July 18-21st good times, bad times... My love grows more each day

Dear Family and friends,

I meant to update the blog last week after our return trip to Duke on Friday, but it got placed at the near bottom of a long to do list.  I realize this is a life line to Jack for a lot of you out there and hope that you understand that sometimes this is just too hard.  Too hard to fit in - and lose the time with Jack since he stays upstairs most of the time; sometimes too hard to write it all down.  

S we came back down to Duke last Friday for an appointment with Dr. Hanks and to check Jack's sodium levels.  His sodium levels were good, but his protein levels were extremely low.   Jack has not been eating well enough.  Not enough food and not enough protein!  He needs to eat!  And we need to make sure he gets protein even when he doesn't feel like eating.   Good news also... His white count was back down near normal.

Jack has also started retaining fluid/water in his feet and calves.  This is in direct coalition to his low protein levels.   Jack got drained again while we were here.  2.9 liters.  At least we are heading I the right direction in that department.  Then we headed the car in the right direction and came home to Todd!  

Jack's brother Rick had come down from NY to see Jack and he and my sister Teresa manned the store all day Friday!  I heard he was quite the dishwasher and bakery assistant!  They did a wonderful job.  Teresa has been working the store for the past week, since she came to visit.  She had brought all her toys to play - you know, bike, kayak, etc.  but has been so busy between working the store and then rubbing Jack's swollen feet she hasn't had time to play.  

A side note here - on one of Teresa and MC's first trip down here Teresa helped a man who had fallen up in the woods and couldn't get up and his son couldn't get him up.  He was a diabetic and on oxygen and had been up there on the cold ground for hours already.   His son stopped our car and asked if there was a stout man with us who could help him up.  I said no, but I would run get one.  Teresa said wait... Let me out, and she ran up, got the man up by herself (he was not so small) and helped get him into the car and drinking something.  A few weeks later his pastor came into the store looking for the angel that saved his friend.  That's what the pastor said the man called her.   The man came I to the store not long after looking for her too.  Said she appeared like a vision and helped him.  She has been our angel this past week.  Rubbing Jacks swollen feet at night and working the store everyday.

It was great for Rick to finally be able spend some time with Jack on Saturday along with our dear friends and Jack's old band mates Adam and Dayna Reist (who also came down from NY). Jack had a great day and even played a song.  Adam came down and helped out the TCPO by doing the sound for our concert that night (that had to be moved I to the Merc)!  Jack had a great day.

While cleaning/closing up the store that night I got a call from Jack.  I knew something was wrong.  I came home and Jack had such discomfort... We spent the rest of that night chasing the pain.  

When you have a disease like cancer or something else that gives you pain or discomfort it is easier to manage the pain once you get it under control, than to chase it and make it tolerable.  We stayed up all night Saturday trying to find him some comfort.  

                     

Sunday morning brought more of the same.  With no sleep and still trying to get a handle on the pain.  I tried to go to work,  but with my mind elsewhere went home to see about taking Jack to the ER.  I talked with his doctor and we decided that unless he got worse, we should just wait and come on Monday since we already had an appointment and to increase his pain meds in the meantime.  

Sunday we had a concert in the park of the Kruger Bros., Wayne Henderson and Charles Welch and freinds that Jack has been looking forward to, but just could not muster the strength to go.  Everyone there missed him... Including Charles, who has been to the house and played with Jack before and has been planning on coming over again as soon as Jack feels up to it. (Hoping this week) along with friends Cecil and John.

Jack's daugther Sarah stayed with her Dad all day, so I could go to the concert and help Teresa with the store.  I'm not sure I did either well or for long, being sleep deprived and worried.  But the music was fantastic!  Made it hard not to cry a few times, being so moved by the songs.  

Sunday evening brought another sleepless night for Jack.  He has found it hard to find a comfortable sitting/laying position due to the pain the massive tumor is causing by pushing on his diaphragm and stomach.  It radiates pain to his abdomen, back and shoulder.  It is also making it hard to eat much which causes great concern for his protein levels and increases the fluid to his feet... Cancer really is a horrible, awful disease that seems to take you apart bit by bit.  

Today we are at Duke.  We got here about noon for his appointment to put in a semi permanent drain at 1.  They came and took Jack back for the procedure telling us it would be a minimum of 2 hours.  Sarah and I went and grabbed a bite to eat then went to make phone calls.  When I got back to radiology they were both there!? It hadn't been that long, not long enough for the procedure and recovery - less than an hour since they took him.  They ended up not doing the procedure because he didn't have enough fluid for it!  Well, that was some good news for a change... Or is it?  Does it mean the anti-PD1 is working?  But he was still in pain.  We hadn't got a handle on managing it, so after speaking with his cancer triage nurse we headed off to the ER.  Jack needed to get assessed so they could get his pain under some kind of control with IV drugs.  

After a long wait, a CT scan and x-ray, some fluids for rehydration and of course pain meds, we were finally assigned a room.  The doctor on the floor came in to talk with us and we will be talking with his Melanoma specialist Dr. Hanks in the morning about the results more and what the next plan is... But the results of the CT scan were not good. The tumor that popped up a few months ago, that I talked about in the last post - the one we thought was the size of a golf ball that had grown to 15 cm - is now quite a bit larger still.  In fact it is pushed his spleen down and his causing his intestines to move and is giving him trouble in his diaphragm and pain when he takes a deep breath.  There is also another cyst or tumor growing outside of it near his pancreas.  Looks like the BRaf drug ( the mibs and mabs - lingo for them) has lived up to their reputation and worked for a while then make the tumors grow wildly.  Jack wrote about them in a previous blog.  

Tomorrow we will talk with Dr. Hanks about options.  Radiation on the large tumor?  Surgery? Or wait for the next dose of PD1.  I spoke with Dr. Hanks earlier while we were in ER and he says he's seen miraculous results from PD1 for people worse off than Jack.  So tonight I'm praying for a miracle.  I believe in miracles... It was a miracle I ever found this wonderful man in the first place. 

I will update again tomorrow - when we know more of what is happening.   I want to thank everyone for their prayers, intentions and positive thoughts.  Jack is still positive and still fighting.  

I would also like to ask a favor of all of you... The idea came to me after I send out birthday greeting requests to our close friends and family to send him a birthday card.  The response was great and Jack truly felt the love.  I didn't put it on here because I didn't want Jack knowing... But he hasn't read my last post and not sure if he'll be reading this.  Anyway a couple people send videos wishing him a happy birthday and them my sister MC and her kids and my cousin posted a picture of themselves tagging him and wishing him well in his battle and sending their love to him.   If any of you could do something similar.  just posting a picture of you, a favorite spot, an old pic, a big toe... okay maybe not the big toe.  (post it to face book and tag himin the post. ) But something that would give encouragement and show him how much we all love him.  I am hoping that maybe that would brighten his day knowing how many people loved him and were sending him strength for this next battle he faces.  Just a thought on how to show him how loved he truly is.

The beeper on the drain is going off in this picture and its not so good, but in good times and bad I could not love him more than I do right now and always have.  Forever and more I love you Jack Rielly.

I will post more pictures when we get back home of the video of him singing and playing on Saturday.