Christmas Decorating

Dear friends,

I hope you all had a relaxing holiday weekend. We got out our Christmas decorations which I have to admit was bitter sweet. It is very important to me that Hannah have a happy Christmas, even with all that is going on, so I was bound and determined to leave this house decorated for Christmas.

Of course, we couldn't put out everything, that just wasn't practical and our 9 ft. tree was too overwhelming to think of putting together and decorating, so Scott found an inexpensive 6 ft. tree that my dad assembled and Hannah (with a little help from me) decorated. We were careful to only use non-breakable ornaments, keeping in mind we have a kitten who is fascinated by her first Christmas tree. We took out a few special ornaments to take to Pittsburgh for the little 3 ft. tree we will have in our apartment there that Hannah will help us decorate next weekend.

It was a sad weekend for me. First, knowing I will not be home to celebrate Christmas was looming in my mind. Second, I only had enough energy to do a little decorating myself, something I love to do. Third, I had to put aside my need for control and allow others: my mom, mother-in-law, and Hannah to do the decorating I take such pride in.

It was also a happy weekend, however. I enjoyed watching Hannah's joy as we opened the different boxes and treasured Christmas decorations and ornaments were uncovered. She did an awesome job decorating the tree and was so proud of what she had accomplished.

Hopefully I will be able to post some pictures of the tree decorating tomorrow.

All my love! Nancy

A Thanksgiving Miracle

I would like to begin this post by saying my prayers go out to all of the people who are being affected by the recent terror attack in Mumbai. I will never understand why some people feel the need to harm others. May we all keep those who are being held hostage, those who have been killed, and the families who are grieving in our hearts and prayers.

Miracles come in all shapes and sizes, from the raising of Lazarus to a beautiful sunrise. Sometimes we are too busy to notice the miracles that are happening all around us and that is truly unfortunate.

Yesterday was a day of miracles for me. I so desperately wanted to have a good Thanksgiving. Last year I was so sick from my gall bladder that I couldn't eat at all and was pretty miserable the whole day. This year, I just wanted to be able to eat, even a little, and be able to enjoy my family.

God came through with shining colors (as He always does). I was able to shower and get "dressed up" (my typical wardrobe lately consists of sweats or pjs and my robe). I took a pain pill and my anti-nausea medicine and we made our way over to my mother-in-law's. Scott's whole family was there, and dinner actually smelled good when we walked through the door.

I piled my plate high and Scott chuckled as he looked at all the food, joking that he would be amazed if I ate even 1/3 of it. Guess what, I ate about 3/4 of it and IT TASTED GOOD! I know that seems like a silly thing to say, (you are probably thinking, of course Thanksgiving dinner tasted good) but food brings me no pleasure lately. I eat because I HAVE to, not because I want to. I can't tell you the last time I really enjoyed a meal before yesterday. So, being able to enjoy this Thanksgiving dinner was a special miracle for me.

After dinner I passed out on the couch for about an hour, but woke up and felt ready to play Pictionary with the Family, I even got to draw twice! What a blessing!

Though I was in bed by 7:30, I had a full and wonderful day. I hope all of you had a happy and blessed Thanksgiving as well! My love to you! Nancy

A Thanksgiving Message for You!

There are times in our lives that we don't always see

God's blessings right away.

Sometimes, they are disguised,

and the things we once thought of

as bad, or scary,

turn into a wonderful blessing.

by: Janet Lynn Mitchell

May you always be richly blessed by His never-ending goodness.

Happy Thanksgiving!

My love and prayers go out to all of you and I give great thanks for the love and support you have given to me. May you have a very happy and blessed Thanksgiving! All my love, Nancy

A Very Special Santa Letter!

I got an e-mail yesterday from my dear friend Debbie, and she shared the most touching and wonderful story with me. I asked her if I could share it with you.

Debbie and I grew up together in Jackson Hole and have been best friends for years. She has two beautiful children, Blake and Britney, who I love like a niece and nephew.

Before I got too sick to travel to Jackson, we used to plan our summer trips home for the same time so we could spend lots of time together. Hannah loves Debbie and her family, and we have shared some wonderful times together.

Blake is one of the most compassionate, sweet little boys I have ever met. He is a treasure and I love him very much, so you can imagine how moved I was to read Debbie's message:

Dear Nancy,

I wanted to share something very heart warming and special. In Blake's class at school, they are writing letters to Santa. In Blake's letter, he asked Santa his usual questions and then asked him for his one thing that he wants for Christmas. He then asked Santa for this: My mom has a friend who has bad lungs, and I want to ask you to give her new lungs.

