Thursday, December 31, 2009

Happy New Year
All our Love
Christi and Addi

Tuesday, December 29, 2009

Good Evening - Addi and I are finally getting over our Christmas colds. Addi experienced her first sore throat and it was an experience for me. She refused to swallow and got herself so worked up that I had to call for back up from Grams. It is during these times when she hurts herself or doesn't feel well that she wants Bo the most. She always has and this has been a adjustment for her. We are working on it, just one day at a time. (Which is might say is a little ironic that she has always wanted Daddy, I like to think I am nurturing as well, kids...)
We are planning for a quiet New Years. Other than the first year Bo and I were dating, we have always kept them quiet. Not one for going out and partying it up, so we will keep it quiet. I have come to realize that I have a better time handling the big events it is the little moments that are harder. The times in the car when you have a moment to think, when I would call and chat with Bo, quiet moments of Addi watching TV, making dinner for 1 1/2 now... those moments. So when you see me driving down the road not quite looking like myself, just wave, I am okay, just having a moment.
If I don't get back on here, I hope you all have a wonderful, safe, happy and healthy New Years. It is with mixed emotions for tomorrow. I don't want to move on from 2009, but I sure don't want to stay here either. (Bo would never have wanted that) I guess there is one thing for certain, life will go on and time will keep moving forward. We will just try to grasp at those moments, make more memories and love one another.
Love to All
Christi and Addi
PS - Happy Birthday "Old Lady" Cyndi
PSS - One more Addi story, the other day we were listening to "O Come All Ye Faithful" and Addi says to me, "Mommy this is the song I think they sang to Daddy." Completely catching me off guard, but I hope she is right and when they called Bo home the angels sang him right to heaven...

Sunday, December 27, 2009

Just a quick note that is a little funny...Addi just had a epiphany.
"Mommy, I just thought of something...I am glad Daddy's in Heaven"
"Why is that Addi"
"Because when Daddy is in heaven, he can make my dreams come true." Arms thrown up into the air...I start to think I am so proud of her...then it comes
"Addi what do you wish for?" ....drum roll
"More Toys!"
And to think Christmas is here in 363 more days! At least she did mention something about giving her old toys away...
She does know her Daddy though and it will probably happen, somehow...
Love to All
Christi and Addi
PS - Happy Birthday Big Brother!

Friday, December 25, 2009

Merry Christmas to All - We are having a good Christmas. Toys R US threw up in our house, with Polly Pockets and My Little Pony....Why is there so many little pieces? We are most certainly missing Bo, but are happy we have each other, wonderful memories and "He is always in our heart." We carry so much love for Bo and talk about him often that it always makes the memories a little more real and close to our hearts.
Thank you to everyone that has been checking in on us and for all the great posts on Facebook. It makes it easier to carry on when you can feel the love from everyone. Addi did pick up a cold yesterday and was a little out of sorts last night. She slept forever this morning, so we are enjoying the day together in our pjs. (After Grams, Papa, Tracia and Mr. Bob came over to watch Addi open presents and give Me my present of helping me get everything out of its box. THANK YOU FOR THAT!)
I did save one present Bo had picked out from Disney and had shipped back. The Disney Princess Castle, she has declared it her favorite present. Probably because of the size of the castle, all the princesses that came with it and well it was from her Daddy. A sweet moment to cherish our time together from this year.
Bo would want everyone to enjoy the day, share many laughs and embellish as many stories as possible reliving the "Good 'ol Days".
Love to All
Christi and Addi
PS - Did I tell you about the time...just kidding

Friday, December 18, 2009

Well another week down. Addi and I have decided that we are going to stick around NC for the holidays and for a while afterwards. Addi has had such a crazy month and with the hype of Santa and Christmas, I think it is just best to get her stable here. I am unsure with some of her unrest and temperament if it is dealing with the loss of Bo, Christmas or her unstable past month, so here we are and here we stay. If you have plans we are here and we would love to see everyone, as much as possible.
Speaking of Addi, lately her big issue/question is that she knows her father so well. The question we deal with all the time is, "I know Daddy is asking God to let him come back to his daughter, because that would make her happy. And her Daddy would do anything to make her happy." (So Bo...) Tough one I I explain to her the God needed Daddy to be an angel with him to help make us and a lot of other people happy. We will always have Daddy with us in our hearts and our fun stories/memories.
Now switch to today. We received some of the prettiest snow today. Which is a little early for this year. Addi was so in love with it and everything about it. We decided that her Daddy would do anything to make her the happiest girl in the world, hence the wonderful snow. Her Daddy can't be with us physically, but he went to work in heaven and gave her one of the greatest days. I promise we will not always be so sentimental (sappy), but today we needed it. We then proceeded to have hot chocolate, her cup has hearts all over it, and she showed me where each of our hearts were on the cup. "All our hearts were connected."
We are excited for Christmas (I need to get moving with the final things to get done and start wrapping.) I am sure the holidays will get harder the closer we get, but right now we are focused on enjoying the day and knowing that Daddy loved us so much. Having a 4 year old makes you push though and carry on. Bo and I decided a long time ago that she deserved the best from both of us, unfortunately that was harder on Bo back in the day. But he always rose to the occasion. Now it is my time...our time.
Love to All
Christi and Addi

Tuesday, December 15, 2009

Hello to All - Well Addi and I made it through our first day "on our own". I put that in quotes because I know and she knows that we are well taken care of and looked after by everyone (in NC and far away) but with that being said, without family in the house and around. We are trying to find out "new normal". I wish I could say we did it gallantly, but to no avail. I think the weeks have caught up to us and tiredness did play a part, but there was a few tears, from both of us.
I think we both have a hard time accepting our new reality, but we know it our hearts Bo would want us to carry on. It is funny the things Addi says to me when she catches me in a sad moment (everything I say to her)
"Mommy I am still here."
"Mommy we are going to be alright."
"Mommy, Daddy is still in our hearts."
With that being said Addi did have the cutest (and heart wrenching) conversation after school on Monday, with herself and Daddy. She missed a birthday party on Saturday with the family in town, but Anna was sweet enough to give her a party favor, a small Christmas tree to decorate. Addi climbing into the car, this is our conversation
"Mommy, I can't wait to show Daddy how lucky I am."
I was thinking, oh no, again we are going to have to have the conversation that Daddy is in heaven. "Addi, how are you going to show Daddy your tree."
"Mommy, (with a little exasperation) Daddy is in my heart." Then she proceeded to lean the tree to her heart. "Daddy, Look how lucky I am."
Addi speaking for Bo, "Oh Sweetie, you are so lucky."
"Daddy, don't I have the best friends."
"Sweetie you are so special and I love you more than everyone, with Mommy."
I am trying not to let her see me cry, but I am just grateful this is how she remembers her Daddy talking to her and always calling her Sweetie.
Love to All
Christi and Addi
Praying for more rest and a day filled with love and happiness tomorrow.

Sunday, December 13, 2009

Just a quick (and late) thank you so whomever helped put Bo's name on the football during the Appalachian vs Montana game. What an incredible tribute. We did see it and loved it, he would be so honored and proud. We just wish the game would have turned out differently...
Love to All
Christi and Addi

Saturday, December 12, 2009

Hello - It is crazy and surreal to think that a week has already passed. I am not sure what the word would be to describe this week. So much sadness with Bo's passing, so much gratitude for the kindness of stories and love showing Addi and I support and a little denial that my Bo is gone. I still find it hard to believe that he won't walk through the door, change my channel to sports center, or holler from the bed room for Addi and I to come in and watch Wow Wow Wubzy with him.
Of course my focus right now is Addi. She is doing alright. May statements of missing Daddy. And many questions of why Daddy isn't here. One conversation we had,
"Mommy, why did Daddy die"
"Daddy, had cancer and it made him real sick to where his heart stopped working."
"Why, did God want Daddy in heaven?"
"God needed Daddy to be an angel with him. You know what I think Daddy would want us to do?"
"What Mommy?"
"I think Daddy would want us to be happy, and play and just love everyone."
"You know want else I think Daddy would want us to do?"
"What Addi?" (This could be a loaded question)
"I think Daddy would want us to make sure no one else gets cancer."

