July 30th update

Jack talking on the phone today.

Dear Family and Friends, 

Just a quick note to update you on Jack.  After the last trip to the ER, we've been home settling in.   Our friend Rick came over and helped me drain Jack's stomach on Monday - although there wasn't much fluid to drain.  less than an inch in a 500ml bottle.  We started thinking that there was something wrong with the bottle - that it had lost it's vacuum, but no.  That was all the fluid Jack had.   Thankfully we were able to get the dressing on right this time.  I think it helped that Jack was on the couch with the drain side out, whereas when I had tried to do it before it was far away from me as he lay on the bed.  Plus extra hands helped hold it in place.  

Jack hasn't been sleeping well at night.  Usually getting up and going downstairs to make himself a cup of tea or bowl of cereal.  Monday night I was exhausted  and although I woke up to give Jack pain medicine, found myself back in never, never land fairly quick.  I would wake up to see him sitting in  the chair or heading to the bathroom.  This was sort of our ritual for the last couple nights.   I might add that between the meds and the brain radiation that wasn't all that long ago Jack has had a bit of confusion at times.  Other times he's still sharp as a tack and has the funniest one liners ever.    

Anyway, very early on Tuesday morning Jack thought he needed to go somewhere.  So after wandering around the house for a bit... he decided it was Bo-time.  He decided to drive himself to get a coffee and egg sandwich in Jefferson (about 20 minutes away).    When he came back home, with coffee in hand and no walking stick, he slipped on the gravel and fell.  Although he only suffered a couple bruises and scratches, we realized this could be a lot worse and we were all very fortunate.   

Luckily the home health nurse came on Tuesday and checked him out, in addition to doing her regular monitoring.  Today, the PT nurse came by to assess Jack's strengths and weaknesses and tomorrow the Occupational Therapy nurse comes to assess what Jack's needs are here in the home.

We have such great friends here in Todd.  Linda has watched the store for the last week at least and is training others, since Elise will be away at a friends wedding this weekend.  Plus, someone is here in the house with Jack all the time.  If I need to run out for whatever reason,  we have wonderful people who will sit with Jack and visit or let him sleep, feed him or just about whatever he wants.  

We head to Duke on Friday to see Dr. Hanks and get a chest and lower abdomen x-rays.   

I have included some recent pictures of Jack below.

Peace, Love and Hope
Helen

“You will face your greatest opposition when you are closest to your biggest miracle.” 
― Shannon L. Alder

Jack playing and singing on July19th

I asked for a bell for jack and the next day Martha and Tom made one
and had it to us first thing in the morning!

Back home again

Dear Family and Friends,

We are back home in Todd.  Yay!

We were home for a couple hours before we headed back off to the ER (boo).  The drain they had put in has to be kept in a sterile setting and Jack's bandages opened up.  I tried changing them with the ones they gave us at Duke, but they wouldn't stay closed.  So after another 3 hours in the ER - where they didn't have the needed bandages, but had something that would work - we were finally home.

The bad news/good news is that they are beginning to recognize us coming and tried their best to get us what we needed as soon as they could.  But being an ER they are busy with a lot of other pressing needs - most of which involve bleeding profusely.

Jack had another restless night because it is so hard to get comfortable and stay that way.  He has also developed a cough that exasperates intensely when he lays down.  The tumor is still wrecking all sorts of havoc on his system.  And the pain meds cause there own sorts of problems.

Today he has been a bit confused, likely caused by the combination of pain meds and lack of sleep.  He still has quite a bit of fluid gathering around his feet and calves.

I want to thank everyone who took the time to send him a card for his birthday - he is still getting them and still delights in reading them and looking at them (they are placed around our sitting area in our bedroom.  It really has brightened his days - as well as the texts and videos people have sent to wish him well!

I also want to thank the folks of Todd for all their help during this time - I don't know what I would do without you!  

I will update again soon...

peace love and hope

Helen
 

Looking forward to heading west to home

Hello Everyone, 

Wanted to send another update and let you know that Jack got his second dose of anti-PD1 treatment today!  They also decided to put in a drain to help maintain his fluid accumulation although he hasn't been drained since Wednesday a week ago - and they only pulled 500ml off him today.  With the size of the tumor, he gets pretty uncomfortable pretty quick.  

Last night was another sleepless night for Jack (and me).  Jack was so uncomfortable, he couldn't find a good position and was back in pain.  Plus he started having a cough, which just added to the pain and discomfort.   Then in the middle of the night his kindle ran out of power.  I had forgotten to pack his charger, not thinking we would be here for more than a day.  I had packed a bag, just in case having been caught earlier this month without anything.  Those who know Jack well know he never goes anywhere without his kindle and is an avid reader... Reading every chance he gets, be it waiting for appointments, pumping gas, standing inline at the grocery.  this is his stress releiver and security blanket rolled into one.  So this added even more stress to his already stressful night.  

Luckily we got some charge on it today and his pain seems to be under control once again.  Hopefully his cough will subside too.  The doctor says he may have a little fluid in his lungs, but wasn't too concerned about it.  

It's been another long day at Duke Hospital.  Arriving at 8:50 and not leaving until 5pm.   Definitely will sleep well tonight (I hope!). 

