awarded to the top chip holders.  Additionally, raffle tickets will be sold for $10 each for a chance to win more great items.  We are currently looking for sponsors and raffle items, so if you have any ideas, please let us know.  We are positive we will have some wonderful options to choose from!

So far, everything is working out perfectly, so I know Courtney is working her magic from above and pulling some strings for us.  If this event does as well as the Zaza auction, we will easily be dancing over the $15,000 goal line she set for us!  Please come out and help us make this happen!!

Love,

Kelly

Random thought

This line came from an email my mom sent to me this morning – it made me think of Courtney so I wanted to add it for all to read:

“Sometimes the angels fly close enough to you that you can hear the flutter of their wings…”

Which made me think that sometimes we don’t realize it’s their wings we’re hearing until they have to go back home.  I miss my Courtney.

Love, Kelly

A memory with Courtney

One of my best memories with Courtney happened only a couple years ago.  In May of 2007, Marty and I decided to take a cruise as our family vacation.  We told Courtney about it, and she was so excited for us that we asked her join us on the trip.  So we packed up the car and drove down to Galveston for a 5 day cruise to Progreso and Cozumel, Mexico.

The ship itself wasn’t that big, at least compared to the one and only other cruise I’ve been on, so by the 3rd day we’d pretty much seen all that the ship had to offer.  Of course, the shows change daily, but for the most part, there was no more exploring to do.  Except for this one spot at the very front of the boat…  If we were standing on an upper deck, we could look down and see a few people lounging around a small pool.  It looked so nice and inviting compared to other parts of the boat that had many people roaming about.  So, one day while Courtney and I were by ourselves watching a show, I leaned over to her and said “Do you want to see if we can go find that little pool?”  She of course smiled and said yes.  I pointed to a set of doors towards the front of the auditorium and said, “I think we should go that way.”  Now I must say that a show was going on, so the auditorium was dark.  I pulled Courtney behind me (because she couldn’t really see well in the dark) and we made our way to the set of doors.  There wasn’t a sign that warned us not to go in, so we did.  We entered a hallway and climbed down a few flight of stairs to another set of doors.  When we walked through them, we were standing outside on the front of the ship!  Nobody else was down there – just me and Courtney!  The lack of people standing around didn’t alarm me; I figured it was just because nobody ever thought to walk through the doors at the front of the auditorium.  Courtney didn’t say anything either, so we kept exploring.  We walked towards the front of the boat and there was another set of stairs that took you down to a lower deck, and on that deck was the ship’s bell.  I turned to Courtney and said “let’s go down there and take our picture in front of the bell!”  She was up for whatever and followed right behind me like a little puppy dog.  Now, I should probably also tell you that there was a little chain strung across the stairway down to the lower deck, but again, there wasn’t a sign telling us to stay out.  So I tried to unhook the chain, but to no avail.  Rather than turning around and giving up on the picture, we simply ducked under the chain and walked down the stairs.  We took turns taking pictures of each other in front of the bell, and when we were satisfied with our portraits, we climbed back up the stairs and under the chain.  When we reached the top, a man in a white uniform stopped us and said “you two aren’t supposed to be down here.”  To which we simply replied, “no problem, we were just leaving,” and we turned and walked back the way we came in – going up more stairs and into the auditorium (which was still dark because of a show).  When we returned to our seats, Courtney said in her sarcastic voice “I can’t believe you just walked all the way down there.  Don’t you think the unmarked doors and CHAIN across the stairs should have been your clue that we weren’t supposed to go down there!”  I just shrugged my shoulders and said “oh well, we had fun didn’t we?  If that guy hadn’t shown up, I bet we would have found the pool!”  We got the best laugh out of that! 

I can hear her laughing now…

Love always,

Kelly

Letter from Q

I’m going to post the letter Q sent to Courtney on November 21st, and I hope neither of them mind me doing so.  My family and I thought it was a very beautiful letter and wanted to share his words with all of you.  Q sent this letter to me because he didn’t think Courtney would ever see his message to her on Facebook.  I was able to read the letter to Courtney the same day he sent it, and it brought tears to her eyes – I think they were happy tears though.  I know they are sharing stories together in Heaven now.