From your mouth Addi to God's ear.

Love to All
Christi and Addi

Wednesday, December 09, 2009

Just a quick thank you for all the out pouring of love and support. What an amazing day cherishing the one I love, the one you love. Thank you to the friends that helped carry Bo, that helped throughout the cermoney and who spoke on his behalf. I couldn't ask for better men to help raise my daughter and keep the spirit of Bo alive. It will take all of us to raise her and live up to his spirit.
I do not think I can let go of this blog, yet. To many times we have had those rough days, and selfishly put the word out that the day was rough and you all came through with the words of encouragement. I might/know still need those days in the future. I promise not to bother too much, but many of you (even though we may have never met) feel like close friends.
Love to All
Christi and Addi
Hello to All - Thank you all so much for visiting us last night. I know I loved Bo more than anything, but the kind words said just reassured how wonderful he was. I cannot take credit for finding him, as many of you know we met on a job interview (he was interviewer and I interviewee) so he asked me out, but I did say yes. (Who really could say no to Bo)
Again Thank You
Love to All
Christi and Addi - The Wild One last night
Also for those of you that can attend today, please join us for Bo's BBQ right after the service. There will be no graveside service today.

Sunday, December 06, 2009

Hello to All - Just a quick note to say Thank You for all your kind words, love and support. I am humbled by every one's generosity. Bo would not like all the fuss, but he would love the good times and talking with everyone. Somehow, someday I will repay all of you for helping Addi and I through this.
A long time ago Bo and I stopped trying to figure out why this happened and just tried to live our lives. Now that this day has come, I try to make sense of it. I have tried to understand, probably never will. I have decided that Bo was such an incredible person (I might be biased) and touched some many lives, that taking him from us is a challenge for us to live to his standards. If all of us that knew him can be half as nice, compassionate, generous, loyal, etc. then this world will turn on it axes. So during this holiday season I hope all will do one act of kindness to one in need. Pay it forward in Bo's honor. Do it for Bo. He would want nothing more and expect nothing less.
Thank You again for your words, it helps to carry through each day, each moment.
Love to All
Christi and Addi

Saturday, December 05, 2009

As you can imagine today has been felt with many highs and lows. My quiet house, pictures that bring smiles, stories that bring laughter and heart ache that brings tears. I knew I could never prepare for this day, so I never tried. It would always be a thousand times worse, it is. But, we will never give up (Go Heels, that will forever follow that phrase with a little murmur from me) Addi is stronger than I could ever imagine and I will follow her example.
Arrangements have been made:

Tuesday - December 8th 6:00 - 8:00 pm
Raymer Funeral Home
16901 Old Statesville Road
Huntersville, NC 28078

Wednesday - December 9th - 11:00 am
St. Marks Catholic Church
14740 Stumptown Road
Huntersville, NC 28078

Receiving Visitors at the Yacht Club following the Service
18501 Harbor Light Blvd
Cornelius, NC 28031

Love to All
Christi and Addi
It is with a heavy heart that I say, my love passed away this morning. May he rest, in peace.
Love to All

Friday, December 04, 2009

Just a short post, Bo is resting at home now surrounded by love.
I think for the first time I am at a loss for words.
We are not sure how much time we will have together in this next phase, selfishly I want another 3 1/2 years, but I do know better. I want no suffering, no pain. I want Bo to do this his way on his time. We will all ride this ride together, celebrate his life and journey.
I also want to thank everyone for his kind words. Not for just right now, but for me to share with Addi in the future. With your comments, letters mailed and pictures I hope to create a volume of books for her to have forever celebrating her Daddy. (I hope you get the hint, that if you have anything you would like to share about Bo, with Bo or pictures, I would love to have some) Everyone of you, people me have met and people we have not met, are special to us. We talked many times about this blog and how grateful we are to have it. Our toughest days were sustained many times because of words said on this website. Thank you.
Thank you for sharing our life with us and this journey.
Love to All
Christi, Bo and Addi
PS - I guess I did have enough to say after all - Always me

Wednesday, December 02, 2009

Hello to All - You might guess from my delay that I do not want to type this post. I hope we can count on everyone to walk our new path with us, with love, respect and the dignity Bo deserves. Our wonderful friends and doctors came down to give us some analysis and help our decision process. With their input we have decided that Bo isn't able to continue any more treatments. At this time it might do more harm than good. So now we will start the next phase in our journey together. Bo will chose how to live his life to the fullest.
Tomorrow Bo will come home and we will have assistance in making him comfortable. I ask that you give us time to get him comfortable. I ask for time for us to adjust to our path of living life as Bo chooses. I know you all love him almost as much as I do, so we want you to come and celebrate our journey with us, but I am going to be selfish and cherish as much time as I can with him as well. I will post when we can have visitors, but please be aware that Bo cannot time your visit and he might be resting or only able to talk for 5 minutes.
I know the next question is time, how much time do we have...once again I have no answer to that. No magic crystal ball. We have now and that is more than some people will get. I think coming sooner rather than later is always best because we never know what the future will hold.
I want to thank everyone for their love and support. Our journey together is not done, I hope will never be done. I know Bo is as special to you as me.
Tonight we were watching the Jimmy V Classic and Dr. Crawford asked Bo if he remember what Jimmy V's famous saying was, Bo with his quick wit said, "Go Tarheels", hehehe, Actually is was "Never Give Up, Never Give Up," and that is what we will do.
Love to All
Christi, Bo and Addi
Hello I just wanted to let everyone know the time frame will not be until late tonight. Dr. Crawford and Susan and traveling after work to come here to be with us. I can only imagine how many times refresh gets hit when you are waiting for news. (You all taught me during transplant) So I am learning.
Bo has been resting most of the day. We are trying medicine to get fluids off him, we just started those and it will probably take 24 hours to know if they are working.
I will post when I can tonight, I am just trying to figure out how to juggle Addi and the late not Dr. visit. I have been trying to be home for most breakfast and dinner meals, so tonight might be an exception.
Love to All
Christi, Bo and Addi
Don't hit refresh until later :)

Tuesday, December 01, 2009

I apologize for just now posting, no computer and I have been spending as much time as possible with Bo and Addi. Today was a quiet day, we have a great doctor here that is more than willing to let Dr. Crawford call the shots. He is constantly in contact with them. With that being said Dr. Crawford and Susan are coming down tomorrow from Duke to put "eyes" on him and assess the situation from people that have seen him through his battle for 3 1/2 years. I also know that they probably understand that I cannot move through this process without differing to them some way. I value their input and help guidance from them will give us all confidence in decisions being made.
Bo has improved kidney function today, so our decision to keep hydrating him was a good one. He still has a long way to go to have normal function and everyday is a new day, but as we have learned before, stable is good. Bo has other complications as well right now, some minor and some not so minor that we will need to address also. One day at a time, one step at a time. As for now though the prayers for improved kidney function are working, now we also need to pray for reduction of fluid in his 3rd space. (Which, dumb downed for Christi means, swelling in his legs and abdomen) This is tricky because most meds they would use to relieve this are hard on your kidneys, so we wait and try to make Bo comfortable with pain meds until we can decide what to do.
Thank you all for your wonderful support and especially all the love to our entire family. I am extremely grateful to everyone and the kids helping to distract Addi so I can be here as much as possible. We can feel the love and support. I also know it is hard not to come and hug us all here, but thank you for respecting our need to handle Bo delicately right now with no visitors. He exhausts easy and if I know him, he would want everyone to come in and chat for a couple hours. Just know we tell him everyone is thinking about him and he knows he is loved, never doubt that.
I promise will do better keeping everyone informed, I just need to remember to keep a computer handy.
Love to All
Christi, Bo and Addi
PS - Sorry for all the typos, when my posts are long I have a hard time going back to correct my typing and grammar...

