Friday, February 29, 2008

Alright, Christi again and I must be the spell typos queen instead of just queen. I guess that is just a sign I need to slow down...sorry.
I thought you all needed to see the Princess in Action.

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

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

And finally this one was just cute.

See you all Saturday for our

Party in Paradise!

Wednesday, February 27, 2008

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

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

Tuesday, February 26, 2008


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

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

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

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

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

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

Wednesday, February 20, 2008

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

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

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

Tuesday, February 19, 2008

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

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

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

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

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

Take care and we will get some pictures up soon


Monday, February 18, 2008

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

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

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

Monday, February 11, 2008

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

I cannot wait to see everyone there.

Christi and Addi

Monday, February 04, 2008

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

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

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

Christi and Addi

Friday, February 01, 2008

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

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