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!
Tuesday, December 25, 2007
Sunday, December 16, 2007
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!
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!
Thursday, December 13, 2007
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.
Sunday, December 09, 2007
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....
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....
Wednesday, December 05, 2007
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 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????
Sunday, December 02, 2007
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!
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!
Sunday, November 25, 2007
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....
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....
Monday, November 19, 2007
So much has happened since my last post. If I forget something, sorry!
Today I went and got a treatment of Avastin. I found out that each dose cost over $10,000 and I go every three weeks. The nurse also said it was a wonder drug, and I needed to make sure I got each drop. I guess I have to thank Blue Cross and Blue Shield. I feel a little tired, but basically ok.
Sunday I hung out with Addi and just played with her until about 5:30. Christi, Brian, Jennifer, and I went to dinner and to a play, The Drowsy Chaparone. It was great. We had dinner at a little resturant downtown, and then walked to the show. I had a great time with my crew....
Friday and Saturday, I went to Hendersonville to a golf outing for Addi's Cure. It was a lot of fun. Lee B. put it together and he is such a good guy. Friday, we all went to dinner and caught up. Amy, Tippi, Steve, Steve L, and many others were there. It was fun to see my high school friends. Saturday, we went to the golf outing and it was COLD! My dad played also, and we were in the same 4-some. My group came in second, and we rasied $1500 for Addi's Cure. I was so proud of Lee, he did such a good job. Jim, Justin, Shawn, Phil, Brian, Zack, Adam, Billy, Dave, and Mike came up and really put in a huge effort.
Thanks to everyone....
Today I went and got a treatment of Avastin. I found out that each dose cost over $10,000 and I go every three weeks. The nurse also said it was a wonder drug, and I needed to make sure I got each drop. I guess I have to thank Blue Cross and Blue Shield. I feel a little tired, but basically ok.
Sunday I hung out with Addi and just played with her until about 5:30. Christi, Brian, Jennifer, and I went to dinner and to a play, The Drowsy Chaparone. It was great. We had dinner at a little resturant downtown, and then walked to the show. I had a great time with my crew....
Friday and Saturday, I went to Hendersonville to a golf outing for Addi's Cure. It was a lot of fun. Lee B. put it together and he is such a good guy. Friday, we all went to dinner and caught up. Amy, Tippi, Steve, Steve L, and many others were there. It was fun to see my high school friends. Saturday, we went to the golf outing and it was COLD! My dad played also, and we were in the same 4-some. My group came in second, and we rasied $1500 for Addi's Cure. I was so proud of Lee, he did such a good job. Jim, Justin, Shawn, Phil, Brian, Zack, Adam, Billy, Dave, and Mike came up and really put in a huge effort.
Thanks to everyone....
Wednesday, November 14, 2007
Hello everyone, Christi here, boy is it nice to have nothing new to report. I am good with boring for a while. I am afraid the holidays will pick things back up, but you have to love being with family. Anyway, just a short shameless plug out there for everyone shopping online this Christmas. Please consider going to http://www.igive.com/ and registering. You can choose Addi's Cure as your choice of charity or any charity out there. This is a great website having the big stores give a percentage back to charity. If you download their software, igive will automatically pop up and you do not have to shop through their website, they will link it up for you and boom money is given. Thanks to those that are already using it, we have raised a couple hundred dollars for doing nothing but buying presents for loved ones. Please see the info and link below if you want to link up with Addi's Cure. Thanks for all you help and feel free to email info@addiscure.org if you have problems logging in and downloading.
Take care
Christi and Addi
Use this link if you want to register with Addi's Cure...
Hi_______here, along with iGive.com, inviting you to change YOUR online shopping into support for a truly worthy cause.
I'm supporting Addi's Cure, just by shopping online at over 681 online stores. And right now, my surfing can help too: when I visit online stores through iGive.com, it counts as an entry in iGive.com's Surfathon sweepstakes for a chance to win a $1,000 donation! They're giving away $1000 to 5 winning causes, every month for 10 months! I hope you'll join me for more chances to win - just join iGive.com for free and check out their stores. You don't even have to buy anything!
If you do happen to make a purchase through iGive.com within 45 days of joining, iGive.com will donate an EXTRA $5 to your favorite cause! With over 681 participating stores, it's easy to find the things you need AND support a good cause.
HOW IT WORKS:
1. Join iGive.com to support Addi's Cure It's free, safe, and easy to join.
http://www.iGive.com/html/refer.cfm?memberid=485982&causeid=38872
2. Shop through iGive.com OR just surf their stores Their online mall features trusted online retailers like Lands' End, Staples, NORDSTROM, JCPenney, eBay, Expedia.com, Barnes & Noble, QVC, & PETsMART to name just a few!
3. Watch the $$ roll in for Addi's Cure!
Up to 26% of EACH purchase is donated, plus a bonus $5 donation if you shop within 45 days. The more stores you visit, the more chances to win a $1,000 donation during the Surfathon!
So, to recap:
Join for free, shop within 45 days of joining, and you'll get an extra $5 donation, FREE. And even if you don't shop, simply visiting stores through iGive.com means more chances to win a $1000 donation during the Surfathon! This is a limited time offer - you can click the link below to learn more:
>> http://www.iGive.com/html/surfathon.cfm
----------------------------------------------------
Use this link to JOIN FOR FREE and begin supporting Addi's Cure:
http://www.iGive.com/html/refer.cfm?memberid=485982&causeid=38872
----------------------------------------------------
MORE INCENTIVES for iGive.com Shoppers:
-->FREE SHIPPING deals from great stores SALES & COUPONS to save you
-->money VIRTUAL KARMA from supporting YOUR favorite cause
-->$5 FREE donation when you shop within 45 days!
I hope to see you at iGive.com soon.
Christi
P.S. iGive.com would like you to know that all the causes at iGive.com have been listed by members for their own and others' benefit. They don't endorse the causes, and the causes don't endorse them. But I DO! So, c'mon, click on that link above.
Take care
Christi and Addi
Use this link if you want to register with Addi's Cure...
Hi_______here, along with iGive.com, inviting you to change YOUR online shopping into support for a truly worthy cause.
I'm supporting Addi's Cure, just by shopping online at over 681 online stores. And right now, my surfing can help too: when I visit online stores through iGive.com, it counts as an entry in iGive.com's Surfathon sweepstakes for a chance to win a $1,000 donation! They're giving away $1000 to 5 winning causes, every month for 10 months! I hope you'll join me for more chances to win - just join iGive.com for free and check out their stores. You don't even have to buy anything!
If you do happen to make a purchase through iGive.com within 45 days of joining, iGive.com will donate an EXTRA $5 to your favorite cause! With over 681 participating stores, it's easy to find the things you need AND support a good cause.
HOW IT WORKS:
1. Join iGive.com to support Addi's Cure It's free, safe, and easy to join.
http://www.iGive.com/html/refer.cfm?memberid=485982&causeid=38872
2. Shop through iGive.com OR just surf their stores Their online mall features trusted online retailers like Lands' End, Staples, NORDSTROM, JCPenney, eBay, Expedia.com, Barnes & Noble, QVC, & PETsMART to name just a few!
3. Watch the $$ roll in for Addi's Cure!
Up to 26% of EACH purchase is donated, plus a bonus $5 donation if you shop within 45 days. The more stores you visit, the more chances to win a $1,000 donation during the Surfathon!
So, to recap:
Join for free, shop within 45 days of joining, and you'll get an extra $5 donation, FREE. And even if you don't shop, simply visiting stores through iGive.com means more chances to win a $1000 donation during the Surfathon! This is a limited time offer - you can click the link below to learn more:
>> http://www.iGive.com/html/surfathon.cfm
----------------------------------------------------
Use this link to JOIN FOR FREE and begin supporting Addi's Cure:
http://www.iGive.com/html/refer.cfm?memberid=485982&causeid=38872
----------------------------------------------------
MORE INCENTIVES for iGive.com Shoppers:
-->FREE SHIPPING deals from great stores SALES & COUPONS to save you
-->money VIRTUAL KARMA from supporting YOUR favorite cause
-->$5 FREE donation when you shop within 45 days!
I hope to see you at iGive.com soon.
Christi
P.S. iGive.com would like you to know that all the causes at iGive.com have been listed by members for their own and others' benefit. They don't endorse the causes, and the causes don't endorse them. But I DO! So, c'mon, click on that link above.
Monday, November 12, 2007
We had a great weekend. Christi, Addi, and I went to Middleburg, VA to see an art show and spend time with Bill and Jo. Dennis E. is a person that we buy some art from, and he was having a show. He had Yuri Gorbachev in town for the show. He is from Russia and is an incredible artist. We also saw Jason K and Emily K, with their daughter Grace on Saturday. Tom and Lisa K. came to see us at the art show. We stayed on an estate that used to belong to the Warburgs. The Warburgs were part of the famed German and later New York banking family. It was really awesome.
Tonight, I spoke at a meeting on lung cancer. It was a good meeting.
Tonight, I spoke at a meeting on lung cancer. It was a good meeting.
