I hope everyone is doing well. I know you guys love it when Christi does her posts, and I try to encourage her to do them often. I am feeling pretty good from chemo yesterday, maybe a little tired. I was not sure how much I told you about my pulmonary rehab, so I thought I might explain it a little. I go on Tues, Thur, and Friday every week. I have been 4 times now I think where I am actually working out. i have improved each time, and I am already over what Duke will require for the transplant. I am trying to get even better. Today I went and I rode a bike for 8 minutes, did the treadmill for 15 minutes at 2.7 miles per hour, did an arm machine for 8 minutes, did the row machine for 6 minutes, and of course did the warm up with the group. It is pretty funny, i am the youngest in there of course, by 20 some years. The warm up is not hard but it is good since I have never really stretched before. After the warm up, I have to get on oxygen to so the exercises on level 4. However, my oxygen saturation levels have been good. I start lifting next week and I have already gained 4 pounds which is good as well. It is all the way in Charlotte which is a pain, but it beats having to be in Durham and going to Duke. I may have to do that later. I will have gone 13 times before I go to Duke for my evaluation, and I hope they will see this as positive.... I am also hoping they will let me stay in Charlotte while I am waiting on the list.... We will see.

I really believe this chemo is helping. I was really on a downward tick before and I feel a lot better. I believe if this chemo had not kicked in, I was really in trouble. Good thing it did.... Bought some more time. Thanks for all the prayers and thoughts. Still need them!

Hello everyone, Christi here. Just a little update, we are getting chemo today....we had a great weekend. FIG had their End of the Year Celebration this past weekend and it was a great time. At celebrations like this you are greatly reminded about how many wonderful people enter your life and support you when times are tough. I cannot express to everyone there a great thank you from me to the support and love that you all have for our family. So many people care about Bo and our fight that it is almost overwhelming to know that you all are there for us whenever we need you. I do have to say that going to FIG's celebration each year reminds me of how Bo and I started our journey together. (For those that do not know, I interviewed with FIG - Bo was the interviewer, I know HR nightmare, I didn't get the job at the time it took me 2 more years to get hired and I interviewed with Bill and Jo the next time.) But never for one second have I questioned the path and the choices I have made. The greatest thing that ever happened to me was not getting the job I wanted, but getting the life God laid out for me. Things happen for a reason just give it time and like Bill said enjoy the journey in life not just the year end celebration.

On another note everyone sure did looked wonderful! You all clean up real nice. As soon as I get pictures I will post some. I have to have people send some to me, because Bo wouldn't let me run home to get the camera I forgot. (We were 2 minutes away)

Also for those that do not know today is Bo's Birthday. I just reminded him a lunch that every day with me it like a birthday and he adamently agrees. So to you Bo

Happy Birthday Bo! We all Love you!

Love
Christi and Addi

PS Happy Belated Birthday Niece Ryan, she turned 2 Saturday

PS Happy Birthday Clint - His birthday is today as well. Don't worry I woke him up singing a great song today. Love you little one!

PS Go and see 27 Dresses, I loved that movie

Finally, I have something to update about the lung transplant situation. Duke called me to schedule my 1 week evaluation. I go on February 18 for the entire week. This is the evaluation and test process. I was very disappointed to have to wait until the 18th, but at least I am in. I go back to Duke for chemo on the 28th, and I will talk to them again then. After the week of testing, the doctors will meet about my case. At that point, I guess I will go on the list if they deem it ok.

I am happy to get started, just wish it was sooner..... It is a roller coaster of emotions....

Oh - went to the dentist yesterday and got a good checkup. Just thought you would like to know.

I wanted to have a quick update for today.

I am feeling better and at work today. I did very little this weekend, just hung out with Addi and Christi. I am trying to gain some weight, so I am drinking some protein shakes and stuff. It has been a long time since I have tried to gain weight..... I am now at 155 pounds and that is what I weighed in high school. It is weird....

I am VERY frustrated with Duke as of now. I met with the transplant people on Jan 3, and I am still not knowing what is going on. I am trying to be politically correct and going through the proper channels, but the further it is out the worse I feel about it. I have been trying to email and to work some magic, but nothing so far. I go back up on the 28th of January for chemo, and if I have not heard by then then I am going to have to become "crazy" Bo.....