Monday, November 30, 2009

Hello - Just a quick note. We are still in the hospital getting fluids. They doctors should make their rounds late this afternoon and maybe we will have an idea of what the next step it.
His kidneys have minimal output right now, but sometimes it takes 24 hours to see how things are progressing.
Please keep praying.
Love to All
Christi, Addi and Bo

Sunday, November 29, 2009

Hello to All - It it with an extremely heavy and worried heart that I type this to you all. I do understand this is going to be a shock to everyone, as me and the family as well, Bo's body has taken a dramatic turn in the last 48 hours. Addi and I returned early to Bo with him considerably, fatigued, confused and bloated. We spent the night with him to bring him to the emergency roon early this morning.
It appears that Bo's kidneys are struggling and potentially shutting down. This could be due to dehydration, so we are getting fluids now in hopes they will start working again. The next 24-48 hours are critical. Please if you have a moment to say a prayer, please pray Bo's kidneys get working better and that we can get him to chemo.
I am in constant communication with the Duke doctors and everything possible that could be done is being done.
I will try my best for myself or someone else to keep you updated.
Love to All
Christi, Addi and Bo
At this time all we ask for is prayers and as help is needed I promise we will ask for help. For now please no visitors, we are hoping rest and quiet will help.

Tuesday, November 24, 2009

Hello to All - and Happy Thanksgiving!
I type this a little freaked out. Originally we had planned to visit my family in Kansas for the first time at Thanksgiving (Bo has to see the craziness of my Mother), but Bo really isn't feeling well enough to fly. He has developed a new, painful clot, in his leg which makes walking hard and well, painful. So he is insisting that Addi and I go on to Kansas. Don't get me wrong I am excited to see everyone in Kansas, I just fear that I will be so stressed out about Bo that it will be hard to enjoy myself. (As I keep talking to myself) I know that Bo is in wonderful hands and everyone with spare time will be checking in on him, I just don't want to leave him. I think this is the longest time in our 3 1/2 year battle I will not see him. Enough boo-hooing, I will have fun, try to rest, (botox these wrinkles out before I come home, right...)put on another 10 lbs compared to all the pasta and carbs I am making Bo and let Addi ride Papa Cow's, Cows and Horses.
Everyone have a wonderful Thanksgiving and if you are local to us, please check on Bo. We are hoping we can get up to Duke soon for chemo, we just need to fatten him up some more.
Love to All
Christi, Bo and Addi

Monday, November 16, 2009

Hello to All - Just a quick update and hopefully a few entertaining pictures. We met with Bo's nurses twice last week and they were incredible. They are ready for a plan of attack to help Bo in any way he sees fit. Right now we are just struggling with getting Bo to "see fit". He has been able to keep his food down and the pain managed, now to get him out of bed, showered and eating consistently...Now is when I miss those "mean" ICU nurses and the physical therapy. Me fussing at him has become white noise. So anyone that would like to take on the challenge I am more than willing to make this a relay.
With that being said, Addi is still the medicine we all need. She had a couple birthday parties this weekend (and missed another and the Panthers game, go Panthers) But well worth it, you can see from the pictures attached.
Love to all and we hope to see you soon
Christi, Bo and Addi

Wednesday, November 11, 2009

Hello to All - Just a quick update. We did make it up to Duke yesterday, barely. It was decided Bo wasn't feeling well enough to start any new chemo. So our plan for attack right now is to focus on his nausea and strength. They would like a local nurse to visit him at the house more frequently and to keep better tabs on him. Hopefully this will start soon, the sooner she comes the better we can adjust his meds or change them to help him feel better and actually keep some food in his system. Depending on how quickly we can handle this, then we go from there.
Many of you ask how you can help. Just be there for Bo. It is quite lonely feeling sick all the time. He cannot answer his phone all the time, but he does a great job responding back to emails. I know he would love to hear from everyone to help pass the time until he feels better. Also mark your calendars for February 27, 2010 for another year of Beating the Odds at Raceworld USA in Cornelius, NC. We are looking for silent auction items, sponsors and helpers to sell tickets!
Love to All
Christi, Bo and Addi

Monday, November 09, 2009

Hello to All - Oh I so wished I could tell you all that Bo was doing better (since I did say no post means no news is good news, but this time we are stable) He still isn't eating very much and is extremely weak. We keep trying, so we try some more.
With that being said, we are heading up to Duke tomorrow. After all the tests ran when Bo was in the hospital they do feel like a change is necessary in Bo's treatment plan. There is a slight change in his liver with the cancer, no where near where it was in July when they discovered it, but enough to warrant a different chemo. We have all decided this might be the best anyway, since we are unsure of what is making Bo sick, maybe the Altima maybe not, but we will do whatever we can to make him feel better. I just pray and pray that Bo will find the strength to travel to Duke tomorrow so the doctor can help him feel better. When you are feeling bad I am sure that last thing you want to do is drive and get chemo...
Bo's doctors have been amazing again and checking on us and trying to make sure Bo knows they want to exhaust every option out there for him and try to discover what is causing him not to feel well, I pray we can do it soon. Chicken broth can only get you along for so long.
I will let you know if we travel tomorrow. Please make sure to tell your family how much you love them and say a quick prayer tonight for everyone's health and happiness. We will find a way through this, we are just riding the roller coaster.
Love to All
Christi, Bo and Addi

Tuesday, November 03, 2009

No Duke today, Bo is resting and trying to feel better. J - I will check with doctors about his immune levels. They have been watching, but one more test cannot hurt right?
Here a some Halloween Pictures of our Alice and some friends trick or treating at the office...

Monday, November 02, 2009

So Sorry this weekend has been a blur and well, the blog got left in the dust. Bo got the okay to come home from the hospital on Friday. So if you were on I-85, that was me leaving you in the dust...I did set cruise control and tried to stay only 6 over....hehehe
With that being said, Bo's MRI Brain scan came back the same...he still has those 2 previous spots and they remain unchanged, so that is good news. Bad news is we still do not know what the problem is. They released Bo with him feeling a little better, but not himself. (I think he decided he had enough and wanted to try and make trick or treating.)
He is home, still in bed not feeling well, but eating a little and getting more fluids in him. I think the plan right now is to go back up tomorrow, hopefully, talk with Dr. Crawford and keep trying to figure out what might be the problem. I have contacted Dr. Palmer already and he had some tests ran while Bo was in the hospital and Bo's transplant meds appear to be fine, so hopefully they are not causing the problem, but maybe. He is willing to try anything, tweak a little, and see if that will help.
Thanks for the prayers and I will get pictures of Addi up soon, aka Alice in Wonderland and let you know when the next appointment will be and what we will do from there.
Thanks for all the love, support and patience.
Love to all
Christi, Bo - in bed not feeling well and Addi, bouncing all the walls with candy - we limit to one a day, but I think she stashed some somewhere in the house because her energy is 10 fold - that or I am getting older (never) Or maybe because Christmas is everywhere!

Wednesday, October 28, 2009

Hello to All - Today was fairly uneventful. More fluids, more tests and tonight they took Bo for a Brain MRI. Bo spent most of the day with his sister Caroline and trying to keep the doctors and nurses from coming in so he can get some rest. They want to run their tests, figure out what the problem is and kick him out, he just wants to feel better without being poked 500 meet in the middle, is that possible?
We will get some results hopefully tomorrow and maybe find a solution. Please keep praying that Bo will find a way to keep some food in his stomach and that nothing new or old shows up on the Brain MRI.
Love to All
Christi, Bo and Addi
See I told you it isn't good when we post frequently...

Tuesday, October 27, 2009

Hello again - so quickly I know. Well today didn't go as uneventful as we wanted. Bo was admitted into the hospital today to hopefully just treat dehydration and nausea. They immediately hooked him up to an IV at the clinics and then moved him to the hospital. They are only expecting him to be there for a couple days. They just really want to help him get over this hump of not feeling good.
With that being said, they couldn't get an IV in him yesterday to run the CT with contrast, they just performed a CT. From what they can tell, they do not feel that the cancer has changed. Once they pump him up with fluids, they will try to run the test again with contrast and make sure. They are also going to run a Brain MRI and check the infamous "spots" on his brain.
We all are hoping and pushing towards that Bo just picked up with flu and hasn't been able to overcome it on his own. So let's keep praying for that and not anything any more exciting. I guess it is all in perspective when you are praying for a flu bug...
Love to All
Christi, Bo and Addi

Monday, October 26, 2009

Hello to All - Christi here - Bo and I made a pack that we would update once a week, even if we have nothing to say, which for anyone that knows us, having nothing to say really never happens.
Today we head up to Duke for the infamous scans. (We meet with Dr. Crawford first thing tomorrow morning for the results - BIG Prayers tonight please) With that being said, I am nervous. Bo has been under the weather for a week now. He hasn't been able to keep anything down and that makes me nervous, because with cancer, losing weight is never a good option. It is possible, Bo got one of the many types of "flu" going around, but it is hard not to "go there" whenever he is feeling bad. So I am heading off the doctors and sending an email up ahead of time to let them know we are having stomach issues and we are not leaving until we find out what to do. Or at least get some medicine to help for the time being. So I worry, I am beginning to get more wrinkles than I can count!
Addi and I have been doing well staying away from the flu. The poor girl had her 4 year old check up last week and that made her out of sorts, but she is better and ready to trick or treat. I promise pictures of that soon.
Love to all and we should update later this week with the results.
Christi, Bo and Addi

Friday, October 16, 2009

Just an FYI - This is from Bo!

