The actual Avril (for comparison purposes)

For those of you unfamiliar with Avril. (Didn't we do a good job?)

Happy Halloween!

Imagine our surprise when Avril Lavigne, Hannah's favorite rock star, stopped by the house last night on her way to a Halloween Harvest Party. She was even prettier in person than on her DVD!

I think Scott and I had more fun preparing our pop diva than even she had at the party. Isn't Halloween great?

Trick or Treating starts tonight at 6:00. I am hoping I will be able to ride along in the wheelchair, but it will depend on how cold it is. At least most of the 6 inches of snow we received two days ago has melted away and the sun is shining, so hopefully it won't be too cold for me.

The fun has begun! Please enjoy this Halloween!

Check out Hannah's Birthday Slide Show

Hooray! I finished the slide show this morning and am so excited to share it with all of you. It took me a lot longer than I had originally expected, but I am really pleased with the final product. It is long, three songs worth, but there were just so many great photos to share. I put it at the end of my blog so I could make the slides as large as possible, so be sure you scroll down to see it.

Now, I can focus on just enjoying the next few days with my little girl. The fun starts tonight at her Gramma Gail's church's Harvest Party and keeps going until Sunday afternoon. Pray for my stamina.

I will share pictures as I have them. Love to you all! Nancy

A Better Day

Hello!

Today has been my best day in quite some time. I have actually been awake most of the day. I have spent the last couple of days working on a special slide show for Hannah's Birthday coming up this Sunday. I can't wait to share the finished product with you.

It will be a busy end of the week with Halloween and then Hannah's Birthday, but it should be a lot of fun and I will definitely share pictures as the week progresses.

Thank you for all of the uplifting and encouraging e-mails you have been sending my way. I have so many terrific people in my life!

I love you all! Nancy

It's In the Valleys I Grow

This week I stumbled through a valley. Each valley seems to get deeper and darker and the stones only grow bigger, yet I know I must walk on. My physical suffering causes my mind to doubt, to fear, to become saddened and desperate. These internal struggles allow me to lose sight of what really matters, God.

I went to my bookshelf looking for answers, looking for assistance, looking for guidance... the book that caught my eye was And the Angels were Silent, by Max Lucado. I thought this was appropriate, because my angels had grown quite silent this week, not because they had stopped singing, but because my ears had become plugged.

I felt numb inside and needed something more than any anti-depressant could give me. I read Max's poignant words and stories illustrating the last week of Jesus' life and I cried out, reached out, begged God to please come and find me. I was lost in my valley and needed His comfort, His support, His embrace.

Matthew 21:21 called out to me from the pages of this wonderful book, "If you have faith, it will happen." Jesus told his followers, "If you believe, you will get anything you ask for in prayer."

I DO BELIEVE! God wants me to fly, He wants to set me free from the bonds of my physical suffering, but I have to free myself from today's fears.

I need you to know, that I have down times too, you aren't alone. I have doubts, fears, insecurities and I need to be comforted and reassured.

As you are well aware, by now, music is a big part of my life and has become a tool that has helped me to re-focus, pray, meditate, and find peace. In the midst of this week of suffering, I found this Casting Crowns song "Who Am I". It spoke to me loudly and brought peace to my heart; I wanted to share it with you. Please take the time to listen to the lyrics.

"Who am I?

That the Lord of all the earth, would care to know my name,

would care to feel my hurt.

Who am I?

That the bright and morning star, would choose to light the way,

for my ever wandering heart."

Who am I? Who are you? We are God's beloved children and all we need do is reach out our hand and He will pull us up, catch us when we fall, and love us no matter what.

Those mountain tops are glorious, but it is certainly in the valleys that I grow.

May God bless you this week! Nancy

(Aunt Deb, thank you for sharing the beautiful pictures you took with me!)

We Hit 10,000!

Congratulations friends, today we reached 10,000 visits! I have heard from my 10,000 and 10,004th visitor, but still need to hear from 10,001-3. Congratulations so far to Lorain and Amy!

All of you mean so much to me; I hope you realize how much. This blog has given me so many things, some days it has been my only reason to get up and get moving, just knowing you are all waiting to hear from me has given me purpose and motivation.

Thank you for blessing me with your love, friendship, kindness, faith, and hope for a better future. This fight has not been mine alone, I have an army full of dedicated soldiers all praying for my strength to win this battle, I couldn't be more blessed!

God bless and keep you all! Nancy

Cammi is Safely in Pittsburgh

I just received word that Cammi did arrive safely in Pittsburgh last night. She is fighting a cold which may prevent her from being activated on the list for a couple of days, but I was just so thankful to hear she had arrived safely. Please continue to keep them in your prayers as they find a place to live and settle their family in Pittsburgh.

All my love! Nancy

The Medivent RTX

Hello!

