plans

“Death leaves a heartache no one can heal, love leaves a memory no one can steal."
~From an Irish headstone 


Dear Family and Friends, 

We are still finalizing our plans, but the Celebration of Jack's life will be this Saturday at 2pm at Cook Memorial Park in Todd.   

There will be a chance for everyone who wishes to speak to say a few words about Jack, share a memory or favorite quote or if you wish to sing or play a song for Jack.  

The celebration service will then continue at one of our dear friends Mary Love and Dave's house here in Todd.   

Per his wishes, Jack will be cremated as soon as possible, which looks like it will be first thing tomorrow morning.  I know Jack has left his earth bound body and has been lifted up, but  if you would think of him and the love he brought at some point in the morning, maybe a prayer,  it would be appreciated.  Thanks to other dear friends of ours Tom Sternal and Sebastian, now he will be laid down in a fine poplar box for the cremation.  The folks at the funeral home said in their years there they had never had anyone provide something for their loved ones to be cremated in and they thought it was beautiful.  I know Jack, even being the minimalist he was, loved the thought and I'm sure is now honored with how it was handcrafted with love for him.     

Jack Rielly's obituary

Many may not know that Jack was not only an avid reader, but wanted very much to write a book and was a poet and songwriter.  

I want to share with you a poem he called death.  

DEATH
Am I lucky

If I have time

to say goodbye

What's the Cost?

Or is it best

if the line

is cut loose

whilst taut?

Sweet fate

Who's light

is too bright

to see ahead

Pray I'm ready

to meet

your embrace

when you call.

~ Jack Rielly  

Jack was ready.  He chose the time to say goodbye...

you are shining bright in the light of the sunrise and sunsets.  

In the twilight and when the moon is high and stars guide my way

I will think of you.  

I will carry your love in my heart as our souls intertwine

And remember that for a short time you were mine.

Love You More
Helen

“I love you every day. And now I will miss you every day.”
~ Mitch Albom, For One More Day

Peace has come

Dear Family and Friends, 

It is with a sad heart that I must tell you... it is done.  Jack passed this morning just before 6am.  

He went very peacefully in his sleep, his hand in mine.  He used to go for a walk with dear friends every morning at 6, so I figured he wanted to catch that final walk with them.  Now I believe he is finishing his walk on the trail.  

We don't have arrangements yet for his celebration of life and love.  I will update when we have all that arranged.  

With love and thankfulness to have found this man and have been able to spend the time together with him, I leave you now with a few pictures of him on his favorite trail... the AT.   And the opening quote from his favorite Christmas movie we watched together Friday night... "Love Actually".

Love always

Helen

    

"Whenever I get gloomy with the state of the world, I think about the arrivals gate at Heathrow Airport. General opinion's starting to make out that we live in a world of hatred and greed, but I don't see that. It seems to me that love is everywhere. Often it's not particularly dignified or newsworthy, but it's always there – fathers and sons, mothers and daughters, husbands and wives, boyfriends, girlfriends, old friends. When the planes hit the Twin Towers, as far as I know none of the phone calls from the people on board were messages of hate or revenge – they were all messages of love. If you look for it, I've got a sneaky feeling you'll find that love actually is all around." - Opening statement - "Love Actually"

each step I take is easier with you

Dear Family and Friends,

It's hard to believe that September is just a few days away.   The hours seem to pass without notice here in the house the love built.

Jack continues to get weaker by the day,  he is no longer able to stand on his own...needing assistance in the smallest of things.  His weakened state also reflects in his communications.  He rarely speaks, and  even hand signals are getting harder to convey.  I'm not sure if it is the tumor in his brain, weakness from barely eating or lack of oxygen that is causing it (he frequently will not use his oxygen).  Whichever it is, it seems each day that passes he is more and more disconnected with those around him.   Although he is still aware of what's going on around him and can hear you.  Yet, there are still moments (usually around 4am) that he has moments of clarity where he can articulate his needs and understanding.

The time has come that we feel it is in Jack's best interest to limit the visitors he has.  It just takes so much out of him.  I know there are a lot of people who wished to come see him, but know that he loves you.  Right now is time for family and close friends.  