I am really sorry to everyone that it has taken us so long to update the blog, plus the fact that Christi is always doing it and I have been silent. It was a real tough road back for me from the transplant. I went through a "foggy" period on a lot of drugs, and then there was the reinsertion part of getting back to work and life. I feel like I missed about a year and a half of stuff!

Christi, and I love her, has done a great job in keeping you guys up to date. As you know, I am having to do chemo again and it is really making me sick. However it is working so I can not complain too much. Work is really going well again, and I am even back traveling some with the next trip to Arizona coming up Monday.

Addi's Cure ( is doing well. Any help there is always appreciated.

The best thing I can say is that I am really trying to live life and make the most of the time I have left, however long that is. Addi and Christi are the most important things in the world to me, and it is imperative that I am with them. I also want to see all my friends and business associates too, so it is a hard juggling match. If I have not seen you lately, come see me!

Don't forget to hit me up on facebook as well. Bo Johnson is the name.

Thank you for all the support and prayers, they really work!

Tuesday, September 29, 2009

So Sorry - Where in the world have we been...So much going on, so much has happened, but do know that no news means good news. First we hit the zoo and then the beach. Addi is so Bo. "Look Addi there is a monkey." "Great Mom, what's next." I had to make her and Bo watch the monkey for a minute and then she realized they swung from branch to branch, sort of cool to watch.
Then I am happy to say a couple Saturdays ago we had a little get together of our "transplant friends." I always forget that Bo doesn't know everyone as well as I do, due to the fact he was unconscious, but he is getting to know them. Joe and Marilyn, Bob, Brenda and Don and Sue. (Debbie was partying in Vegas, just kidding, she was in Vegas though) We had a great time and I think Bo and Don felt more normal sharing their frustrations with one another as this recovery process continues.
I am so Sad to say the next day Bo's Papa, Great Papa to Addi, passed away. He had been diagnosed with Colon Cancer, survived the surgery, thrived in the hospital, was released to the rehab center and then one night took a bad turn and passed away, Sept 20th around 8:00. He was an incredible man that lived and lived to his liking. We were truly blessed to know him. Bo loved him like no other and is dealing with his loss. Papa has always been there and Bo with a heavy heart feels this loss. We both believe though that Papa continued on for many years without his love, Rosie, it is time for them to be together. He will dearly missed.
Yesterday we visited Duke for a marathon of a day. First labs, then bronch (they took some biopsys and we will get those results in a week or so, keep your fingers crossed they didn't find any fungus or germs.) Then to Hematology, Blood Doctor, she recommended Bo we a compression sock in the leg that has a clot. At first Bo hated the idea, now he is just starting a new trend. Finally a visit with Susan to look at the labs and Bo is holding steady and strong, so off to more chemo. He is doing well today, just tired, but aren't we all.
We visit Duke next October 15 for transplant doctor and vocal cords again. But before that DISNEY here we COME!
Love to all
Christi, Bo and Addi

Wednesday, September 02, 2009

Hello again - Not to much to report right now. Bo has the infamous head cold that is going around so he is pretty pitiful, I am freaked out anytime he gets anything respiratory. I just try to remind myself that he will get sick sometimes and we just need to watch the "color" of things. Maybe that is what is really freaking my out.
With that said, how about a few Addi stories. Today I told Addi that we needed to clean the house and that we were going to open the windows(by the way today was BEAUTIFUL.)
"Why are we opening the windows Mommy?"
"Well so the germs will fly outside of the house and hopefully that will help make Daddy feel better."
"But Mommy, what if the germs fly to heaven and make God sick."
"Well Addi, hmm, God knows to wash his hands a lot."
What do you say to that other than take the opportunity to drill into her head to wash her hands, with soap. School is starting soon you know.
Another Addi story is that fact she no longer says, "I love you." I know heartbreaking isn't it. But get this, she now says, "I promise." It almost makes it okay. When did she become a "cute" teenager. I thought I would have a couple more years before she dropped the "I love you". I guess we better watch out because in a month she will be Four.
Love to All or Addi says, I promise
Christi, Bo and Addi

Saturday, August 22, 2009

Hello to All - We hope you are enjoying your weekend. I think we plan on resting and relaxing as much as possible with a 3 year old...I do believe our car is on autopilot with the drive to Duke. We ended up going up the night before and we had Addi with us this time. We pretty much let her choose if she wants to come with us our not, and this time she did, well at least after she woke up from her nap and changed her mind.
Enough rambling. They perform an ultrasound on Bo's neck and both legs. This took about 1.5 hours to do, needless to say Addi and I went and played at the children's hospital. Visiting there helps to put everything into perspective and we are so blessed to have a healthy child.
The results came back that Bo does have blood clots. This isn't an uncommon problem when people are going through chemo, it just stinks to add another thing on Bo's plate. We never knew how fortunate we were with Bo cycle of chemos before, he didn't really have any of these complications, but with the transplant we are hitting a few more bumps. So Bo will now take twice a day injections of his medicine to thin his blood. At a minimum he will do this probably for 6 months, potentially for life. We are setting up an appointment with the coagulation doctors, chalk up another department we are visiting on the World O Bo and they will run the ship with these medicines. So this weekend we are resting, Bo is feeling a little yuck from chemo, so I might take Addi out of the house to swim, but always stay close by in case we are needed.
Thanks for the prayers and hopefully soon we will get all this "fun" under control. We are still holding onto the good news that he cancer is considerably less and we hope and pray that it will continue to do so.
Love to All
Christi, Bo and Addi
PS I like to think that the blood is clotting because it is carrying away the cancer and disposing properly...

Thursday, August 20, 2009

Seriously, here comes the next wave. We received a call last night from Susan, Dr. Crawford's Assistant and I believe the first words out of my mouth was, "Susan when your name popped up on the phone, I just threw up in my mouth. Can't we get 24 hours of pure happiness." With that being said, she didn't like that seeing her name made us feel that way, but immediately I thought, "It can't be that bad, Dr. Crawford would call us personally if it was."
Enough jabbering, they called to let us know that the radiology report (this is why we wait for the report before we get to excited. Someone remind us next time in case we forget.) did see the cancer regressing in the liver and the bones. (I do think I failed to mention that when we did chemo we did an intravenous drug to help stimulate bone growth and help in the healing and fighting cancer there as well) But there are two spots they believe the be blood clots that they would like to ultrasound. There is a chance these will turn out to be nothing, but on the flip side if they are, then we need to take care of asap. One is in his lung and the more concerning one is in his interior jugular. Scary, we know where the jugular leads and this is the one they want to ultrasound immediately. That location isn't common, and probably not good. All this stems down to another trip to Duke tomorrow for the ultrasound and then determining our treatment plan if it turns out to be something we need to take care of immediately. They are unsure what might of caused these, but again our doctors are great and Dr. Crawford, Susan and Dr. Palmer are working together for the best course of treatment and getting us in as quickly as possible.
Thank for all the support and never a dull moment with Bo.
Love to All
Christi, Bo and Addi

Tuesday, August 18, 2009

Hello to All - Finally a point for Team BO! Bo had a scan today that showed the chemo, Altima, is shrinking the tumors on his liver. The doctors also believe that his bones are trying to heal themselves as well. So today we did another round of chemo and added an additional medicine to help with his bone growth. The bone growth might make Bo feel achy, but will hopefully help with the healing. So yeah, yeah, yeah.
Dr. Crawford did let us know that Altima has just been approved as a maintenance drug and treatment plan. What that means for us is that we will not count this chemo in cycles or how many times we will do it. There will be no number limit, we will stop when this is too much for Bo to handle or when/dare I say if the cancer comes back. Then obviously it isn't working anymore. This type of chemo is different than the "typical" chemos people take. Bo should keep his hair and hopefully as the cancer keeps leaving his body he will get stronger and so therefore there will be less and less side effects.
We are being cautiously optimistic, taking today to be happy. But we do realize reality. But one day daring to "Dream Big" hopefully won't hurt.
Love to All
Christi, Bo and Sweet Addi
PS I made the parental decision to make sure Addi's first car is an Altima!

