Monday, March 31, 2008

Hello all. Sorry for not posting for awhile. I thought you may want to hear from Christi some and I was really busy with March Maddness! It is funny - there have been several times when people have said I love your blog, exceptionallywhen Christi posts. So there you have it!

Last Thursday, the Sweet Sixteen was held in Charlotte. Eric T, Lee B, Stu R. came down for the games. I had to buy the tickets in Jan of 2007, hoping Carolina would be here. We got lucky and of course Carolina was here in Charlotte. They beat Washington State and Louisville to go to the final four. It was really awesome...

Addi has been saying "gooooooo TARHEELS" to Christi and I am loving it. Saturday night, Kansas plays Carolina so we will have a house divided. I am trying to get tickets for Monday's game, so if you know of someone, let me know. Either way, the Johnson's will have someone in the final game.

Christi explained the situation about the lung transplant. I am trying hard to believe that giving up chemo was the right thing to do. I have to give blood the week of the 7th so that will be the sign if everything is good or not. April 24th will be a time for me to go back up and check my status.....

Friday, March 28, 2008

Hello Everyone, Christi here, sorry for the tardiness, this past week just got away from us. I guess the Madness has taken over! Big night for KU, Carolina won so Yeah!
Anyway on to the more important stuff, Bo went and met with the doctors and filled out the paperwork, but has to wait to be officially activated to the lung transplant list. Obviously we are extremely anxious, but we have to trust the doctors on this one. His blood tests came back with escalated levels of his kidney functions and we have to wait for those to come back clean for 2 weeks in a row. Our oncologist believe this is because of the chemo that he has been taking, (Altima has been known to effect the kidneys) so hopefully it will come down quickly and we can officially get the ball rolling.
On the positive note, Bo's says I drive him crazy with my silver lining, Obviously God wants us the have as much "normal" time together as possible. And we get a better countdown on when he will be ready for the list. Bo did speak with his Oncologist and asked about how he thought Bo not doing chemo will effect him and Dr. Crawford thought that since Bo has responded so well to this chemo and shrunk the cancer some, that there is not reason to think he doesn't have time until the transplant. He thinks this will only make Bo stronger for the upcoming surgery. I have always trusted Dr. Crawford and Susan completely, so there is no reason for that to change now. But in a odd way I am sad to not do chemo because we will not see our friends in oncology as frequently now, so Freedom (and Justice), John, Susan, Sally and Dr. Crawford we will catch up soon.
Bo will type soon - take care
Christi and Addi

Friday, March 21, 2008

Alright Christi here again, you probably won't here from Bo until late Sunday night because the Madness has begun! With that I mean March Madness! Don't get me wrong I am a big lover of this time of the year, but I have to keep it in perspective for our marriage (and I am also out numbered here in ACC Country) With that being said,
Go Jayhawks!
Just kidding (Not Really) You would have to know my personality but Bo and my Marriage can survive many things, cancer for one, but if KU and UNC meet (which I hope they do we always want to play the best to beat the best) it will not be pretty in the Johnson household. Addi already knows to cheer for both the Jayhawks and the Tarheels, but she always does it for the opposite parent. If Bo says "Go...." she says Jayhawks and if I say "Go...." she says Tarheels (she knows what she is doing) I do have to say we are strong supporters for the others team, I have many friends who live and die by the Tarheels, so until then I will keep cheering, nothing personal but when they meet ROCK CHALK JAYHAWK!
I do want to send a little shout out to Davidson today! Addi goes to preschool there, Also a big shout to VANDERBILT! They will certainly beat Sienna, good luck Brad!
Take care and have fun watching the games
Christi and Addi -
PS - Happy Easter! That was wrong to forget and hopefully we will be back Sunday if not before.

