Hello to All - We are trying to get back to "normal". But today is a huge and special day, BO's BIRTHDAY! We have made it another year. What a year to celebrate! Thank you everyone for the help, prayers, love and support!
Love to All
Christi, Addi and Bo - Birthday Bo

Hello - to the point. Friday is our day. We didn't get the news we wanted, but I would have to say it is the next best thing. Dr. Crawford, being the wonderful man that he is, took it upon himself to consult with the best at Duke. Dr. Kirkpatrick agrees with the findings in Radiology that the first spot was a stroke, there is a word for it, funny to, I will have to look it up. The second one he agrees is still "suspicious". That word makes me panic, but my understanding is that anything they cannot rule definitively on is considered suspicious. The spot is millimeters small and there isn't a definitively conclusion. But, not to get our hopes up, after conferring with Dr. Kirkpatrick and Bo's other team of doctors, Dr. Palmer and such it is an agreement they feel it is highly unlikely it is cancer. As told to us before, it is rare for Bo's cancer to go anywhere outside of his lungs. With all the complications Bo had during the transplant they agree it is more probable that it is another stroke, infection or complication from his procedure. With that being said they all agree now is not the time for Bo to undergo brain surgery. We first want Bo at full optimal health and in the meantime we will take the wait and see method. We will have another MRI in 6 weeks and see what is happening. It does appear as I mentioned to be extremely small and superficial, so if surgery is needed it should be an "easier one to do". (Is that possible?)
So we didn't get the complete news we wanted, but I will take wait and see over the other any day. Bo's odds haven't always been good (I always ask him why he couldn't have just won the lottery with things that are happening to him aka cancer, transplant problems and such, but maybe 2009 will be our year to celebrate)
Thank you so much for the prayers. Our next visit with Duke is in 2 weeks to see Dr. Palmer, he takes care of Bo after transplant, and then 4 weeks from that we see Dr. Crawford again with another MRI. Who would have thought a UNC fan and a KU fan would love Duke so much...
Love to All
Christi, Bo, and Addi

Thank you all so much for helping us through this trying time. We still have not heard anything further from the doctors. We are currently at the mercy of Dr. Kirkpatrick and his opinion, which may not get us any further, but will hopefully shed some light on the situation. I am sorry for not having any answers for you all, I know you anxiousness.
Another night for prayers and maybe Friday will be our day.
Love to All
Christi, Bo and Addi

Hello - We just got a call from Susan and we are still in the same boat of waiting, but she felt like we were leaning a couple different ways. Here is where we stand - the front larger of the 2 spots appear, per radiology, to be a stroke that occurred sometime during this ordeal. It appears to be minor in the fact that we haven't noticed anything physically different in Bo. They are leaning that way for that one, the second one they could not definitively say. They are hoping that it appears to be another small stroke, but truly gave no opinion on that one. So as of now we are leaning 1 of 2 spots as a stroke.
Right now we are going to wait until we hear from Susan again. They forward our MRI to a Dr. Kirkpatrick who specialists in Radiation Oncology to get his opinion on the "spots." The first as I mentioned they are leaning towards a stroke the second is the one that we might have to take to the next level. If that happens that means they might biopsy it, they might take the wait and see method or maybe he can tell us. He has opened the email, just no response yet.
So in quoting Susan, "Keep praying for good news. Try to get some rest and I will let you know as soon as we know anything."
Thank you everyone and keep the faith
Love
Christi, Bo and Addi

Still no word. I do have faith that Susan will call us as soon as she hears anything. With Monday being a holiday and Tuesday half the appointments cancelled, I can only imagine what today is like. No excuse, but they will call. No news is good news right? Gives us more time to pray.
Love to All
Christi, Bo and Addi

I just wanted to let you know that we have not heard anything yet, Duke time. As soon as we hear anything, we will let you know. Thank you for taking the time to say a prayer and keeping us in your thoughts.
Love to All
Christi, Bo and Addi