My KS family is coming out in early Feb so I am glad about that!

Hope everyone likes the pictures of my beautiful little girl. I wish Christi would put pictures of herself on as well, she is beautiful too.

I am at work today, so I do not have too much time. I am supposed to be at a meeting in FL today, but I decided not to go earlier in the week. Things are going better, that is for sure, although I am still not sleeping well. I also have a hive-like deal going on from the chemo, and while it is not to bad, just annoying.

I am going to pulmonary rehab today for my exercise. I went yesterday for testing and consultation. The people are really nice and are very interested in me. I am the youngest person there as far as I can tell by 25 years, but that has been really everywhere. I hope it goes well.

So, basically I still have lung cancer but am feeling better. :)

I know I am very late on posting some pictures of Christmas...but here are a few of my favorites and one of Addi Painting today. We got a bunch of rain and a little snow, so we played indoors all day while Daddy went to work. Thank you everyone for all the prayers and support. We will type more later...

Love Christi and Addi

It has been a few days since my last post, and several things have happened. The first few days after chemo on the 8th, I was fine. I could not sleep hardly at all, but that was my big problem. On Friday morning, i went to have an x-ray because I thought I may have another collapsed lung. Dr. Thomas did the x-ray here, and he did not see anything. I went home on Friday afternoon and just felt really bad. We stayed home all weekend and I was like a zombie. I could only sleep 1-2 hours at a time. It was weird. All I did was watch football and play some with Addi. I worked from home on Monday and I went to the pulmonary specialist that afternoon.

-- Soapbox time: I had to go to the pulmonary specialist to get a referral to go to have a consultation with rehab.... What a waste of time! --

I saw Dr. Meade and he gave me the referral to go to rehab in Charlotte. I also asked him about oxygen, and he made me do a test called the 6 minute walk. When I did the test, he found that my blood-oxygen level went below the normal levels with exertion. Basically, he said I needed oxygen when I exercise and he wanted me to use it when I sleep. I had a service come over yesterday, and I now have oxygen. This is embarrassing for sure and makes me feel like I am moving down in health, but I still am hopeful this is temporary as the lung transplant will come to be.

Just a quick update. I did chemo yesterday and feel pretty good. I have not gotten sick yet or anything, so I think we will be good to go on this drug as well. I do feel like I am breathing better, but I am not sure if that is wishful thinking or really happening.

Thanks you for all of the notes you leave. It makes me feel really good that people are actually reading this. It is important for anyone that has a problem to be able to chat about it, and having you read it makes it better for me. Thanks!

Just a quick update, more later....

Headed to Duke tomorrow for Alimta but got some really good news today. The lung transplant doctor is willing to go the extra mile with me and do more test. While this does not mean I am accepted , it is very positive that he has decided if I can take the operation, I am in. I should test over the next 30 days, and then go on the list soon after that. I do not know what these test are, but I am hopeful I will do well. If I get a lung transplant, and if the cancer does not come back, here are my percentages:

Not reject after 1 year 90%
Not reject after 5 years 65%
Not reject after 10 years 30%

I will take those over my current odds!

Not much to report this weekend. I stayed around the house, just having trouble breathing. Addi and Christi stayed close as well, so I spent a lot of time with Addi. We watched the games, and of course watched Kansas play on Saturday and Carolina play tonight. My Mom made us dinner tonight, so Christi got a break.... kind of, she still had to take care of me! :)

I go back to Duke on Tuesday for the new chemo and I really want to go. I am having trouble sleeping as I can not breathe really well. I hope it will push back the cancer some to help my stamina and breathing. The only problem is I can only take it 8 times every 3 weeks. A short term fix. Would love to play golf again, but walking up stairs is tough now.

When I started this blog I said I would alway tell the truth on what was happeing to me. Above is the way it is now. I am scared about what will happen next, and feel that without the transplant I might be on the way down. I am not depressed or mad, just trying to explain where I am. Looking forward to some good news soon.

New update from Duke today. We went up and met with Dr. Palmer who is the director of the lung transplant area. He is very nice and SMART, and he is just a bit older than me. (He was the smart one in school!!!)

He talked to me about the procedure and he is going to look into my case. He is really going to consider it, and that is the best news I could have received. This is not a guarantee he will let me do this, but it is a first step. It was a good meeting....