My friend Becky had asked about the RTX (that is the external lung machine I talked about a few weeks ago) and whether or not it has been FDA approved yet. I guess with all of the craziness of last weekend, I never got to report that it has been FDA approved. Now the issue will be insurance and convincing insurance to cover it. I am not sure the cost, but I know my VEST which we got 9 years ago cost $16,000, so I can only imagine how much this may be.

I guess part of me is hoping I will get new lungs before I need to consider this, but I know Dr. Cronin and Dr. Pilewski are working on getting one for me and with the way I have been feeling, I would certainly welcome it!

No New Infection

Hello friends,



The good news is, I do not appear to have an infection currently, my white blood count is within normal limits. My Hemoglobin and Hematocrit (red cell counts) are low because of all of the bleeding and are causing my already anemic body to feel pretty poorly. If I continue to struggle, I may need a round of IV iron, but we are hoping things will resolve on their own. My doctor has continued me on the IV antibiotics, we need to keep my lungs infection free so I will be able to be transplanted if another set of lungs becomes available.



I was recently tagged by one of my new friends and though I am not sure who to tag next, I thought it might be fun to participate, I don't often get to just be fun and silly here.

Here are my random or weird facts, things you may not know about me:

1. I used to sing in Scott's rock band before I got pregnant with Hannah (and I absolutely loved it!).

2. I was the President of my local New Kids on the Block fan club (MANY years ago, though I do think it would be a real kick to see them now.).

3. My friend Amy and I were in the "Lay Your Hands on Me" Bon Jovi video (though you would have to know where we were in the crowd to see us).

4. I have a not so secret crush on Johnny Rzeznik of the Goo Goo Dolls and have seen him in concert 4 times. (Don't worry, Scott is well aware of this crush, just as I know about his crush on Meg Ryan).

5. I think I like the High School Musical movies even more than Hannah does and can't wait to see HSM 3 (it comes out this Friday!).

6. I LOVE to have my feet tickled!

7. Although many of my favorite inspirational songs seem to be by country artists, my favorite music is new alternative rock. I am particularly fond of female artists like Gwen Stefani, Kelly Clarkson, Katy Perry, Avril Lavigne, Evanescence, Kate Nash, and Paramore.


I hope you are all doing well and having a good week. We actually had snow last night and today, not enough to stick, but Hannah sure was excited!

Love to you all! Nancy

My New Goal

Hello friends!

I have had a difficult few days. I have had more lung bleeding causing lung discomfort and exhaustion. I am awaiting the results of blood work drawn yesterday to see if my lungs have become infected again. I have been on IVs for over 4 weeks now, so I really hope there isn't a new infection, but if there is, we will deal with it.

I received a beautiful letter from a new friend recently and one of the questions she asked me was what is my current goal? I thought that was a great question and wanted to share my answer with all of you.

As most of you know, I have really tried to turn this experience into one that can benefit and help others. My new book is my way of reaching out to others dealing with chronic and terminal illness and trying to help them in the only way I currently can. All of the proceeds from this new book will be used to purchase books to donate to organizations that serve people with chronic and terminal illnesses.

So, my new goal is to donate as many of my new books as possible. If you would like to help me with this goal, you can purchase one of my books and donate it to your local Hospice, to a doctor's office, to a church, anywhere you think it may reach a person who is ill and in need of support.

Thank you for any help you can give me in reaching my latest goal! All my love! Nancy

My Friendship Celebration!

This week is my week to celebrate all of you! I have made so many new friends and of course have amazing old friends and I want you all to know how much your prayers, support, and love have meant and continue to mean to me!

This week my blog will reach 10,000 hits, unbelievable! As a thank you to all of you, I would like to offer "blog candy" to my 10,000 -10,004th visitor. Here is how it will work. Each time you log on this week, scroll down to see my counter on the right hand side of the screen. If you see one of the numbers between 10,000 and 10,004, you are a winner.

E-mail me at nancymatthews74@yahoo.com with the subject 10,00(0-4) and I will send you one of my books, you can let me know which one you would prefer in your e-mail. Please be sure to include a mailing address for me to send the book to.

Obviously, if I get the call for lungs before we reach 10,000, I won't be able to send the books out until after I recover from surgery, but I will get your book to you as soon as I can.

I am also so happy to be able to report that my new book is now available for order through CreateSpace. In a few days it should be available at Amazon as well. I had really hoped to complete it before transplant and God helped me to do so. To place an order, visit my website at http://www.nancyamatthews.com/ or click the picture of the book above.

My love, friendship, and thanks goes out to all of you and I dedicate this week's upbeat song to you, you have been there for me to lean on and I only hope some day I can return the favor! Nancy

Prayers for my friend Cammi & her family

Dear friends, I would like to introduce you to my CF Mom friend, Cammi. She and I connected a few months ago and are both awaiting lungs at UPMC. She has become a dear and special friend who I have been able to confide in, cry with, and just share experiences and stories. Cammi is a wife and mother to two beautiful 6 year olds and they need her every bit as much as Hannah needs me.