Thursday, November 08, 2007
Just wanted to check in this Thursday evening and say hello. We are so busy at work. Addi's Cure is doing really well. Remember, we started this year with $35,000 from last year. This has been growing in interest all year and was have of course raised a lot of money this year. We are over $125,000 for the year, so we will be able to give Duke more than last years $35,000. I think we will do better, but we can give them at least $62,500 this year.
I will check back with everyone on Sunday. I feel good and am looking forward to the weekend.
I will check back with everyone on Sunday. I feel good and am looking forward to the weekend.
Sunday, November 04, 2007
Make sure you look below for some pictures of me and Addi at Halloween!
This weekend was really great. I had the best time and really was surprised and amazed. I am going to start on Sunday and go backwards.
Sunday
I woke up and it was nice to be able to "sleep" in. The time change was nice, and of course Addi woke us up when she was ready. Christi fixed pancakes for Addi and I so it started off really good. We just hung around all morning, and Dr. Dan made a house call around lunch. He is the person that preforms acupuncture for me. I could not go as much as I needed last week, so he is really cool and came over. I stayed pinned for about an hour. Then Brian, Justin, Phil, Donelle, and I went to the go cart track. This is the real deal, where they go up to 60 mph. I cam in last, and Justin beat us all. It was a lot of fun. Brian and I went back, and with Christi, Addi, and Jennifer, watched the New England vs. Indianapolis game. Basically after that, paid bills, etc.
Now to tell you the other part of my weekend, I have to start on Friday. Friday the family headed down to Myrtle Beach for Richard Berry's client appreciation event. That meant I got to spend a lot of time with Addi and Christi in the car. Unfortunately, I was on the phone a lot. We got down to the hotel, and it was on the beach, so we took Addi to the beach. She found several shells and was highly upset to leave for dinner. We met the Berry's for dinner. Have you ever met someone and knew it was right? This is how it is with the Berry's. They work with my company, but our relationship is far from business now. It is truly friendship. We have done this with several people that work with us. For me, I can think of Kevin S., Larry G., John K., and that is off the top of my head. Very blessed for these relationships. We had dinner at The Brentwood in Little River, SC and it was awesome. Food was awesome as well, but company was better. All of the Berry's (Richard, Jan, Jana, Jamison, and Jordan) were there, as well as Jim and Jamie, Tracia, Caroline and Mike, Bill, and Jo. After dinner, we all went to bed.
On Saturday, we woke up and had breakfast. We went to the Berry's Client Appreciation Day at The Dixie Stampede in Myrtle Beach. Now, whatever i say from this point will not do justice to what happen. The worse part is I know I will leave things out as well. Trust me, it was really amazing. The Dixie Stampede probably holds about 1,000 people, and over 800 were there. There was a horse show and lunch, and it was really good food and fun. Addi loved the horses. Richard came out of the ceiling in a super man outfit and proclaimed himself the safe money man. It was hilarious. Addi called him the "money bird" and really laughed and thought he was funny. Then they called us down and made a presentation. They had raised $7,505 for Addi's Cure. I have never really put numbers with people, but I was amazed at what they had done for us. American Equity was there and they presented Addi's Cure a check as well. Last but not least, Michael C. and his company gave a donation as well. All in all, I was overwhelmed. Christi was too.
There is really not much I can do to show my appreciation for what everyone has done for Addi's Cure. I try to tell the stories of what the Berry's and others do for the cause, and I hope it is not lost my admiration for all the help I have been given. Addi's Cure has been a great distraction for me, and your support has made me believe that anything can be done. I will post soon and let you know the total for 2007 as well as since inception, but it will make you cry. Every dollar, I mean every cent, will be used for research. I hope we can make a dent where the government is short. Did you know that the government approved a study for yellow bees and pumpkins that will have more funding than lung cancer? What in the world!
This weekend was special and I hope I did some justice to it..... Thanks again to the Berry's for a wonderful weekend.....
This weekend was really great. I had the best time and really was surprised and amazed. I am going to start on Sunday and go backwards.
Sunday
I woke up and it was nice to be able to "sleep" in. The time change was nice, and of course Addi woke us up when she was ready. Christi fixed pancakes for Addi and I so it started off really good. We just hung around all morning, and Dr. Dan made a house call around lunch. He is the person that preforms acupuncture for me. I could not go as much as I needed last week, so he is really cool and came over. I stayed pinned for about an hour. Then Brian, Justin, Phil, Donelle, and I went to the go cart track. This is the real deal, where they go up to 60 mph. I cam in last, and Justin beat us all. It was a lot of fun. Brian and I went back, and with Christi, Addi, and Jennifer, watched the New England vs. Indianapolis game. Basically after that, paid bills, etc.
Now to tell you the other part of my weekend, I have to start on Friday. Friday the family headed down to Myrtle Beach for Richard Berry's client appreciation event. That meant I got to spend a lot of time with Addi and Christi in the car. Unfortunately, I was on the phone a lot. We got down to the hotel, and it was on the beach, so we took Addi to the beach. She found several shells and was highly upset to leave for dinner. We met the Berry's for dinner. Have you ever met someone and knew it was right? This is how it is with the Berry's. They work with my company, but our relationship is far from business now. It is truly friendship. We have done this with several people that work with us. For me, I can think of Kevin S., Larry G., John K., and that is off the top of my head. Very blessed for these relationships. We had dinner at The Brentwood in Little River, SC and it was awesome. Food was awesome as well, but company was better. All of the Berry's (Richard, Jan, Jana, Jamison, and Jordan) were there, as well as Jim and Jamie, Tracia, Caroline and Mike, Bill, and Jo. After dinner, we all went to bed.
On Saturday, we woke up and had breakfast. We went to the Berry's Client Appreciation Day at The Dixie Stampede in Myrtle Beach. Now, whatever i say from this point will not do justice to what happen. The worse part is I know I will leave things out as well. Trust me, it was really amazing. The Dixie Stampede probably holds about 1,000 people, and over 800 were there. There was a horse show and lunch, and it was really good food and fun. Addi loved the horses. Richard came out of the ceiling in a super man outfit and proclaimed himself the safe money man. It was hilarious. Addi called him the "money bird" and really laughed and thought he was funny. Then they called us down and made a presentation. They had raised $7,505 for Addi's Cure. I have never really put numbers with people, but I was amazed at what they had done for us. American Equity was there and they presented Addi's Cure a check as well. Last but not least, Michael C. and his company gave a donation as well. All in all, I was overwhelmed. Christi was too.
There is really not much I can do to show my appreciation for what everyone has done for Addi's Cure. I try to tell the stories of what the Berry's and others do for the cause, and I hope it is not lost my admiration for all the help I have been given. Addi's Cure has been a great distraction for me, and your support has made me believe that anything can be done. I will post soon and let you know the total for 2007 as well as since inception, but it will make you cry. Every dollar, I mean every cent, will be used for research. I hope we can make a dent where the government is short. Did you know that the government approved a study for yellow bees and pumpkins that will have more funding than lung cancer? What in the world!
This weekend was special and I hope I did some justice to it..... Thanks again to the Berry's for a wonderful weekend.....
Friday, November 02, 2007
I am sorry it took me so long to post this week. I want to say first that I am really pumped about my doctors visit on Tuesday. I think everyone can agree that I thought the results were not going to be good. A lot of people were concerned I was down, but I just felt there would be a negative reaction because of what my body was telling me. When I had the last collapsed lung, the procedure they did really is taking a long time to heal which is giving me real symptoms, but it seemed like it was from the cancer.
Susan, one of the doctors I see, came in because we had been waiting awhile. She could not see us right then, but she did say the scans are good. Later she came in and talked more. I wanted you to know this part of the story because that is an example of why I am so happy at Duke. She did not have to do that. I really believe they truly care about me.
I do want to say I am still going to go for the lung transplant. While I am stable, science tells us that eventually, the Avastin may not work. I will always try to do something to make me stable, but in the end, I think I will have to go for it.
Three great things from this week. First - Charlotte Business Journal picked FIG as the 3rd best place to work in Charlotte. We were in the medium category, and there are over 1700 businesses with 50-175 employees. This is something that our employees were surveyed for this honor. This is not something we paid for, it is really a big deal and I am very proud of our company. Second - this weekend, one of my clients is having a client appreciation dinner. One of the things they are doing is having a fund raiser for Addi's Cure. They have already donated themselves and had many of their clients donate also. The Berry's are a great family. I could go on and on. The third thing is very exciting as well. There is a Bush Series driver named Jennifer Jo Cobb (http://www.cobbracingteam.com) and Addi's Cure will be on her car. One of the companies I work with is The Annexus Group. These guys decided to sponsor her car. Out of the goodness of their hearts, they decided to put my charity on the car. I was so touched, it was crazy.... She is the only female driver, and she is from Kansas. Watch the PHX Bush race and look for the Annexus Car with Addi's Cure on it...... Thanks Don and Ron!
Last, but not least, THANK YOU. I know there are a lot of people out there thinking of me and praying for me. We all know that is why I am still here. I have had some good times and bad during the crazy time, but the bottom line is the support I have is awesome....
