Sorry for the delay, computer issues this morning. I have only seen Bo for a second but he looked good. He was looking around and trying to focus on the TV. Today the goals are to move Bo's "Swan" line, where is is getting his antibiotics into a "pic" line. Once this is moved he will be able to start trying to get up. We also need his need for the ventilator to decrease. They have lowered the amount of assistance he is getting, but we still have a long road to go. Small steps...tomorrow they will put in his GJ tube in his stomach and he can start getting some nourishment, that will help him heal faster.
We have yet to get results for labs, those should come in "Duke" time around 12:00. We are waiting to see him again so I will post more later.
I did speak with the doctor about the fluid in his lungs that they attempted to remove last night and they feel like that is starting to look better, so small steps in the right direction.
Christi

So Sorry...we are finally out of surgery again. Once again Duke time, they took him back around 7:20 and we didn't get to see him until 11:00. But I can officially say we had our first uneventful procedure. They cleared out a lot of the fluid and put his trach in. It is more comfortable for Bo, but this does unable him to talk. So everyone when we can, feel free to call him and get your two cents in because he will not be able to respond back until the trach is out or plugged.
The doctor didn't really have to much to say other than hopefully tomorrow we can get some of the drugs to wear off and start trying on getting him up and moving a little bit more. They feel like he is moving on his way nicely and it might be time to think that we are getting over this hump. We are still not out of ICU, but we are getting closer. I have never been so proud of someone in the leaps and bounds that he made today. I could see him in his eyes and he even cut his eyes a couple of times. We are still working on getting his other organs to function more properly, but the tests now are done ever 12 hours instead of every hour. So that has to be progress for the lack of urgency. Small steps...
We are still watching his platelets and kidney function to get the potassium out again along with the other toxins. We are praying and praying for his hand to heal. It is wrapped in a splint and elevated to try and drain the extra fluid out. We are also praying for his liver to calm down and and the infection to clear itself up. They will still have to do another procedure to put a feeding tube in, but that should be in a couple of days.
But tonight along with praying for Bo to heal, please pray for two wonderful and amazing men that have helped me and my family through this incredible process. Bob nicknamed us the "Mod Squad", please pray for Bob and his wife, I will have to get her name tomorrow. Bob Fuller has been in ICU since January with his wife. They are trying to get her strong enough for a heart transplant and every day he comes in to be with her. He always has an arm around me with a smile on his face telling me to be cautiously optimistic and try to take each situation one problem at a time. And then there is Joe Edwards and his wife Marilyn. Marilyn was admitted two weeks exactly before Bo and she also had a double lung transplant. Joe not knowing me from Adam or Eve told me his story (they were on ECMO as well) and made me feel sane with everything that I was going through. He opened his heart and soul and we shared our emotions of everything and our frustrations. I selfishly talked most of the time about my frustrations and he kept quiet with me. Now able to step back and realize he must of wanted to strangle me because he had fought for so much longer. I am happy to say today Marilyn was move to "step-down" out of ICU and is starting the fight of using her lungs. These two men have touched my soul in a way that I hope and know I will never forget. I love them and their families and we will have that picnic soon to celebrate life.
I hope to post wonderful news tomorrow because I begin to feel like the sun a breaking through the clouds and my Bo is fighting back to me.
Love
Christi and Sweet Addi girl

Hello everyone sorry for the delay but I always forget that we are running on Duke time. Bo has not gone to surgery yet...hopefully soon. Sorry I should have said something earlier, but I kept thinking they were going to take him soon. I also have been spending as much time that I can with him while he is awake. He is really excited that we were paid last week, he nods his head when I ask him if he sees crazy stuff, (he is truly drugged out) He always wants to look at the picture of Addi. He misses his Bonnie Jane, and everyone at work. He is moving his eyebrows a lot when I tell him about all the well wishes and prayers being said, I made sure to tell him about everyone. He cannot wait to see and talk to everyone. Not much to report right now, but I will be sure to let everyone know when he goes in for surgery and when he comes out.
Please pray that we can have one uneventful surgery and not let me worry. Wait until everyone sees my worry lines.
Christi