Cammi and her family are in the process of preparing to move to Pittsburgh. This is an extremely difficult venture, especially in Cammi's current medical condition, so they need your prayers. Once Cammi arrives in Pittsburgh, she will be at the top of her list and will hopefully get called for lungs soon. I am hopeful we may both be recovering with new lungs at the same time.


Cammi and her family have sent so many prayers my way, now I ask you to please do the same for them. Her family needs her!

Thank you all! Tons of my love! Nancy

I'd Like to Welcome our Newest Family Member

I am so excited to share pictures of our newest family member Daniel Thomas Beuhler. This is my cousin Megan and her husband Kevin's first child and he is absolutely perfect! Congratulations to the whole Delaney/Beuhler family on such a wonderful new addition!

An overview of Saturday

I know many of you are wondering what we experienced on Saturday, so I wanted to give you a brief summary of the events of the day.

My parents had gone to NYC to surprise my mom's friend Sr. Peggy McCabe who was celebrating her 50 year anniversary of entering the Holy Union Sisters (she and my mom had entered the convent together), Congratulations Aunt Peg!

Scott had gone for a motorcycle ride and Hannah was out playing with a friend, so I was home all alone when the call came at 3:50 Saturday afternoon. As soon as I heard my coordinator's voice, I knew this was it, and I must admit, I panicked! Of all days for me to be all alone! Luckily, Scott pulled in soon after I hung up with Melissa, so I handed him the pilot list for Angel flight and proceeded to run around in circles, not sure what to do first.

We were able to get a hold of Joe DeMarco who happens to be Julie's Angel Flight pilot too (God works in great ways) and though his plane was in the shop, his partner was willing to fly us to Pittsburgh.

My brother-in-law, Jeff, came home from his job at the ER and drove us to the Olean airport where my Uncle Tom, cousin Maura, and her son Burke met us. They were there to see us off as Joe and his partner loaded us up and flew us away.

It was a beautiful 45 minute flight and Joe was so good about explaining things to us about the plane, the different controls, and just keeping our minds occupied. We were met by a limo at the airport and taken to the ER at UPMC.

Scott and I both had envisioned me being wisked away immediately to surgery, but it was nothing like that. I was admitted and taken to a room where blood was drawn, vitals were taken, and an EKG was performed. Dr. Pilewski stopped in to see me and reported that the initial bronchoscope and X-ray of the donor looked good, but warned us there was still a 1/4 to 1/3 chance the lungs would not be good.

I was then taken for an X-ray and was brought to the PACU to be prepped for surgery. In the PACU I signed releases, had an IV started in my hand, and an arterial line started in my wrist. If they had received word from the donor hospital that the lungs were good, they would have taken me into the OR, started anesthesia, and finished the prep process so I would be ready as soon as the lungs arrived.

My sister-in-law had driven our car to Pittsburgh, so she arrived at the hospital around 11:00 and my parents arrived from NYC around 12:30, so everyone was there in the PACU waiting with me when we received word that the lungs were not going to work. My parents left to find a hotel and Leslie, Scott, and I decided we would just drive home.

It all almost seems like a dream now. I was so scared, yet hopeful for what the future was going to bring. I know that we will be better prepared next time and hopefully it will be a little less stressful. I am just so glad to know that the call will come and that when it does, we can get there safely!

Love to you all!

I'm OK!

I know many of you are probably worried about how I am doing, but I want to assure you, other than being exhausted, I am really doing okay. I am more sad than anything about the loss of the donor and the grief her family must be experiencing. Please keep them in your prayers.

I wanted to say a special thank you to my Angel Flight pilots, Joe DeMarco and his partner who donated their plane and afternoon to get us to Pittsburgh. These pilots are true angels and they made our flight comfortable and enjoyable. God bless you both!

This week's song is dedicated to Scott. I hope all of you get to experience the kind of love I have felt from my wonderful husband. Through all of this he has been by my side, holding my hand, and smiling supportively. As scared as I was, he was my rock and never faltered! I love him more than words could ever say.

Keep those prayers coming! Love to you all! Nancy

I am so sorry to have to report that at 2:00 a.m. this morning, we found out the lungs of the donor were not going to work for me. Though we were all extremely disappointed, we do want my new lungs to be as healthy as they can be. We were discharged from the hospital at 3:30 a.m. and since I didn't have an oxygen system we decided to drive home.

We are very tired. We arrived home at 8:00 and went right to bed.

I will tell you more later, but I wanted to let you know that I did not have surgery last night. Thank you for your prayers, everything went perfectly for this "trial run" and we will be better prepared the next time. Love, Nancy

WE GOT THE CALL

We are on our way to UPMC, please pray for us!

