The roller coaster continues

Colossus

We met with my surgeon today and received what we’re calling “qualified good news”.  First off, let me just say that my surgeon is an amazing human being.  Besides being one of the best-of-the-best surgeons, he has the perfect personality for us.  He cares deeply, but gets straight to the point and tells it like it is (no BS).   He immediately told us that my liver was NOT full of cancer and I would NOT need  major surgery on my liver.  I do have a tumor on my liver, but it is not the greatest cause for concern at the moment.  The problem now, is a tumor in a lymph node blocking my liver outflow ability.  This is very serious, but treatable.  He had already conferred with my other Emory docs and my UCLA doc, and they all agree that putting in a bile duct stent will solve the immediate issue.  This will be scheduled for  tomorrow or Friday (2/1) at Emory.  The reason we call this “qualified good news” is that we are still unsure if my doctors at the NIH will allow me back on the clinical trial for TIL therapy (a.k.a Adoptive Cell Therapy).  There are reasons for this of course, they’re not just being difficult.  The stent has a risk of infection and TIL therapy (a.k.a Adoptive Cell Therapy) will put me at even greater risk of infection so they are considering this carefully.    As a great thinker once said: “this is not ‘Nam, this is bowling, there are rules”.

lebowski

So we don’t know anything beyond this week, and we are starting to learn to live like this regardless of the news (sortof).

A prayer sent to me from another amazing person awhile back…

From Celltic Daily Prayer Book

The Boisil Compline
Boisil, Prior of Melrose Abbey, died 661 BCE

I am placing my soul and my body
in Thy safe keeping this night, O God,
in Thy safe keeping, O Jesus Christ,
in Thy safe keeping, O Spirit of perfect truth.
The Three who would defend my cause
be keeping me this night from harm.
I call on You, O God,
For You will answer me;
Give ear to me and hear my prayer.
Show the wonder of Your great love,
You who save by Your right hand
those who take refuge in You from their foes.
Keep me as a apple of Your eye;
hide me in the shadow of Your wings.

Did I just put a prayer and The Big Lebowski in the same post?… I think I just did #thatcantbegood

8 thoughts on “The roller coaster continues

  1. Well, just as the Dude abides, we all must abide. Love you guys and always praying! May God heal Kevin through NIH or whatever means He chooses for His glory! Thankful for some encouraging news!

  2. #Ithinkitsverygood. I’m glad you have a great connection with that doctor and I’m glad for the news. No need to look beyond today. Much love to you and your family~~

  3. I continue to pray for you guys… everyday… everytime I think of you guys (which is often!). One word/phrase of encouragement (I think anyway?)….
    Each and every one of us should only think of today, think of how what we do will affect others and ourselfs and if we are truly a testament for others, because each tomorrow is a gift, and like a gift it should never be expected but only accepted 🙂 Love you guys!

  4. Dear Kevin and Rachel: Your strength and courage are tremendous. I continue
    to hope and pray that all will be well.
    Lvoe, Irene

  5. Rachel and Kevin
    All I can say, that I don’t know you, but your faith and the fight that you guys put up is exceptional.
    I don’t know why you all have to go through this, but I keep you in my prayers and I know that God has his plan with all of us and we have to keep believing and put our life to his hand and fully surrender.
    I know that this fight is much more emotional and harder when you are parents of small children…
    It is very difficult to take it, but I don’t know anyone who handled situation like yours with that much faith, fight and looking for the next option and never give up.
    You both are an encouragement for all of us, even for strangers like me.
    God bless you and keep you safe.

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