Hello and so sorry. Yesterday was such a long day that we went to bed almost right after we got home. Sorry Lena and family that has been doing a phone tree. We got neutraul news. It appears that nothing has changed. Unfortunately when you do a MRI you can't guarantee that the machine will image exactly the same way or that the same person will analyze the images. Dr. Crawford says that the lab believes the spots appear the same, which is good. Dr. Crawford is going to again send the MRI to Dr. Kirkpatrick, the specialist and let him look at it and confirm that nothing as changed and see if he can reassess anything. So we wait for him to confirm and we are going to come back up in 2 months and pray that it either leaves or stays the same.
Sorry for taking so long to notify everyone, we will do better next time.
Love to All
Christi, Bo and Addi

Hello to All - Well we have another snow day! Addi and I marched outside this morning and tried to play in the snow. It rained all day yesterday so this snow was frozen and wet. Some trees fell down and knocked out power. We only lost our satellite for a little while, so no damage done here. A couple of pictures of us all bundled up...
Tomorrow is a huge day for us. Bo gets another MRI done on the brain. Let's pray and hope that nothing has changed and the can then rule a few things out. So we are hoping for an uneventful drive to Durham and then some uneventful news.
Love to All
Christi, Bo and Addi
While you praying, please say a little prayer for our friend Jerrold. He is waiting on news about a spot they found on his newly transplanted lungs. (He received a transplant about a year before Bo) They found a spot, he names it Jack. Jack just needs to go away.

Alright - Let's have the fun begin....we would love any support you can provide. Volunteering, monetary donations, silent auction donations, services. We would love to help advertise you services along with raising money for our cause. Mark the calendars - April 18th! We will start selling tickets in March. Please contact me via email, phone or through this website or addiscure.org

Love to All

Christi, Bo and Addi

Well just another week at the Johnson house, very nice to say. Addi had her first visit to the dentist on Tuesday, after the dreadful fall up the stairs last Thursday and her teeth check out great. Apparently our daughter is pretty stealthy when she falls and she got her head turned in time, a straight line bruise across her cheek and her teeth took the final blow. She banged them just enough to cause much bleeding along the gums, but no broken teeth (yet) She let them get some x-rays to prove this. And we got to see the permanent teeth, which the first four are knocking to come in. I guess that is what happens when your child gets teeth at 4 months, they come out sooner. She really did great, got a little antsy when they tried to x-ray the sided, her mouth is too small so maybe next year. She left them clean them and floss. She was real excited to get her prize until she shut her finger in the drawer. Tears fell then. Darn those plastic drawers.
Last night we stopped in at Bo's work's meeting they have going on right now. It was good to see Bo in action. His fatigue levels are still extremely high, but Addi and I keep pushing him to try to do more and more stuff. There was a lot of amazing support and encouragement from fellow workers. It was good for Bo to hear their support. Thank you to everyone and hopefully soon we will get him back there full time.
Love to All
Christi, Bo and Addi

Alright - I have thought this one to death and we are going to go forward with our Spring Addi's Cure Event. So please mark you calendars for April 18th...I will get more information out a little bit later. We are trying to keep tickets the same price, along with more entertainment and a themed casino night. We would love all the support we can get along with some great partying, there is so much to celebrate!
With Bo still recovering from his transplant, we might need a little more help this year to pull the event off, so if you have some free time, items to donate, or any monetary donations, we greatly appreciate your help. We have about 3 weeks before we really start advertising so we would love to advertise our sponsors at that time and during the event. Please feel from to contact me or info@addiscure.org. We will be updating the website as soon as possible.
Always thank you for those that support us and if you business plans on donating again this year, I would love to help get our company name out there as one of our sponsors with our event this spring.
We will be looking for volunteers that evening as well, thank you to the girls last year that got some community service hours in as well as helping us, I will be contacting soon.
Love to All
Christi, Bo and Addi