Monday, August 17, 2009

Okay we sorry. Bo has been doing so well, one full week at work with just a late start, I was afraid to post anything to jinx him. With that being said, I thought it would be a grand ol' time to get the stomach flu. For some reason I always get these things anymore, I wonder if it pertains to the stress in my life. I always to try "act" stress free, I guess my immune system knows otherwise. At least it was just a 24 hour sickness with another 48 being puny (another is that a word)
As I mentioned Bo is doing well, so we are hopefully optimistic that tomorrow will bring good news. We start off bright and early with scans and then the doctor around lunchtime and hopefully chemo. Sad when you are hoping for chemo, but it just might mean it is working. We will post when we hear anything. Thanks for the thoughts and prayers.
Love to All
Christi, Bo and Addi
PS - I have been stressing to Bo lately that we are not going to let the doctors convince us he is sick because of what his scans might say. He is feeling better and that is what matters most. Positive thinking will triumph, with a few prayers.

Wednesday, July 29, 2009

So sorry to be gone for so long. Lots to do and lots has been happening...Where to start. Bo did well with his first round of chemo. If you remember there are 3 weeks between each session. So right before his second round we decided to go see my family in Kansas. Note that this was planned a while ago, but we had things change medically so I never purchased the tickets until it was a for sure go ahead. Well we just decided to go for it.
With that said, the 5 Morgan kids (and spouses) planned a surprise wedding anniversary party for our parents 40th. I have to say we were so proud of ourselves and our parents friends for keeping it a secret. We had to tell my dad "something" was planned, but we kept our mom in the dark and boy was she surprised! A big thank you to all the family and friends that showed up to help us celebrate, it will be one of those for the memories.
I did get to see a few friends while back home, unfortunately under unfortunate circumstances. A friend of mine, Jessica, her mom Joy passed away after battling cancer for 4 years. She was an amazing woman that knew the secret on how to live life, always to the fullest. She will be missed. But her passing allowed me to see some of the sweetest ladies I know. I do think they all shrunk, don't get me wrong ladies, you were not the tallest in school, but putting you all together with me, makes Christi one big giant. Anyway, it was good to see everyone, we need to get on planning a trip with all the ladies together.
Also in the news, tomorrow I will be an aunt again, Brady Morgan should be born via c-section, so prayers out to Curtis, Erin and Ryan.
Back to Bo's health, we made it back on Sunday for our second round of chemo on Monday. Bo appears to be doing well, it typically takes a couple days for the chemo to hit, but for now, we are just fatigued. Let's hope and pray it stays that way. We will visit with Dr. Crawford on August 18th for scans and treatment plan, so mark your calendars that will be a big day. Until then, we play and we play hard.
Love to All
Christi, Bo and Addi

Friday, July 10, 2009

Just a quick update to say thank you to everyone for their thoughts and well wishes. Bo is a little fatigued with the chemo, but they do say the rest of the side effects might come about 5-7 days after, so the first of next week. We hope to be out and about in a short while.
See you all soon
Love to All
Bo, Christi and Addi

Wednesday, July 08, 2009

Hello to All and sorry for the delay in posting. Our journey has taken, yet another path. As many of you know, Bo has not been feeling well. He has been battling gout-like symptoms and not feeling like himself. Last week we finally made it up to Duke to talk with Dr. Palmer, our transplant doctor and look at some of our meds. He didn't seem overly surprised about Bo's "gout" it appears that the anti rejection meds have been known to cause problems. He has increased some of his other meds to hopefully elevate the swelling and pain. In the meantime we ran extensive tests on his joints, all came back clear. And we also performed a CT scan to check Bo's lungs. Bo's lungs are looking good, but this is where our path changed. When you perform the CT scan it is upper abdominal that shows all organs above the waist. Here comes the tough part, the doctors have found spots on Bo's liver and spine (bones)
Deep breath everyone, In and and out...
It appears Bo has cancer on his liver and spine. At this time we are unsure if it the same cancer mutating and spreading or a different cancer due to the immune suppressants. Today we went up to have a PET scan and brain MRI. It appears to confirm what they "accidentally" found on the CT that there is cancer (nothing will be 100% until the biopsy is done, but we are pretty confidant this is cancer) Good news, he appears to only have it on his liver and spine. Since it was found accidentally they were afraid it might be elsewhere. Another bit of good news is that the spot on the brain appears unchanged...we are hoping that means no cancer there just some abnormality from everything he went through with the transplant.
I know this is a lot to swallow and trust me there are not 3 people (Bo, Addi and myself - along with family) that did not want to ever share this news with you, nor so quickly, but do know we are strong and fighting. After we spoke with the doctors they immediately started Bo on chemo, today to be exact. He is trying the last chemo he took that he responded to positively before transplant. We are optimistic that he will react in the same way. We will do this again in 3 weeks and then at 6 weeks perform another CT scan to see how he is reacting. While this continues Dr. Crawford is setting up for a biopsy and getting him established with Dr. Potti in charge of Duke's Genomic project. (I could write a novel on this, but in a nutshell they take the biopsy, study it and create a treatment plan specific to your DNA and Cancer. This takes a couple weeks to do, so in the meantime chemo)
I know this is a complete and utter shock to all. We have had a couple days to get over the initial shock, and I am always happier with a plan. As you can see Dr. Crawford and Susan are on it. We have options. As I have told many of you, "we are not "there'."
Please understand we do not have all the answers, more tests will be done and we will continue to work with our transplant doctor and oncologist together. We have been riding waves of emotions and are truly sorry to all that support and love us that this cannot ever be simple. But do know, we want you to fight with us, pray with us, hope with us and believe that We will all overcome.
Love to All
Christi, Bo and Addi
PS We would call everyone of you individually, but right now we are just holding Addi dear to us and enjoying life...

Sunday, June 28, 2009

I really need to double check and see if our posts, post. Anyway, we didn't end up making it to Duke last Thursday. Bo wasn't feelig well and we reschedule until this Thursday. Dr. Crawford and Susan are already starting to try and help figure out what might be the problem and hopefully the rheumatologist will be able to fit us in as well. Thanks for the prayers, Bo isn't feeling to well and can really use them right now.
Love to All
Bo, Christi and Addi
PS - I am not sure quite sure what it happening with posting, some have said something weird is popping up. Please let me know what it is and I will check it out.

Tuesday, June 23, 2009

For some reason our Father's Day post didn't post so we are resending with a little more information. Bo is still have a harder time right now. The gout or whatever it is, has appeared to move out of his elbow and ankles, but he still have spots where he is uncomfortable. Right now one of his calves are hurting. With all the uncomfortableness it has made it near impossible for Bo to exercise and do the necessary physical elements needed to keep his new lungs in shape. So of course I worry. We visit the doctors on Thursday, so I pray they can help with his pain and move him forward. I pray this is an easier fix and they won't want to admit his to run more tests. We will let you know as soon as we hear anything. Now to what we wrote earlier...