Wednesday, March 19, 2008

Hello, Christi here - Just a quick update, my title has now changed (I think I have been promoted) I am now officially called "Your Majesty" with a bow. (Seriously I have no clue where she gets this stuff, but I am going to run with these names, because in 10 years it might change)
Also Daddy and Addi have a new game. When Daddy is laying on the couch, Addi likes to put another pillow on top of him and make a Daddy sandwich. She then proceeds to climb to the very top so she can be the "Pickle on Top" - I now know where people get the nickname Pickle.
Another good story is every night Addi says her prayers and I keep them pretty much the same, so needless to say she has it memorized. But we have been asking her more so who does she want to pray for (which is a loaded question to ask a 2 year old) We pray for clowns and our Papa, Grams, Papa-Cow, Grandma, Grand-Daddy and Great Papa, plus the long list of Aunts, Uncles Cousins and Best Friends, but lately Uncle Leon has been sneaking in there. You should know that when Uncle Leon came to visit he tried to pay for a hug and kiss from Addi with money and to his mistake he always gave her the money first and then asked for the hug. I would say 100% of the time, my smart daughter, gave the money back and opted out of the hug. But Uncle Leon is getting some prayers, so maybe she is missing the money.
And for our final story, for those who do not know Addi has been wearing "Big Girl Panties" for a while. We are so proud of her and have to say thanks to Peyton, Patterson, and Cousin Ryan for teaching her. But we do have to bribe her a little, she is obsessed with washing her hands, so she can only wash her hands if she goes potty, which works great! She always has to run and tell her Daddy when she does a good job, so he can tell her he is "So Proud of her!". Now my daughter is a big one of not wanting anyone to feel left out, so now when she runs and tells Daddy her good news, Mommy has to tell Daddy Mommy's good news and he tells me that he is "So Proud of me Too"
Man you have to love kids
Christi and Addi

Monday, March 17, 2008

Hello on St. Patrick's Day!

I was very busy this weekend with the ACC Tournament here in Charlotte. UNC won it and they are my favorite team, so it was a good weekend. Basketball is my favorite sport as well, so March Madness is a great time of the year.

Since it is St. Patrick's Day, I did think about my families history. On the Johnson side, the very first people over were from Ireland. While I am not 100% Irish, I do love all things Irish. I have been over to Ireland several times, and I just love it. If you have not been there, you need to go soon. The people are very friendly and love Americans......

I hope everyone has a great day.

Thursday, March 13, 2008

Hello everyone, this is Bo and I just wanted to say thank you for all the emails and prayers. Christi got to break the news about me being accepted, so now we can start another chapter on this blog. I guess I will be reporting the day to day trials of someone going through a transplant. While it is not a cure, I sure hope this is a big step in giving science time to catch up with my problem. It is going to be hard, but for my little girl, wife, family, and friends it will be worth it to me.

ACC Tourn time in Charlotte. We need UNC to do well and make it back to Charlotte for the sweet sixteen!

Wednesday, March 12, 2008

Hello everyone, Christi. Bo and I have come to realize that the blog is the best way to get information out to everyone, so I apologize upfront to family and friends that should receive a personal phone call, you will get one later.
We got the call yesterday and Bo is accepted to be put on the list for a double lung transplant. Yeah! Yeah! Yeah! I do say that with a little hesitation, a little, don't get me wrong I am excited and truly believe this is the best option, but I hesitate because of the seriousness of the procedure. (I would have to think you would wonder if I truly loved Bo if I sent him to something this serious without worrying, needless to say I do not handle the feeling "scared" very well. Hopefully it will pass soon) We did learn this doesn't mean that yesterday he was on the list, it means he was accepted to be on the list, we go up March 27th to sign the consent forms and get his Lung Allocation Score, to see where he goes on the list. There are not promises, but they typically get lungs within 1 to 2 months. So I feel like I am repeating myself, but I now have 2 weeks before my world is rocked again and we enter the waiting period of when do we get the phone call. I guess we enjoy this 2 weeks of stable and know that our path is widening with possibilities.
Thank you to everyone that has offered to help us, we will be taking your help in the near future. First and foremost we want stability for Addi (and the buddies) so you will be getting emails from me about our game plan.
Thank you everyone for your prayers, they are truly answered. I just have to ask though to keep praying to give us strength to get through the waiting and the procedure. It is weird to pray for lungs, because we know where they come from and the mourning that someone else is going through, but I do have faith that our paths will cross with the greatest of people and I can't wait to see where this journey will lead us now.
Thanks and Love,
Christi and Addi

Monday, March 10, 2008

Just a quick note. I am at Duke today and had a PET Scan. It came back pretty clear, just show of course the cancer in my lungs. The transplant team will have this information for their Tuesday morning meeting, so we will see what they say. I am going to still have chemo today, so I will have to assume that it will be at least a week or two before I go on the list. Remember, they still could ask for another test.