Susan, one of the doctors I see, came in because we had been waiting awhile. She could not see us right then, but she did say the scans are good. Later she came in and talked more. I wanted you to know this part of the story because that is an example of why I am so happy at Duke. She did not have to do that. I really believe they truly care about me.
I do want to say I am still going to go for the lung transplant. While I am stable, science tells us that eventually, the Avastin may not work. I will always try to do something to make me stable, but in the end, I think I will have to go for it.
Three great things from this week. First - Charlotte Business Journal picked FIG as the 3rd best place to work in Charlotte. We were in the medium category, and there are over 1700 businesses with 50-175 employees. This is something that our employees were surveyed for this honor. This is not something we paid for, it is really a big deal and I am very proud of our company. Second - this weekend, one of my clients is having a client appreciation dinner. One of the things they are doing is having a fund raiser for Addi's Cure. They have already donated themselves and had many of their clients donate also. The Berry's are a great family. I could go on and on. The third thing is very exciting as well. There is a Bush Series driver named Jennifer Jo Cobb (http://www.cobbracingteam.com) and Addi's Cure will be on her car. One of the companies I work with is The Annexus Group. These guys decided to sponsor her car. Out of the goodness of their hearts, they decided to put my charity on the car. I was so touched, it was crazy.... She is the only female driver, and she is from Kansas. Watch the PHX Bush race and look for the Annexus Car with Addi's Cure on it...... Thanks Don and Ron!
Last, but not least, THANK YOU. I know there are a lot of people out there thinking of me and praying for me. We all know that is why I am still here. I have had some good times and bad during the crazy time, but the bottom line is the support I have is awesome....
Tuesday, October 30, 2007
We, Christi here, just got back home, of course the computer was down at Duke otherwise we would have posted sooner. The scans came back STABLE! Bo is still a little dumbfounded on the doctors saying that everything looks as good as before the collapsed lung, that he didn't know what to say when they told us things looked good. I would have to say he was speechless. Bo will update more later, but at this time we are going to stay the same course and enjoy the holiday season. There will be tons of pictures showing our celebrations and living life to the fullest. Thank you everyone for praying and pumping Bo up. You truly are amazing friends far and near. We love you all!
Love
Christi and Addi
PS Good Luck Freedom, she is one of our favorite helpers at Duke and she is due any day now with a little girl. I will see you January 2nd for our next set of scans.
Love
Christi and Addi
PS Good Luck Freedom, she is one of our favorite helpers at Duke and she is due any day now with a little girl. I will see you January 2nd for our next set of scans.
Monday, October 29, 2007
Sunday, October 28, 2007
Hello everyone, Christi here. I just wanted to Thank everyone for their support, kind words and silent prayers. Bo, Addi and I truly appreciate all that you do for us. We are hoping and I am expecting great news on Tuesday, but together with everyone we will handle whatever is thrown our way. I have no doubt that there is greater plan out there for everyone of us that we do not know at this time and in my heart I know Bo will come through. So Tuesday is big in Bo's mind, but in my heart it will be just a clarification on the path that we are to take. Please pray that we handle everything with grace and acceptance and good news will prevail. I would also like to ask everyone to say a prayer for my Dad. On Monday he is going in for his first yearly checkup since being diagnosed with colon cancer. I expect and pray that he will provide us with the first good news to report. Big week here and we will share whatever news with everyone when the time is right.
Thank you again
Love
Christi and Addi
Thank you again
Love
Christi and Addi
Friday, October 26, 2007
When I typed the blog entry for yesterday, I had no idea it would cause such a stir.... I got many calls/emails yesterday and today, as well as several entries into the blog. My purpose of this blog is to always be as honest as I can about how I feel and what is happening. (remember the doctor and his finger from the beginning? :) ) During my time living with this mess, I have been very lucky from the standpoint of having a great support cast. I won't even talk about Christi and Addi because you know, but my parent, friends, and a lot of people just showing they care. This has carried me a long way and has given me many positive days. However, I knew there would come a time when I would have some bad days. What surprised me most was the same support really came through again. Candace called me and yelled at me, Caroline wrote me a long email as well as Jeanne, and Christi stood by me like she always does.
I am sick still, and I do not feel very good today, but I am feeling better mentally than yesterday.
I think that the pressure of dealing with this has gotten to me. I also think it is affecting my job as well, which is very important to me. Bill, Jo, Brian, and everyone at FIG is really stepping up, but it bothers me. I just want to go back to a normal life, and that is just not possible anymore no matter what I do.
Just wanted to make sure I explained a little more. I am still fighting, and will not give this up ever because of Christi and Addi. I am sure there are better days ahead....
I am sick still, and I do not feel very good today, but I am feeling better mentally than yesterday.
I think that the pressure of dealing with this has gotten to me. I also think it is affecting my job as well, which is very important to me. Bill, Jo, Brian, and everyone at FIG is really stepping up, but it bothers me. I just want to go back to a normal life, and that is just not possible anymore no matter what I do.
Just wanted to make sure I explained a little more. I am still fighting, and will not give this up ever because of Christi and Addi. I am sure there are better days ahead....
Thursday, October 25, 2007
It has been awhile since my last post, and a lot has been going on. Christi and I just got back from Cancun, Mexico and we had a pretty good time. I got a little sick at the end of the trip, and in fact am still sick today. I am not sure if the two were related since there were different symptoms, but never the less, sick is sick. In Cancun, Christi and I relaxed some and we even swan with the dolphins. We stayed at a place called Le Blanc which was nice. Caroline and Mike, Justin and Rachel, Wade and Kenda, and Hamilton were also there from FIG. It was a reward trip for Annexus. I think everyone had a good time.
I also have been doing acupuncture for a little while. It has been interesting to be sure. It does not hurt, and they do not put the needles on fire.... Rumors. I will let you know how it is going.
Update on me - like I said, I am sick today. I have a cold. It seems that any time I travel I get something, a direct effect from chemo and my immune system being down. I do believe that my cancer is getting worse, and I think they will confirm this on the 30th. I am having more and more trouble breathing with any more than normal excursion. I am also going to for sure ask them to put me on the lung implant list. I feel like this is something I have to do. I do think the medical community is doing a lot now for detecting cancer early and better, but it seems to me that the things they are doing are all for stage 1 or stage 2 people. Also, for every death of breast cancer, they are spending $13 for research, for lung cancer, they are spending $1. This is pretty telling to me. The more "sexy" cancers are getting the dollars, while people have a stigma about lung cancer. I hope Duke says ok for the transplant.....
Christi has been really worried about me and my attitude towards this situation. I do not think I have changed at all, just think I am not going to live in a dream world either. I am worried there has been a change, and it does bother me. I am still eating great, doing all of the alternative things I can do, and praying every night. It is hard to get up every day and face the facts. I think every understands life and death, but most people do not face it daily. I am not going to just die one day suddenly, it would be a process. I wonder if that is better or worse?
I also have been doing acupuncture for a little while. It has been interesting to be sure. It does not hurt, and they do not put the needles on fire.... Rumors. I will let you know how it is going.
Update on me - like I said, I am sick today. I have a cold. It seems that any time I travel I get something, a direct effect from chemo and my immune system being down. I do believe that my cancer is getting worse, and I think they will confirm this on the 30th. I am having more and more trouble breathing with any more than normal excursion. I am also going to for sure ask them to put me on the lung implant list. I feel like this is something I have to do. I do think the medical community is doing a lot now for detecting cancer early and better, but it seems to me that the things they are doing are all for stage 1 or stage 2 people. Also, for every death of breast cancer, they are spending $13 for research, for lung cancer, they are spending $1. This is pretty telling to me. The more "sexy" cancers are getting the dollars, while people have a stigma about lung cancer. I hope Duke says ok for the transplant.....
Christi has been really worried about me and my attitude towards this situation. I do not think I have changed at all, just think I am not going to live in a dream world either. I am worried there has been a change, and it does bother me. I am still eating great, doing all of the alternative things I can do, and praying every night. It is hard to get up every day and face the facts. I think every understands life and death, but most people do not face it daily. I am not going to just die one day suddenly, it would be a process. I wonder if that is better or worse?
Sunday, October 14, 2007
Hope everyone had a good weekend. We sure did. This was Addi's birthday weekend. On Saturday, we had a party for her at the Lazy 5 Ranch. This is a place where you ride a wagon around and see different animals. Many of her friends joined us, as well as Tracia, Caroline, Mike, Grams, and Bill. We saw zebras, elk, giraffes, pigs, prairie dogs, and many other animals. I think everyone had a great time. We had pizza and cupcakes as well. That night, we had a second celebration with my dad and my grandpa. Tracia, Caroline, Mike, Grams, and Bill came as well. It was fun.
Today we are going to take it easy and let Addi play with the many toys she got. She is such a good little girl. It is really amazing have Addi around.
A big thanks goes to Christi for this weekend. She planned and did everything for Addi. She is a great Mom and deserves the credit.
Today we are going to take it easy and let Addi play with the many toys she got. She is such a good little girl. It is really amazing have Addi around.
A big thanks goes to Christi for this weekend. She planned and did everything for Addi. She is a great Mom and deserves the credit.