Chris Flynn, Suzi's husband, asked me if he could have Addi's Cure be the charity that is listed at Suzi's funeral in lieu of flowers. I was honored. He said Suzi would have wanted it this way, and I believe him.... I will miss Suzi.

I promised an update for you from Duke today, and I wish I had better news. My scans did not go well. They show a growth of the cancer. Dr. Crawford has decided that we need to switch courses and try some new things. I am going to stop using tarceva. I will keep using avastin, but add another drug to it. It is called ????, I will let you know later..... I will have to go to Duke every 3 weeks for this treatment. It will take about 3 hours and will be done intravenously. It was not good news, but at the same time, it was unrealistic to think any medication would last forever. I am glad to know we are moving forward to another chapter....

I want to report some sad news as well. Many of you have read from time to time about my friend Suzi from back home. She lost her fight with lung cancer this morning at about 10:15 am. She had been fighting hard for 3 years.... I was very sad to hear this. Thanks to everyone who sent in money to Addi's Cure on her behalf. Please remember her family during this time. She has a 5 and 3 year old.

I will be meeting with the lung transplant doc tomorrow, so I hope I will have some different and better news.....

Happy New Year! I hope everyone had a good holiday. The Johnson Family had an interesting one....

I first wanted to say I go to Duke tomorrow for scans and then stay over for a January 3rd appointment with Dr. Palmer, the lung transplant guy. I will know a lot more on Jan 3rd and will report. I am worried about the scans, like always. This time I am for sure breathing different, and I have no idea what is going on. I will be glad to know, that way the docs hopefully can do something.... Dr. Palmer is the man that makes the decision about the transplant, so I hope I impress him.... Might wear a suit, just kidding.

We are going to present Duke Research with a check from Addi's Cure tomorrow as well. I am so proud of Addi's Cure and what it has become. It is all due to every ones help! We are going to donate $61,289.35 to lung cancer research. We also have over $98,000 in our interest bearing account for endowment. Everyone has done such a great job with this. We have decided to hold our first Addi's Cure event for 2008 on March 1 in Cornelius at the Peninsula Yacht Club. It will be with a Jimmy Buffett theme and should be a lot of fun..... Please make plans to come if you can....

Alright - holiday update. I was not able to go to Kansas because of my breathing. Christi and I were disappointed, but we did think it was best. I will have to get back there soon, I miss my Kansas family. Christi and Addi have a blast and Addi went sledding with her BFF forever Ryan. I added a picture of Addi (eyes closed of course!) and Ryan with Uncle Curtis at the top....

Merry Christmas everyone from the Johnson Family.

We have had a wonderful holiday here in NC. Today, Addi got her first dollhouse. She was so excited that she really did not look at anything else Santa brought until the afternoon. It was very cute. We had Bill, Jo, Aunt Bobbie, and Tracia over for lunch today as well. Tonight, Addi can not stop taking pictures with her new Fisher Price camera. A lot of pictures!

My holiday really started on Sunday when we went up to Hendersonville for the Johnson dinner. A lot of people were there and it was really nice. We then went to my Papa's house and opened up presents. Addi had a lot of fun. Papa gave me something really to treasure. When my grandmother (Mama) was still alive, she was such an influence on my life. She was really a great woman, and really funny. Any way, for their 50th anniversary, Papa gave Mama a liberty 50 dollar gold piece on a chain. I always loved that piece and thought it was awesome. Papa gave it to me for Christmas. It is very special to me and it will be something I pass on to Addi so she will have something of my grandmothers. I was very shocked.

Monday night we went to Jo's house. Just in case you do not know, Jo is my Mom. I call her Jo because of work, and it has just stuck. (I know when Lena reads this she will be yelling at me to call her Mom...) Daniel, Andrea, Joe, Scout, Mike, Caroline, Christi, Addi, Aunt Bobbie, Jo, and Bill were there and we had dinner and opened presents. It was really fun. I think everyone had a great time. We left that night, and went home to help Santa get ready for Addi..... :)

Back to our house today - Addi's third Christmas was so cool. She really understood a little better about Christmas and what it means. Don't get me wrong, we still have a long way to go.