Good Morning everyone - We are still making our baby steps. Bo had a restful evening we appear to be taking baby steps in the right direction. His platelets are up a little, still a long way to go, but baby steps in the right direction. His kidneys appear to be clearing a little better so they are waiting on the dialysis and are hoping time will allow them to jump start in time. His fever is still high, but appears to be stable with the cooling blanket so they are stopping with the Tylenol and hopefully that will rest his liver and allow it to function better. Small steps...we are meeting with the wound people today about Bo's hand. There still isn't much that they can do, but they think it might be getting better. He might loose a few fingers instead of the entire hand, this one is just a wait and see game. The first test for HIT came back negative, they are waiting on other tests to confirm. With this being said, they still do not have an explanation on why his hand reacted this way, but time well hopefully heal it.
Bo is still going into surgery again today to put a trach in. This will hopefully help with infection and for his prolonged need for the ventilator, when they are putting this in they might put a feeding tube in as well. They will decide that later. They are also going to clean out his left side a little bit more to get some fluid out and hopefully this will help the overall lung function. We can only pray this is the last time Bo goes to the OR Room, Lord knows every time I think I am at my limit, we go back.
They are trying to wake him up this morning, just to knock him out again for surgery, but I did get to talk to him some. He blinked a couple times to questions so that was great. He blinked to say his hand hurt so that breaks my heart, but I think pain might be a good sign he still has feeling in it. He also blinked to say that he loved Addi and his Mom, when I asked about me he was dumbfounded on said nothing, so we all know Bo is still there neurologically. Man I love him.
Love Christi
I will post more when he goes into surgery again, which will not be until 2:45 and will take a couple of hours. Keep praying for one smooth procedure.

Final post for today, the doctor has yet to make it back to Bo tonight, but I am sure he will be there later. Special prayer should be said for Dr. Davis's family and the sacrifices they make to heal others in their times of need. Bo had a pretty calm day today, throughout the day they worked on his fever, it is still high but hopefully coming down soon. They say it isn't uncommon for fevers to happen and considering what Bo has been through, not surprising. This is not good either, but they are running labs on him which we should have to results tomorrow sometime and hopefully will be able to treat. They gave him some medicine for blood clots that we in his shoulder and when releasing the medicine fluid came out. We can only hope and pray that this will take care of the fluid in Bo's left lung and he will not have to endure another surgery. We will know more tomorrow, of course.
Our obstacles for tomorrow are that Bo's platelet count is really low, it didn't go down today, but we really need to get those numbers up. Bo's kidneys have also taken a toll and are not performing as well as they would like, but they cannot put him on dialysis until they figure out what is the matter with his hand. They ran a HIT test to see if he is having a rare "allergic" reaction to the Heperin, a blood thinning medicine. Once they figure that out then they will know a better more aggressive way to treat his kidneys without hopefully loosing his hand. His hand is still really sick, but they are waiting for the test results to see if they can do anything to help it out. In the grand scheme of things the hand isn't as important than his ability to breathe with the new lungs. I know we will all love him no matter what. Also tomorrow Bo is undergoing the procedure of putting a trach in and taking out the breathing tube from his mouth. He is still requiring a ventilator that is the reason for the trach and they will also put a feeding tube as well. This isn't something that is permanent, but necessary for right now.
Everyone is always warning us that this will be an up and down procedure full of bumps, but I sure do pray for the day I do not take up a page of problems. For those still reading our recap of goals for tomorrow is
1) Platelet count needs to go up, this will allow more flexibility in treating Bo and how he reacts to drugs needed
2) Kidney Function - Bo needs to be clearing more of the toxins
3) An uneventful Trach and feeding tube procedure - Plus pray that they do not need to open him up to get the fluid out of his left lung
4) His hand - Please let him not have HIT
Thank you everyone for their love and concern, I sure hope Bo doesn't drag this out any longer, I sure would hate to loose anyone of you out there. I promise drinks are on me when this is done, we at least a coke
Love Christi
5) Also that I can get my Addi girl up here all the time...

We just talked with the doctor and we are still working on small steps. Bo's temperature is creeping back up so they are running cultures to see if he has an infection or what might be causing this, I sure wish Bo would make this a little easier on my and the doctors, but this is Bo we are talking about here. Part of the doctors frustrations is that they have very little wiggle room with the medicines that they can give them. Bo still has fluid around his left lung that they are going to try and treat through tubes and clotting medicines, Bo does not like the blood thinners that is what might be giving his hands the reaction that they are having, we are waiting on those results. He might have another operation is remove that fluid, but at this time we will cross that bridge when we come to it. They are going to put him back on dialysis to see if that will help with the infections and build up in fluids, pray that this is the easy solution.
Today will be a big waiting day, so I apologize if I do not get updates until later. No news is good news always remember that and small steps forward is all we are looking for, small steps.
Love
Christi and my sweetest Addi girl

This morning post, Christi, but you will probably know by the typos and grammatical errors, oh well. We are still waiting to hear from the doctors this morning. Rumor has it he just made it back there so hopefully soon. I did get to go back there for a moment and his temperature is better. They have taken the cool blankets and ice packs away and are just working on it with Tylenol. He will probably be put back on dialysis today. (They clarified for me that him peeing isn't good enough, he needs to be removing the toxins as well) Having something come out is good, but he needs to remove more of the toxins and medicines they have been giving him, hence the extra help. They feel he is young, so hopefully things will not be permanent. There is no word on his hand yet, it appears that he is having a reaction to some of the medicines they give during surgery. This is call HIT and they are being cautious with the medicines they are giving him to not make it worse.
As soon as I speak with the doctors I will clarify everything and learn how to spell. Thank you Thank You and Thank you for the prayers. We are taking baby steps everyday, but we are still a good distance from getting him home. But I thank GOD we are not where we were two days ago.
I will write more soon
Christi
Thank you and love to all

