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.....

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!

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:

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 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!

As promised some pictures of Addi performing Gymnastics...sort of.

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......