Hello to All - My we love our weather right now. Yesterday was a little windy and wet, but 70's in early February, any day. Nothing really new to report health wise. We see Dr. Crawford for the Brain MRI, March 3 and then Dr. Palmer for Biopsy March 19th (Happy Birthday Mom)
So now we get an update on Addi...she fell last night, knocking her teeth. We are waiting to see what is going to happen. Her gums are red and cut, let's just hope that is all there is too it. It is funny I told some friends of mine things happen in threes, Logan, Byers and the next wild child is Addi. She fell last night, up the stairs. We will have to wait and see, I already called the dentist.
On another note Addi's new thing is that "something" (today she lost her ball) is "BREAKING HER HEART." Now that is a hard pill to swallow as a Mom and Dad. She also has started saying that her "dreams cannot come true, because ____" then you can fill in the blank. Seriously, turn up the drama on this one. To many princess movies I guess.
She is really into love right now, they talk about it at school a lot. She loves about everything and everyone, but as a plug to us, she really loves her Daddy and Mommy. Daddy is always first, but isn't that how it should be...Mommy needs to cut back on the discipline to move up on the scale. Three is a fun age. She puts Daddy in time out ALL THE TIME, lord only knows what pestering he is doing and she tells him when he is grumpy to "LOSE THAT ATTITUDE" he needs to shake it off. Then she proceeds to show us how to shake it off, normally the attitude leaves and laughter comes. Somehow it always works.
Enjoy the day
Love to All
Christi, Bo and Addi

Good Morning - sorry yesterday was a long day. Finally we had an uneventful trip to visit with the Doctors. We started off by dropping Addi off at her friend Maddie's house for the day, at 7:00 am, thank you Robin and Brian. Then off we drive. We got there around 9:30, did the standard blood tests, chest x-ray, and PFT's (pulmonary function tests aka how well the lungs are working) Bo's PFT's were up, so he is breathing stronger and stronger everyday. Then we went to visit our friends at the Center for Living, where Bo did rehab, and they reassessed him. Everyone is trying to figure out and conquer Bo's fatigue levels. Surprising or not surprising Bo performed better than when he left, Thanks to Dave the trainer. He is at 80% of a "normal" healthy person. Still no answers to fatigue. Then we wait...Duke time.
We got in to see Dr. Palmer and he reiterated what the nurses that performed the previous tests said, that Bo is getting stronger. He touched base a little bit about the lesions on Bo's brain, he is really letting Dr. Crawford take the lead on that one and he will work with him depending an what Dr. Crawford finds and assesses. (What great teamwork and we are so glad we found Dr.'s that are not afraid to check their egos - Neither one of them have an ego (rare).) Side note - Dr. Crawford was listed in the top 5% of Oncologists people would want to treat them, we sure got lucky meeting him and Susan.
Dr. Palmer spent a lot of time talking with us about Bo's fatigue level and trying to figure out what might be causing it and what might help it. He has admitted to us that this might be something they will never find the cause for, but the will always try to make Bo feel better. He has admitted that Bo is one of the few patients that have survived the type of complications he has and he (and the medical field) are unsure of what neurological complications could have occurred when Bo was surviving on ECMO. It is possible that Bo suffered complications from ECMO, the lesions could be suppressing his activity level, all the medicines Bo has taken at different times could still be filtering in his body. He does believe that with time Bo will get stronger until then he is going to do all the he can safely do medically to help Bo along. So we are tweaking more medicines, adding some, cutting back on more and trying this for a little bit. In 6 weeks we go for another biopsy of the lungs and hopefully we will keep getting great results. We are also going to revisit with ENT (Ear, Nose and Throat) to look at Bo's vocal cords. He has been coughing a little more, could be due to weather and I cannot get him to wear a coat, but just to double check nothing is sneaking down the wrong pipe making him cough. Remember though we are visiting Dr. Crawford in 4 weeks for another MRI of the brain, someone has to check is still has one in there...just kidding, we hope and pray those spots are not changing or they could just leave for as far as I am concerned.
Sorry the post was so long, but I wanted to try and explain where we are now, where we are headed and how grateful we are for having you all along with us on this journey. I think forgot to mention that before, so I thought I would sneak that one in there.
Take care and love to All
Christi, Bo and Addi

Hello I forgot to mention before that tomorrow Bo and I are traveling to Duke to have some pulmonary tests done. These are the standard tests he has been having every month and before it was every 2 weeks. Dr. Palmer will hopefully give us some light on Bo's tiredness. Wish us luck and we should be back late tomorrow. We are not expecting anything out of the ordinary, so let's hope we are right with that expectation.
Love to All
Christi, Bo and Addi

Hello to All - Well today we got our first "real" snow day. Now everyone in Kansas don't laugh at our level or snow, all that matters is that we got snow, Addi got to skip school and Mommy got to make snow angels too...Addi wanted to make a choir of angels. I do have to kid that doesn't get cold either. She would have stayed outside all morning, but Mommy couldn't hang.

It has almost already melted, but we still had fun! Addi did say her favorite part was the hot chocolate afterwards. She looked a me and said, Thanks Mommy, I sure do love you!

Love that kid

Love to All

Christi, Bo and Snow girl Addi

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)