Christi and I had a good Christmas as well. Christi hit the jackpot! So did I. Honestly, we just enjoyed each other and Addi. I hope all of you understand how special EACH holiday is. I will be seeing my KS family soon!

I hope everyone had a good week. As you can see from the last post that Christi did, my family is really a great asset. I love Christi and Addi so much, and I hope that I do not leave them. Addi has been so sweet about Christmas and I am really just glad I am still here to see it.

Update on me: I have been hearing a weez lately when I take a deep breath to cough. Susan heard it as well when I was at Duke. What could this be? It could be the cancer blocking my airway, or I am hoping it is still the talc from the collapsed lung. To be honest, i am not sure. I am coughing a lot more....

I am very excited about Christmas and the thought of spending time with my family in NC and KS. When you are in my situation, you never know if this is the last one you will have. I try my best to have the best time and not think of it, but I do think of this all the time. I have tried to ask God to take it away, and I still think of it.

I wanted to say thank you to everyone that has given money to Addi's Cure this year. We raised more than last year, and we will be giving Duke a lot of money this year. They are amazed at what you are able to do. Yes, I said YOU. Our next Addi's Cure function will be this spring in Cornelius and will have a Jimmy Buffet theme...... SOUNDS FUN!

Hello Everyone Christi here...things here are good. Addi is really into Santa Claus which is so fun. I might be a little crazy taking her everywhere to see Santa, but Christmas is only one time a year, Right? Anyway things went at Duke as we sort of expected. They are not completely on board, yet...but hopefully with some perseverance and information we will sway them in time. Bo really believes this is his best chance, so a lot of prayers would be great. I just wish he didn't have to do something so scary and serious (sorry i can't think of a better word), but I guess cancer is pretty scary and serious. I knew life with Bo would be exciting and never calm, but I just hope the holidays will be and then we will know what to do. Take care and have a wonderful Holiday Season.

Love Christi and Addi

PS If you see Santa tell him Addi says hi! They are on a first name basis now.

Tomorrow is a big day. I am going to Duke, and we are going to talk about me having a lung transplant. I have decided I will insist on doing this asap. I talked to Gerald Dash on Friday, and it was cemented. Gerald has had the transplant done, and although he was very honest with me about how he is feeling, etc., I still think this is the best thing. I hope Duke will say yes, because if not, I will be moving to CA. I either have to be within three hours of the facility where the transplant will take place, or I have to be there period. Either way, I am hoping I can be near my family.

Just wanted everyone to know....

Addi and Christi are doing great. I will ask Christi to put some pictures on the blog this week....

Please say a prayer for Darlene. She wrote an article about me for a paper, and she just got the news she has breast cancer....

A mid week update, are we all lucky! :)

I went to Pinehurst for a meeting with a company we do business with. We played Southern Pines Country Club. Tim hit one onto the roof of the snack shack that was between 9-10-11-12-14. It stayed and he played it as it lies. It was a par three and he made a 4. It was amazing. We got pictures, and I will try to post it..... I was supposed to play No. 2 today, but I did not because I was really embarrassed by the day before. It sucks, as much as I like golf, that I could only play nine holes. I am a little worried by this, but it could be still from the talc from the collapsed lung. I am going to go with this theory. I will be trying to build up for my next golf trip in January. I am not sure how to accomplish this, but I will try. If I can not do this, I will have to find another hobby? Any ideas????

I hope everyone had a great weekend. It was a fun week at work, and there is a lot that is happening. This is a really big time for us.

This weekend we went to go see Santa at Interstate Motorcycles. This is the motorcycle group that raised money for Addi's Cure with a Poker Run. They did such a great job and raised a lot of money. I hit some golf balls and played with Addi. Christi and Addi have been seeing Santa all over the place. Addi is really excited about this season.

Update on Suzi - Someone asked me to update everyone on Suzi. She sent me an email today and she is doing ok from what I understand. She is starting radiation on Monday again and I am so glad. She is having some trouble but I hope that it will get better for her. She thanks everyone for the prayers and thoughts. She needs more! I want to issue a challenge for you readers - send a $5 donation to Addi's Cure and in the memo section, put Suzi. Let her know she is being thought of.... See how I am always looking for an angle!