We have moved Jack upstairs into our bedroom which Jack also considers his space, his retreat.  This is where we always spent our time after a long day.  We knew Jack would feel better - more at peace - being up here.   And thanks to Walt and Jim we were able to move the hospital bed up too!  (Along with Jacks memory wall)

My nephew Steve is here today helping us out.  He came up from Raleigh, where is in town from San Franisco for a veterans job fair tomorrow.   

I want to give a big shout out too all our friends here in Todd who have recently set up a meal train to assist us.  It has been a huge help to not have to worry about what we are doing for dinner!  Thank you Linda for setting this up!

Each step I take is easier with you.  

My brother-in-law Tim is walking The Way ('The Camino de Santiago' trail in Spain) this is what he told his wife (my sister Mary Ann) when she joined him for the last 100 km.  I find that it is that way here with Jack.   As hard as this is, it is easier with him and the help we've received from all those around us.  Even from those who are here in spirit - We feel your presence! Your prayers, concerns, loving thoughts and support have made each step on this path easier to take.  An analogy that I think Jack would like - it's like trail angels giving respite and meals for us and helping us carry our load on this uphill climb.  

I also want to thank Hospice for all they are doing to help us.  Their guidance in this difficult time has been a Godsend.  They helped both my parents, and many others to navigate though these hard times.

Thank you for all your continued prayers, love and support.  

Love truly is the greatest gift of all, 

Helen

Looks like I feel pretty shitty

Dear Family and Friends,

Just wanted to send out an update and let you know how we are all doing here in the 'house that Jack built'.

Jack has been doing okay.  He is increasingly tired and weaker.   He has moments of anxiousness - being stuck in the house for days and wanting to go out, moments of frustration - not being able to come up with the words he wants or expressing himself adequately, plus not being able to do the things he used to or walking around the house or to the bathroom alone, moments of confusion - wondering why people are coming to visit him (is someone sick?), why does he have to take so many drugs - what are we giving him, etc.  Still, at times Jack comes up with what I think are the most brilliant and prefect words that sum up a situation.  Sunday morning he was eating breakfast and said "it looks like I feel pretty shitty."  Well, you can't argue with that - as he takes a handful of drugs.

He is beautiful.

Sean had been here all weekend helping with some overnight as well as daytime duties.  Saturday night was a rough one for Jack.  He was up all night (he would only lie in bed from around 2-4:45) I had to wake Sean up at 6 am to take over for me since I could not stay awake with him anymore.  I went to sleep on the couch and woke up to them going outside on the deck around 8.  Jack was wide awake until around 9:30 when we finally convinced him to lay down and close his eyes for a bit.  Some days/nights are like this.  

The love we feel "in the house that Jack built" has been nothing short of amazing.

Some visitors he has he engages with and laughs, some he seems distracted and disinterested in... this is not a reflection of the visitors, but of his mental state at the time and how his night goes.  Please understand.  And please understand, his moods can change rapidly.  The tumor in his brain is affecting some of this, the drugs also play their part. 

As most of you know, Jack has loves music.  As his son Sean said "When I was younger, there was always one unbreakable rule in our house - do NOT disturb dad while he was playing guitar. It was his time..."  

He has always found solace in music.  These past couple weeks we have been so blessed with other musicians (who perhaps know this is where he finds his peace) have come over to play for him.  For Jack this has been a true gift.  Sunday a week ago we had Cecil Gurganus, Charles Welch and John Kirby come over and play for Jack.  Then the following Monday our good friend Hank Orr came by and played for Jack.  During these times, you will catch Jack watching their hands find the chords, tapping his foot to the beat or strumming his fingers.  A couple times he even tried to play along.  Here is Jack playing along with Hank Orr for a moment.

He's a rock star always!

This past Sunday our friends The Tillers came by.  The Tillers played at our wedding and our one of our favorite bands.   They played Saturday night at the park for the TCPO summer music series and then came over to our house before noon (which is early for musicians!) and played a set for us!  It was remarkable!  After they left Jack said "Now that was really cool!"

Jack with The Tillers - Mike Oberst, Sean and Aaron Geil

Jack is right - that was pretty amazing and cool!