Hello all Christi here....sorry for the delay posting, but I wanted to talk with the doctors before we posted again. We have great news we are currently off ECMO, let's pray that we never have to use that again! This is huge progress, but we are very far from in the clear. But it is nice to meet other nurses other than the ones that have won a ton of awards for their ability to handle the critical patients. We also might have the bleeding in his chest under control. They are performing chest x-rays all the time to watch fluid in his lungs, but this fluid is different than the previous fluid that was in his lungs, this is on the outside.
Bo is doing well, but we have come across our next set of complications. He is running an extremely high fever right now that they are working on controlling with medicine, ice and cooling wraps. We have been unable to test his neurological functions, so please let those come through fine. He also needs to work on his need for oxygen. Currently they are still assisting his still, but they did state that they would like to take baby steps with his lungs. But also extremely important Bo has an "infection" in his right hand that has currently lost necessary blood flow to his hand. If they cannot correct this, Bo will loose his right hand. I am extremely worried about this for his mental state when he comes through. We all know how much Bo loves to golf. Nothing will change the way I feel about Bo, but please pray that this can correct itself in the next 24 hours. I can honestly say this caught me completely off guard, but compared where we were this time last night, I will take Bo breathing on his own with assistance to a right hand any day.
I guess to summarize please pray for Bo's lungs to get stronger and work more independently, please pray for his fever to come down, pray for his neurological function to be normal and please pray for his right hand to heal. I know I am asking for a lot of prayers, but I feel if we keep taking this step by step progress can be made.
Love to all
Christi
Please kiss Addi for me!

First report of the day:

Let me preface this report by saying this is the best information as Christi and Jo understand it from the doctors. There is so much information being given to them that processing and remember all the contingencies can be confusing. So, Bo’s blood pressure is beginning to stabilized somewhat. It is still fluctuating but not at the critically low levels like last night. He has begun to make urine and is not on dialysis. There is some fluid below the lung on the left side that they hope will drain naturally. This is not fluid in the lung but beneath it.

From what we gather, they will attempt to wean him off the ECMO machine sometime today. This would be a very positive step in the right direction so please continue to pray for this.

Bo is fighting and your prayers are giving him strength.

We are posting the information as we get it. Bear with us.

Brian

Another late post, but necessary for your prayers. While we felt good about Bo coming out of the 2nd transplant today, his blood pressure remains very low tonight. We need the blood pressure to come up so they may perform a perfusion test on his lungs. Normally this would have happened by now to test to see how the new lungs are working, but due to the low blood pressure the doctors have not been able to do this yet. Please pray this rises. Additionally, we need him to produce urine. After surgery the doctors removed him from dialysis for a short time but placed him back on this evening. Once they see good urine flow, then we can move away from dialysis.

Bo is fighting and with your prayers we will conquer this. Your support, thoughts, and comments have meant so much to the family so please continue to build their strength. I see first hand how your comments nourish the entire family’s heart so please keep the support coming!

We’ll post any updates as they are available.

Brian

Hello to All, Christi here. We made it through the second lung transplant! Bo still is extremely critical, but he did not start off with as much complications this time as last time. This time the fluid build up wasn't as dramatic and the bleeding the combated before surgery started. He is still on the ECMO machine, but they moved the canules to his neck and legs and closed his chest which will be one less surgery he will have to withstand. We need to pray that they can get his blood pressure under control again from the surgery and can get him off the ECMO machine as soon as possible. To rest assure that we made the right decision to send him into surgery again, the doctor said his left lung was essentially dying, there is a word for it but I forget and that was and is causing his body to inflame. So we need to work on getting the inflammation out as well as everything else. I did get to see him for a moment and he looks as handsome as ever and will have plenty of war wounds to impress the ladies.
I do want to apologize for the people that didn't sleep last night. They told me we would have news around midnight and they did not call me until 6:00 in the morning. Try to get some rest and thank you to everyone that are saying prayers and prayed their heart out at church. God is listening, we now just need a little more strength for Bo to recover from his 3rd surgery.
Thank you to everyone and pray pray pray.
Christi
Please also pray for the families that have lost their loved ones that donated their precious organs to others.

Good Morning. It’s time to send your prayers up in earnest this Sunday morning as Bo went into surgery just a little while ago for his second lung transplant. Word came in during the night that the donating lungs were a match.

The procedure will take approximately 6-7 hours. Progress will be posted as available.

Pray that these lungs are the solution!