What a beautiful thing, this little boy looked beyond himself and asked Santa for something for someone else. That is what Christmas is all about! Thank you, Blake, for your special request, and for your example of true Christmas spirit! May we all remember the true meaning of Christmas during this holiday season.

All my love! Nancy

God bless the home-makers.

I can't think of a more important, yet too often unappreciated, job as that of the home-maker. You know who I mean, don't you? The person in your family who keeps things running smoothly and makes sure everyone is cared for and has what they need. This is the person who keeps clean clothes in the closet, warm meals on the table, dirty dishes out of the sink, every one's social calendar organized, and makes your house a "home". When was the last time you truly appreciated all this person does for you? When was the last time you thanked him/her?

Unlike other professions where a job well done is rewarded with promotions, bonuses, or raises, the more successful a home-maker is, the less likely anyone is to notice. When things are running smoothly in our homes, we tend to take for granted the person who is orchestrating that smoothness. It isn't until that person is unable to perform that all they do for us comes to light.

Why do I bring this up today? Because I used to be that home-maker. My life was devoted to the care of my family. I went to work each day to make money to help support us, then I came home and worked all night and weekend taking care of my family's needs. I will admit, there were times I felt extremely unappreciated, never unloved, but sometimes taken for granted.

Last night I saw this unappreciated feeling in my mother's eyes, and it made me very sad. She has given up 8 months plus of her life to come and take over for me. She has become our home-maker and my care provider. My family loves her dearly, yet they often take all of the wonderful things she does for us for granted. I am aware of the sacrifices she is making, because I was once making them myself.

So, today I want to remind you all to appreciate the home-makers in your life, don't allow them to feel unappreciated or taken for granted. Take the time to thank them, to help them, to give them a much needed break. What they do is a job filled with love, caring for the people who mean the most to them, and they should be praised and honored.

To my mom, thank you. Thank you for giving up your life to be here for me and my family. Never doubt that you are treasured and loved! I couldn't feel more blessed or be more grateful to have you as my mother. Nancy

I Did It!

I had one goal for this week, and that was to see Hannah play basketball. This is her second season playing and I have yet to feel well enough to go to a game. Yesterday I was determined, no matter how lousy I may feel, that I was going to go to the game, and I DID! I may feel like I was hit by a bus today, but boy was it great to see my little girl play. She even made a basket!

Hannah seemed very excited to see me there. She didn't know I was coming, having gone home after school with a friend for a sleepover party, so it was a big surprise.

So, Hannah had Scott, me, and a cheering squad of girlfriends to support her at the game.

This morning when Hannah got home from her sleepover, she brought me a special surprise. The girls had made pillowcases and all four decorated a special case for me. I was so touched and thrilled to receive such a special gift.

So, today is a day to rest. The fire is burning in the fireplace and there is a beautiful snow cover outside. It is the perfect day to hang out in PJs and drink hot cocoa. Scott will be hitting the slopes for his first snowboarding adventure of the winter, it is hard to believe there is enough snow to ski, my how time flies by.

I hope you are all having a wonderful weekend! Love, Nancy

We put a deposit on an apartment.

Hello friends! Yesterday was a LONG day. Scott and I took a road trip to Pittsburgh to look at an apartment. We had to choose the day a blizzard was raging through PA to do this, we can never do things the easy way, but we did get there and home safely and were pleased with the apartment we looked at.

We will be moving in two weeks to West Mifflin, PA. The place we will be living is called Southpointe Towers and is located in a very quite neighborhood in Pleasant Hills, about 25 minutes from UPMC.
(Obviously, we will not be using the pool, much to Hannah's disappointment!)

The manager of the building was extremely welcoming, as were all of the staff and tenants we met. It is a very quiet building that seems to have mainly older residents and I got the feeling it is very much a community. They are currently working on a bake sale to raise money for a wheelchair for one of the tenants and we were invited to the community Christmas party.

(The lobby)

The apartment we chose is a two bedroom with 1 1/2 baths. It is on the second floor and has a nice wooded view (there is an elevator). It will not be ready for two weeks because they will be replacing all of the carpeting, the kitchen floor and lighting, replacing the kitchen appliances, re-painting, and cleaning every square inch. (I met the woman who cleans and she assured me she would have it spotless when we arrive.)

(This is approximately the floor plan of our unit.)

Though I dread the thoughts of moving away, yet again, after our scary drive home last night in the snow, I know this is the best thing to do. Hannah and Scott will come as often as they can and at least, now, we will have room for everyone to stay in our apartment. We have also set up a camera on our home computer so that Hannah and I can see each other each night on-line, hopefully that will make the separation a little easier. She has two weeks off for Christmas, so we should get some good time together then as well.