Thursday, October 11, 2007
Hello everyone, sorry for the slow post but things are getting busy here with our little girl turning 2 on Saturday. She is going to have a birthday party at Lazy 5 Ranch. There everyone gets to ride a wagon through this animal farm and feed them from the wagon. Do not worry I am sure there will be tons of pictures posted.
Bo also took his first plane trip, we all sure did hold our breath, but everything turned out fine. I think he was excited to get that little bit of independence back since the collapsed lung. Looks like the procedure worked. I know this is early to ask, but please pray for Bo's scans on the 30th. We are extremely anxious about these scans, since we haven't had any since the hospital stay. We are really nervous that the uncomfortable feeling Bo is having is the procedure and not the cancer. So a few extra prayers for good results and something to calm our nerves. (3 weeks is a long time from now)
We will post pictures soon of Addi turning 2. It truly is hard to believe she is two.
Love Christi and Addi
PS A special shout out to our new friend Preston Jon Graham who arrive Monday at 5:37, 8 lbs an 20 1/4 inches long. I can't wait to take Addi over to meet him!
Bo also took his first plane trip, we all sure did hold our breath, but everything turned out fine. I think he was excited to get that little bit of independence back since the collapsed lung. Looks like the procedure worked. I know this is early to ask, but please pray for Bo's scans on the 30th. We are extremely anxious about these scans, since we haven't had any since the hospital stay. We are really nervous that the uncomfortable feeling Bo is having is the procedure and not the cancer. So a few extra prayers for good results and something to calm our nerves. (3 weeks is a long time from now)
We will post pictures soon of Addi turning 2. It truly is hard to believe she is two.
Love Christi and Addi
PS A special shout out to our new friend Preston Jon Graham who arrive Monday at 5:37, 8 lbs an 20 1/4 inches long. I can't wait to take Addi over to meet him!
Friday, October 05, 2007
Just wanted to make sure everyone knew that we got two big donations in today. Equitrust gave a donation to Addi's Cure today. It was very nice and I was really appreciative. Heather Kane brought it to the office.
Allianz also gave a donation as well. They doubled what they did last year, and it meant a lot that Eric Thomes brought it in.
I hope everyone is having a good day!
Allianz also gave a donation as well. They doubled what they did last year, and it meant a lot that Eric Thomes brought it in.
I hope everyone is having a good day!
Monday, October 01, 2007
Hope this email finds everyone well. It has been awhile since I posted, so I wanted to make sure I let you know about last week. We did a lot of work, Addi went to school, and it was a good week. This weekend Kevin and Theressa Meyer came down to visit from MI. Friday night, we went out to eat. Saturday we went to the Amazing Maize with some people from work. Christi, Addi, Bill, Jo, and the Meyers won the competion in 42 minutes. It really was neat. That afternoon we went to a fund raiser for Addi's Cure. More below. Sat night, we just hung out and watch all of the shows we put on DVR and had Chinese food. Sunday, we went to play golf. I shot a 94 and did pretty well. (43-51) I got tired at the end. Trying to get back into it. I really hoped the Meyers could have stayed longer. We owe them a trip, so we need to go to MI next summer.
I wanted to talk more about the fund raiser that happened Saturday afternoon. It was really awesome. 49 bikers had a poker run for the charity. Interstate Motorcycles was a big sponsor, as well as Red Bull. They had a cookout after, it was really cool. Lauren in my office helped with it, but her parents were the ones that really brought it together. I could not believe what a good job they did.
It is very endearing to see people working together to do things that show society cares.... Very nice. For as much bad as we have in the world, we do have good. Keep the faith!
I wanted to talk more about the fund raiser that happened Saturday afternoon. It was really awesome. 49 bikers had a poker run for the charity. Interstate Motorcycles was a big sponsor, as well as Red Bull. They had a cookout after, it was really cool. Lauren in my office helped with it, but her parents were the ones that really brought it together. I could not believe what a good job they did.
It is very endearing to see people working together to do things that show society cares.... Very nice. For as much bad as we have in the world, we do have good. Keep the faith!
Sunday, September 23, 2007
Hope everyone had a good weekend. Arin, Christina, and Monroe came to see us from Miami and also to attend Touch A Truck today. They had a good time and Monroe was born the same day as Addi, so they had a good time playing together. Arin and I shared an apartment at ASU while I was there.
I read all of the logs and I thank you for weighing in on whether I should get a lung transplant or wait on science.... One asked a question if I had to take meds to make the new lungs not be rejected, and the answer is yes. If you have not weighed in yet, please do....
Today was Touch A Truck, and I am not sure how it could have gone any better. There were at least 1500 people there, and it was HOT! Tracey Greene is the one who thought of the idea to have it, and Addi's Cure was the cause she decided to use. We really appreciate it. Tracey, Christi, Rachel, Lena, Robin, Candace, and Amy did such a great job in planning this event. I heard nothing but great things from everyone who left. There were also other volunteers that did a lot as well. Brian was the cow and James was Elmo. I know they were hot. Walker, Jared, Anna, Jamie, Heather, Emily, Tracia, and I know I am forgetting some people, did such a good job helping. It was a huge success. We raised over $7,000 for Addi's Cure. Later this week I will give everyone an update on what we have done this year. I hope that these events will keep going. This would mean Addi's Cure would have a schedule like this:
Spring: Addi's Cure dinner in Cornelius, NC
Summer: Addi's Cure event in Lawrence, KS
Fall: Touch A Truck event in Cornelius, NC
Winter: Fund raiser but no event.
This would be great.
I am very lucky to have the support group I have. Part of the reason I am still here is that people have shown they care.....
I read all of the logs and I thank you for weighing in on whether I should get a lung transplant or wait on science.... One asked a question if I had to take meds to make the new lungs not be rejected, and the answer is yes. If you have not weighed in yet, please do....
Today was Touch A Truck, and I am not sure how it could have gone any better. There were at least 1500 people there, and it was HOT! Tracey Greene is the one who thought of the idea to have it, and Addi's Cure was the cause she decided to use. We really appreciate it. Tracey, Christi, Rachel, Lena, Robin, Candace, and Amy did such a great job in planning this event. I heard nothing but great things from everyone who left. There were also other volunteers that did a lot as well. Brian was the cow and James was Elmo. I know they were hot. Walker, Jared, Anna, Jamie, Heather, Emily, Tracia, and I know I am forgetting some people, did such a good job helping. It was a huge success. We raised over $7,000 for Addi's Cure. Later this week I will give everyone an update on what we have done this year. I hope that these events will keep going. This would mean Addi's Cure would have a schedule like this:
Spring: Addi's Cure dinner in Cornelius, NC
Summer: Addi's Cure event in Lawrence, KS
Fall: Touch A Truck event in Cornelius, NC
Winter: Fund raiser but no event.
This would be great.
I am very lucky to have the support group I have. Part of the reason I am still here is that people have shown they care.....
Wednesday, September 19, 2007
Hope everyone is doing well. Went to Duke today for Avastin and a checkup, but no scans. My next scans will be October 30. I did get cleared to fly again, so that was positive. When I was in the hospital for the lung deal, I was unable to do Avastin because of internal bleeding concerns. Now, this is my second time doing Avastin since then and I really feel good about it. It is really funny about side effects, they kind of tell you how the medicine is doing. Example: When I was in the hospital and could not take the Avastin, I was still taking the Tarceva pill that I take daily. The doctors think that the Avastin helps the Tarceva really "get in" and do it's job. One of the side effects of Tarceva is acne like stuff on my neck and face. When I stopped the Avastin, my face cleared up and was again like the Bo of old. Now I am back on the Avastin, face and neck is bad again. I am not complaining, the worse the rash, the better it is working I think.
My neck Duke trip is 10/10, then scans 10/30. I also talked to Duke about the lung transplant idea. I am really working on them. Susan said she would rather me do it at Duke rather than Stanford, so that is positive. I am leaning this way. The decision is:
Do not do a lung transplant, count on science to save me and make this a chronic disease treated by medicines. If this does not come true, I will die...
Do a lung transplant and trade one illness for another. Basically, taking medicine to help my body not reject the new lungs. If new medicines came out later, then I took the chance when I should not have.
What would you do? Think about it and post it on this blog so everyone can see. I do read the posts, I promise!
My neck Duke trip is 10/10, then scans 10/30. I also talked to Duke about the lung transplant idea. I am really working on them. Susan said she would rather me do it at Duke rather than Stanford, so that is positive. I am leaning this way. The decision is:
Do not do a lung transplant, count on science to save me and make this a chronic disease treated by medicines. If this does not come true, I will die...
Do a lung transplant and trade one illness for another. Basically, taking medicine to help my body not reject the new lungs. If new medicines came out later, then I took the chance when I should not have.
What would you do? Think about it and post it on this blog so everyone can see. I do read the posts, I promise!
Sunday, September 16, 2007
Hope everyone had a good weekend. The Johnson Family did. On Saturday, we hosted a shower for Lena Graham. She is having a baby boy and there were many nice ladies here. Addi and I left before it started to have father/daughter time. We went over to Brian William's new house that morning, and took Mommy's car to get washed. We then came back to crash the party. In the afternoon, Addi took a quick nap then went to Jacob Lee's birthday party. Dad got to just hang out and watch football. I got Panther season tickets this year, so Christi, Brian, Tracia, and I went to the game. We tailgated before, then watch the Panther's get drilled. Great day as far as weather, and it was so good to get back to see Addi. I will ask Christi to post some more pictures soon.