Hello to All! Happy Father's Day! Wow this one is much different than last year. Amazing how far you can come in a year. I just pray for many many more. I knew when I married Bo (one of the many requirements to meet) that he would be a wonderful father. He would probably spoil her rotten, he does, but what little girl doesn't want her Daddy to spoil her rotten. I think you get parenting right though when you child crawls into bed with you and says "Family time is her favorite time in bed" Or "Group Hug" "family hug". We are off to visit the Dad that we can today. First GrandDaddy Berry in Hendersonville with Great it has been a while since we have been able to travel there. Then back home to see Papa with a little cook out, hopefully Grams will not do to much. Hopefully along with way we will get to talk with Papa Cow in Kansas - oh how we miss him! So Happy Father's Day to All, and I hope and pray everyone is as lucky as I am to be surrounded by such wonderful men!
Love to All
Christi, Bo and Addi

Monday, June 15, 2009

Hello to All - Another weekend come and gone. We finally stressed Bo's discomfort and the doctors are trying to work with his meds to help the pain. I do have to say after talking with some gout sufferers, this isn't for the faint heart and Bo managed with the best of them. Now let's just pray this isn't something reoccurring. We have spent the last weekend at one pool or another. I really need to borrow Bo's camera and take some pictures, or I could down load the old ones I have on mine, but our little girl is slowly, but surely becoming a water bug. She is swimming right and left. A little scary that she is becoming so fearless, but her overprotective mother is right there with one eye always on her.
Nothing to new to report here busy wise or health wise. I think we are back to appreciating stable.
Love to All
Christi, Bo and Addi
I do want to send a special prayer request out to an outstanding family in Lawrence. Dr. Frederick, an icon in Lawrence, passed away this past week after having a bicycle accident. He was a man with great integrity, humor and generosity. (He helped me many times at KU, even getting my first "job" there) He will be greatly missed. Please pray for his family. Losing someone so unexpectedly is terrible. I cannot image that emotions that they are trying to process. I feel like the rest of us are sad, but are blessed because Dr. Frederick shines through each of his sons. Each one of them are the walking examples of what he was about, how he treated everyone, and how we should lead our lives. If you had the pleasure of knowing him or know anyone in his family, you are truly a blessed person. Our town is forever changed.

Monday, June 08, 2009

Hello to All - Thank God the sun is shining! It isn't suppose to for the rest of the week, but we have had 2 1/2 days of it. I know be quiet from all you in Kansas, but your rain and storms will be here soon enough. Clint I hope you are alright in CO, as Mom would say, "Go to the basement"
Things here have been alright. Bo has been having issues with his feet/ankles swelling. He went to Duke on Tuesday and they ran some tests. Bo has another part of the hospital looking at his case, rheumatology (spelling). It sounds like, smelt like, looked like gout, but the test says it isn't gout. Maybe pseudogout, but guess what, they want to wait and see what happens. So we are planned to go up June 25th, maybe sooner if the brain trust of Duke gets any hints on what is happening. Seriously is anyone keeping tabs: oncology (Lung), surgery of transplant and all the fields Bo visited from his complications (ICU, ENT, vocal cords, respiratory, GI for feeding tube and wrap procedure, physical therapy for body and hand) Radiology/Oncology Specialist, Brain Surgeon, Brain Oncology, Rheumotology, I know I missed some...can you imagine the group that gets together to talk about him. Who is in charge? I guess Dr. Crawford, he won the Bo (or more dreaded Christi) lottery first. No complaints, but I am beginning to think that Bo to many times previously in his life said he disliked Duke (he is a UNC fan) so now we are having to love all parts of DUKE. The doctors love it when I play doctor and try to guess what the problem is, so if you all have any ideas throw it at me, I am not afraid to throw anything at them. (someone mentioned with the heat wave dehydration would have some effects like gout on him....hmmmm)
Love to All
Christi, Bo and Addi
A huge congrats to Jerrold for having a clear scan!
PS I almost forgot. At church on Sunday Addi was with me quietly working on a book that has puzzles inside it. It was new so she had to tear the puzzle pieces apart. As she was doing this, (proves a child is always listening) the readings were happening. The second story about about someone being a terror. Addi not too quietly looks a me and says, "I am terror." The woman beside us busted out laughing. To Addi's defense I think she meant she was tearing the puzzle pieces apart. But, well on some days, she hit the nail on the head. We love our little Terror/Tearer...

Monday, June 01, 2009

Hello to all - I hope you enjoyed your weekend. Our weather here is finally without rain and well beautiful. Addi had her first dance recital...she did a great job and performed on a huge stage without freezing up. Her Mom and Dad couldn't be more proud. I will post pictures soon. Then she decided to get sick. Strep is running amuck here, so let's hope we can keep Bo safe from it.
With that being said. This year we are celebrating quietly his 3 years of cancer and 1 - year post double lung transplant. Has it already been a year? There have certainly been some bumps in the road, but as I always say, we are still traveling, together, down our road. Thank you all for your love and support. Also a huge thanks to your prayers, we truly would not be here without them. Tonight please say prayer to the families that lost their loved ones that provided Bo with his lungs, may they be in our prayers and thoughts always.
Love to All
Christi, Bo and Addi

Sunday, May 24, 2009

Thank You, Thank You, Thank You. I am going to take our news in a positive way and keep partying it up this summer. We just spoke with our doctors and they have decided to wait and do another MRI at the end of the summer. Dr. Crawford spoke with Dr. Friedman (the surgeon) and Dr. Friedman isn't convinced this is cancer. He said the "spot" is so small he would like to wait and give it another two months to see if there is any change to help their determination of what this is. It would be a risky procedure and before they put Bo through it, and with everything else he has gone through, they would like to wait.
They did apologize for flip flopping, but I assured them that if they are putting off brain surgery, I am okay with that. So we wait some more and pray, pray, pray that the "spot" leaves. The way I figure all our prayers have delayed this surgery, so a little more time and this will go away on it's own. Somehow I need to try and find a way to get Bo to meditate and visualize this leaving...
Love to All - Enjoy your weekend
Christi, Bo and Addi
PS - please say a few prayers for our friend Mindy's Dad. He was recently diagnosed with colon cancer and they are going through the beginning phases of how to deal with hearing the "cancer" word. I do hope they will find their strength quickly, find the best method to fight this, and realize cancer will not get them down. If you remember my Dad was diagnosed with color cancer 4 months after Bo was diagnosed with lung cancer, no one is slowing him down! Love you all...

Tuesday, May 19, 2009

Just a quick note to let you know that we do not have a date yet. Dr. Friedman is out of town until tomorrow and he is going to talk with Dr. Crawford before we schedule. We "should" hear by the end of the week.
We will keep you posted.
Love to All
Christi, Bo and Addi

Friday, May 15, 2009

Hello to All - I hope you are enjoying the beginnings of summer before things get crazy hot. Well things never get to crazy hot in NC, some days but in general it is all good.
Sorry it has taken so long to post, but we just heard back from the doctors this week and needless to say we needed a little time to process. (plus most our family is on a trip to the Dominican that our doctors wouldn't let us go on) It looks like Bo will be having Brain Surgery this summer. We haven't set the date yet, we are still waiting to hear. Bo is requesting June, late June, but we are unsure if time is of the essence or what. It is our understanding that our team of doctors got together to discuss the "spot" and determined the only real way to figure out what this is, is surgery. All roads would end this way, so I guess let's skip everything else and just "Get er done." (that was for Curtis) So you see now why we haven't phoned down there and mentioned over the phone, let's give them a little more time to enjoy themselves.
The procedure will be done a Duke, I guess this is the only way we got to be on every floor of the hospital there, lucky us. Dr. Freidman, who performed Ted Kennedy's procedure has signed up to take Bo (and myself) on. Seriously Bo is more agreeable (go figure) than I am most of the time. (He is sedated, (I might take that route this time) I am too nosey, oh well. We are optimistic that this will fix the problem and then we can go on living our lives. Disney here we come!
We will let you know when our "procedure" will be performed. Let's pray Bo can give us an uneventful one. I know I am praying for that. I also pray that Addi will not spend the summer in a hotel again. She is such a trooper, but you always want the best for them. She really will start to think the summer house is our summer house before long.
Love to All
Christi, Bo and Addi

Friday, May 08, 2009

Finally some pictures...Easter and whatever (she loves corn)...