Now I can just relax and look forward to Thanksgiving with the family, knowing that at least we have a place in Pittsburgh.

Love to you all! Nancy

Sweet Pea

Sweet Pea was feeling left out, so she wanted to pop on and say hi!

Sorry to those of you non-cat lovers out there, but she sure is CUTE! : )

More Sad News...

Hello!

I would like to begin by apologizing for my blog. I decided to try a new template today and basically wrecked everything, way to go, Nancy! I am trying to figure out how to restore what I somehow deleted and hopefully will have everything back to normal soon.

We received word last night that one of our friends from Family House passed away yesterday. Her name was Tammy and she and her father had moved to Family House soon after we did in May. She had had a small bowel transplant, I am not sure how long ago, but her organs had gone into rejection in May when we first met. She waged a long battle with the rejection of her new organs, but just wasn't strong enough. My heart goes out to her family; she leaves behind two children (her youngest had graduated from High School in June) and a grandbaby. Tammy's father Ken and mother Judy have been very supportive of me and had visited me during my hospitalizations at UPMC. My prayers go out to all of them. I cannot be sad for Tammy, I know she is finally at peace, in God's care, and can rest with no more pain and suffering.

Thank you to everyone who has offered dressers, you are all terrific! I think we are all set there, but I will keep you posted as we think of other things we may need.

All my love! Nancy

Don't Give Up!

My heart is aching today. It seems like each day I learn of a new sorrow that someone near to me is facing. So many of you have great challenges you are trying to deal with. They may not be physical, but they are tremendous emotional trials.

You may be waking up each day with a spouse who no longer loves you or a marriage that just can't continue to work. You face the fear of life on your own, of telling your children, of filing for divorce. These are enormous burdens to be facing and my heart aches for you.

With our failing economy, some of you are facing unemployment. The comfortable life you have known has been jerked out from under you and you are facing debt, a mortgage, and the need to change your entire life's direction. Your family who has depended on you to provide them what they need is suddenly looking to you to save them, yet you don't know if you have the strength to save yourself. My heart aches for you.

I have too many friends who have faced or are facing the fear of cancer. It seems to have no boundaries in who it can affect. Some of you have survived the initial battle, but always wonder when it may return. Others of you are deep in the trenches, fighting through chemo and radiation, hoping all of this pain will end in remission, but having no guarantee of victory. My heart aches for you.

Still others of you are trying to cope with a child's difficult diagnosis. Their total care and well-being are in your hands and you are forced to fight each day to get them the rights to an equal education, to respect from their peers, to understanding from their teachers, to quality health care. In the day you are their rock, but at night you cry yourself to sleep wondering what kind of life lies ahead for them. My heart aches for you.

No wonder there is so much sadness, anger, and fear in this world. Bad things are happening to us and all around us every day. How can you not feel anxious about what evil might befall you or your family around the next bend in the road? How can you be optimistic about the future when you aren't sure you will survive the day?

Last week when I was so ill, a thought occurred to me. It would be so easy to just give up. It is the fight that is so painful, why not just roll over and stop caring. I'll tell you why, because that is the EASY way, that is the way the evil in this world wants us to turn. When we give up, we lose our FAITH. Without it, we are totally lost.

It is easy to become angry with God, to doubt He exists, to question His motives, but it is not God who is bringing us misfortune, it is life. God remains constant, there in good times and bad. All He asks is that you believe, no matter how bad it gets, you believe. If you believe, He will rescue you, maybe not today or tomorrow, but He has promised you a life everlasting in His love, where no pain can ever touch you again.

It is easy to become desperate when you have no hope of change. I may be able to do nothing more to comfort you than this, but I promise you, the pain and suffering will end and for your faith you will be greatly rewarded.

Until then, you have me, and I love you and I'll pray for you. You have many who are rooting for you, who are lifting you up, who are willing to offer their support and friendship. I KNOW this, because I have each of you. Some of you have only recently entered my life, others of you have always been there, but you are THERE, what greater gift could you give me?

So, when you feel utterly alone, you remember my promise, my faith in you, and my love and friendship. Nancy

Thank you for walking with me on this journey!

It is amazing to me how in the last few months I have met so many new friends. I never realized how many people you can meet even when you're sick and housebound. This blog has become my connection to so many wonderful people and as difficult as it is some times for me to keep writing, it brings me great pleasure to hear from those of you who have chosen to walk with me on this difficult journey. I have never felt alone, as bad as things have gotten, I know your prayers, thoughts, friendship, and love are surrounding me; thank you all so much for that!