Wednesday i go back to Duke. I am feeling ok. Still tired, still a little short of breath going up stairs, etc. I did send one of my doctors a conversation I had with a guy that had BAC like me, and got a double lung transplant. He is still rocking, although he did say it was like trading having cancer to having a foreign organ in your body. He said it is still tough. Nice guy.
All right, I have to do it. It is September, and this is when last year I really pushed everyone to give to Addi's Cure. I am asking that again. We have really done a great job of raising money this year, and I will make the same offer I made last year. From this point on, I will match up to $25,000 of what people give until the end of the year. Please give what you can. Last year i had to match it, and I want to match it again!!!! I am going to send an email to all the companies that gave last year as well.
A reminder - September 23 is Touch A Truck in Lake Norman. Here is the website:
http://www.lkntouchatruck.com
Wednesday i go back to Duke. I am feeling ok. Still tired, still a little short of breath going up stairs, etc. I did send one of my doctors a conversation I had with a guy that had BAC like me, and got a double lung transplant. He is still rocking, although he did say it was like trading having cancer to having a foreign organ in your body. He said it is still tough. Nice guy.
All right, I have to do it. It is September, and this is when last year I really pushed everyone to give to Addi's Cure. I am asking that again. We have really done a great job of raising money this year, and I will make the same offer I made last year. From this point on, I will match up to $25,000 of what people give until the end of the year. Please give what you can. Last year i had to match it, and I want to match it again!!!! I am going to send an email to all the companies that gave last year as well.
A reminder - September 23 is Touch A Truck in Lake Norman. Here is the website:
http://www.lkntouchatruck.com
Wednesday, September 12, 2007
Just wanted to pop in and say hello. Things are going very well. Work has been crazy, and I have not been able to go quite as fast as I was going before. I am still letting my lung heal from the procedure, and it still is painful. I cough a lot of still have to catch my breath some. One of our friend's mom went through this and actually did phy. therapy so maybe I will look into that. On a bright note, I did hit golf balls on Saturday for about 45 minutes, and did pretty well.
Addi and Christi are really doing great. Addi is on her way to school, and she loves it. In fact, when you pick her up, she tries to hide so she will not have to leave. She is such a good girl.
I really want to thank everyone again for all the prayers and support during all of this. I can not ever thank you enough. I truly feel that these two things have been instrumental in my health.
Don't forget to check out www.addiscure.org from time to time....
Addi and Christi are really doing great. Addi is on her way to school, and she loves it. In fact, when you pick her up, she tries to hide so she will not have to leave. She is such a good girl.
I really want to thank everyone again for all the prayers and support during all of this. I can not ever thank you enough. I truly feel that these two things have been instrumental in my health.
Don't forget to check out www.addiscure.org from time to time....
Tuesday, September 04, 2007
Today was a big day in the Johnson House. Addison Morgan Johnson started school. Mommy was certainly sad, but our little girl made us proud. She marched right in there and didn't look back. Sad for Mommy. She loved it so much she hid from me when it was time to leave. I promised we were going back tomorrow and that seemed to help. Look out world, here comes Addi!
Monday, September 03, 2007
Happy Labor Day to everyone. We have really taken it easy this weekend, not doing too much. On Friday we got Christi a new car, then Saturday night we had Jim and Jamie over, on Sunday we went to Phil and Lena's house, and today we went out on the boat for a little while. Wait a minute, we were really busy again....
I have to say I am bummed. I would be playing golf over in Scotland now had I not had the problems I have been through lately. While I am not stressing over it, the day i was supposed to play St. Andrews I did think a lot about it. Justin J. Sent me a rain suit for the trip, so I have been looking at the suit and really wishing I was there with those guys.
Ok - I know everyone has heard already, but App State beat Michigan and I am PUMPED. I did my undergrad at App and was so excited. I did watch the game and was so into it. I watched it over at my sister Tracia's house since she has the Big 10 Network. Awesome. Anyone from MI has my sympathies...
Please keep Kate in your prayers, she had a backwards step in her treatment for lung cancer. She is up at UNC trying to figure out what to do next..... I am thinking about her. Also Jay has had a very bad week, keep him in your prayers as well....
Hope everyone has a great holiday weekend......
I have to say I am bummed. I would be playing golf over in Scotland now had I not had the problems I have been through lately. While I am not stressing over it, the day i was supposed to play St. Andrews I did think a lot about it. Justin J. Sent me a rain suit for the trip, so I have been looking at the suit and really wishing I was there with those guys.
Ok - I know everyone has heard already, but App State beat Michigan and I am PUMPED. I did my undergrad at App and was so excited. I did watch the game and was so into it. I watched it over at my sister Tracia's house since she has the Big 10 Network. Awesome. Anyone from MI has my sympathies...
Please keep Kate in your prayers, she had a backwards step in her treatment for lung cancer. She is up at UNC trying to figure out what to do next..... I am thinking about her. Also Jay has had a very bad week, keep him in your prayers as well....
Hope everyone has a great holiday weekend......
Friday, August 31, 2007
Hello - Christi - Things here are finally slowing down a little. thankfully. Bo and I went to Duke on Wednesday to check and see how the procedure is doing and everything is looking good. He is still really sore and the talc powder, glue, they put in his lung still irritates him to where he coughs some, but this lung is still up. Yeah. He also got to do his chemotherapy, Avastin, which was huge for Bo. This has been what kept things stable with the Tarceva. So we are more comfortable with him on it.
On another note, Addi starts gymnastics today with her friend Patterson. We are so excited, do not worry I am sure there will be a million pictures taken and a few posted out here. So we are off to try some flips.
Take care
Christi
On another note, Addi starts gymnastics today with her friend Patterson. We are so excited, do not worry I am sure there will be a million pictures taken and a few posted out here. So we are off to try some flips.
Take care
Christi
Monday, August 27, 2007
Hello. This is Bo for the first time in awhile. Christi and Tracia have been doing a wonderful job keeping you informed, and I thank them both for that.
What can I say about staying in a hospital? First, it was not fun. While the nurses on 9300 were awesome and made it very pleasant, overall, I am not a fan. I do want to make sure I say hello to the nurses up thee, because without them, I would have been lost. I can not tell you what all they did to me because they had me drugged up, but I must say, it was pleasant. There are too many to name and I am afraid I would forget one any way. I will tell you guys out there, there is a hot one (super smart too!) that is 25 and single.... I will not say here name, but I hope she gets someone good. I can say good things about all of them. I do have to say one tried hard to mask a northern accent, and I did have an international friend up there.... I had a few visitors, and I appreciate them coming. Nick, Steve, Trace, Lauren, Kristen, Carline, Mom, Bill, and Christi/Addi of course. If I forgot someone, please let me know!
I am very grateful to be out.
My Uncle Terry in Kansas sent the following and I thought it was important:
In reference to organ transplants, one thing you might consider is asking your blog readers to think about signing up as organ donors. I've been signed up as an organ donor for over 30 years.
Information on becoming an organ donor is available at:
http://www.organdonor.gov/
Also, there are approximately 100,000 individuals in the United States that are currently in urgent need of organ donations. This is a matter of life and death for them.
Each state has a website that has information on how someone can become a donor. The following are websites for North Carolina and Kansas as
examples:
http://www.donatelifenc.org/
http://www.mwob.org/
There is no greater gift of life, than saving a life after our own deaths.
What can I say about staying in a hospital? First, it was not fun. While the nurses on 9300 were awesome and made it very pleasant, overall, I am not a fan. I do want to make sure I say hello to the nurses up thee, because without them, I would have been lost. I can not tell you what all they did to me because they had me drugged up, but I must say, it was pleasant. There are too many to name and I am afraid I would forget one any way. I will tell you guys out there, there is a hot one (super smart too!) that is 25 and single.... I will not say here name, but I hope she gets someone good. I can say good things about all of them. I do have to say one tried hard to mask a northern accent, and I did have an international friend up there.... I had a few visitors, and I appreciate them coming. Nick, Steve, Trace, Lauren, Kristen, Carline, Mom, Bill, and Christi/Addi of course. If I forgot someone, please let me know!
I am very grateful to be out.
My Uncle Terry in Kansas sent the following and I thought it was important:
In reference to organ transplants, one thing you might consider is asking your blog readers to think about signing up as organ donors. I've been signed up as an organ donor for over 30 years.
Information on becoming an organ donor is available at:
http://www.organdonor.gov/
Also, there are approximately 100,000 individuals in the United States that are currently in urgent need of organ donations. This is a matter of life and death for them.
Each state has a website that has information on how someone can become a donor. The following are websites for North Carolina and Kansas as
examples:
http://www.donatelifenc.org/
http://www.mwob.org/
There is no greater gift of life, than saving a life after our own deaths.