Sarah heads home tomorrow to Texas to arrive just in time for her daughter Caroline's 10th birthday!  We will miss her, she has been such a help and comfort to have around.  

We will be heading west back to the mountains... And I have to say it will be good to be home!  

We come back down here to Duke next Friday for a check up with Dr. Hanks.  

Thank you for all the love, support, prayers and positive thoughts!  

Peace love and hope, 

Helen

Discharged and recharged

Dear family and friends, 

Yay!  Good news, Jack got released today!  His levels are good and although his protein is still low (it takes a while to get it back up to normal) he is good to go tomorrow for his next treatment!  

I think we were all holding our breaths when the doctor finally came in to tell us Jack was going to be discharged.  

But Jack was doing so well... He even took a walk around the floor we are on.  

Now, the bad news... Back in December Jack had mentioned that a new tumor had appeared outside the stomach.  Back then it was somewhere around 1.7-2.0 cm  - relatively small and not that concerning.  Jack mentioned it almost as a side note.  This is the tumor that is now wrecking all sorts of havoc.  It was the size of a golf ball or a little bigger in March... By the end of June it had grown to 15cm x 11cm.  By Monday it has grown to 21cm x 18cm x14cm.  That's as large as a baby.  That's not the only bad news on this.  It has attached itself to other vital organs in the abdomen and pushing his stomach aside along with the other important organs. It is growing so big, so fast it has actually started to die in the middle because it can't supply blood to the inside.   This is the tumor we need the treatment to attack and control.   

We are staying tonight in Chapel Hill and will see Dr. Hanks in the morning then Jack will get his 2nd dose of anti PD1 therapy. 

If you're interested and missed the post of the articles on this treatment I here are the links

NY Times article on PD1breaking through cancers shield

NY Times article #2 on PD1 Promising new cancer drugs empower the body's own defense system

I also wanted to share some pictures :)

Sean and Jack leaving hospital and Sarah, Sean and Jack during visit with Therapy dog!

Jack reading last night...

Peace, love and hope for a cure, 

Helen

Still here at Duke, still hoping...

Dear Family and Friends, 

I'm sorry I didn't write an update yesterday.  It was near afternoon by the time the doctors came in to see Jack and after wrapping our heads around things, getting his pain under control and working on getting some nutrition in him.   When I talked about Jacks tumor being larger, I failed to mention its size.  It is 21cm... Bigger than his stomach, or any other organ in his abdomen and its pushing everything out of its way.  Which is o e reason he hasn't had much appetite... He h this huge mass pressing up against his stomach making it hard to eat a full meal.  Another side effect from not getting proper nutrition (protein) is you start to accumulate fluid in the feet and ankles.  But when you're getting fluid IV's and you have a tumor that is taking up all the space where it was depositing fluid before it got so large - you also accumulate it there.  So Jacks feet swelled up and between that and the powerful pain meds Jack had a very unsteady day - albeit a day of goofy smiling for Jack.  I think he finally got needed rest and relief!  

He had started to eat, but they didn't give him anything until about 1:30 since it was still up in the air if they were going to do any procedure.  But he managed to get food down at every meal they gave him and more.  

Today (Wednesday) Jack was looking and feeling much better.  His eyes were clear and he was backing off all the pain meds... and eating!  In the afternoon we met with the attending doctor here in the oncology ward and a resident.  We found out that they are concerned about Jack's kidney functions and his protein levels (kidney levels could be from CT scan on Monday)  But the real kicker... If these don't improve and if they don't release him tomorrow, he won't get his PD1.  They don't give clinical research drugs in-patient.  

Jack has been working really hard all day to get his levels corrected, eating lots of protein and fluids and has a good handle on the pain.  Tonight we are hoping and praying that he gets released and is okayed to get his second dose of PD1 on Friday.  

I will post tomorrow and let you know.

Peace, love and hope for a cure

Helen

Sorry about the misspellings, ect.  I am doing this on an iPad.

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.

 

July 16th - Home again

Hello All, 

So the one day trip to Duke last Friday turned into a four night stay in the hospital.  Managing Jack's sodium levels took a bit more than expected to get him back up to normal levels.  Plus they were working on managing his pain with this large tumor in his abdomen, which in turn caused other complications as all pain meds will do in time - especially when you aren't eating much.    This led to another night stay to try and get Jack some relief from constipation.  Jack never had this issue before, so this was all new territory in nausea and discomfort.  However by Tuesday morning we were a go!  Or should I say he was a go on Monday night - so we could go on Tuesday!   

Sarah and the girls came down on Friday,  cutting their vacation in the mountains short and Sean came up from Charlotte leaving Paige to manage the kids.  On Saturday Evan (Sarah's husband flew in and took the girls home with him on Sunday)  Paige and kids headed to their vacation at the beach with Sean staying with us in Durham for what we thought was one more night.  On Monday Sarah flew home thinking Jack was getting discharged and wanting to help Evan with the girls when they reached home.  Sean left with us on Tuesday, as we headed west to the mountains, he headed east to the beach to be with paige and the kids at the beach where they had planned their family vacation.   