Hello to All - We finally made it back home after a long doctor day. We started off at 7:00 am fighting the snow flurries and making it to the hospital to have blood work done. We then proceeded to Radiology for a CT scan (whole body) and Bone scan (whole body) that took about 3 hours for the injection and then the scan. We watched the inauguration and the off the to the doctor. We got good news and then some well, not good news...maybe the better word is some concerning news. First the good - Bo's lungs looked great and his blood work came back fine. We were so excited about his lungs that the second piece of news caught us a little off guard. (The bad news) The doctors found 2 spots on Bo's brain. At this time we are unsure what they are and they could be numerous things. We immediately went to get a brain MRI and we are still awaiting the results, probably tomorrow morning. Dr. Crawford didn't want to speculate what these could be, but he did say possibly they could be "bruises (my term not his) after dealing with Bo's fluctuating blood pressure from his transplant, they could be some sort of infection, numerous other things we didn't go into detail for, or the dreaded "C" word. I feel like I have already asked so much from everyone, but as we are waiting word will you please pray for some good news, pray that we have the strength to wait for this news and strength to handle whatever news that comes forth. We will always fight the good fight and remember to stay strong. So for one more night, ignorance is bliss.
Love to All
Christi, Bo and Addi
PS on a side note, we are sorry for not being able to tell everyone personally about the appointment today. Right now we are cautiously going throughout of evening praying for good news. I will post as soon as we hear anything.

Hello to All - What a cold weekend. Just perfect for not coming out of our pj's. I know I need to stop writing that we are doing that...but you have to love winter. It reminds me of Kansas, except no snow and no negative 10 wind chill. Tons of playing inside and just hanging out.
Things here are good, we did receive a call that we are going up to Duke next Tuesday to visit with Dr. Crawford and Susan about how Bo is doing and to run a ton of scans. I guess it is time to get back to fighting cancer. Crazy to think that we have had a nice 8 month hiatus from worrying about cancer. I probably would have picked something else other than surviving a double lung transplant twice, but whatever it takes. It will be another long day of testing, blood tests, bone injection, CT scan, bone scan and then a visit with Dr. Crawford. We are expecting them to find nothing, praying also, but hopefully they can help shed the light on why Bo is so tired. His tiredness most likely is normal, but I would like to rule out other complications. Easy to say now, when they first called, I immediately panic and think they know something we don't, (not true) then I think I don't know if we can handle cancer right now. Now that time has passed, I know we can handle cancer, which I do not think there is any, but it probably doesn't help to hide your head in the "snow" and ignore it. We realize now that doesn't make it go away. So off we go to see what we are fighting, but more likely preventing from coming back. So long story short, Tuesday is a BIG day for us.
Until Tuesday, ignorance is Bliss.
Love to All
Christi, Bo and Addi

First Hello, Second Sorry. There is no excuse not to write and thank everyone everyday for what you all do for us. Helping, praying, thinking and supporting so always thank you. What have we been doing? Hmmmm
First my family came to visit for a bit, Addi always loves seeing her PapaCow and Grandma. She is very taken with Cousin Ami and Aunt Cyndi also. Anyone that will let her paint your toes is a keeper in her book. Then have been trying to get back on schedule since the holidays, Bo, Addi and myself. Getting up in time for preschool, Bo has been working on getting a schedule down and then extending his time working out and being at work. Right now his biggest obstacle is overcoming his tiredness. Everything is still exhausting, not as exhausting, but hard work. God is truly teaching him patience, he can move no faster than allowed and for all you that know Bo personally, patience is something he has little of and even less of moving slower.
This week we also met with our dear friend Sue. It was amazing to see her and her strength. She is an inspiration to see her carry through. For those of your following, Dear Bob seems to be occupying his time, I miss his hugs and jokes, but I hope soon to see with my own eyes that he is doing well. Marilyn is home and learning to adjust to life there. She is forever the fighter and is regaining control of how she would like her life to run, with strength and grace of course.
This week should hopefully be another of "normal". Bo is feeling better from his cold, my heart still skips a beat every time he coughs, but I try to calm myself that Bo will get sick and he will get better. Addi is all about the Panthers right now, dear God, if she ever met Steve Smith in person, with his jersey on, I think my 3 year old might faint. Tonight her make believe friend was Steve, he comes to the door, calls us on the phone, scores touchdowns and talks with his best friend Jake. She is a riot and should be fun tomorrow night during the Panthers game (at least half of the game)
Love to All
Christi, Bo and Addi