Saturday, August 25, 2007
Even better news! We are all home again! Bo got to come home yesterday. We are back a square one of him trying to build back up to his go-go-go, but we are getting there. I think he had a better stay at the hospital this time, shorter, but we were better prepared on what to expect. Once again we had some fabulous nurses and doctors that kept him well under control and taken care of, I guess now it is my turn, of course with help with family and friends. I do think the nurses had it easier he was tube tided to the bed, so I will have to work on that one.
We are off to have some pancakes, Addi's Saturday morning breakfast and then just rest.
Take care and thank you for all the prayers that brought my husband home to me, again.
Christi and Addi
We are off to have some pancakes, Addi's Saturday morning breakfast and then just rest.
Take care and thank you for all the prayers that brought my husband home to me, again.
Christi and Addi
Thursday, August 23, 2007
Hello - Christi here. We just wanted to let you know that things are going well. Bo is handling the pleuradesis (spelling and don't laugh you doctors and nurses our there) We found out after the fact that this is a quite painful procedure, but he is hanging in there. They said the more pain the better. It means his lung is sticking, so bring on the pain. Addi and I spent most of yesterday with Bo. And surprise, surprise she didn't take a nap at all. She was way to excited to see daddy to do something as silly as nap. You mom's out there can imagine my day. I think Bo actually sympathized with me, because he might of needed the rest more than anyone. Don't worry I took her out of the room for a while and we played throughout the hospital, now everyone knows Addi. (especially floor 5 with the fish tank) It goes to show that Addi wants her Daddy home like yesterday (which is very much her father's trait)
They clamped Bo's tube today which hopefully means it will come out in 24 hours. Then we just wait for a chest x-ray, Avastin (chemo) and he can go home. Sounds simple when I put it like that. We will just wait and see.
Addi and I are planning a visit tomorrow, but Addi's friend Kristen (babysitter at UNC) will hopefully take her for most of the day and go swimming. Then hopefully Bo will be out before we know it. Not to soon though, we want to make sure that lung stays up this time.
On another note, please send special prayers out to our friends, Jay, Micah and Gracie. Their little girl, Gabi -7 months old, passed away on Monday. She had heart complications and God just had a bigger and better plan for her. But right now her parents need some special loving and Gracie, the older sister needs some hugs her way. Please know that if we can do anything for you, we are here.
Love to all
Christi and Addi
They clamped Bo's tube today which hopefully means it will come out in 24 hours. Then we just wait for a chest x-ray, Avastin (chemo) and he can go home. Sounds simple when I put it like that. We will just wait and see.
Addi and I are planning a visit tomorrow, but Addi's friend Kristen (babysitter at UNC) will hopefully take her for most of the day and go swimming. Then hopefully Bo will be out before we know it. Not to soon though, we want to make sure that lung stays up this time.
On another note, please send special prayers out to our friends, Jay, Micah and Gracie. Their little girl, Gabi -7 months old, passed away on Monday. She had heart complications and God just had a bigger and better plan for her. But right now her parents need some special loving and Gracie, the older sister needs some hugs her way. Please know that if we can do anything for you, we are here.
Love to all
Christi and Addi
Tuesday, August 21, 2007
Hello everyone...sorry something is going on with the blog and some posts are not posting. I am truly sorry for that. For those that do not know, we had a minor setback this week. The story goes like this, Friday Bo felt like he had the "gurgling" in his chest again, which previously has been a sign of a collapsed lung. So he went to the hospital with Bill and had a Chest X-ray, and needless to say they wanted to admit him right then and there and put another tube in. Remember he just had that out on Monday night and was home Tuesday. So he talked with his doctor from Duke and they recommended him to come up for his appointment on Monday and they would look at the scans and determine what method they thought best. ((They did say to do this only if he felt good enough, he felt fine) in hopes that what the Charlotte doctors were seeing was the part of his lung that never fully inflated.)
Bo and I went to Duke on Monday, to have him admitted back into the hospital for a collapsed lung. It collapsed to where it was before. This time only air and hopes that it would come up faster since is was down for a shorter amount of time. The tube went in Monday around noon and Bo took it like a trooper now with 2 holes in his side. This afternoon they did the procedure with the talc powder that works like glue and will glue that will keep that part of his lung attached to the lung cavity. (this is a typical procedure for someone that keeps having a collapsed lung) Unfortunately this is painful for a couple of weeks. The doctors say the pain is good, we know that it is attaching, but poor Bo.
So That is where we stand right now. At first we were extremely disappointed to be back in the hospital, but Bo is doing better handling it. It helps that we have some of the same great nurses we had before. Plus we keep meeting more and more great people. School as also started so some wonderful friends that go to UNC and State have been stopping in to help pass the time.
I will try to do better on posting Bo's updates, it is complicated when I stay with him at the hospital, but we will keep you posted. For those asking, Bo is located at Duke Hospital, 2301 Erwin Road, Durham, NC 27710 9th floor.
Love to All
Christi and Addi
Bo and I went to Duke on Monday, to have him admitted back into the hospital for a collapsed lung. It collapsed to where it was before. This time only air and hopes that it would come up faster since is was down for a shorter amount of time. The tube went in Monday around noon and Bo took it like a trooper now with 2 holes in his side. This afternoon they did the procedure with the talc powder that works like glue and will glue that will keep that part of his lung attached to the lung cavity. (this is a typical procedure for someone that keeps having a collapsed lung) Unfortunately this is painful for a couple of weeks. The doctors say the pain is good, we know that it is attaching, but poor Bo.
So That is where we stand right now. At first we were extremely disappointed to be back in the hospital, but Bo is doing better handling it. It helps that we have some of the same great nurses we had before. Plus we keep meeting more and more great people. School as also started so some wonderful friends that go to UNC and State have been stopping in to help pass the time.
I will try to do better on posting Bo's updates, it is complicated when I stay with him at the hospital, but we will keep you posted. For those asking, Bo is located at Duke Hospital, 2301 Erwin Road, Durham, NC 27710 9th floor.
Love to All
Christi and Addi
Monday, August 20, 2007
The Johnson clan is a little busy today so they enlisted the Big Sister's help to update everyone with Bo's latest news......
Late Friday night, Bo decided that he wanted to have an X-ray of his lung because he felt like it might have collapsed again. So, he went to Presbyterian Hospital at Exit 23 that night to have the X-ray done. After the doctors at Presbyterian Hospital consulted with Bo's primary physician at Duke, they decided that although there was some evidence that the lung had partially collapsed, Bo should hold off on doing anything until he went to Duke on Monday (a pre-scheduled visit for Avastin).
This morning, after meeting with Dr.Crawford, it was determined that Bo's lung had collapsed again. The same weakened spot in his lung had not strengthen as they had hoped. He has been admitted in the hospital and around lunchtime, a tube was inserted into the lung lining to aid in re-inflating the lung. Later this afternoon, the doctors are meeting with Bo to schedule a procedure in which they will insert a special type of glue that will help to strengthen the lung lining to help prevent a collaspe in the future. It is my understanding from Christi that this a typical procedure for a second collaspe of the lung, and the main side effect of this procedure is that the glue decreases the elasticity of the lung.
Bo will remain in the hospital until the lung re-inflates. While there is not a good way of predicting how long this will take, but Bo is saying that he is coming home Thursday no matter what. Of course, his release date is up to his doctors. (Nice try, Bo!) We will try to keep the blog updated with the most recent updates as we receive them. All prayers and well wishes are appreciated!
Tracia
Late Friday night, Bo decided that he wanted to have an X-ray of his lung because he felt like it might have collapsed again. So, he went to Presbyterian Hospital at Exit 23 that night to have the X-ray done. After the doctors at Presbyterian Hospital consulted with Bo's primary physician at Duke, they decided that although there was some evidence that the lung had partially collapsed, Bo should hold off on doing anything until he went to Duke on Monday (a pre-scheduled visit for Avastin).
This morning, after meeting with Dr.Crawford, it was determined that Bo's lung had collapsed again. The same weakened spot in his lung had not strengthen as they had hoped. He has been admitted in the hospital and around lunchtime, a tube was inserted into the lung lining to aid in re-inflating the lung. Later this afternoon, the doctors are meeting with Bo to schedule a procedure in which they will insert a special type of glue that will help to strengthen the lung lining to help prevent a collaspe in the future. It is my understanding from Christi that this a typical procedure for a second collaspe of the lung, and the main side effect of this procedure is that the glue decreases the elasticity of the lung.
Bo will remain in the hospital until the lung re-inflates. While there is not a good way of predicting how long this will take, but Bo is saying that he is coming home Thursday no matter what. Of course, his release date is up to his doctors. (Nice try, Bo!) We will try to keep the blog updated with the most recent updates as we receive them. All prayers and well wishes are appreciated!
Tracia
Wednesday, August 15, 2007
Hello Everyone, Christi still...sorry hopefully soon we can Bo to do some typing. But I have really great news, Bo is home! We are so excited! He is moving a little slow and very tentative with his breathing, but at home. I cannot tell you how happy I am to have the two people I love most in the world under one roof. We are going to have to try and get Mr. Johnson to slow down so no more visits to Duke. Although we did meet some really wonderful people that make living and fighting more important than ever.