Brian

Hello Christi - I apologize for the late post but we got news that the surgeons are on their way to look at another pair of lungs. This has the potential to be a dry run, but lets all hope and pray this is the path God wants us to walk, maybe run down. I will not receive word if it is a go until late tonight, after 12:00 sometime, but I will be sure to post or have someone do it for me. Please pray for the doctors to have the wisdom, Bo to have the strength and all of us to have the faith in believing in miracles.
On another note, Bo is doing well, he is even a little stronger today, just still not moving as fast as everyone wants. So in our pinky swear methods we are trying to help him heal the best we can so we can get him typing to everyone.
Take care and I will post more later
Love to All
Christi
And to all on this journey for these past couple years we can officially tell Bo tomorrow that he is cancer free tomorrow on his 2 year anniversary! Congrats!

Hello again, Christi here. One of my favorite pictures of my heart. Sorry about the crazy emotional post last night, but in my defense I did just get another shock of my life. Not quite sure how many more of these I can handle, but I guess I will find out and take them one by one. I hate to tell them I am not going anywhere so keep trying.
The Plan right now is hold steady and stable, which Bo is doing, and wait for another lung transplant. In the meantime of waiting they are still trying to correct the fluid in Bo's lungs, they just see this as a faster and better solution. I have to go back to trusting someone so God and the doctors would probably be a good place to start.
Sorry there isn't really anything to say today, which I appreciate. Thank you to everyone taking care of me, my house, my dogs and of course Addi. I love her so much and everyday Bo and I talk about her fishing with Daddy real soon.
Thanks and post soon
Christi

Hello Christi again. I apologize for posting so late. They finished the procedure late tonight and it didn't do the miracle we all wanted. Bo is still stable but the doctors would like the fluid level in the lungs to be decreasing quicker. They are going to watch him of course all night very cautiously in hopes that after some rest we might get our miracle and the fluid levels will decrease at the rate and volume they want. (I think we are almost wanting him to getting better at the same pace, but trust me I want him a little bit faster than the doctors do, but they must have a sweet spot for him)
What I am going to say now sounds scary and will be a complete shock (for that is where I am) but they are also going to re list him for another lung transplant (I think I am going to vomit- but we can all do this, stay strong everyone and pray your hardest tonight and tomorrow) Crazy I know, unheard of I know, but it lungs come forward to him and the doctors think this is the best option, I will be in the surgery room waiting and updating you all. This is an option because I think Bo other organs are still doing so well that they have pinpointed the problem to the lungs and the damage that might have occurred with the swelling, please bare with me if my explanation is a little off. All I heard the doctor say is that we are going to re list him and then the rest turned to Charlie Brown (wawawawa) shock! But I am turning this over to God and trust that this is the miracle we all wanted, I trust that Bo can withstand this, I trust the doctors and I trust you all to help guide me, Addi and Bo through this journey. Please keep believing in him and my entire family because no one is giving up and I made the doctors pinky swear.
We can all do this stay strong, sorry if I do not talk personally with everyone, but I am on an edge and I am standing strong, but I am just not sure where my limits might be.
I love you all,
Everyone Kiss my Girl because my heart is breaking because she is enduring this with all of us.
I hope to post soon
Love
Christi, Addi and Bo

Here’s what we have for now:

The doctors conferred this afternoon and have decided to try a procedure late today to help his body drain the fluid on the lungs. They have been troubleshooting this and feel this procedure will help his body along. Overall things are the same. Continue to pray that indeed this will help drain the fluid.

You can continue to post on this entry or the one below and I’ll print them both out for Bo’s ears. Your messages and prayers will give him strength. You know Bo is a fighter so let’s give him some encouragement.

Brian

Just heard from Christi. In short, there is no change. The doctors spent about an hour with Bo this morning and everything is still as it was last night. As they have told us all along, it’s a matter of waiting. He is still on the ECMO machine and resting so the lungs will reduce the fluid buildup.

One another note, I hope to have Christi up and running on a laptop this weekend so she can continue to post as well. While I’m there, I thought I would deliver some messages from the blog for her to read to Bo if ICU will allow it. Even though he is sedated, I believe reading these to him would help him fight. So, if you have a message for Bo, please leave a comment. I’ll print them off tomorrow and take them with me.

Updates will still come throughout the weekend so stay tuned and keep praying.

Brian

Good morning everyone. I’m sure many of you are anxious for any news. We are waiting on the first report from Christi and the doctors. Christi arrived at the hospital this morning and we will post as soon as we know something. Sorry for the delay as there just hasn’t been any more information since Christi’s post last evening.