Once we arrived home in Todd, Jack was very weak and it was a struggle to climb the 24 steps to our bedroom - but you could see the relief he felt at being there.  And Cody was nearly beside himself with joy at seeing us (especially Jack)  Cody is our dog that loves Jack so much he won't leave his side except to eat and go outside.  Sarah at times had to pick him up and take him outside, because he wants to stay with Jack.  To say they have a special bond is understating their love for each other.  Cody just could not stop doing circles when we came home - his way of jumping for joy!

Today, which is only Wednesday, (but seems like it should be a week ago we left Duke)  Jack woke up to the pressure of the fluid build up once again making it hard to breathe or eat.  So today we went to the Watauga Emergency Room for another drain.  

After being there for hours - and having nothing to eat - I think I was turning into Betty White or a Dementor.  There was nothing I wanted in the "healthy choices" vending machine and wouldn't you know - I cleaned my car out of all the good stuff we had at the hospital in Duke.  Plus nothing but soda to drink for me and they didn't want to give Jack water for some reason... I had a hot powerade in the car - but could not find ice anywhere!  

After finally draining Jack (about 5-6 hours later) we found out that they drained 3900ml (that's 100ml shy of 4 liters!) and they wanted to check it because he has elevated white count levels.  I called Elise to run by a burger on her way home from work - but Jack had talked them into giving both of us dinners.   Finally they let us go - so we could go home.  

I am far from the story teller Jack is, but will work on it.   Jack and I thank you for all your prayers and positive thoughts.   We just need more time for the anti-PD1 to be able to work.  9 days until his next infusion.  And if he can hold on a couple more months...  

Peace, love, hope and time for the cure
Helen

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 

― Lao Tzu

Various Pictures: 

Yum - fried fish dinner at Duke.  Yes Subway from the cafe was better!

At Duke on Oncology ward is on the 9th floor - same as the air care pads 

The girls stuffed animals at the hotel in Durham looked pretty cozy!

Jack's hair is growing in kinda weird...  he has a strange spot where the hair is darker

Jack and Sean when he got discharged and we were actually leaving the hospital

Jack's brother Rick posted this picture of Jack as a kid posing for an artist 

Napping before paracentesis procedure today

Notice the 'healthy choices" in the vending machines :)

Now a few from my birthday party.  

Yet, Another bump in the road

Hello family, friends and all those who love and care about Jack (and to those reading this out of curiosity as Jack and I have read many blogs on melanoma), 

Last week we came down to Duke, where Jack was poked on Tuesday and had 3.2 liters drained off his abdomen; then someone called in a miracle because Jack got zapped on Wednesday for the 2 small new brain lesions they had found from the MRI on 6/27.  We were assured that no one ever gets in that fast to get treatment - so someone pulled some major strings or as I believe we had some intercession from a higher place!  And because of his brain lesions being treated he was set for his Anti-PD1 treatment on Thursday.  Without the treatment he would have to postpone the one drug he had been hoping for since we began down this path!  

The infusion took about 30 minutes and we were on our way back to Todd!  

Once we arrived in Todd I dropped Jack off and ran to the store to check on things... As I pull into the parking lot what did I see?  My sister MC coming out of her car!   What a sight for weary eyes she was!  

I found that they (Nancy and MC with the help of Linda) had planned a surprise birthday party for me!  I was wondering why Jack was so adamant about taking me out for dinner on July 4th, even after I kept asking for a mulligan!  My Aunt Mary Jo came in from Knoxville and surprised me on my birthday morning. The party was much smaller than originally planned because of all the unexpected events that week, but was a wonderful day that filled my heart with joy!  Saturday brought MC and AMJ leaving early and Sunday took Nancy homeward bound.

Jack was feeling more tired than usual last weekend and was quite spent by Monday.  Which he had similar effects last time he had radiation, so we didn't think too much of it.  On Tuesday he came into the store and announced we needed to go to the ER in Boone.  He had filled back up with fluid and needed to get relief.  So off to Boone we went.  Sarah met us in the ER with Caroline and Ella in tow.  We ended up being there a few hours while they took 3.4 liters off and then made sure he was stable before letting him go.  Caroline and Ella were amazing champs for having to spend so much time in a place that really has nothing to do!  

Jack had emailed Dr. Hanks to tell him about his fatigue and fluid build up.  Dr. Hanks set up an appointment to come and see him here at Duke this Friday.  So here we are.

Jack has already started putting on fluid again, and his sodium count had dropped 10 points.  This is quite concerning to Dr. Hanks and in turn us!  We also found out that one of the tumors in his abdomen that was outside the stomach and pressing on the diaphragm is bigger than we thought... Much bigger.   It is 6-7 inches.  No wonder Jack has been in pain!  

So the doctor has admitted Jack to make sure his sodium levels don't drop even more and to hopefully stabilize them.  Also to get some more fluid drained off (again without dropping the levels).  I think mainly its to have controlled atmosphere to keep an eye on his levels.   

We need time for the new meds to do their job and shrink the tumors!   Thank you for all the prayers and positive thoughts and intentions sent Jack's way. 

Peace, love and hope for a cure

Helen