Bo left the hospital with his lung healed up, but after lying in bed for 7 days and only getting up to use the restroom, he is a little tired and winded with everything he does. I think a couple of days chasing Miss Addi around might help.
I just wanted to let everyone know that things are on the mend. I think the collapsed lung was a wake up call to all of us that the fight is still going strong. Bo is a little mentally tired right now and mad at cancer, but I know he will get through this. If anyone has any great words of encouragement and inspiration, please send them his way.
Love
Christi and Addi
Bo left the hospital with his lung healed up, but after lying in bed for 7 days and only getting up to use the restroom, he is a little tired and winded with everything he does. I think a couple of days chasing Miss Addi around might help.
I just wanted to let everyone know that things are on the mend. I think the collapsed lung was a wake up call to all of us that the fight is still going strong. Bo is a little mentally tired right now and mad at cancer, but I know he will get through this. If anyone has any great words of encouragement and inspiration, please send them his way.
Love
Christi and Addi
Saturday, August 11, 2007
Hello everyone, Christi again. Hopefully tomorrow we can get Bo back online. Unfortunately he is still in the hospital and will probably be there through half of next week. Bo's lung is expanding back fairly well, there is just a little part that cannot seem to heal up. But there really is no time frame for this and no matter what, nothing would fit Bo's time frame. (he is ready to go now, but knows he should do want is best for his body) The doctor's decided to leave the tube in over the weekend to give his body more time to self heal. Dr. Crawford is going to speak with the thoracic surgeons on Monday for the best course of action. We really have three options, keep waiting (ugh), perform a procedure that will essentially, in crude terms, glue his lung to the lining, or pray his body heals itself. Either option they are looking to make sure this will not happen many more times. Bo is in good spirits, still a lot of pain so he using a lot of their pain medicine. So if you call be aware of the slurred speech due to the medicine. But his is starting to go stir crazy so please shoot him and email or phone call to help pass the time. They will hopefully know something Monday, perform whatever they are going to due by Tuesday so he can be home net Thursday or Friday. Those are hopefully the latest dates out there. Everything is so much up in the air depending on what his body does.
I do have to say thank you to everyone that has sent their well wishes and helped out with Addi. A huge THANK YOU to Sarah and Sue (Joy and Barb) and all the nurses at Duke. They are incredible for their work and for the time they spend talking with Bo. As you all know him he likes to talk and has told them his life story and they have nicely shared most of theirs. We do not have one complaint about the staff at Duke, Bo just isn't loving the food.
take care everyone and I will update more later and like I mentioned hopefully Bo will be online late tomorrow. (I got him a wireless Internet card)
Christi and Addi
Sorry for the typos I missed. A little tired here.
I do have to say thank you to everyone that has sent their well wishes and helped out with Addi. A huge THANK YOU to Sarah and Sue (Joy and Barb) and all the nurses at Duke. They are incredible for their work and for the time they spend talking with Bo. As you all know him he likes to talk and has told them his life story and they have nicely shared most of theirs. We do not have one complaint about the staff at Duke, Bo just isn't loving the food.
take care everyone and I will update more later and like I mentioned hopefully Bo will be online late tomorrow. (I got him a wireless Internet card)
Christi and Addi
Sorry for the typos I missed. A little tired here.
Thursday, August 09, 2007
I just wanted to post a quick update. Bo is doing better. Unfortunately Bo has both air and fluid where his lung collapsed, not that that is any worse or better, just more complicated to remove. But it is starting to come out, of course not fast enough for Bo, but coming out. He is doing better with his pain medicine is able to rest more comfortably. So now we just wait for it to come out and if you ask me I am thinking they are trying to get all the hot air out of him which could be hopeless. Just kidding
I do have to say that whenever I talk to the nurses station, whomever it may be, they always seem to know him on a first name basis. I am not sure if that is good or bad, but he does seem to be a hit up there.
Anyway, Addi and I are off to spend the day with him. We will try and write more when we get back.
Thanks for all the well wishes and prayers. They are working!
Christi and Addi
I do have to say that whenever I talk to the nurses station, whomever it may be, they always seem to know him on a first name basis. I am not sure if that is good or bad, but he does seem to be a hit up there.
Anyway, Addi and I are off to spend the day with him. We will try and write more when we get back.
Thanks for all the well wishes and prayers. They are working!
Christi and Addi
Wednesday, August 08, 2007
Hello everyone, Christi here. Sorry this is the first chance I have had to post on our results from yesterday. Yesterday was interesting to say the least, we certainly had mixed feelings. Bo was anxious for a reason. We found out he has another collapsed lung, but this time more severe than last and he has been admitted into the hospital with a tube put into his side to help inflate his lung again. This is in the same area it was previously, so we are going to try and figure out if this will be reoccurring or what is causing this to happen. On the other side, from the inflated lung it appears that the cancer is stable still. So great news, but it is hard to tell because his lung other lung is partially collapsed. He is in good spirits, a little drugged up - actually a lot. But the nurses insist that having a tube in your side is extremely painful with all the nerve endings protecting those vital organs, so he isn't just enjoying life. They think he might have to stay throughout the weekend depending on how fast his body heals itself. The longer the lung with deflated, the longer it takes to inflate. I do have to say the doctors were shocked that Bo was walking around and golfing with his lung like this, but we all know he is a stud. I will certainly pass his well wishes along and please keep praying for a full and quick recovery.
Take care and I will post more later
Christi and Addi
Take care and I will post more later
Christi and Addi
Monday, August 06, 2007
I just wanted to send a little request out. Bo and I are a little anxious this month about scans, no reason in particular, other than we are trying to figure out how to live with cancer. So when you are praying tonight, will you send a little extra to help calm our nerves. Bo's got high blood pressure anyway because of some medicines, so we need a little Zin from everyone.
Thanks and we will post as soon as possible the scan results.
Love
Christi and Addi
Thanks and we will post as soon as possible the scan results.
Love
Christi and Addi
Wednesday, August 01, 2007
Hello Everyone, that is still out there...with today's blog I must make a warning. Too much information about Christi, via Addi's dressing up. Kids do the funniest things and needless to say Addi found herself a new hat. Unfortunately that isn't a beret on her head, but Mommy's (new) underwear. We have been talking about potty training and well I guess she wants to wear big girl panties. Hehehehe I am funny today.
Also I wanted to mention the dress is for Papa in Kansas. It reminded us of his denim shirts he wears to work in the winter time. I was funny as a kid also and teased him about what he would wear to work each morning and ask him "Denim".
Anyway, things here have been alright. Bo got the ol stomach bug that has been going around and so he was down and out for a couple days (Sunday until today) but he is feeling better. I thought Addi might have something, but I am beginning to think more and more it is hear 2 year molars coming in. She had one break through months ago, but I believe the others are one their way. I shouldn't complain because I had it easy with everything except molars so far.
Addi and I wanted to thank everyone for the wonderful event and time in Kansas. We had such a great time, raised a bunch of money, Addi got to ride a horse, and I got to hear how country I am sounding. I am currently enrolled in speech classes her thanks to the interview from Channel 6.
Nothing else new really to report other than I did some shopping (not in New York) and I bought some underwear. I warned you to much info.Take care everyone and for those not feeling well get better, Cyndi.
Love
Christi and Addi
Tuesday, July 31, 2007
Just wanted to update everyone. Addi and I are sick. We have been sick since Sunday. Addi is running a fever, and I was, but with other complications. Whenever I get sick I get scared a little. I had a friend named Daneen who got sick on a Thursday, found out she had lung cancer that weekend, and then died by the next weekend. This is why it scares me so much.
I also wanted to thank the people of Lawrence again. We had a great event there, and I know we did so well in raising money. Christi and I are thinking of away to make sure we show our appreciation. I hope this will be an annual event....
I also wanted to thank the people of Lawrence again. We had a great event there, and I know we did so well in raising money. Christi and I are thinking of away to make sure we show our appreciation. I hope this will be an annual event....
Wednesday, July 25, 2007
It has been awhile since I posted, and a lot has happened. I had a guys weekend in Pinehurst, an Addi's Cure event in Lawrence, and I have been to SEVERAL cities along the way.
First - The 5 B's Classic in Pinehurst. This is an annual event I have been to for the past 10 years. Several of my frat brothers got together at Brian Williams' dad beach place and it has grown into a major event. If you are the individual winner, not only do you get some $$b you get the pink jacket and the silver cup. I have never won this event, and I was really hoping to do well. You guessed it, bad the first day and really out of the tournament. The good news is I went 2-1 on the ryder cup part. Brian Williams did win this year, and I was happy for him. However, next year will have to be my year.
I got back yesterday from Lawrence and the Addi's Cure event. I went out to Lawrence on Saturday and played golf on Sunday with Chris Dodds, Curtis Morgan, Justin J, Phil Frost, and of course me. We played Lawrence Country Club, good track, needs 1 more year since they just redid the whole course. It was really in pretty good shape considering. On Monday night, we had an event at 23rd Street Brewery. It was packed and a lot of fun. There was a silent auction, etc. There were many volunteers, and I know I will miss some, but here is a good try: Jen and Bill Newton, Mel, Erin, Crystal, Bev, Red Dog, Mom (Terri Morgan), Randy and Catherine Glidewell and Cyndi, Ami and Caitlin. Each person was really important in getting this thing going. Crystal, Christi's sister, had the idea and boy did everyone pull it off. If I missed someone, please let me know so I can post them.
