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 out....in 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...

31 comments:

Anonymous said...

We love you!
The Faunces

Paula Padgett said...

I'm praying for you Bo. Be strong.

Paula Padgett
(Lena's friend)

Robert J. Black said...
This comment has been removed by the author.
Anonymous said...

We love you guys so much and our thoughts are with you, since we cannot be!!

Your sister, Crystal (and family)

Robert J. Black said...

I am thinking of the 3 of you. Bo- stay strong and confident like you have always been. You are the strongest person that many of your friends and family have ever met! And you have a pretty strong side-kick there beside you too!

Keep us posted,

RB

Merritt said...

I LOVE YOU ALL VERY MUCH. And not that Dr Potti knows me, but I did work with him in Feb. at the Atlanta Lung Symposium. I am very happy to know you guys are in good hands. I love you all and I am sending hugs and prayers from Atlanta and Tampa.
MT

Lingo said...

You will overcome this...the 3 of you are so strong and with the support team behind you, there is no way you will not overcome. I'm thinking about you guys and praying for a quick process to kick that cancer's ass.
XOXO,
Tracy

Anonymous said...

We love you and are praying for you all.

Jenn in CA

Anonymous said...

Johnson family,
We will continue to pray for strength for you and knowledge for the docs. Keep the fight going and let all of the love and prayers lift you up.
Take care and let us know if we can help in anyway.
Love,
The Glidewell Family

The Wiley Clan said...

We're so very sorry to hear this news, but we know that Bo will once again come out on top! Please know we're holding you all in our hearts and prayers daily!

Jana, Isaac & Emma

Nancy said...

Hey Bo, Christi and Addi:

We are hoping and wishing only good news from here on out. Hang in there, you have so many people thinking and praying for you guys. *Hugs*

Throwing love your way from San Francisco.

Jason, Nancy and Reed

Anonymous said...

Another bump in your journey - but let this simply be a bump. Together the three of you are a strong strong team. You will fight and you will conquer! We will certainly be lifting you up in our prayers.

The Carlocks

Anonymous said...

Bo-

You are like family to me. We have known each other for a long time now. God put you on this earth to give me a hard time and keep me on my toes...of course among other things too! LOL Keep fighting the fight. There are a lot of people who need you. Marshall and I are lifting you, Christi and Addi up in our prayers. Love you man!

Alecia

TonyB said...

Hi Christi,

My Wife has BAC and we have been fighting for 4 years. carol could not have a transplant because it is multi-focal. We are just finishing her 4th cycle of chemo (1 per year!). I have been following your story for the last year and I am so sorry to hear this news but keep going and as a fellow carer I know how hard it is to keep the spirits up.
God bless you all from
Tony in Derbyshire, England

Anonymous said...

Hold each other close and know that we are holding YOU in our hearts and in our prayers always.
We love you.
The Baileys

Anonymous said...

We are all here for you with prayers,positive thoughts and much love. Please keep us posted when you can.
MitchyB

Anonymous said...

Bo and family stay strong! Bo your strength and determination have taken you so far in so many aspects of your life, keep it up. The Rice's are keeping you in our thoughts and prayers.

JR

Anonymous said...

Bo and Christi,

Although the last time we talked was actually now years ago (when we visited Lake Norman in 2005) you know that we've continued to consider you Larry's collegue and friends. We've been with you on this journey through your website and in prayer. We think of you daily. You have an amazing cirle of love surrounding you and we are just two of many who pray for you constantly.

These setbacks and bumps in the road are hard to take but you two are so strong and your bond so amazing that there is no doubt in the progress you make with every plan you undertake.

Know we are with you, praying and supporting, all the way from Omaha.

Larry and Tammy Pike.

Anonymous said...

Bo and Christi,
You are in my thoughts and prayers! Hold each other close and know that you have many people around you that love and support you!
Best Wishes!
Rachel Gates (Caroline's Friend)

Starla said...

Bo & Christie,

It is awful that people as wonderful as you and your family have to endure such a horrible illness not once but twice now. However, all of you have such an amazing strength and a multitude of people who care that I believe things will be okay again soon. I have asked all of my family and friends on Facebook to pray for you and to pass my request on to everyone they know. Carolyn has a Wish Box that she has kept your name in for a long while now so you are safe from harm. Please know that Carolyn, Amanda and I are here for all of you so don't hesitate to let us know if any of you need anything. You & your family will remain in my thoughts and prayers.

Anonymous said...

I pray for you all. Keep up the good fight. Bo is winning many rounds. I pray Bo continues to be the strong man he is and he will overcome and win this bout too.
Stu

Anonymous said...

Although a surprise to you - it was no surprise to God who knows all things.

Be assured of our prayers.

Love ya,
Miss Kim

Anonymous said...

You are in our thoughts, prayers & hearts every day. Love, Brett, Renee, Jackson & Max Purdy

Anonymous said...

Bo, Christi and Addi, You are in our daily thoughts and prayers, and we will add your names to our prayer roll, as well. Bo made it through one difficult time and we know he can make it through another!

Our Love,
Larry and Josie Mabry

Anonymous said...

I'll be praying even harder. If any family can beat this it's the three of you. Your family is amazing.

Anonymous said...

Hold on tight and know positive thoughts, prayers, and love are being sent to all three of you.

Love,
Aunt Mary and Uncle Jeff

Anonymous said...

Hey Guys,

So sorry the news was not good after I saw you at Duke last week. I know this is a tough blow, but I remember the Bo I first met that was a cheer leader for me and I hope to be a prayer warrior for you, WE will keep you in our daily thoughts for peace and comfort and to have serenity that Duke is on top of things and will get you through this. Don't let those steroids mess with your mind !! Stay Strong and trust in the master physician. He knows the plans he has for you and they are wonderful !!
Hope to see you soon
ELizabeth

Erika Moore & Mike Barnett said...

You are in our prayers, I know that Bo is a fighter and he will get through this. Stay strong and have trust in the almighy!!

John said...

OMG....we all drop to our knees and pray, and Thank God for you Christi and Addi. Bo....keep the Faith and know how many prayers are with you while the tears flow. Please God stay on the job Bo needs your healing hands. John & The Kids/Grandkids

Amanda & Robbie Fuller said...

We are praying!!!!!!!!!!!!

Anonymous said...

The Johnson family is the exception to every rule - stay strong - we are all praying for you.