Hello - Christmas was wonderful at the Johnson House this year. Addi is spoiled, but not too rotten yet. Funny story - Everyone knows I love a bargain (another word for always looking for a deal or sale, aka - Cheap) So I get most my Christmas stuff after Christmas and then make the next years more decorative. Anyway, I found this ornament that opens up and sings "Away in a Manager" with the manager scene inside it that goes in a circle, anyway, I gave this to Addi. (She likes to pretend to be Hannah Montana now when she sings, and well that has been one of her hit songs along with Rudolph, I have to record and post, too funny)
So I hear Addi messing with the tree and playing with her new ornament (not any the new toys she got...mental note, less toys) Then I hear her say, "I can't believe it, I cannot believe it." Immediately I flash to this morning when she showed me an ornament under the couch she had broken and hid. (don't worry she got the speech about always telling the truth and not getting punished,hehehe) So I think, dang she broke it already, there goes $1.50 I will never get back. In she walks still muttering "I can't believe it" She looks up with her big eyes and says, "I can't believe I got this ornament, I just can't believe Santa brought me this. " The ornament wrapped tightly in her arms in a big hug next to her chest. That's when I knew...she truly is our miracle and brings out the Christmas in all of us.
On that note a huge "Thank You" to the elves that left some soup, hot at that and a present for Addi on the doorstep. I do not know who you are exactly, but she loves her doll and stroller.
I hope everyone had a wonderful Christmas and an even better New Years. The Morgan's are on their way out here and I cannot wait to see them. The Harvey's are coming too! It is hard to believe that it has been over a year since I have been able to go home. (I know home is in NC also, but home is always where ever your parents reside also)
Love to All
Christi, Bo and Addi

So sorry, we got that call late yesterday that everyone came back negative on Bo's biopsy and infection tests! Yeah...She said she only had good news, that is always a good way to start a conversation. Bo is finally coming down on some of his meds, so fewer pills, what a good way to start the year off. Unfortunately for Bo, the doctor thinks the best way for him to overcome his tiredness to by more exercise. Seems contradictory, but Bo needs to use those lungs get some oxygen into his system and hopefully that will help. We also do not have to go back until February 5th, so Bo and celebrate his birthday without a doctor visit! On that visit he will have to do a CT scan, 6 minute walk, and the regular tests, but no biopsy. That will come 6 weeks after that...all this of course is assuming we can keep the germs away from Bo. We have bought stock in Lysol and Clorox, oh and Addi's favorite hand sanitizer. I guess Bo gets off easy this Christmas, because I just got everything I wanted.
I do have to mention that yesterday due to my delay was me trying to cook dinner with no water. Something I completely took for granted until the water line on our street busted and it took until 8:00 to fix. Good thing we also have stock in bottled water.
Addi and I are off the play. Merry Christmas Everyone! Thanks for making 2008 such a wonderful year!
Love
Christi, Bo and Addi (aka Steve Smith :(, Jesus, Mary with a baby in her belly, Every Princess you can think of and now thanks to High School Musical - Troy (me) and Vanessa - Seriously, no more TV for her)