Though I am still feeling pretty crummy, I am doing much better than I was earlier this week. Obviously the new antibiotic combination is helping and I am grateful. At least this weekend, if the call were to come, I could accept it because any infection seems to be under control and that brings me relief, I would hate to think of missing an opportunity for lungs because of an infection.

We are starting to try to plan for what we will need to bring to Pittsburgh. It does not sound like we will be able to get a furnished apartment, so we are trying to figure out what we have that can work for furnishings. My friend Rose suggested that I ask all of you for help if we need any furniture items, so, here goes. It would be nice to have a small dresser for in the bedroom, do any of you locally have a small dresser you aren't using that you would be willing to loan us while we are in Pittsburgh? Please e-mail me if you do. If I think of other things, I will let you know.

Thank you all so much for your continued friendship and support! Love, Nancy

Thank you for your concern!

Hello friends!

I am sorry I have been out of touch. I have had a few really difficult days. I am now on Cipro and Fortaz IV antibiotics, they seem to be helping, but I am struggling to improve. I have been sleeping and coughing a lot! The fevers have improved, so I think that is a promising sign. I so appreciate your encouraging e-mails, please know that I read, enjoy, and appreciate every one, even if I don't often feel up to responding.

Hannah spent Tuesday with her friend Haley and enjoyed some time at the barn with the horses. Rose took some great pictures for me to share.

Hannah has been struggling with nightmares. Last night, as she stood by my bed with tears streaming down, I thought of my own fears and how hard it is to overcome your fears. I ended up sitting in her room with her until she went to sleep. As I sat there, I thanked God for always being willing to sit with me when I am scared. He doesn't force me to face these fears alone, He stays with me. Just as I love Hannah and want to help her find peace, God loves me and will continue to be here even as the pain and suffering grows. I can handle anything with Him by my side!

May you feel God's calming presence in your life today and every day! My love to you! Nancy

A snowy morning.

I have decided there should be a law against feeling this lousy first thing in the morning. I think I should at least get one hour of neutral time, don't you? I spoke with Dr. Pilewski yesterday and my sputum is now growing pseudomonas. This is another infection like the Cepacia that causes trouble for those of us with CF.

(Pseudomonas aeruginosa is the main cause of infection and lung damage in people with cystic fibrosis. Pseudomonas aeruginosa are bacteria that are common in the environment. Pseudomonas aeruginosa is especially important in people with cystic fibrosis since it is the bacterium responsible for most lung infections. Repeated lung infections from Pseudomonas aeruginosa are the leading cause of decreasing lung function in people with cystic fibrosis.)

I should be starting a new IV antibiotic today and I started Levaquin yesterday. Please pray these will work!

I woke up to a beautiful snowy ground cover, all the more reason to move back to Pittsburgh, I would hate to think of missing an opportunity for lungs because I was snowed in.

Please have a wonderful Monday and know that you are in my heart! Nancy

Pictures from Hannah's Family Party

It only took me a week to get these pictures posted, sorry for the delay. Here are some pictures from Hannah's family party. Thank you to Uncle Tom Delaney who grabbed our camera and got these shots!

I continue to feel lousy. Hopefully tomorrow we can come up with a new treatment plan that may at least take away the fevers.

We have decided, with my continued decline and the change in seasons, that we will need to move back to Pittsburgh at the end of the month. I am hopeful we can find a furnished apartment to rent. Family House is wonderful, but I am no longer well enough to get dressed and go down to a community dining room for meals. I will keep you posted on the apartment search.

Love to you all! Nancy

Good to be home!

It sure is good to be loved! I got a warm welcome

home from my whole family. Jasper wanted to get as much love as he could, then Cracker and Sweet Pea kept me company while I napped.

Hannah was thrilled to see me too, but I think she was more excited about the cell phone her dad gave her that she can use to call me while I am in Pittsburgh. They headed off to Wal-Mart this morning to see if they could find a special case for it.

I am feeling pretty horrible today and actually had to break down and take a pain pill first thing this morning, I usually try to wait until later in the day. That trip to Pittsburgh always takes so much out of me. I have lost 8 pounds since my last appointment, which was also discouraging. I will be running more food through my feeding tube to try to gain some of that weight back. It certainly is a constant battle!

I got to see Julie and Mary. They are both well and were actually able to go home over Halloween weekend for a short visit. Julie lit up when she talked about how happy her animals were to see her! She has missed them so much! Her last biopsy went well and they are hopeful to be able to go home for good in a couple of weeks. Wouldn't that be incredible? I am so happy for her!

