Finally an update!

Hi Family, Friends and Followers,

First I must apologize for the long delay between posts.  Jack had hoped to update this himself and worked on it a few times, but never actually got around to writing it.  He had been busying himself with fun things like figuring out Medicaid and his treatments, and taxes, etc.  Let me tell you after radiation on the brain none of this is easy stuff.  He wears out easy, so just getting up and showering and getting dressed required a nap.  

We had been to Duke a few times, where they would say he was stable and continue with his current treatment until PD1 became available.  They had stopped clinical trials on it and had been waiting for FDA approval.  Then it was sort of approved for stage four lung and melanoma treatments in hospitals thAt had done clinical trials on it, but the catch was... Who would pay for it, who would be liable, etc. etc.  we felt caught in a whirlpool of emotions and frustrations.  Knowing that one day the current meds Jack took would stop working and he would no longer be stable.  He had started improving from getting further out from the radiation, then almost suddenly a couple weeks ago he was getting more tired by the day... And his belly was getting more and more distended and painful and any deep breaths led to acute pain on his side and occasional in his shoulder.  Everything was becoming uncomfortable. 

Jack's appointment at Duke last Friday was mixed with both good and bad news.  They ran a CT and MRI.  His tumors have grown and the one that is located outside his stomach has been pressing on his diaphragm making breathing difficult and causing radiating pain to his shoulder - it has grown to over 2cm, In addition we found out that he has peritonitis... fluid building up in his abdomen.  Both of these have caused him great discomfort.  The good news Friday was that he is scheduled to start on PD1 this Thursday!  Yay!   Then as usual, the other shoe dropped.

After we got home his discomfort from the fluid had increased and his stomach was quite distended and tight - which makes it hard to do much.  In addition we found out on Monday, that he has yet another brain lesion.  

This morning we headed back down the mountain to Duke for what we thought was radiation... But it was to get the radiation set up for later... Next week they first told us was the soonest they could fit him in.  Hmm, he is scheduled to get PD1 on Thursday, would that mess that up?  Then we asked if he could get some of the fluid removed to ease his discomfort.  

The wonderful folks here at Duke got that scheduled while we were here... And got him scheduled for radio surgery (radiation) tomorrow morning!  So it looks as though Jack is still on track for his PD1!

In the meantime, Sarah, Evan and the girls are up from Texas to visit and this is the busiest week of the year at the store... And we are having painting classes at the store!  My daughter Elise has been a trooper and I don't know where we would be without her... She has worked every night and morning at the store these last couple days while working her other jobs in between.  And today Sarah, instead of relaxing on her vacation worked the store with Lainey!  This afternoon, Jack's sister Nancy has arrived in town to help out too!  She will be at the store tomorrow.  God bless our family and friends, I don't know where we would be without them.

I will try and be more diligent in updating, I think I have finally realized Jack is just too tired and this is too taxing on him.  And with this next go round of radiation, I'm sure it will not get better in the near future.  

Sorry no pictures... Maybe once we get home and I am not doing this on an iPad. 

Thank you all for your continued love, prayers, and support!  We truly, truly appreciate it!

Peace, love and hoping for a cure

Helen