Hey Courtney,

I don’t know that you’ll ever get this, but I wanted to say goodbye, if that’s the way it is.  We’ve been through a lot of the same stuff.  I’m sorry that transplant wasn’t the answer for either of us, but I do know that this is no failure. The opposite, in fact.

The writer Dostoyevsky, trying to find meaning among the unthinkable hardship in the Russian gulags, decided that suffering was not only an affliction but also an asset, a way to hone our character, our strength, our faith. he said our task was not to avoid suffering but to try to live up to it.  We live up to it by not letting it consume our inner selves, by not forking our will over to it.

I don’t say this often, but you have lived up to yours.  You have earned the right to let go.

I’ll always remember you for sharing this bizarre cystic life with me and the others.  I’ll remember you also for your kindness and for the way you stood behind me when half of the world was sending me death threats over Pepe. That meant more than you knew.  Now, as you prepare to take leave, to find your well-deserved rest, I remember that none of us is an island, that we each have important legacies, even if we’re just average people dealing with unpleasant realities.  Maybe we don’t always appreciate this because people forget to tell us we have touched them.

I know you have touched many people and are continuing to do so.  I want you to know I am one of them; I didn’t want to forget.

Whether I’m far behind or just a few steps, I’ll be joining you in the not-to-distant future.  I’ll ask for you when I get there.  Peace to you, Courtney.

Q

She’s watching over us

I don’t know about you, but I usually look for some sort of “sign” that tells me my loved ones who have passed are looking over me.  For my Dad, my sign is when something funny happens when I’m all by myself because he loved to play practical jokes; for my Pop, it’s a rainbow because he always whistled “Somewhere Over the Rainbow.”  After Courtney decided to surrender in her fight against CF, I kept thinking, “How will I know when Courtney is thinking of me? What will be her sign?”  For some reason, for me, there seemed to be a theme of Stars surrounding Court’ s passing and I decided that would be my sign – just the stars in the night sky.

This morning, around 5:30am, I took my dog, Abby, for a walk like I do every morning – even though today was the coldest morning of the year.  Being so early, it was still very dark outside and a full moon was shining bright in the clear sky above.  I looked up at the stars, looking for the brightest one to represent my Courtney, and just as I focused on “her” star it jetted off across the night sky.  For a full 4 or 5 seconds, this beautiful star rocketed through the air with a long dust tail trailing behind it.  I have never seen such a bright shooting star, or one that lasted that long in my entire life.  It was a wonderful sight to see, and it made the little hairs on the back of my neck stand up despite the sweatshirt, jacket and two scarves I was wearing.  After it faded away, I stayed looking at the sky and told Courtney thank you and that I love her too.  I know that was her sign to let me know she is okay and she will always be watching over us.

A friend of mine wrote this Eskimo proverb in a card she sent me:  “Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.”

Love always, Kelly

Having trouble breathing

So I got a call today from Lindsay asking if I’ve been down to see Courtney lately.  I saw her on Monday night after 8:00, and she wasn’t very talkative, but she said she was tired.  Otherwise, I think she looked about the same as the last time I saw her.  Lindsay said yesterday was a very rough day for her.  Courtney kept saying that she felt like she couldn’t breathe, and after the nurses gave her some pills to help calm her nerves they still had to sedate her because she just couldn’t handle what she was going through.  I know Megan and GG were there yesterday morning, so hopefully Meg will update the blog shortly to give everyone a better update.  Lindsay said my mom spent the night with Courtney last night, but I haven’t talked to my mom yet to see how the night went.  I just wanted to post a quick update to let everyone know.  Please keep the prayers coming.  I hate seeing my sister suffer like this, and I pray that God will help her.

Love always, Kelly

So It looks like Megan did post – see below.

Are you freakin’ kidding me?