As I mentioned in an earlier post, I was able to meet my friend Cammi. What an awesome and amazing feeling to finally meet this person whom I have grown so close to in the last few months. I felt like we had know each other our whole lives and I only wish I could have given her a big hug! Unfortunately, because of our CF, until we both have new lungs, we cannot be near each other (hence the me in the car, her in the driveway). But, Dr. Pilewski said after transplant we will be able to be in the same room as long as we avoid physical contact. She and I are living parallel lives and I am always amazed at our shared feelings and experiences. I have started to wonder if perhaps I have been waiting so we could go through this together, it certainly would be nice to recover with this dear woman! I thank God daily for bringing her and her beautiful family into our lives!

Hannah had her first basketball game last night, I wasn't able to go, but Scott took pictures for me and I thought I would share a few with you. Love to you all! Nancy

We're Home

I am too tired to post, but wanted you to know we did get home safely, hopefully I will be up to posting more tomorrow. Love you all! Nancy

Doctor Appointment

Hello!

A quick update. We saw Dr. Pilewski this morning at 10:00. I am still really struggling, but there may not be much that can be done. At this point, we have thrown the top antibiotics at me and there still hasn't been an improvement, so this may just be my new baseline. I had kind of come this this realization on my own, but needed him to reinforce it so that I could totally wrap my head around it. And we fight on.

We decided to stay here in Pittsburgh one more night since the trip down took so much out of me and I am glad we did, I was able to get a long nap in a bed (not the car) this afternoon while Scott enjoyed the beautiful Pittsburgh weather on a long walk.

I also got to meet my teammate on this quest for lungs, Cammi. Scott and I drove by their rental home and we chatted from a safe distance, me in the car, her in her driveway. I will talk more about this in another post, but for me, this was by far the highlight of my Pittsburgh trip!

Well, I am still exhausted and we need to discuss dinner, so I will go for now. Look for another update tomorrow! Nancy

I'm Struggling

Well, the weekend definitely took a toll. I was pretty sick yesterday, fever, racing heart, chest pain, and the need for increased oxygen. I spent the whole day in bed. The home health nurse did come to take blood, so I am waiting to hear if there are signs of a new infection. I just started on a brand new antibiotic last Thursday that we were hoping would work well for me, but it looks like we may need to start IVs again.

Scott and I will be travelling to Pittsburgh tomorrow, I have an appointment with Dr. Pilewski Thursday morning. Dr. Pilewski was good enough to call to check on me last night, I think we all got a little scared with the severity of my symptoms. Though I still feel crummy today, the fever is gone and with the increase in oxygen my heart rate has settled down. I think I'll be doing a lot more sleeping today, however.

Please say a few extra prayers for me. Thank you all so much! Nancy

Happy Birthday to Hannah!

I had to make a very difficult decision this year that I am still feeling guilty about. The day I was called for lungs, Hannah and I had been discussing the HUGE Fall themed party we were going to have for all of her friends on her Birthday, she was so excited. Then the call came and reality kicked in. Would we even be around for Hannah's Birthday and, if we were, would I be physically able to host a large party? The answer to both of these questions was a very probable no, so I had to change plans and try not to disappoint Hannah.

Around this time adds promoting the new High School Musical movie appeared on TV and I realized that it would be playing in theaters on Hannah's Birthday weekend. If I could convince her to have a couple of friends and go to the movie, then, even if we weren't here, her Gramma Gail could still take them. Hannah thought that was great, but here is where I encountered my dilemma, I could only allow her to invite 3 friends. I have never wanted small parties because of this, I HATE to leave anyone out and didn't want any of her many wonderful girlfriends to feel left out. Unfortunately, this year, I just didn't have a choice. So, for those of you girlfriends who weren't able to join us, please know, next year I will make it up to you and we will have the biggest, best 10th Birthday party ever! Hannah has so many dear and special friends, choosing only 3 was extremely difficult!

We did have a wonderful evening with the girls and Scott and I both went to the movie with them. I enjoyed the movie thoroughly, Scott tried not to sleep. When we returned home, Hannah opened presents and then the girls played Dance Dance Revolution. I am not sure what time they actually got to bed, I was passed out by 9:00 and never heard a thing (thank God for fathers and grandmothers!)

Today we will be having the family at 2:00 for cake and ice cream and then I can crash, but I am so thankful I was able to participate in Halloween and Hannah's Birthday, this is what REALLY counts!