Love to All

Christi, Bo and Addi

Tuesday, May 05, 2009

Hello to all - We make it back from another day at Duke. (I hate long posts, love to talk, but hate long posts) We have a few things to figure out and we are trusting the doctors to make the right decisions. One of the "spots" is still suspicious. And with that I mean, they think it might be growing, they are unsure. You ask how can one of the top hospitals in the country but unsure...I know. Every time you get a scan the scanner gets different pictures from the time before. The first time, they saw the spot, but couldn't read it very well. The second time they felt like they got a better picture and the brain specialist wanted to investigate, but our oncologist (with the year Bo has had) felt comfortable waiting and seeing if it will leave on its own or not change. So they agreed to wait, as long as nothing changed. Well without the specialist looking at it, just the radiology department (which could be someone different every time) felt that it might have grown.
So you ask now what...first we pray then we differ to the doctors to make one of three possible choices. 1st decide isn't nothing (of course I am voting for that one) 2nd - determine radiation might work and go that route (hmmmm Bo losing more brain cells, I always said I could love him no matter what - unless he is stupid, dumb I cannot handle) or 3rd surgery. If brain surgery can be minor, this would be minor and would result in another hospital stay. This could be the only way we will definitely know what this "spot" is. So with all that being said, we have made no decisions on how to proceed on preventing BAC from coming back (we will handle this once the "spot" is taken care of...if possible)
I think I will write a new "Spot" Book. See Spot Run. See Spot Jump. See Spot Disappear. Goodbye Spot. I think today was a long day...
Love to All
Christi, Bo and Addi
PS - We have some big days to celebrate this year...just a reminder -
May 27th - 1st Transplant - I would forget this one altogether if I could
June 1st - 2nd Transplant 2008 - Bo diagnosed with Lung Cancer 2006
June 6, 2006 - 06/06/06 - Dr. Crawford and Susan confirmed cancer but became our angels (I knew on this day the world ended, but one something ends a new life begins and for that I am grateful, we found new friends, fell in love with old friends again and the power of friendship and prayers)

Monday, May 04, 2009

I am sure most of you in Kansas saw this article and are aware...but please pray for our dear friends, Red Dog and Beverly. They are fighting as I expected them to do and raising awareness about Prostrate Cancer. If you are in the Lawrence area this summer you should go and work out. I helped for many years and miss it so much now (so does my hips!)
Love to All
Christi, Bo and Addi

Sunday, May 03, 2009

Another fabulous weekend down. The weather held off most of the weekend and we just hung out as a family. Some cleaning, getting some stuff done around the house, a lot of dress up and cleaning toys up and some Friday Night Movie Night.
This week we are off the Duke on Tuesday for another Brain MRI, this should hopefully be out last one as long for a while, as long as nothing changes. (We are praying for stable, but we will take gone as well) We will hopefully get to talk about future treatment plans for Bo and keeping the cancer away. All of that has been on hold waiting to get Bo back and fully functioning and also making sure there was nothing going on in that head of his...hahaha - I might need to check and make sure there is something in there. Funny I know.... The future treatment plan is exciting, but kind of like waiting for the transplant call. I am assuming this plan will go smoother and easier than transplant, but with Bo you never know. We are unsure of what path to take, how Bo will react to medicines or chemo if we go that route. I am sort of deferring to the doctors and dragging my feet. Lord knows I do not want to cancer to come back, but it feels like yesterday that I got to get me Bo back. Selfishly I want him for a little longer, but I would never chance that cancer coming back. So off we go to talk with the doctors.
Thanks for you love and support and I promise I will post of pictures of Addi soon - Easter - dress up and everything else she does.
Love to All
Christi, Bo and Addi
PS - if you are wondering what happened to Bo, "crack-book" I mean facebook...

Monday, April 27, 2009

We had another great weekend. This weekend we didn't plan to much, we celebrated our 5th anniversary, remember we kept it easy for Bo 04-24-04...We took Addi to the movies to see "Earth". She did better this time, but no shock to anyone, our child talks a lot. I forgot suckers, that I normally bring to help keep her quite. She loved the ducks trying to fly and over course the elephants. After the movie, she showed her Mommy's talent of the crane toy games...I love those and she won her first toy, Dopey.
Saturday Bo worked out with the trainer and then we went out of the boat. Addi loves to go fast and giggles as the wind blows in her ears. The water is still too cold. The kid also loves to fish. We lost our first fished rod earlier in the week, it is at the bottom of the lake, but after many tears and begging the fishys to bring it back, Mommy was back a Target for another one. We are back in the fishing world, Mommy even got her fishing license. So we will Bo be sitting at the end of the dock.
Sunday was church and donuts. Then back out on the boat for just a little bit. Rest and then I drug Bo to see Legally Blonde the play. It was cute, but Bo said he paid his dues for our anniversary.
Love to All
Christi, Bo and Addi
PS - We see Dr. Crawford and Susan on May 5th for our next and hopefully last brain MRI, at least for a while.

Friday, April 24, 2009

Hello to All - Believe it or not, Bo and I have made it another year. 5 years married. Another small miracle for us to add to our list of blessings. What an amazing 5 years it has been. As in stride with being parents we spent the evening taking Addi to see, Earth, which was good, (thankfully no animals had dinner on the screen - not quite ready to explain) Addi did much better making it through the movie, it helped that she had two laps to jump on, a huge bag of popcorn, and some Coke. I know not good, but her juice went way to fast for the popcorn.
Addi news, we are now proud parent's of 6 caterpillars. Let's hope they do better than the fish. I gave up on them this past summer for obvious reasons and well, one straight jumped out of the tank. I can certainly take a hint. She never ceases to amaze me with her sassiness (is that a word), but the girl has some spunk. She is getting quite funny with it. At the moment I am to tried to think of any, so hopefully tomorrow morning I can get some pictures up and some new stories.
Love to All
Christi, Bo and Addi
Also we are still tallying the numbers of from last weekend, but right now we have raised about $12,000 to match the $12,000 that our friends donated through Eric Thomes. It looks like Duke will be getting close to $25,000 from us. Yeah....a big thank you to Dr. Crawford and Susan for making another appearance. I tell you they are awesome and were so happy to see how much better Bo is progressing since we tweaked his meds some. This should be one great summer!
PS - Sassiness is not a word, but I left it...

Sunday, April 19, 2009

Well - we had another wonderful event. Thank you to everyone that attended what a fabulous turnout and a wonderful time. If you have pictures, send some my way and we will use the again for next year's slide show. A huge that you to the helpers with out you this would be so much harder. My neighbor Michelle and her husband helped a ton, it truly wouldn't happen with out them. Phil great job with the live auction, I am just glad a Carolina fan walked away with the basketball. I dare might say we have found out event...I think you gamblers out there are a little surprising. And for that missed the 3 cute young men at the end of the craps table, that was Bo's Papa, Dad and Uncle Mutt. I met them when they came in and then I knew whenever I needed them again they would be causing a scene on the table.
I will post pictures soon!
Love to All
Christi, Bo and Addi
PS - For those that asked our live music was JT from Raleigh, if you want his info. I can get it to you. Thanks JT, you were awesome, of course!

Saturday, April 11, 2009

Hello to All - Life is good right now. I am always a little afraid to say that, but day by day and today was good. We had a little Easter Brunch with Grams and Papa and then some egg hunting, I will post pictures soon. Addi was so cute in her little dress. I do not normally put her in dresses, we never have a moment we do not have a boo-boo on our knees and pants seem to help that (she runs everywhere). But did she love to twirl today! Around and around we went. Then we decorated some eggs, went out to dinner, visited with Mr. B and Ms. Jennifer. What a good day, I am sure tomorrow will be even better.
I do have to apologize last weekend we had a wonderful "surprise" party for Bo to kick off our Addi's Cure event this upcoming weekend. Our good friend Eric helped to raise some money, just a little...over $12,000! Amazing and this is just to start things. He went to his home office and some of Bo's friendly competitors, you all are so wonderful...THANK YOU. With the economy the way it is right now, we are truly blessed that you all still support our efforts to find a cure for lung cancer. I always tell Bo that we will never stop raising money, I am not sure which dollar will save him, but we will raise that dollar and more to save him and others.
With that being said, we still have plenty of tickets left for our event "Beating the Odds" next weekend, April 18th. So if you have time to spare and money to burn, please, please come. There will be a limited number of tickets at the door, so if you want to get your ahead of time email or me or Bo. We would love to see everyone in person, play with some funny money, win a 50 inch TV, bid on some silent auction items and have fun for all. There will be some food, desserts and a cash bar as well.
Love to All
Christi, Bo and Addi
PS - Congrats to the Tarheels! I am so happy for Coach...but I do like Dicky V. picking KU as number 1 for next year!