Hello - Boy is doctor day a long one. Thanks to our friends that helped out with Addi today and yesterday so we could leave last night and get a good nights rest before testing. We hope Preston and CJ feel much better. Thank you Hannah for sharing all your toys.
We started the day at 7:30 check in for breathing tests (PFT's), blood work and chest x-ray. Then went down for our bronch and biopsy. After that boy had to wait an hour before he could eat, so we visited our friends on 3rd floor ICU. They took care of Bo and me for so long how could we not wish them Merry Christmas. They are so sweet and appreciated seeing Bo. They have a tough job and not everyone gets the ending we did. No matter how hard they try not to care, they do. Then off to lunch with our buddies Joe and Marilyn. I am so hoping to get an email for Joe soon saying that they get to go home! I will keep you posted on that one.
Then of course the waiting game begins. Oh how I do not miss that! We finally spoke with Dr. Palmer, he will be our Pulmonary Doctor for good for now on. He is going to work with Dr. Crawford, our oncologist, to keep the cancer away. He stated that until they get the labs back, there isn't much to say. Looking into his lungs he thought everything appeared alright, but he hesitated to say that because he has no proof to back it up. We talked about Bo's fatigue levels and without the labs to base things off of he is hoping it is just Bo healing from his ordeal and maybe that Bo should increase his activity level so more. We are going to talk with the rehab ladies about getting a cardio schedule for Bo to follow that should help increase his activity and get the heart racing safely. So right now no news is good news and we should know more on Monday. Dr. Palmer did make a joke for Bo that he good looks and charm can only get him so far, that he might have to just work this one out...boy someone has been talking to him.
As soon as they call on Monday I will let you know. Thank you so much for the prayers they are working.
Love to All
Christi, Bo and Addi

Hello to All - I hope you are enjoying the Christmas season. It always amazes me how quickly Christmas sneaks up on me. I try to never let to stress me out, that is just silly, we are suppose to enjoy our time together and the presents are always just gravy.
Speaking of time together I have a little favor to ask, along with the many from this summer. Bo has a check up tomorrow, they are doing biopsies, breathing tests, the whole work up. And I have to admit I am a little nervous. Mostly because I just want Bo to always be getting better and a little bit selfishly I would like him home for Christmas. He promises me no matter what they say he will be home, I just wonder why in the world did we schedule this so close to the holidays. (I do not think we had a choice in the matter) We are expecting an uneventful trip, maybe some tweaking of some medicines, but to come home and stay there for a little while. So my favor is that everyone pray for things to be healing well for Bo and that he will get the enjoy the holidays with nothing hanging over his head. I would like a little less stress and a lot more family and friends visiting.
Take care to all and we will update as soon as we get some results.
Love to All
Christi, Bo and Addi - back to Jesus...

Christi here - Seriously sometimes you cannot make things up that kids do. Addi has always been a little crazy, obsessed, with the manager scene that comes out around Christmas time. I am very proud of her abilities to remember ever piece, Shepard, wise man, Mary, Joseph, and Baby Jesus, but this year she has taken it to a whole new level.
Let me start by saying Addi has been very clued in on pregnant woman, our doctor, Dr. Snyder was pregnant and she has now had a wonderful little girl, but anyway, for a long time Addi would tell people she has a baby in her belly. His name was always baby Connor thanks to our friends Walker and Candace that had baby Connor right before Bo was called for transplant. Anyway, so she liked to pretend to be pregnant for the longest time. Well now that Christmas is around Addi loves to pretend to be Mary having Baby Jesus. She would run around telling everyone that she has a baby in her belly and he name is Jesus. Great, that is fun to explain. So to appease my daughter's obsession with the manager scene I finally got her a toy one to play with, which she sleeps with now. But lately the toy baby Jesus is under her shirt and truly in her belly. I guess it could be worse and she could eat him and really put him in her belly. Well now that mind has gone to a whole new lever these last couple days...
She now proceeds to tell everyone that she is Jesus. Not quite sure what to say now. I have witnesses...we were out last night at a party and everyone would say, "What's your name?" "Jesus" was always the reply...I would say Lord help me, but it appears he has entered our house. You have to love little kids. It does make church more interesting. Addi now prays for Daddy, Ms. Sue and Mr. Tom, all her family and friends, Jesus, Mary, Joseph and Steve Smith. Seriously in that order. Kids...
Love to All
Christi, Bo and Addi (aka Jesus)(aka Mary giving birth to Jesus)(and today I am sure around 4:00 we will become Steve Smith)