Brian

Hello everyone Christi here. I nice gentleman is letting me use his computer for a moment to type a little, please pray for his wife as well, Marilyn Edwards. She is another ray of hope. She was on an ECMO machine earlier and has since been removed and breathing, but has suffered other complications, but like many people here and like the Johnson's she is fighting to straighten everything out. Her husband, Joe, has been so patient with me explaining the process he just went through and getting everything down pat. So thank you to their family.
There isn't any major changes, they are getting Bo's Potassium levels under control using machines and actually I was just interpreted by Lisa the educational nurse and she informed me that Bo's urine is back going again and the Potassium levels have lowered to an acceptable high level. These levels with continuously fluctuate so I have decided to stop worry about numbers and look at the big picture so we are.
I will call with more news when I get some. Thank you Thank you Thank you for praying and putting nice comments. I cannot tell you how much that means to me and all my family members. We are going to get through this, it might take all of us supporting each other, but we will make it.
Love Christi
PS Thank you to everyone that is distracting Addi, I love you all. (I think I love Bo more, but you know that!)

Here’s what we have so far today. Bo is still in ICU and is still sedated. His potassium levels are high which is causing his urine flow to slow. The doctors are looking at different alternates to correct it. Christi was in to see him early this morning, but hasn’t been in since and is waiting for an update from the surgeons.

This is all we have as of now. As I get news from Christi (and we are in contact frequently) I’ll post it.

Continue to pray!

Brian

Ok – here’s what we have as of 10:20 p.m. this evening.

Things are pretty much the same. Bo remains in ICU sedated allowing time to pass for the healing process of the new lungs. They remain swollen and fluid filled which is the cause for the immediate concern. He is on an ECMO machine in ICU. You can read about this machine at http://en.wikipedia.org/wiki/ECMO. His ECMO machine is the VV type in case you are curious.

Christi likes to put things in simple terms so basically we need three major things to happen:
1. Fewer blood transfusions -to eliminate antibodies coming into the body.
2. Continued urine output -to make sure he doesn’t go on dialysis.
3. Fewer bronchoscopies (http://en.wikipedia.org/wiki/Bronchoscopy) -which indicates the body is ridding the fluid on the lungs naturally.

I sense the doctors are cautiously optimistic about his current status. They would like to see him come off the ECMO as soon as he can so the lungs can start doing the work on their own. Obviously the fluid must come down first.

Since Bo is now a regular ICU patient and not a post-op patient there won’t be another update from the staff at Duke until tomorrow morning. Updates come from 9 a.m. to 9 p.m. while in ICU.

So everyone get some rest tonight and the updates will continue tomorrow as information is available. The entire family expresses their gratitude for the well wishes and notes and especially appreciates the extra prayers for Bo.

Brian

Many questions about cards, flowers, etc…..

Because Bo is in ICU most well wish items are not allowed. Since we do not know when he will be placed in a room, it’s best not to send items to the hospital. Christi has asked that cards and such be directed to their home address for the time being.

Bo continues to rest while you continue to pray!

Brian

Ok- some more information and clarification from Christi:

The doctors met with the family a little while ago to give an update. In short Bo’s new lungs are swollen with fluid as a result from the transplant. It is not an infection but carries similar characteristics. Basically fluid buildup can happen once blood restored to the newly inserted organ. The doctors are saying it could be days or weeks before the swelling goes down. The best remedy is to give the lungs a chance to rest and heal. He will remain sedated in ICU under careful watch.

There have been other cases with the same problem. In fact the family just met a gentleman at Duke that had the same complication with his lung transplant 4 months ago. So while this is very serious, the doctors are optimistic.

Please continue to pray for Bo and the doctors. Any developments will be posted.

Brian

I realize many of you are anxious for some news. At the moment, they are waiting for a visit from the nurse for an update. The doctors will be later as well. Christi was able to see Bo briefly around 6 a.m. but since then, it’s been a waiting process.

More to news come as we get it.

Brian

Bo is out of surgery and in ICU at 4:30 a.m. As we all knew going into this surgery, this is a very complicated procedure and there is no “typical” lung transplant. There have been some complications that have surfaced during the operation. Apparently Bo has some sort of infection resident in his body causing a mass amount of fluid to be produced. This began to happen after the left lung was placed in and work began on the right lung. Needless to say the doctors weren’t expecting this. With no visible or test detected signs of an infection in his body, they are confused as to source of the infection and thereby not 100% sure what treatment to combat it. With the mass build up of fluid his body and in the lungs, they have inserted a device that will help drain the fluid so his body can function. This is a very critical time for Bo. Please continue to pray. The next 12-24 hours are extremely critical.

Because he is in ICU there are no visitors allowed. Please keep this in mind. We know there will be at least one more procedure to remove the device that was implanted to drain the fluid. News will be posted here as I get it from Christi.

More to come.

Brian

First update. Christi is receiving calls regularly from the doctors in the operating room. The left lung is out and there is not any sign of cancer outside of the lung. This is good news! If you recall this is the same lung that had collapsed late last year. The next step will be for the new lung to be inserted on the left side, watch to be sure all is functioning, then move onto the right lung.

