Thankful

The Spaghetti Dinner last Saturday was incredible…that is the best way to describe it. Everyone who was involved worked really hard and put everything together. It was amazing. The food was so good, the auction had some really fun things in it, my ballet students did a surprise dance for me, and when I walked in the door everyone was wearing “Lungs for Rachel Slick” shirts that had been designed and screen printed by friends. Jonathan’s band played for the first time since the spring. More than 300 people came out…and the financial support that was raised was just unbelievable. I wish I could say how much that meant to see everyone and to know all the hard work and sacrifice that went into making that dinner happen…I just can’t find the words.

Sunday was Mary’s surprise bridal shower! We thought for sure that she had figured it out…but when she came in the door we realize that she hadn’t! Peter was able to fly in 2 days early to be there as another surprise, so that was really fun! Our dear friend Dana opened up her home and planned all the food and took care of so many shower things. It was a huge help and the shower turned out really well!

On Tuesday we headed to Hopkins again for a 2 hour long meeting with a lady from the transplant team to talk about post-transplant care. Wow. I’ve been in more enjoyable, happy meetings before. It sounds like things are going to be pretty rough during that first year. We all came out of the meeting and were just kind of quiet for a while. Too much to think about. It isn’t really fair to sit a family down and tell them in the span of 2 hours all the hundreds of things that are going to change over the course of the year. Our plan is to take things one day at a time. Today’s our job is to keep going with “normal” life and wait. When the day comes that the job is to drive to Hopkins and get a transplant, that is what we will do. And in the days after that when the job is to take care of my new lungs, that is what we will do. I can do all things (even get a lung transplant) through Christ who strengthens me.

Thanksgiving was a wonderful day! Jonathan, his sister Bethany, and my Dad all ran in the 5K Turkey Trot at the community college. Jonathan beat his personal record and I am SO proud of him!!! We had lunch at the Slick’s house then went to my family’s house for dinner. So much delicious food! After dinner we came home and set up our Christmas tree! I won’t be able to have live plants in the house after the transplant so we decided to go a head and buy a fake tree this year. I thought I’d be disappointed with a fake one, but it really looks lovely! I put up all our other Christmas decorations (Jonathan lets me decorate however I want to and I love it!!!) and we watched the Rockettes Christmas thing! Our first married thanksgiving was better than I could have asked for! What an incredible day.

Here are some pictures for ya...

Roma Renegade playing at the Spaghetti Dinner!

Our tree...fresh out of the box!

 

After we did some unfolding...

Our lovely tree!

- Rachel

Exciting Week

The Spaghetti Dinner is tomorrow night! I can hardly believe all that everyone has done to get it together. I keep hearing pieces of who has donated to the silent auction, who is making home-made sauce, how many people have asked to help…it is just amazing. And then I think about all the people who are coming…my girls from college, old high school friends, my family, church friends, even people I don’t know. One of the most important factors in recovering from a transplant is having a good support system…wow, I think we’ve got that one covered! Thank you all in advance for coming out tomorrow night and for supporting us…and thank you to everyone who has supported us and can’t make it to the dinner. You are all in our prayers and we are so thankful for you.

Here is a link to the Spaghetti Dinner Facebook page if you are interested in coming!
http://www.facebook.com/#!/event.php?eid=133444790037911&index=1

Well, we went back to Hopkins on Tuesday for a check up. I am so thankful I was able to go a whole month without needing to go back because of sickness! My lung function was down just a tiny bit. I’ve been struggling more with tightness and getting out of breath but Dr. Boyle said there really isn’t much we can do about it right now. I can’t go up on my steroids because I am on the highest level allowed for getting a transplant. Antibiotics won’t help because I don’t seem to have an infection. So I’m just doing my best to breath. It is making me really excited for new lungs. When I make the bed and get out of breath, or put away dishes and have to rest, I am reminded that there is an end in sight…next November I won’t be feeling like this. My goal is to run the 5K Turkey Trot at HCC with my Dad and Jonathan next Thanksgiving. It makes me cry to think about. I’ve watched Jonathan run over the finish line several times, and I’ve watched Dad and Jonathan run over the finish line, and next year I get to do it with them!!!

Our next appointment is on Tuesday. We have a 2 hour long meeting to learn about what kind of care I will need after the transplant. Should be interesting…prayers are always appreciated!

And now for some non-transplant stuff! I am SO excited for Thanksgiving and Christmas and the wedding!!! I have lots of Christmas decoration which I bought on black Friday last year, we bought a fake Christmas tree (because I can’t have a real one after the transplant), and I’ve already started Christmas shopping (which is really early for me!). I am so excited to have our first Christmas as a married couple! I promise that I am more excited than all the kids I know : ) Jonathan said we could put the tree up on Thanksgiving so I’ll be sure to post some pictures!

- Rachel

Here is Dad and Jonathan at a CF Foundation benefit 5K last year...