Hello to All - I just wanted to let you all see my new favorite picture...
I also wanted to ask everyone to say a special prayer for our friends Sue and Tom. Tom passed away Monday night from a long fight after his transplant. Sue has been a rock for Addi and I when Bo was in the hospital and we were living at the summer house. Sue especially has a special place in Addi's heart, they played dress up, got the monster our from under the bed and wore their ball gowns to dinner. I hope that we can be as good of friends to her these next couple weeks as she was for us this summer.
Thank you everyone
Love to All
Christi, Bo and Addi

Hello to All -
Finally we are all starting to feel better and get into the Christmas spirit. We are still really hiding out at home, mostly from germs, but it has been nice to spend this time together. Only every now and then do we get stir crazy and have to go out and do something, but going out for dinner is always a good fix for that one. Cooking is one thing I greatly appreciated that the Residence Inn took care of, because now, ugh. I am working on it and I shouldn't complain, my incredible neighbors helped out immensely when we got home bringing meals. It did teach me that I might need to take come cooking lessons...oh well hopefully my Mom and Dad can visit soon and I can get some lessons from them.
Bo is doing well. He is getting into a nice routine of 2 days a week hand therapy, 2 days a week trainer, and 5 days a week working out on his own in the basement. I guess now I need to do something about those few extra pounds. But it is the holidays...
On a funny note, Addi is obsessed with the Panthers. Since we took her to the one game, she wants to watch every game and all football is the Panthers. She gets some of it, always want to know what they are going to do next, throw, run, kick...and she loves number 89, Steve Smith. You can call our house and ask her if she likes the Panthers, Who her favorite player is and she will always say, Steve Smith, number 89. He catches the ball and makes touchdowns. She is so great!
Love to All
Christi, Bo and Addi (aka Steve Smith)

Hello - and guess who thought it would be fun to get the flu also! Thank God not Bo...Yep, one week after Miss Addi got sick, Mom is down and out. Seriously the flu shot knocked me on my tush this year and now this. Stress must reek havoc on ones immune system. On well...more time at home with the family. This is causing a big cramp on my Christmas shopping, so sorry if the presents are a little late.
Bo is doing well. He is working with a personal trainer now to help keep him on schedule and in shape. He also got his Christmas gift early....a treadmill. Lucky him. I already got my present, and Addi has way to many coming.
We visit the doctors again on the 18th for a bronch and biopsy. We also see a dermatologist on the 15 to keep an eye for skin cancers, which are prone when you are on immune suppressants.
Things are good and getting better.
Take care
Love to All
Christi, Bo and Addi

Hello to All - Christi here. Sorry for not posting. Things were quiet after I posted last time and then the weekend hit. Not like the other weekend, but this time all Addi. Poor little thing got the flu...viral. The last thing I wanted to here with Bo's health this year. She has been running a fever and through up at night during the weekend. Monday we went and saw the doctor and she confirmed viral. She was really on affected a night with fever and throwing up, but now she has a head cold with it. I hope we are done being sick, but her poor nose is red and sore. Thanks Bob for the email about the Vicks on the feet, we are trying it tonight.
Bo is doing well with all this. Nothing, so far. Of course we all got our flu shot, but we know those are not 100% all the time. At least not for Addi. So it looks like we will staying here, I better get my turkey.
If I forget and do not get to talk with everyone, please have a wonderful Thanksgiving and know at our table and in our prayers we are thankful for each and everyone of you.
Love to All
Christi, Bo and Addi