Sunday, March 09, 2008

All is right with the universe again as Carolina beat Duke last night. I am going to have some test tomorrow, but I will not be wearing my Carolina blue.... I actually will have Duke's colors on, but it does not say Duke. I find it kinda confuses them....

I have chemo tomorrow as well as a PET scan. Once they read the PET scan, I might have one more test. Because it is so evasive, I will make sure that is the last test and if it does come back negative, they will promise to say yes.

I have really been working hard at pulmonary rehab. My coaches there are Brenda, Carmen, and Coach K. Her name is Keayra (sp?) and I could not remember for the first couple of weeks. I had to make up a nickname, so Coach K it is. When she makes me do squats, I picture her like a Coach K. They are all really very nice and it has really been a big help. As of now, I am lifting light weights, going 3.2 on a treadmill for 20 minutes, doing an elliptical machine for 10 minutes, riding a bike for 10 minutes, and trying to do it like circuit training. Off one and onto the next. I still have to wear oxygen, 4 liters while I exercise.

Christi and Addi are doing well. Addi is just a great kid and I do love her so much. She is so funny. Last night we went to dinner with Walker, Candace, Brian, and Jared. After that, we came home to watch the game with Brian and Addi was "calling" him on her barbie cell phone. It was SO funny. She is just a cool little girl. I really hope I am around for her. She deserves a Daddy.

Tuesday, March 04, 2008

I wanted to report to everyone the success of the event Saturday night. It looks like we raised almost $27,000 for lung cancer research and had a heck of a time doing it. I was very proud to be associated with Addi's Cure on Saturday night.

Remember - there are no administration fees for Addi's Cure, so all of that money will be going to lung cancer research. Great job everyone!

I also wanted to make sure everyone remembers Suzi Flynn. She died early this year of lung cancer and her husband Chris asked people to make donations to Addi's Cure in lieu of flowers. Many people did this, and we are honor to have them remember Suzi this way. Our event Saturday was for Suzi and all people who have had to go through this disease.....

Look for information on giving platelet's soon as well....

Monday, March 03, 2008

Hello - Bo is back typing on the blog. I know a lot of people want to hear from Christi, and she really helps me out keeping this blog up. I love when she puts pictures of Addi on.... She is my princess!

I wanted to tell you all how much fun Saturday night was. Party in Paradise was so successful. I will have a total soon on how much we raised, but everyone I think had a great time. There were a lot of very nice people that came. We had our diamond raffle give way and we had a very cool winner: one of my cancer docs! Can you believe it? Susan was so surprised!

It was really neat to see so many people having a good time for a good cause. We had people from GA, VA and MN there as well. People really can show their caring side....

On Sunday, Christi went with Brian, Jennifer, and Lena to see STOMP. I got the hang with Addi for the evening and we had the best time. She is so funny and she laughed a lot during the time we spent together.

I want to dedicate the blog today to Mindy, Michelle, and Randy. They did sooooo much for the event on Saturday and are the reason it was such a success!

Thanks Kilguard, Wright, and Tidrick family for coming so far!

Saturday, March 01, 2008

Christi again. Well today is the day, it is time to PARTY! I am so excited for"Party in Paradise", we have been given incredible silent auction items: jewelry, purses, spa and oh yeah for the guys golf, fishing stuff and even a FISHING BOAT! Seriously people are incredibly generous and we are grateful to everything and everyone. A HUGE special thanks to Michelle and Mindy who have taking this dinner and ran with it...they have been amazing. Last night we might have lost it for a little a while, but I think we have got some sleep, a little, but we are ready to go. Michelle I saw you up and going around 7:00 and who knows how late Mindy was up.

I wanted to type first thing this morning also to share another incredible website that has taken the time to get to know us and our passion for fighting lung cancer. Bo is officially a "Smarty Dad" boy does the stuff he does around the house going to change. Please take the time to visit the link and read what these incredible ladies have created in Charlotte. It is truly amazing. Please also take a moment to say a prayer for Jen B and her family. She tragically lost her fight to lung cancer, but has created many more passionate supporters to help fight this awful disease.

Take care and see you tonight! I will be the one chasing Addi...