410

As I expected, being put on the transplant list has shaken things up a little for us. I told Jonathan the other day that I was getting comfortable again. I had prepared myself as much as possible for being listed and then we were just waiting for it to happen. I was able to get back into my regular work, cleaning, artwork, helping with Mary’s wedding…those types of normal things. All it will take is that one call…and all those things, my “normal” life will be on hold. God is taking me to yet another level of appreciation for normal things…every time I do the dishes I soak it in and enjoy it…sounds silly, I know. But even this state of normalness is going to be over. And I don’t know when. I’m sorry to sound ridiculous and I really don’t mean to sound sorry for myself. Please forgive me if I do…just sharing what I’ve been feeling the past few days. I am also very excited. Jonathan and I are making a list of all the things we want to do when I am better…the very first one is RUN!!!

After the incident in the middle of the night with Jonathan’s phone, I really tried to settle myself and not freak out every time I hear a phone! Well, we had another scare! On Wednesday night we were driving over to my parent’s house around 7. My phone started ringing and when I pulled it out of my pocket I saw it was a 410 number…and 410 is the Baltimore area code. I told Jonathan what it said and answered the phone. After a few seconds I realized that it was a recorded message reminding me of my upcoming appointments on Tuesday. I told Jonathan what it was and I just burst into tears. I was so angry. It is not fair to call a girl on the transplant list from an unknown Baltimore number at 7 at night to give her a stupid reminder!!! Sheesh!!! I was so upset that Jonathan pulled over and we just sat there for a minute while I tried to start breathing again. My goodness. What an adventure this is starting out to be!

- Rachel

On the List

Today is our 4 month anniversary!!! Being married is so incredible. I LOVE cooking dinner, I LOVE our apartment, I LOVE my husband!!! Even though things have been so difficult, I have never been happier! God has blessed me so much with Jonathan. He is my superhero. I think one of my favorite things about him is that even when our circumstances are so out of the ordinary, so scary, and so unpredictable, Jonathan never second guesses. He just faces each step with me…and he loves me. I wouldn’t trade my life for any other person that has ever lived because I know that God planned for Rachel Slick to be married to Jonny Slick…and no other person gets to say that.

So, happy 4 months Punkinhead!!!

We do have other news too…as of yesterday at 2:30 pm I am officially on the lung transplant list. One of the coordinators called me yesterday and said, “Well, I’m going to flip the switch in about 2 seconds and then you’ll be activated!” She told me that from now on my cell phone always has to be on and with me. I woke up in the middle of the night and heard a buzzing sound in the living room. I realized it was Jonathan’s phone and I started thinking, “What if it is Hopkins?! What if they tried to call me and my phone didn’t work and they are trying to call Jonathan’s phone?!” And so the waiting begins…

- Rachel

The Big Day

My teeth have been out for 2 weeks…time goes by so fast. I had another follow up appointment with the oral surgeon today. He said things are looking pretty good. I still have really deep holes where both of the bottom teeth were. Last week he gave me this water squirter thing to make sure they stay clean. Let me just say, I feel like a chipmunk with all the food that can get stashed down there…nasty. I’m still having issues with pain. I feel like all I’ve done for the past 3 weeks is complain! I told my mom that I can deal with the no-breathing thing…I’m used to that…but pain, not so much! The surgeon said that he isn’t surprised that it is taking this long to feel better. I have another follow up in 2 weeks.

I talked to one of the transplant coordinators and she said that they had received the ok from the oral surgeon. His recommendation was to wait 3 weeks (if possible) before I have any more surgeries. So, they are planning to list me on November 9th...the big day. Everyone keeps asking me how I feel about it. I don’t know really. I guess I am as prepared for it as you can be. I’m so excited for the new lungs. I keep thinking of everything I will get to do, and all the things I won’t have to do. At the same time, I just want to skip the process and be on the other side because when I really think about it, it kind of scares me.

It reminds me of a scene from Harry Potter and the Order of the Phoenix when Harry is talking to Luna Lovegood. He is talking about how he feels like no one really believes or understands what he has gone through with Valdemort. Then Luna says to Harry, “But I suppose that's how he wants you to feel…if I were You-Know-Who…I'd want you to feel cut off from everyone else…because if it's just you alone, you're not as much of a threat.” When I think of all the people that have come along side us to encourage us, to pray for us, to support us…I am overwhelmed. Thank you for reading this blog and for all that you have done for us. You have had such an impact. I don’t feel cut off…I feel so supported!

In other news, we had such a fun weekend! Friday night was supposed to be trick-or-treating…but after 2 hours, there were no kids. Jonathan was so very sad. Mom had pulled out Mary’s old elf costume and he actually sat there for the entire 2 hours wearing it. Don’t worry, I’ll include a picture! Blizzie also had a little costume ; ) On Sunday Mary and her dear friend Tamara got in. As a gift to our family, Tamara drove from Ohio to Chicago to get Mary, then they drove back to Ohio with Mary and stayed at her family’s house for the night, then drove all the way to Maryland. I spent all of Monday cleaning and cooking. I asked Mom, Mary and Tamara to come over for dinner. It was my first time having people over for a meal! I think everything was pretty good…no major catastrophes anyway! My good buddy Jill even stopped by and we all had chocolate mousse for dessert!