Hello to All - Talk about an amazing weekend. (Busy, but fun) Unfortunately my friends from Duke were unable to come and visit, Debbie wasn't feeling well, and Sue enjoyed her time at home with it raining, then had to race up and see her sweet Tom. He is a fighter, please pray that he can get off the vent soon. But hopefully we can meet up soon.
Saturday was a marathon of birthday parties. We love to see all our friends, and they love to plan parties on the same day! First our friend Maddie turned three, we painted and glued. If anyone needs ideas for Christmas for Addi, Elmer's glue is the trick. She liked to squeeze it out on paper and glue anything. Then lunch with friends, Peyton and Patterson, a little nap with Daddy and then we were off again. Next was our friend Nyla's she turned 5 and we jumped like crazy a Monkey Joes. Addi has the best time with her older friends, CJ and Hannah, by the time we left there, Hannah was our best friend. Unfortunately we had to leave a little early to move on to Owen's birthday. More jumping and gymnastics, he turned 3! Finally we finished the night off at Taylor's Tinkerbell party and I think Addi ruined the movie for everyone because we watch bits and pieces of it everyday (thanks Cousin Wyatt) Addi would say what was about to happen right before it did...ooops luckily the kids didn't seem to mind. Then off to bed. And for those wondering, I did try to leave most partied before cake and ice cream due to the influx of activities and excitement. (Daddy got one good day of rest)
Then Sunday...I let Addi sleep late with Daddy and did church by myself. Then home and off to the Panther's Game. Yes, the whole family attempted to go the game. We got there right at kickoff and left at half-time, but I do believe that was one of all of our best days. Bo was excited, but tired, to get out of the house. That all seemed to fade when his daughter became obsessed with football. "Daddy what is he going to do next," "throw" "run" and then always "Ah Man he got tackled" Thanks to the drunk men beside us, Addi always knew what to yell. I think she just liked that everyone was yelling something. But I really do think she got the idea of it. Run or thrown and then try and tackle him...sometimes we kick. Oh and we all loved the cheerleaders!
Back home for nap time and then I went to see Chicago with some girl friends and Daddy and Addi watch Dora all night before bed.
Ah what a weekend. I think I will hit the nap time today at my house. If anyone want we will all be sleeping around 2:00.
Love to All
Christi, Bo and Addi

Hello to All - Christi Here - Hopefully soon we can get Bo back on here. It is hard for him to type with his hand. But he is working on that. He sees a hand therapist, I am sure she appreciates me calling her that, 2 times a week. Little by little he is getting more flexibility back, next will be strength.
Things here are good. Tomorrow we meet with the local lung doctor. Someone here that keep an eye on Bo just in case he goes into the hospital for some reason and we cannot get up to Duke. His name is Dr. Howard. He comes highly recommended and works with the "exception" in lung transplant patients. It was imperative we found someone well versed in the medicines that Bo is taking so we have no confusion. Other than that not much to post about us...so about a few of our friends.
My dear friends Sue and Debbie are coming to Charlotte for a little R&R. I hope to meet up with them on Friday, I miss them everyday and feel like a horrible person for not keeping in touch better. I vow to do better. My hero Marilyn, she had parts of her feet amputated due to complications after her transplant, is up walking again. Each person's journey is so different, but it appears that Marilyn's has been extremely complicated, but nothing is slowing her down, physically or spiritually. She is such an inspiration. My dear friend Bob had shoulder surgery, please pray that he makes a complete recovery, painless and quick. He will start rehab also, so maybe a few prayers for his therapist. (A warning also for his jokes. hehehehe)
On a sad note, a fellow cancer fighter Pat Kitts, I hate to say lost her fight, because she is now in God's hands, so we will just say is continuing her crusade up higher. Her spirit and fight were constantly hopeful. To read more about her or send notes, please visit http://holdontohope.com/ We have to continue to fight this awful disease. November is Lung Cancer Awareness Month, but no one seems to know. I hate the stigma that goes with Lung Cancer and until that changes there will never be the support or funding. I am just glad we have all you. Enough on the soap box...Sort of like the old days. Maybe we need to pick three things to pray for...Please continue to pray for all those fighting cancer, any type and for any reason, known or unknown, that it occurred. With that said, for any one that has to venture down the path of transplant pray for them and their family that love and support them. So many quiet fighters please give all strength. Remember One Day at a Time, One Moment at a time, One Breath at a time...we cherish all.
Love to All
Christi, Addi and Bo