As far as my health, I am still doing fine. I am a little worried of course, my next scans are August 7th. Again, the goal is 5 years. That means I have to stick around until June 1, 2011. Thanks to everyone who keeps me on track.
There have been several new articles and interviews if you would like to watch them. Go to addiscure.org and look on the left hand side. There are some really good ones from Lawrence. The young lady at channel 6 did an outstanding job.
Please say an extra prayer for the Acker family this week as well. Little Gabby is doing great, she is having to be let down slowly off some very hard drugs she had to have when they fixed her heart. She got addicted to them, so it is a difficult process. Please take time to pray for them.
I will write more soon. I hope Christi will post some new pictures of Addi as well.
First - The 5 B's Classic in Pinehurst. This is an annual event I have been to for the past 10 years. Several of my frat brothers got together at Brian Williams' dad beach place and it has grown into a major event. If you are the individual winner, not only do you get some $$b you get the pink jacket and the silver cup. I have never won this event, and I was really hoping to do well. You guessed it, bad the first day and really out of the tournament. The good news is I went 2-1 on the ryder cup part. Brian Williams did win this year, and I was happy for him. However, next year will have to be my year.
I got back yesterday from Lawrence and the Addi's Cure event. I went out to Lawrence on Saturday and played golf on Sunday with Chris Dodds, Curtis Morgan, Justin J, Phil Frost, and of course me. We played Lawrence Country Club, good track, needs 1 more year since they just redid the whole course. It was really in pretty good shape considering. On Monday night, we had an event at 23rd Street Brewery. It was packed and a lot of fun. There was a silent auction, etc. There were many volunteers, and I know I will miss some, but here is a good try: Jen and Bill Newton, Mel, Erin, Crystal, Bev, Red Dog, Mom (Terri Morgan), Randy and Catherine Glidewell and Cyndi, Ami and Caitlin. Each person was really important in getting this thing going. Crystal, Christi's sister, had the idea and boy did everyone pull it off. If I missed someone, please let me know so I can post them.
As far as my health, I am still doing fine. I am a little worried of course, my next scans are August 7th. Again, the goal is 5 years. That means I have to stick around until June 1, 2011. Thanks to everyone who keeps me on track.
There have been several new articles and interviews if you would like to watch them. Go to addiscure.org and look on the left hand side. There are some really good ones from Lawrence. The young lady at channel 6 did an outstanding job.
Please say an extra prayer for the Acker family this week as well. Little Gabby is doing great, she is having to be let down slowly off some very hard drugs she had to have when they fixed her heart. She got addicted to them, so it is a difficult process. Please take time to pray for them.
I will write more soon. I hope Christi will post some new pictures of Addi as well.
Thursday, July 12, 2007
Hello Everyone (Christi) So I beat a week by one day. For those out there sorry about that. Things here have been a typical summer. Addi just finished up with her swim lessons this week. She loves the water, but was a little mad at the teacher. (The first day she fell off the steps and went under water. I do have to say she did well. She held her breath and tried to swim, but needless to day she was a little mad and untrusting of the teacher) But by the end they would play, swim and blow bubbles together.
This weekend is Bo's annual golf tournament with the boys in the Pinehurst location. (I was corrected that they are not playing Pinehurst, just in the area) So he will be off to that and enjoying some male bonding time. Scary thought. So Addi and I will be hanging with the other husband less wives, probably talking smack about how they left us with the kids and we need to pay them back with the trip to New York, shopping.
Anyway things here are good.
Bo did have a question about his diet. He is still maintaining eating healthy. Each morning he has a shake, smoothie and for dinner we eat a lot of fish and organic veggies. If you live in the Cornelius/Huntersville area there is a great company, Absolute Organics, that once a week delivers a box full of organic veggies and fruits. They change up each week, so it is nice to eat different foods. It is a little hard to maintain the diet when sauces are pretty much out of the question. We grill a lot of foods. I stay away from sauces that have high fructose corn syrup, which is about anything that tastes good. (I guess if you pour the sugar in anything because sweet and good) So that limits us some. I still believe staying away from sugars is important. So I am working on my natural spices, we have learned we are not huge rosemary fans :( There is limit to how much you can add.
Enough rambling about food, thank goodness Bo doesn't post what I cook anymore. I was feeling a lot of pressure.
Take care everyone and see you soon
Christi
This weekend is Bo's annual golf tournament with the boys in the Pinehurst location. (I was corrected that they are not playing Pinehurst, just in the area) So he will be off to that and enjoying some male bonding time. Scary thought. So Addi and I will be hanging with the other husband less wives, probably talking smack about how they left us with the kids and we need to pay them back with the trip to New York, shopping.
Anyway things here are good.
Bo did have a question about his diet. He is still maintaining eating healthy. Each morning he has a shake, smoothie and for dinner we eat a lot of fish and organic veggies. If you live in the Cornelius/Huntersville area there is a great company, Absolute Organics, that once a week delivers a box full of organic veggies and fruits. They change up each week, so it is nice to eat different foods. It is a little hard to maintain the diet when sauces are pretty much out of the question. We grill a lot of foods. I stay away from sauces that have high fructose corn syrup, which is about anything that tastes good. (I guess if you pour the sugar in anything because sweet and good) So that limits us some. I still believe staying away from sugars is important. So I am working on my natural spices, we have learned we are not huge rosemary fans :( There is limit to how much you can add.
Enough rambling about food, thank goodness Bo doesn't post what I cook anymore. I was feeling a lot of pressure.
Take care everyone and see you soon
Christi
Friday, July 06, 2007
I have a question, what medicines are you taking now and what are the side effects and how well do you think they are working??
Right now I am taking Tarceva and Avastin. Tarceva is a pill I take every day. Avastin is a drug I take every three weeks intravenously. Both are targeted therapy drugs, which means they go directly to the cancer and work on it there....
Right now I am taking Tarceva and Avastin. Tarceva is a pill I take every day. Avastin is a drug I take every three weeks intravenously. Both are targeted therapy drugs, which means they go directly to the cancer and work on it there....
Monday, July 02, 2007
I know I have not posted for awhile, so I wanted to get back into the swing of things. I was really sick with a cold at the beginning of the week, but I am better now. I played 18 on Friday afternoon with Aviva, and then went to a tourn on Sat but I only played 9. Felt a little week, so I decided to just finish the 9 and go home. Sunday we all went out on the boat and had a great time. We will do the same on the 4th as well.
I am very excited about going to several places this fall. Christi and I are going to go to Greece and I also am going to go to Scotland to play golf. We are very lucky to travel like we do.
I wish everyone could spend some quality time with Addi. She is becoming quite the young woman. She slept last night in her big girl bed, and she is so excited. She is taking swimming lessons and she loves boating. I went ahead and got Panther tickets this year so she is going to be my little Panther fan...... She is really awesome. Christi will put so new pictures up soon.
Doesn't anyone have any questions????? Send them to me.
I am very excited about going to several places this fall. Christi and I are going to go to Greece and I also am going to go to Scotland to play golf. We are very lucky to travel like we do.
I wish everyone could spend some quality time with Addi. She is becoming quite the young woman. She slept last night in her big girl bed, and she is so excited. She is taking swimming lessons and she loves boating. I went ahead and got Panther tickets this year so she is going to be my little Panther fan...... She is really awesome. Christi will put so new pictures up soon.
Doesn't anyone have any questions????? Send them to me.
Wednesday, June 27, 2007
I have made it back from the worst cold I have ever had! It has been a process, that is for sure. Christi and I had a lot of fun at the beach with our friends and family. I got a cold the last night, and I have just felt better today. I did go to Duke on Monday for treatment, but other than that, I have been in bed.
More later!
More later!
Monday, June 25, 2007
Hello Everyone! (Christi here) Sorry we have been gone for so long...we are out there just living life! The beach was great. Addi isn't a huge fan of sand (she got wiped out by a wave one of the times we were in Hawaii) but she loved the seashells. We have extra if anyone needs some. She also loved having her family and friends close by. She woke up (after hollaring for Daddy) saying Peyton, Patterson, Lena, Phil and then proceeded to say the rest of the family...even Uncle Mikey. We had a nice relaxing weekend, Bo did catch a cold at the end, so we are trying to get him to rest (Which is like try to get Addi to sit down, impossible)
I do have to mention JULY 23rd...please mark your calendars if you are going to be in the L.A. area (Lawrence Area) at that time. My family and friends are putting on an Addi's Cure event at 23rd Street Brewery in Lawerence...at 3512 Clinton Parkway...please come. The restaurant is giving a percentage of all dinner tickets back to Addi's Cure. We are working on a other items, hopefully, but more importantly I would love to see everyone in Kansas. (if anyone wants to help or knows a company that would love to help sponsor, just email me at info@addiscure.org)
Talk with everyone soon!
Christi and Addi
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