Monday, April 06, 2009

Addi's new saying after we finish cleaning the boat, "Mom, this is the life."
Love that kid
Love to All
Christi, Bo and Addi

Saturday, April 04, 2009

Well finally the sun is back. It really came back yesterday, but I didn't want to jinx it and it looks like it will be here all day! I am even more happy to say that Bo is back on the golf course today! The first time since transplant! knowing him I am sure he will be very frustrated with his game, but I am sure there was a time he doubted he would ever be there. He head cold is finally going away, so that makes me feel better, although Addi might have it. I think she also has some allergy to something, so it might be that also. Darn those allergies.
So Addi and I are off to plant more flowers/
Love to All
Christi, Bo and Addi
PS - not trying to beat a dead horse, but we still have tickets for sale for our Addi's Cure event. we just secured our big prize - a 50in Flatscreen TV from Best Buy in Mooresville! come and play! Just email me if you need tickets...

Monday, March 30, 2009

Hello to All! The rain is finally moving out and we now get to play outside! Yeah...Addi just watched the new Barbie movie Thumbilena? (however you spell that) and now ever tulip we pass carries a fairy inside it. I feel bad for our neighbors because they have some beautiful tulips and we are always in their yard trying to see a fairy.
Another funny Addi story. Just when you think they are not paying attention...Addi and I are at church and for communion (we are catholic) they just give the little kids a blessing. We now at our house the coasters are communion and she get the be the priest (whom every time she sees him she asks me that that is God) and she pretends to get it out with a "Peace be with You" We still pray for Uncle Leon first and then everyone else. Not quite sure what Uncle Leon did, but heaven's gate it wide open for him.
Switching gears. Tickets are being sold for the Addi's Cure event. Please either email or ask whom you bought from last year. We are so excited for this year's event and getting to see our friends that we haven't really been able to spend the last year with. We certainly understand the economic times, but we do hope you all can make it. Also if you are on Facebook, look for Addi's Cure, we are now spreading the news that way as well. Please invite everyone you know!
Love to All
Christi, Bo and Addi (the priest)

Wednesday, March 25, 2009

Here is a little something that if you have time would be wonderful for Addi's Cure. Thank you so much Miss Candy, you will always have a special place in our hearts, especially Addi's!
Miss Candy is a local, fabulous, photographer that would like to honor her father with her "dream job" If you have a moment please follow the link to vote for her. If she wins she is donating the winnings of $50,000 to Addi's Cure. Below is her Posting...

Make it count
My dream assignment is celebrate my father's life. Make every day, every action count. Love, work, give, relax as though your life depends on it.
Because it does.
Today is my father's 57th birthday, but he is not here to celebrate it.
In October, he lost his five year battle with lung cancer. In the spirit of his giving nature, my dream assignment is to donate the assignment funds to Addi's Cure and then document the effects. Addi's Cure donates directly to research at Duke Medical Hospital, specifically for lung cancer, and since I am close, I would so enjoy seeing the difference, the real difference, the research is making in people's lives. My father underwent several clinical trials during his treatment. When I asked him about it, he said that someone did it for him and he got to be around longer because of it, so he wanted to do the same for someone else. I know I wouldn't see the immediate effects of the donation, but I could document the cumulative effects of donations and research to date. That all sounds so clinical, but it wouldn't when I could capture a family after good news or a patient who walks in, on his or her own feet, for a checkup years after a lung transplant or doctors who know what they're doing is changing lives. Lung cancer is comparatively underfunded and has a societal bias of patients bringing the disease on themselves.
Addi's Cure works to change both, and I, like my my father, would like to help.

Love to All
Christi, Bo and Addi

Tuesday, March 24, 2009

Sorry due to playing phone tag, we finally found out about Bo's test results. He came back pretty much negative on everyone. No rejection, No CMV and no Infection. So now we tweak more medicines. He is moving down to a lower dose on the steroids and some on the anti-rejection meds. I am not sure when we will go back for another appointment, the transplant coordinator told Bo and well Bo being Bo, he forgot. I guess when we get the paperwork we will know and make it work.
On another note, Bo mentioned that today was his best day yet, post transplant. So Yeah for that!
Love to All
Christi, Bo and Addi

Friday, March 20, 2009

Hello and sorry again...when we got back we had a nice surprise of Grandpa, Grandma, Uncle Leon and Aunt Marilyn at the front door. So we have been having so much fun, much less Addi played so hard with CJ and Hannah, she went to bed at 6:45.
The doctor visit was uneventful, Thank God. We will not have the result back from the doctors until Monday (so possibly Tuesday). We are hoping and thinking they will say everything is going well and we can keep coming off some of the medicines. Bo made it through the initial tests great, they want him to increase his cardio to make his PFT's better, so we will have to get Dave the trainer on that one. They Biopsy went well and his visit with the ENT doctors showed that his vocal cords are working well. They are not as "plump" as they would like them, but we are going to pass on surgery to make them fuller.
I will be sure to post as soon as we hear anything.
We are off the play.
Love to All
Christi, Bo and Addi

Monday, March 16, 2009

Hello to All - Busy, Busy, Busy - that is the word for this week! The rainy weekend made our house very unproductive, so now we have to have our game face on. Thursday we visit Duke for another biopsy. As scary as this is everytime, we are slowly learning to deal with them. This will be another all day visit with Bo getting his vitals checked, PFTs and bloodwork. Then we sit and wait for our turn at a bronch/biopsy. We pray that they have an uneventful day so they run somewhat close to time. We wait in recovery then off to visit with the ENT (Ear, Nose and Throat) doctor. Bo appears to be a little hoarse so they want to make sure everything his healed properly and there is no further nerve damage. After all that we visit with Dr. Palmer, discuss meds and hopefully leave. We will not get the results for a couple of days about rejection and infection.
When we get back we will hopefully beat my family that is coming to visit after visiting with my little sister in Conn. What driving they do. Addi is so excited I am not sure what she is going to do when they get her. All she talks about is painting Papa-Cow's toe nails. He sure takes one for the team. They are just doing a quick visit since they are driving all over the east coast.
With all the being said, "Beating the Odds" is in full force. Tickets are for sale! So please, please, tell all your friends and family. After the year Bo has had we would love to see everyone we know for a good time! They are $50 again with half the proceeds going to Addi's Cure. We are having this as a casino night so be ready for some Texas Hold'em, Blackjack, Roulette, and Craps. It should be one great night. I do have to admit this is coming up quickly, so if anyone has some free time, let me know. We would love the help.
Love to All
Christi, Bo and Addi

Wednesday, March 11, 2009

Hello - I hope you all are enjoying the weather we are getting right now. For those of you not in North Carolina, we are high 70's and sun. Don't worry we are about to get cold and rainy, but it sure is nice right now.
Things here are good. We are trying to enjoy the weather as much as possible with a lot of family outings. Addi is getting good at riding her bike. We are still working on the slow down, shocker that she likes to go fast. She made it about a mile the other day. Her and Daddy have been walking the dogs a lot. Which is good entertainment on our street. Bo is doing well. The weather is helping. Still tired a lot, but he is pushing through and doing things with out little girl. We might have to take the boat out and eat dinner on the lake soon.
A funny story about Addi. Whenever she is running around without her pj top on or Daddy doesn't have his top on, she thinks that is "handsome". It is cute to hear her wake up Daddy in the morning and say, "Daddy you are handsome." The she like to have no clothes on and be handsome. Unfortunately, lately there have been some shows, The Bachelor, where they are "handsome" also. But Daddy certainly is the most handsome of them all!
Crazy kid
Christi, Bo and Addi

Wednesday, March 04, 2009

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

Monday, March 02, 2009

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.

Thursday, February 26, 2009

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
Love to All
Christi, Bo and Addi

Friday, February 20, 2009

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

Monday, February 16, 2009

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 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