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

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.

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
Love
Christi and Addi

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.

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!

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

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.

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.

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....

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!

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.

http://www.charlottesmartypants.com/

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

Alright, Christi again and I must be the spell typos queen instead of just queen. I guess that is just a sign I need to slow down...sorry.

I thought you all needed to see the Princess in Action.

First is Addi and her "Best Friends" Peyton and Patterson Graham. They got their medals in gymnastics and were so proud.

Next is Addi and her "Best Friend" Cousin Ryan - the picture is worth a thousand words.

And finally this one was just cute.

See you all Saturday for our

Party in Paradise!

Hello Everyone - Christi here
I just wanted to let you know that we heard from the Transplant Coordinator and we got the information we thought we would here. More testing...it isn't a no, but a little frustrating that they whole time we were up there everyone kept asking, "Why are you not having a PET scan?" This is the most typical scan to detect cancer and to see if it has spread elsewhere in the body. So guess what, in 2 weeks, (much to Bo's displeasure of waiting 2 weeks) we go up there for that scan. If that comes back negative (which we believe it will) then we will have one other test to perform to make sure cancer hasn't spread. The waiting period sort of stinks, but I perform to think that maybe God is giving us 2 weeks to enjoy life as we know it before our world gets rocked with the transplant that is going to happen. We can take 2 weeks as a family and play, play, play.
Speaking of playing, Addi is becoming one of the funniest kids I know. First she hero worships her friend Peyton...that could be an understatement. But one of her new things now is referring to Bo and I as the king and queen. (She is the princess) I cannot complain because heck I am a queen, but everyone morning when I get her from bed she says, "Mommy I need the king" Bo's ego doesn't need to be fed anymore than it already is...she also just started to referring to us as Joseph and Mary. I know odd little girl and I need to check into what they are teaching her at preschool, it is a church run program and at Christmas time she did love the manager scene, but that might be a little much. I will stick with the queen.

So for now from the Queen and her Princess
Love to all

Sorry!

I know I said I would update you more last week, but it just got away from me.

I finished up testing last Friday in Duke. There were some highs and lows, but overall it was ok. It was really hard being away from family and work, but Christi, Addi, and Terri (Christi's Mom) were with me most of the time. Terri brought Addi up on Wednesday and of course she really lifted my spirits. Addi was a trooper and did spend some time at the hospital with Daddy. She kept saying "Nice doctor is going to make Daddy feel better" a lot and I think she really helped my cause. I will find out later this week what the docs think. It will be one of three answers: No, Yes, or more test. They want to make sure that cancer is NO WHERE else in my body. If it is, then no go. I really believe in my heart that they will do the transplant. By the way, I have some kick butt insurance. Every cost will be covered if they do the transplant. I thought that was neat. Now all the bake sales can be for Addi's Cure! :)

Thank you Terri. Coming out all week and helping us was great. We could not have done it with out you. We all miss the fried chicken already, but most of all we miss you.

This weekend will be the Addi's Cure party. I am really excited. We have sold over 250 tickets and we are expecting a crowd. It is a Jimmy Buffett themed party, so I know people will dress tropical and just relax. Dr. Crawford and Susan are coming. These are my doctors and have done such a good job keeping me alive.

Update on the chemo: Altima is what I am taking and it is working some. I had a scan last week and there is some regression on the cancer. This is good news. I am not sure how long this will continue working, but each day counts!

Last but not least, I have a message from my 6'6, 280 pound Uncle Terry from Kansas who can kick your butt: Be an organ donor!

Today was a crazy day. I had my assesment at the Center for Living for pulmonary rehab. They were very nice and they were really excited that I have already been doing rehab in Charlotte. After that, we did a cardiac cath consult to know what is happening tomorrow. Interesting to say the least. Basically, they are going in through my thigh and going to check my heart. I then had two scans, one a CT, and one a MUGA with RVEF. Basically what that means is that they measured the red blood cells going into my heart. It was a long day waiting but we did get done at 4:00 today.

I am feeling pretty good. I do think Duke is trying to decide what is best for me, and we will know more next Wednesday.

Thanks for all the prayers, and do not forget Addi's Cure. All of the money goes to a good cause, and we need the help. I will post again tomorrow.....

Christi here (sorry for the typos in advance)...we finally got the internet working, but it think it stressed Bo out more than anything now being able to work. Now that it is up he is exhausted, so now you get me. Needless to say we made it through Day 2 of the "testing" . Today was mostly talking and meeting the people that would weigh in on the decidion. But let me back track a little and get into more detail about Day 1 (Thanks Brian for posting and I apologize for all that have called and we haven't spoke with, cell phone reception isn't the best in a hospital. It might have something to do with the steel beams, the machines or possibly all the cell phones the doctors are on) Anyway,