Yesterday afternoon GG was visiting with Courtney and Courtney was sitting in her chair.  She was ready to get back into bed, so the nurse came in to move her.  Apparently the usual nurses (who move her) were not there, so her day nurse and another small lady came in to help her back into bed.  GG said that neither of these two ladies really knew what they were doing – they didn’t have the chair in the right position to make it easy on Court to move from the chair to the bed, and they didn’t use the “belt” which is normally wrapped around Court and it allows the nurses to help Courtney stand up.  GG said she kept telling the ladies they were doing it all wrong, and Courtney even tried telling them they were doing it wrong, but they just didn’t listen.  GG said they basically picked Courtney up from under her arms (rather than using the belt) and then when she went to sit down on the bed, they both seemed to “let go” at the same time, and Courtney landed roughly on the bed.  GG said Courtney landed so hard that her head jerked back, and she asked Court if she was okay.  Courtney just nodded her head, but then GG noticed a lot of blood on her gown.  She went over to check on Court, and she was asking them where all this blood was coming from (GG said it was a LOT of blood).  They pulled Courtney’s gown back and saw that her incision had ripped open!  Nanny said the opening went from her side to the middle of her chest (basically right under her boobie), and the opening was about a 1.5″ – 2″ wide!  The nurse tried jamming gauze pads into it and then taped it up before going to get a doctor.  The doctor came in and said that yes, her initial surgery incision had opened up again.  They added some sort of black tape thing over the wound that plugs into the wall and is supposed to help with the healing.  I haven’t seen it yet, this is just the story I was given from GG. 

So, needless to say, Courtney had a VERY SHITTY day yesterday.  This pisses me off – what kind of nurse works in ICU that doesn’t know how to move patients – or that CAN’T HEAR!  Obviously they couldn’t hear, or else they would have listened to Courtney and GG when they kept telling them they were doing their job wrong!  Courtney is doing all she can to get better, and then the people who are supposed to be taking care of her rip open her incision!   GG said that if it weren’t for the fact that she has a broken arm already, she would have slapped the nurses.  She wanted to, that’s for sure.

I’m sorry for such an angry post, but this is ridiculous!

Kelly

Just a quick note

I just wanted to post a quick note to say that even after receiving latest news, Courtney continues to work hard.  She sent me a text today that said she’s stood up 3 times and she was now sitting in the chair.  Keep it up, Courtney!

Thank you all for your love and support!  I know hearing your comments gives Court a lot of motivation, so I appreciate everyone who continues to follow her progress.

Love, Kelly

Sunday Visit

My visit with Court last night was really up and down.  She’s been having a rough weekend – very swollen and not sleeping well – but I could tell that she’s still trying to stay positive. 

While I was there, a liver doctor stopped by to check-in on her.  He told me that they have determined what is causing the swelling.  Courtney has liver damage which has resulted in Portal Hypertension.  I was relieved to hear that they finally figured out what the cause of all the swelling was from so we could work on correcting the problem, but apparently it’s not that easy.  The only treatment options are to continue draining her every other day or so, or to place a shunt in her liver.  Portal Hypertension (for those who may not know) is basically where the blood flow through her liver is blocked, causing high blood pressure.  Because of the high blood pressure around her liver,  the blood tries to find other ways to get to her heart, which is causing fluid to accumulate in the abdomen.  The shunt basically puts a hole or pathway through her liver to allow the blood to flow again.  However, the shunt does not come without complications.  The doctor didn’t go into all the complications because at this point, Courtney was crying pretty hard.  I hate that she is going through all of this, and I don’t understand why she can catch a freakin’ break!  I didn’t even want to ask Courtney about the complications, because I could tell by the look on her face that it wasn’t good.  She is scared, and every time she hears bad news like this, it takes all the wind out of her sails. 