Addi's Cure is winding up our first full calendar year. This year has been awesome. We have raised awareness and money, and I want to do more. Please help us spread the word about lung cancer and funding. They do not have to send $$ to Addi's Cure, but send some somewhere. There are some many good causes, get into one and give your time as well. Remember the girls from Touch a Truck? Awesome ladies....

I would like you to say a prayer tonight for a sweet little girl. McKenna Johnson died this week. She was 10 years old and lost her battle with cancer. Please say a prayer for her family and for her. I am sure she is in Heaven and in no pain, and playing like a 10 year old should. Cancer SUCKS! Here is an entry from her blog:

Saturday, December 1, 2007 10:32 AM CST
Dear McKenna,We are so proud of you! From the moment you were born, you brought us so much joy, and love. You were such a happy baby and we loved you from the first instant we found out we were going to have another child. You were such a happy baby, and you were our first little girl. So precious and sweet and you were ALWAYS in pink.When we first heard the words, “Your daughter has cancer”, I thought our worlds were coming to an end. I had never felt that kind of pain, desperation, fear and anguish. How could this be? Such a perfect, sweet, innocent little girl….diagnosed with cancer at only 2 years old? We wished we could take your place. We would have given anything to have it be one of us, not you, our child. In those early years, we watched as you suffered through painful procedures and many treatments. You were stuck in the hospital countless times and endured chemotherapy, radiation and a bone marrow transplant. During it all, you remained happy and you would tell us not to worry and not to cry. Everything was going to be okay. You made the nurses, doctors, and staff fall in love with you. You had so many of them just eating out of the palm of your hand! You’d walk the halls of the hospital, tethered to your pole, with your cute little slippers on and sometimes, sunglasses or purses or hats. Always so stylish and cute and sassy! You were the brightest of angels, even back then!Following the successful BMT, you remained healthy for 5 years and 2 months. We are so thankful for all that we got to do with you. You showered us with so much love and you, soaked in and basked in, all of ours. You grew into such a beautiful, healthy young lady and we will never forget all the wonderful, special times we spent with you. We will never forget your spunk and your attitude, your humor and sarcastic comments. You were sassy and stubborn, but also sweet and loving to the core. You were such a mother hen. You loved babies and small children and would play for endless hours at Nana’s with all the babies in her daycare, holding them, playing with them and showering them with your attention and affection. When you were diagnosed this February, we were all crushed. We were all a little older, and wiser and so very, very scared of the road you would need to travel down. You helped your teacher tell your class that you had cancer and wanted to be able to answer any questions to your classmates. Such a fearless little girl! We watched as you took it all in stride and bravely went through all the new treatments. The lung surgery and the chest tubes in June, were the most painful procedures you had ever had. I cried and cried during the times you would get to finally rest and sleep, for all the pain that you had to endure. Tom our neighbor, remembers that shortly after your surgery, you were RUNNING and playing Ships across the Ocean, at their house and when you were getting tired, you said to Tom, “Tom, can you carry me? I just had part of my lung removed!”. I will NEVER forget that story. It is so you!During your BMT this August, we once again watched as you suffered. There was so many horrible side effects to your chemo. Nausea, vomiting, GVHD and all the horrible things that go with that. We watched as the strength was sucked out of your body, but never the spunk and your spirit. You fought so hard and you made it! You got to come home for 3 weeks!!! Home at last! We watched as you quietly, soaked it all in. You were so content to just sit or lay on the couch and watch your brother and sister in whatever they were doing. You didn’t have the strength or stamina to want to do much, but you were still so happy to be home with your family. You got to pick out your own little puppy, your loving little girl Emmie, and you bought her with your own money. She made you so happy and we are so glad you got a chance to do this, even if you really only got to enjoy her for 2 weeks. We will never regret the decision to let you have your own puppy and so grateful for the extra smiles it gave you. When we were told you had a virus…RSV, we really thought nothing of it. So what? Big Deal! Our McKenna is so strong, nothing can stop her, is all we so blindly were thinking. Never did we think it would devastate and destroy your lungs the way it did. I can’t even explain the pain that we felt as we watched you struggle to breathe. When you needed to be intubated and put on a breathing machine, I asked if you were scared and you said no. Always so brave! We were with you every day at the hospital, your entire family would take turns coming to visit you. We always thought you were going to wake up and couldn’t wait to see your eyes open and your see your beautiful smile. We wanted to hear your sweet voice again so badly. It wasn’t meant to be. You had to leave us on Tuesday. You had to go. Your body was so tired and worn out and it had suffered so long and hard. We knew it when we saw you that morning. It was over, you were done fighting, and we were telling you it was okay. It was your time to go fly, sing and dance with the angels. We understood that, finally, and we were ready to let you go.You left us, your entire family together, in your hospital room, surrounding you with our love. You are so brave, strong and courageous and we will never forget the lessons you have taught us. WE will cherish everything we had with you and you will be with all of us in our hearts forever and ever. You were the best little sister to Kalen, and the best big sister to Jadyn that you could possibly be. They are both so proud of you and will forever miss their sister. They are glad that you are now in heaven and cancer free. They both know that you are busy with all the angels, but know that you will hear them when they talk to you. They LOVE YOU!Mommy and Daddy are going to miss you forever. Your absence has left this family with a void as big as the Grand Canyon, and we are going to have to learn to live with it. You will always be with us and we are so blessed to have had you for as long as we did….we know that and we know that you are in a better place, free of pain and suffering. That is what gives us great comfort at this time!You changed lives baby girl! You inspired and touched so many people’s hearts! You lived life to the fullest and packed in an entire lifetime in just 10 short years. You are AMAZING and we will always carry your spirit in our hearts as we continue on here on earth. We will see you again princess McKenna….in every pink sunset, rainbow and twinkling star. We will know you are watching over our family for the rest of our lives and when we get to heaven, we’ll be able to hold you and laugh with you again! For now we will just continue to love you and remember you and miss you with all our might!See you later Boo Boo McFoo!!!