Day 1 - Orientation - we met Ellen the social working extremely nice - 1st person to realize Bo and I talk a LOT
Then Blood Vials - like 15, I think they might feed vampires with all that blood
Fluoroscopy of Diaphragm and Barium Swallow - Bo has acid reflux, we knew this, he got to see it go all the way up to his clavicle - gross but interesting - I did not see this, but heard in detail from him
Back to the Pulmunary Lab for breathing tests- he did better than Jan. still not ready to run any marathons (we are hoping he did better because of the new chemo kicked it back some, but it probably won't get rid of the cancer. We just need it to work while we are waiting to hear about the transplant.)
Back to Radiology for Differential VQ scan - Lungs still bad with cancer - Confirmed again
We met Dr. Davis - the Transplant Surgeon, arguably the best in the country if not the world. We were extremely impressed, but did walk out a little down because we had to go through all the pitfalls (we knew about these, but sure did suck to hear about, but they have to cross their t's and dot their i's we get it...moving on) Hopefully we impressed him and he is willing to take the chance with us.
Then we thought it would be real smart to add an appointment with Susan our PA with oncology. She is so great. Susan and Dr. Crawford are coming to Party in Paradise, so we are excited for you all to meet the people keeping us alive and doing well, physically and mentally.
We finished the day, which started at 7:30 with chemo at 5:00...long day

Day 2 - pH/Manomerty aka a tube in Bo's nose and down his esophagus to measure acid reflux, Bo will not be piercing his nose anytime soon. We finally agree on something. He leaves the tube in his nose overnight... I pull out in the morning - wish me luck
Then we talked all day...a LOT...the psychologist - confirmed we are crazy, but it might work for us, Social Worker - Confirmed Bo having cancer sucks, but we talk a LOT, Financial Coordinator - Confirmed, we are nuts, but have wonderful insurance - Thank you BCBSNC and then met with Dr. Steele , Transplant Pulmonologist - Confirmed Bo's lungs do not work the best

So now we are sitting, missing our girl. Man are we missing her. She is the sweetest and everytime we talk with her asks for us to come home, but then says that Daddy's is with the doctors and "they will make him feel better" I like to think children talk directly to God, so for those with kids I might ask you to let them ask for a favor for us an make "Bo feel better"

We are certainly hanging in there. One doctor even said that he normally makes people cry, but he wasn't going to break me. I think June of 2006 is when I got the worst news of my life, everything from here is just battling to get what we think is best for Bo's future. And I plan on a great one with him and our little Addi Girl.

Take care and we will get some pictures up soon

Love
Christi

Hello everyone. It’s Brian Williams posting tonight. As many of you know, Bo is up at Duke this week undergoing eligibility tests for a lung transplant. He apologizes for not being able to post to the blog at the moment. He and Christi are having internet problems at their temporary apartment. So tonight’s post is my honor.

Today was day one of testing along with a Chemo treatment. And, as all of you can imagine Bo is charging through the tests as hard as he can. He did say that they are not easy and some are very uncomfortable. But, you all know Bo and he is taking it all in stride. In fact, his humor still shines through…..he told me that one test this week is a cardio catheterization. Basically, they will run a catheter through a vein in the leg up to the heart. He said “So it says in the literature to pack a bag because you might have to be admitted. I think that’s code for ‘This might hurt.’”

Bo promises to post an update as soon as the internet line is repaired at the temporary apartment. In the meantime, your prayers are extremely important this week!!! Stay tuned for more.

Hello everyone and huge apology from me about the Addi'scure.org website, we have been trying to update with the upcoming event, but to no avail right now. See here is the party information and a copy of the flyer. Please note that tickets must be purchased ahead of time so we can have a number count. We have about 100 tickets left so please, please let anyone know about the event and plan on coming. We have some great items being donated we have some incredible LIVE entertainment - JT Parrothead will be performing (some of you know him from the Raleigh area and the Margaritaville parties)

I cannot wait to see everyone there.

Christi and Addi

Hello everyone...I hope that the weather is treating everyone alright. I have family here right now which is really nice. A little bit of home is always good for the heart and soul. Bo stayed home today, he is still a little under the weather. He can't seem to get over his head cold and I am sure chemo every three weeks isn't really helping. We did get stronger antibiotics so hopefully this will knock it out.

I did want to send a little reminder. We are now officially less than a month away from the next Addi's Cure Function. So please, please tell everyone you know to come. You do have to purchase ticket ahead of time for $50 and for anyone looking for tickets either email info@addiscure.org, call me, some girl friends of mine are selling some or stop by Bo's office the front desk is selling them when Bo and I are not there. We are trying to bring another 100 people to this event, so we need some help recruiting people to this outstanding event, if I might say so myself. Just a reminder to bring cash, this is truly a cash bar, no credit card machines. There is also an incredible silent auction thanks to Mindy and Michelle, actually a huge thanks to them for the whole event. We are also have a diamond raffle that night and tickets are $50 for that as well. We will give more specifics on the diamond later. (I have to find a way to keep you all reading for more info) We do need to have most of the tickets sold by February 15th, so if you are planning on coming please look to purchase soon.

Thanks fo everyone for supporting Addi's Cure and I can't wait to see you all in your tropical, summer attire March 1st.

Christi and Addi

Just a quick note today. I am at home today. I had chemo on Monday and I think I am getting a little of a delayed reaction. I did not go to pulmonary rehab today either. I really feel tired. I am still trying to work some from home, but basically have been sleeping all day. This chemo seems to do it after a few days, so i will be ready for it next time. Christi and Addi have been taking care of me really well.

Christi's family is coming in this weekend so we are excited. Post again soon.