More to come. Keep praying.

bw

The day has come. Bo received a call from Duke this morning at approximately 11 a.m. instructing him to come in for a potential match. We’ve been through this once before so it was much easier getting the call. After waiting the entire afternoon, the news finally came just before 6 p.m. that the donating lungs were a match and the surgery was a go. Bo was prepped and went into surgery at 7:53 p.m. this evening. From the information we have received the surgery will take 6-8 hours. The immediate family are on their way to Duke. Tracia is watching Addi at home.

If you are reading this, please say a prayer for Bo. We’ll post updates as they come in.

Brian Williams

Sorry more to say...Please read below about Baby Connor...Today was Addi's last day of school and I have to say I was sad to see how big she is now and how grown up she is acting. (Athough we are challenging Mommy and her rules) But I do have to say I have a sweet little girl, I will wait a couple years before I call her lady.

In the pictures below are Miss Meg the director of Addi's Preschool, Miss Michelle one of Addi's Teachers, Miss Kim Addi's other teacher and two of Addi's "Best Friends" Jenna and Carly", everyone else ran for the doors on the last day of school. She loved it there and cannot wait to come back next year!

Congratulations Addi!

Love

Mom

Yeah! Addi has a new friend. I am happy to say with William Connor Ham was born this morning. Candace and Walker sure do make a cute baby! I cannot wait to see him tonight! Addi was on the computer all morning trying to figure out how he came out of Miss Candace's tummy and why he was yelling so much. Please take a look at some adorable pictures at http://www.hambabyblog.blogspot.com/
Thanks and take care
Love
Christi and Addi
PS - Erin take a look at those legs, does that remind you of what Ryan looked like when she came out breech!

Happy Monday to everyone. I had a great weekend. I played golf and just hung out with Addi and Christi.

We had a wonderful gesture made from two of our neighbors. I will not say their names for privacy sake. The husbands brother died unexpectedly this weekend. He is in his early 40's and was still on a ventilator but was brain dead. They called us and said they wanted me to have his lungs. We were really touched. In the midst of such a tragedy, the family thought about our family. Christi and I really do not know what to say. I am not sure that anything will come of this, but it really makes your heart remember how good people are. I will never be able to do this story justice while typing on the blog, but just know that it was incredible call. We are praying for the family and their loss.

Hello (Christi here) Today through my "Mother" eyes I am very proud of our little girl, but everyone else might be a little disappointed. Addi has officially learned to say "Fire Truck" appropriately. I tried not to let her say it in public, but sometimes it could not be helped. (In case you were wondering, she always put two "f's" in Fire Truck...Fire then the "F' and then the "uck") Not good nor appropriate...but thank god!
Our little one is growing like a weed and taking on all sports, with much happiness from her Daddy. She loves Soccer, Football and always cheers for Basketball. But I do say most of all she likes the cheerleaders at the games. Anything to yell yeah for and "ahhh he missed it"
Other than that nothing new to report. We are finishing school, ready for the pool, practicing skipping, telling Mom "You are a crazy driver" and practicing golf. She is becoming mini-Bo every day...oh and we are waiting for the phone to ring...still waiting and enjoying our time together.
Love
Christi and Addi

I hope everyone had a great Mother's Day. The Johnson Family had a busy weekend. Christi and Addi went over to Lena and Phil's on Saturday morning to help out and watch the kids as Lena had somethings to do, then went to a Tea Party for my Mom with Tracia and Caroline. I played golf with Phil in a tournament and we came in second. We came home and Addi had a nap, then we took her with Aunt Tracia to a Japanese steak house where they prepare the food right at the table. She liked it ok, but was a little bit overwhelmed during parts of it. Sunday we went to church, hit Dunkin Doughnuts since Addi was such a good girl. We also had a big storm here in the afternoon with hail and tornado warnings. We then went to see my Mom and called it a night.

We are currently still waiting on the call, but just living as normally as possible. This week is our annual FIG trip to Napa Valley, and I can't go. It is a little sad, I have never missed an FIG trip. Next year we are taking everyone to the Dominican Republic, so I hope I will be back on track. I think we will have about 160 people in Napa, and I will miss them all. I really do love my job and all the people associated with it. Someone has to stay back and watch the ship!

Just a note - in December I weighed 149 pounds and now I am back up to 181. I have been eating everything in site. I really feel that the pulmonary rehab has helped me a lot.