From McKenna:

Brick Wall, WaterfallDaddy thinks He’s got it all
But he don’t, cuz I do!
So, Boom with that attitudeBoom with that attitude!
Peace, Punch, Captain CrunchI’ve got something you can’t touch!
Bang Bang choo choo trainWind me up, I’ll do my thang!
I know Karate, I know Kung FuMess with me…I’ll mess with you….FOO!!!


Love McKenna!

Hello and I hope everyone had a great Thanksgiving. I was very lucky this Thanksgiving as I saw everyone in Hendersonville for lunch, and everyone in Charlotte for dinner. Just because of the travel, etc., we did not go to Kansas, where Christi's family is. We made a decision a couple of years ago that we would go to Kansas for either Thanksgiving or Christmas, but not both. I am really bummed that we did not see the Kansas family. Distance is hard.

I went to a couple of Bobcats games this week as well as seeing our PITIFUL Panthers today. They are really not good. I did see my old friend Susie Harvey. Susie is pregnant with her first, and really looked great. I have not seen her since at least 1990. We only got to chat for a minute, and it was the awkward surprised chat. You know what I mean.....

Several people have asked me about my friend Suzi Flynn and her struggle with cancer. I sent her an email tonight, and asked if she would give me an update and permission to post. We will see what she says.....

Addi and I have been learning letters tonight via the Internet. She loves Sesamestreet.com and is really funny participating. She likes to make sure you know she is doing well. She did the same think at gymnastics. It is very cute and I am glad she makes me feel very important. Christi does such a good job with Addi. She is really growing up to be a little lady.

People keep asking how I am feeling. I am doing pretty well. I am still having trouble sleeping because I am coughing. It is weird, I cough so much when I am horizontal. I have been trying to go to sleep with Christi, but instead of keeping her up, I am going to another room. My wind is getting better, but still not all the way back from the chest tube on the collapsed lung. I am feeling like it will keep getting better. My wait has leveled at 162, and I hope will trend back up. It is nice being skinny, but you know, I need my winter weight. I also still have the rash on my face, but it has calmed down. Think of Bo at 15, you will get the picture.

Last but not least, i have to tell you a funny story. I have three dogs, which I did not want. Christi brought them home without my knowledge. (I would say permission, but there are knives in the house.) I have grown to love these dogs. I still do not want them, but love them A LOT. Long story short - I am getting to my office on Wednesday of last week. As I am going into my briefcase to get some papers, I notice a smell. Kind of like a rotten smell, but faint. I pull out a plastic sleeve, and it is wet. Basically, one/two/or all three of them went pee in my briefcase.... Did I mention I love those dogs?

See ya....