We talked and cried, and I reminded Courtney that she has come too far to let this thing beat her now.  And she agreed.  I helped Courtney do some leg lifts while in bed, and then she sat up for a bit and did more leg lifts off the side of the bed.  I am so proud that she continues to work on her physical therapy each day, and I will do anything to help keep her motivated!  It’s been 16 days of no Dr. Pepper for me, and I told her I would keep that promise for as long as it takes.  In fact, one thing that made Courtney laugh while I was there was a dream I told her about.  I had a dream on Saturday that I drank some DP, and I felt so bad for cheating that I had to pour out the rest of the can.  I was relieved when I woke up and realized it was just a dream.  I think it’s bad when you start dreaming about DP.  🙂

I love you, Courtney.  You are such an inspiration to me, and I know you WILL overcome this.  You have much to live for, and you have so many people who want to see you succeed.  Keep your head up, Beautiful.

Love always, Kelly

Courtney’s Challenge

Today I had a good visit with Courtney.  Her RT, John, came in and was giving her some tough love about lying in bed so much.  I agreed with John, and told Court that she needed to try standing more often.  I told her that good things come from working hard.  I know standing is very hard for her, but she has to keep trying.  She told me it makes her anxious to stand because she has fallen before, so she’s afraid of it happening again.  I know you’re scared, Court, but you have to keep trying!  I told her that she needs to stand so that she can build her muscle mass back up so she can walk again, because they won’t let her out of the hospital until she’s walking –  and I know she wants out of there.  I said something to her about needing to be out by Thanksgiving, and that made her cry.  When I said it, I was really just messing around with her (trying tough love), but I should have thought about how that would come across from her perspective.  I told her I was sorry and that I didn’t mean to hurt her feeling, because I know she is working hard and we can’t put a deadline on her recovery.  I asked her if there was something I could give up, or if there was something I could do that she knows is hard for me, so that way we can kinda work through this together.  She didn’t have any suggestions, so I told her I would give up drinking Dr. Pepper (which anyone who knows me knows that I’m addicted to Dr. Pepper) and she smiled.  I know giving up Dr. Pepper isn’t has hard for me as standing is for Court, but I want to be able to show her I’m supporting her in some way.  I told her that I wouldn’t drink any more until she’s walking, but that if I found out she went a day without standing that meant I was allowed to drink a DP that day. 

Then my mom called.  After I got off the phone, Courtney asked who it was.  I said “that was mom.  She just got home from church, so that means I need to get home to get the boys.” (Marty was working today, so mom watched the boys for me so I could go to the hospital).  Courtney said, “I don’t want you to leave yet.  I want you to help me stand.”  I was so delighted to hear that!  I told her that wouldn’t be a problem, I would help her stand.  We had to wait a minute while her room was being cleaned, but as soon as she could, she called the nurse in to help her stand.  The nurse and I helped her to the side of the bed and she stood up once.. twice.  The third time she stood, she picked up both feet and the nurse told her she was getting fancy.  She sat down and said, “how many times was that?”  I told her that was three times, and the nurse asked if she was done.  Courtney said no, and I asked how many times did she want to stand – “5 times” she said – and she did.  She stood up 5 times!  That was very hard for Court, and I’m so happy she did it with me!  I told her she did a great job, and she told me she was going to stand again when my mom got down there.  Sure enough she did – she stood another 3 times!

On my way home I called Megan and told her about the pact I made with Court, and she said she would give up drinking DP too.  Then I told my mom when I got to her house, and she agreed she would give it up as well.  I know that might not sound like a lot, but we all drink WAY too much Dr. Pepper and Courtney knows it (so sorry DP, you’re about to lose a lot of business).  Anyway, I hope that by doing this, Courtney can see that we all are supporting her and want her to pull through this.  If anyone wants to join in on our pact, just post what you want to do.  It can be anything, but I wanted to make it something that would make our lives better by being a little healthier.  I hope you will join in on “Courtney’s Challenge!”

Thank you, Courtney, for working so hard today.  You are amazing and I know you will beat this thing – no matter how long it takes.  Stay positive and just keep trying; God will take care of the rest.

Love always, Kelly