Hello all! (Christi) Do know that no news is also good news. We have been packing in the fun while we can, with Addi of course. We had a wonderful weekend. Friday night we got to have dinner with family and friends. For the first time we gave the little ones a table of their own, in a restaurant. I know we are nuts to put 2 four year olds (Peyton and Jacob) and 1 three year old (Logan) and 2 two years olds (Patterson and Addi) at a table together, but they did great. They were funny to watch interact and I have to say quieter than the stories that were being told by the adults.
Then Saturday we went to Town Day in Davidson. Addi got to see a bunch of her friends, play games, ride a little train and obsess over the elementary school Jump Rope team. She tried to jump with them, quite entertaining. Then lunch with Uncle Lee and Mr. B and then Daddy went to golf with Mr. Bailey as well. Somehow golf took from 1:00 until 9:00, not quite sure how they played in the dark, but I am just glad Dad got some men time and on the golf course. The bug is starting to bite him again!
Sunday Addi and went to church, someone around here needs to pray for the poor souls that hang out with Daddy until 9:00 and not call home. Bo went to the Wachovia cup, then a Picnic at school and ended the night with Grams and Papa with no pants on. Talk about a good weekend. Bo is doing well, Addi and I are great, but I do have to say that everyone lately sure is answering the phone differently when we call. Sometimes we might just call to chat.
Take care
Christi and Addi

Hope all is well. I could not get back to the blog yesterday, as we got home at 2:30 am, then work, then pulmonary rehab, then work, then home to have dinner with Addi/Christi, then to bed! I was really tired. Christi said I would say more about the false alarm, so here goes:

I was hosting a conference call with Elizabeth in my office and suddenly one of the receptionist Angela came to the door. I of course dismissed her with a waive and went on with the call. She said something to me, and I finally knew something was wrong. I turned to call over to Elizabeth, and went outside the conference room. She said Duke was on the line, and my stomach dropped....

I went to the phone and talked to my transplant coordinator Khara. She said, come on up, an offer was made to you. I was shocked since I just got put on the list on Friday at 10:00 am. I went back and helped finish the call, told everyone bye, and left. Our company has grown to 70 plus, so I felt like I needed to tell everyone bye, but of course could not. I left and went home.

One the way, I tried to call Christi and could not get her on the home phone or her cell. I got home, and forgot that I do not have a key to my own house one, and two, I got a new car and did not have a garage opener since I had not programed my "button" in the car. Tracia came over to watch Addi while we went up, and she did not have a key either. I finally got to Christi, who was at the doctor with Addi because she was sick.... Addi was upset, so I had to hang with her and Christi got us ready.

We started on our way and we called a lot of people or sent them a text. It was a weird ride and I was not ready for it honestly. Christi and I really barely talked. I went pretty fast as well!

We checked in at Duke and got to a room. One of the docs came in and explained the deal. He did not give a lot of detail, but I believe the lungs were in FL, and the surgeon flew down to examine the lungs, harvest them, and bring them back and put them in me. We did learn that another person came to Duke as well, and it was going to be one of us that got the lungs. They would do some test, and the most compatible got the lungs. We got there at 7:00 or so and I got ready. I had to do a scrub and give a lot of blood! Then I watch the Yankee's game while Christi curled up on the bed and took a nap. The doc said our room phone would ring with the news.

My Mom, Caroline, and Mike came in. I asked them to stay home until we knew something, but have you met Jo Cain? They were there literally 10 minutes, and the phone rang. It was Khara, and she said the lungs were bad, so no go. I suspect they started to harvest them, and there was an infection or bruising. I do not know the reason.

Basically, 15 minutes later I was on the road coming back to Charlotte. I knew this was a possibility. Elizabeth M. had a transplant on her 4th trip, Greg had it on his first. It can go either way. After this dress rehearsal, I will be ready the next time.

I honestly was not ready for the call. I know that when the surgery happens, I will have a long road to recovery. However, I also know there is a chance I will not wake up. It was hard to say goodbye to Addi and leave. If you have ever known Addi, you know what I mean.

More to follow!

How to surmise the last 9 1/2 hours...Overwhelming is the word that comes to mind (Big word so it must be Christi, Just kidding) We are back home and we have experienced our first and hopefully our last false alarm. I cannot say we are disappointed, yet, we are more just "overwhelmed" and we have realized more the reality of our situation. It doesn't feel bad to have a "dress rehearsal" done, but I could have done away with half the anxiety. At least the bags are backed, Bo knows he is loved and prayers will be prayed, and well the doctors will only accept the best for him (and others). I will let him fill you in on the details tomorrow. Thank you everyone for the support, help and prayers. We know there are so many people to turn to we appreciate and cherish you all.
Love
Christi and Addi

Ok folks, here we go! Bo just got a call from Duke instructing him to drive in to prepare for his lung transplant. We are not 100% sure that it will happen but should know more later tonight. Bo and Christi are in the car on the way to Durham as I type.

A few extra prayers are in order for Bo. As information is available, we will share.

Brian Williams

I wanted to say sorry for the delay in getting up the news from my last visit. Christi was sick, Addi was sick, and I just got behind!!!!