TGIF

Hello friends!

As is always the case, my good day took a lot out of me and I am still trying to recover. It is unfortunate that a good day has to be followed by several bad days, but it isn't going to stop me from continuing to shoot for more good days.

I am so happy to be able to let you know that my friend Betty received word from her doctors that the mass in her head does not appear to be a tumor and she will not need to undergo any type of cancer treatment at this time. They will keep an eye on it, but we are all thrilled and relieved! Thank you for your prayers; miracles do happen, every day!

I wanted to share some promising news with you. My doctor from Buffalo, Dr. Cronin, called me on Wednesday to let me know that the Medivent RTX should be FDA approved very soon, possibly within the next week. He really feels this would benefit me and give me some relief as I await transplant. I will keep you posted.

I hope you have all had a wonderful week and thank you, again, for all of the Birthday messages and greetings you sent my way!

I thought I would leave you with this cute picture of my two animal girls, Sweet Pea and Oreo. Can't you tell they are BFFs? Love to you all! Nancy

A WONDERFUL Birthday!

I can't begin to express how wonderful my Birthday was. So many of you sent e-cards, real cards, Birthday e-mails, balloons, flowers, presents... I couldn't have felt more loved or appreciated! The best gift I have ever received is being loved by so many wonderful friends and by a terrific family!

Though I am REALLY tired today, it is a good tired, a satisfied tired. There isn't one thing I would change about the last few days (though I would have added a phone call from Pittsburgh) and it truly makes me feel like 34 will be my BEST year yet! Thank you all for making my Birthday so special! All my love! Nancy

We Made it to Pumpkinville!

We did make it to Pumpkinville yesterday, Hooray! It was a beautiful day and we had a great time. Today, I am laying low in preparation for my REAL Birthday tomorrow!


Still growing.... The grandparents. Simon, Reilly, Lydia, & Hannah


Who's that girl? My family!



Really cute is right! What a scary duo! Hannah & Gramma Gail



Looking good in braids! Oh, so sweet!

Birthdays are for Celebrating

Every year, for as long as I can remember, I have looked forward to my Birthday. My parents always made a big deal about our Birthdays and I always had a big party. Obviously, the parties have become fewer, but the excitement and anticipation have never died. It is the one time in the year no one in my family can complain about having meatloaf, Kraft macaroni and cheese, and corn (my traditional Birthday meal). It is a day that is all about me, and I LOVE it!

It saddens me, as we get older, how our Birthdays almost become a dreaded thing. 30 is quite traumatic for some people, kind of like the milestone between youth and maturity.

Our Birthdays should always be a time to celebrate, whether we are 2 or 82. It is a time to give thanks for the years we've had and the blessing of life. It should be a time to reflect on where we've been and where we hope to go. To remember the good times and thank God we made it through the bad times.

So, this year, really cherish your Birthday, I know God certainly does!


Happy 40th Birthday today to my dear sister-in-law Leslie, I love you! Nancy

An early Birthday celebration

Tonight we started the week long celebration of my Birthday (LOL!) I actually got out of the house and went to Mickey's (our favorite restaurant owned by our wonderful Uncle Tom and Aunt Debbie Weatherell) for dinner, it has been a while since I have eaten out. Uncle Tom even brought me a bowl of my favorite New England Clam Chowder to celebrate the big event!





When we got home, Hannah and Scott carved our first Halloween pumpkin of the season. We weren't here for Halloween last year, I was having my transplant evaluation in Pittsburgh, so we have a lot of pumpkin carving to make up for. : ) Didn't they do a great job?





My big goal for this weekend is to be able to go to Pumpkinville with the whole family tomorrow. I haven't been in two years and LOVE taking Hannah there. Please pray that I have the strength to go!

There will be more pictures of minnie me to come.... Love to you all! Nancy

Hello friends!

I have heard from so many of you in the last few days, thank you, I really needed that! I have been very down. It is difficult to be sick for so long and there are days it feels like my call for new lungs may never come. But, knowing I have so many good friends who love me, helps to bring my spirits up.

My dad flew in last night to be here to celebrate my Birthday. It is so nice to have him back, we have missed him! I know Hannah is looking forward to seeing him when she gets home from school today.

It is hard to believe I will be 34 on Tuesday. Last year at this time, I wasn't sure if I would be here for this Birthday. I feel blessed to have been given 34 wonderful years! When I was diagnosed with CF the average life expectancy was 18, boy have we come a long way!

I wanted to have a big birthday party to celebrate my life, but my family talked me out of it. It would be too much for me at this time and really was wishful thinking on my part. But, I promise, when I come home with new lungs, we will have the biggest party EVER! I have so much to look forward to!

In preparation for my Birthday, I have been looking at old photos, and thought I would share some with you. So, here is the first, it is hard to believe I was ever that small!

Love to you all! Nancy