I did got to Duke last week and my levels are down. Friday I was activated so I am on the list. Basically it is time to just wait for the call. I am nervous, but know this is the best chance for me to be around the longest possible time. It is scary to think I will be sliced and diced as they say....

Christi and Addi are feeling better today. Both were sick and not feeling well over the weekend. Christi and I watched Barbie moves with Addi a lot!!!!!

My weekend was good. I did play golf on Sunday and did ok. It was a lot of fun.

Here are some pictures from the beach...Addi loved splashing in the waves or as she calls them "hot Geysers" (Barbie and the Mermaids is what the is from) And then her a Daddy made a sand castle...

Hope all is well. Addi, Christi, and I made it back from the beach. i am hoping Christi will post pictures soon. We had a blast. We went to the aquarium, the beach, out to eat, and Brian and I play 18 holes on Sunday morning....

Addi love the otters at the aquarium, and of course had to take one of them home. She named him Oscar.

I am back at work today. I do go to Duke on Thursday to see if I get put on the list..... Let's hope so!

Just a note to say hello. Addi, Christi, and I are at the beach and Addi is full steam ahead. We met Kyle Petty today and he and his wife were really nice. Addi met their dogs on the beach and loved them.

Brian and Jennifer are down here as well. We are having fun. Got a little sun today and looking forward to some sea food tonight. Go back to the doc on he 24th, and if I go on the list, no traveling after that...

Post again soon....

There isn't a whole lot to say right now, so I thought that I would just post a couple of overdue pictures. Addi loves the Bobcats, mostly the cheerleaders and hotdogs, but she was so excited to go a game, that now we must go to all. She also is really into being a "Copy Cat" and so I tell her that all the time and she always corrects me and says, "No Mama, I not a Copy Cat, I'm a Bobcat!"

Seriously though, she is a Jayhawk this year...the is a picture of us celebrating. I guess we know who the lucky charm was and good thing I dress her!

Take Care
Christi and Addi

Hello everyone. I wanted to really keep you up to date on my progress in pulmonary rehab. I have really like my progress, and I got a report today to give to my doctors to update them.

Here goes: After attending 29 sessions, I have increased my 6 minute walk 76%, pressing 36 lbs more with my arms, 45 lbs more with my legs, my dyspnea with ADL score improved 45%, gained 18 lbs and 4% body fat. I did not go to any of the lectures (see college history :) ) but I only missed one question on my entry and follow up pulmonary education tests.

I have to say that my team at Presbyterian Pulmonary has really helped me. Brenda, Dave, Beverly, and Keyara have been on top of me to do the best I can. Each has helped in their own way, but Keyara is the person that follows me around and yells at me. I call her Coach K (because she makes me work too hard and is mean :) ) and she has taken a real interest in my progress.

So today is Keyara day on the blog. I dedicate this day to her.

Hello Everyone, Christi here! Can I say YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I love my Jayhawks, I didn't think I could love KU more, but I do! It is so awesome to see the way the town is rallying around the Jayhawks right now. It reminds me of when I was 11 and we won it in 1988. I remember my parents having us go outside to hear the horns honking in town. (We live 2 miles outside of town) Wow! For those of you that have never been to Lawrence, you should go and see a game in Allen Fieldhouse. It is a neat experience, it is one of the few venues with bleacher seating still, which doesn't really matter because most people stand the whole game anyway. I love my Hawks!
Enough I know, but for those of you wondering, Bo and I made it through the KU/UNC game just fine. Our fabulous neighbor Michelle came over to supervise and remind me that Addi might need to go to bed sometime. We made it though with a few outbursts at the TV, never at each other though. Seriously, more faith in us people. I do have to say Bo was great supporting KU the rest of the way.
On a more serious note, we are still waiting on results from Bo's liver function tests. We are dealing with new doctors now and we are realizing how great our doctors were before on giving us the information we need to know where we stand. Hopefully we will hear something soon. We are not trying to bother our new doctors to much, but I might have to call later today if we have to keep waiting.
Take care and Rock Chalk.
Christi and Addi
PS I will show pictures of the Little Fan soon...it is a good think Mommy dresses her in the morning. Much less I was outnumbered here, I told Bo the least he could do was give me the kid.

Hello everyone.

Still feeling good, but have to confess I have been blue since Saturday night. It makes me happy to see Christi so happy, but the UNC-Kansas game was awful.

For tonight - go Jayhawks!

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.....

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.

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

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

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

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

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

Happy Birthday Bo! We all Love you!

Love
Christi and Addi

PS Happy Belated Birthday Niece Ryan, she turned 2 Saturday

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

PS Go and see 27 Dresses, I loved that movie

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

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

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

I wanted to have a quick update for today.

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

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

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

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

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

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

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