We have also had some family coming in to wither help at the store or here at home or to just visit with Jack.  Our daughter in-law Paige has been amazing!  She has her parents watching the kids so she can be here and help with Jack.  Jack feels quite comfortable with her so she is able to help in every capacity... which helps me out more than I can say.  My sister MC had come for a few days to help with the store, and now Jacks oldest and youngest sisters are here.  'Reen and Peggy.  Pretty amazing since 'Reen just had surgery and stopped her chemo treatment to come down to see Jack.  She has been battling colorectal cancer since last year.  Jack's ex-wife Lori and her husband Lanny are here also.  They created a date night for Jack and I last week that was amazing!  We had one of Jack's favorite meals - lobster rolls.  Tonight they making another delicious meal for us that already smells mouth watering!  

Lori and Lanny gave us a date night that was spectacular!  

It's a true testament to Jack all the love and support we feel here in this home.  He is a visionary and a touch stone to so many people, including me.  

I will try and write more sooner rather than later, but it is hard to find time to sit and get my thoughts collected enough to put them down.  

Thank you all for your continued love, support, prayers and positive thoughts, it strengthens us for our challenges for our path that still lies ahead.

Peace love and courage to see us through

Helen


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

"Love you, love you

And in the end, the love you take
Is equal to the love you make"

~ The Beatles

Home is where the Heart Is

Dear Family and Friends, 

Jack, Sarah, Sean, Paige, Lori, Lanny and I all arrived home on Friday to the great delight of Cody (our little dog) who had been a nervous wreck since we left Tuesday night.  Elise and my sister Kathy (with the help of hospice) had the house all set for us to move into the downstairs bedroom.  We had everything we needed to make the transition.  

Sarah, Jack and Sean before we left the hospital

Jack is on steroids which is keeping the swelling down in his brain.  They are also giving him energy, albeit temporary,  although he does wear out easily and needs rest.   He is also in a great deal of pain, that with the help of hospice we are managing to get under control.   I fear the tumor in his abdomen is giving him the most pain.  As it continues to grow it is displacing his organs.  You can see in the x-ray below how much it has squeezed his lung.  It also is moving all his major organs as it continues to grow.   In the CT scan they did on August 1st (without contrast, so it is not an accurate measurement) here is what the report said on the mass.  
"There is a large mass centered in the left upper quadrant and extending to the right of the midline, displacing the pancreas, spleen, and left adrenal gland and kidney. The mass measures up to 17.7 x 24.4 cm transverse dimensions; it is likely grossly unchanged in size since previous study. The mass closely abuts and displaces the the stomach and closely abuts loops of bowel in the left upper quadrant."
  

chest x-ray they took last Tuesday at Duke ER

 I can only imagine the pain he must be in and wish I could make it go away.  

Jack has had a few close friends stopping by... but this weekend was about his kids Sean and Sarah spending as much time with him as they could.  Sean had to leave last night to head back to work at ESPN, working on a big website launch and Sarah leaves tomorrow.  I know how hard this has to be on them both.  However, Sean's wife Paige is staying with the grandkids, Lori and Lanny are still here and Paige's parents Pat and Joe have come up to help with the kids so Paige can help at the house here.  
   

A big plus is Lanny and Joe are excellent cooks, so they've been preparing meals for us 

I know how much so many people want to stop by and see Jack, and let him know how much they love him. It's hard, because he wears out so easy.  A lot of conversation is hard for him to follow between the brain lesions and drugs and he ends up getting confused.  Friends are more than welcome to stop by anytime, but please we ask that you give a call before you come to make sure he is awake and up for visitors.  Even then, we may have to limit your time, due to his discomfort/pain.   

Yesterday, some of our friends that are musicians have been trying to get back together with Jack since they played together back in late March.  Jack was working on making a CD of some of his favorite tunes to leave his grandkids and he had incorporated Cecil and Charles to help him out with it.   Well the timing never worked out.  I spoke with Cecil Saturday morning and he wasn't sure if they would be able to, but he was going to try and get Charles Welch and John Kirby to come over and play.  He called first thing in the morning and told me it would out for all of them to come.  It was great, they gave Jack a little listening session in our living room.   When he hit is wall of pain, he went back to his room... but asked that they keep playing a song or two so he could hear from his bedroom.   We have another musician friend who is planning on stopping by tomorrow to play for Jack... and also a friend who is planning on reading to Jack, since he has a hard time reading himself anymore.  We are blessed to have such a great network of family and friends indeed during these troubling times.  

   

Speaking of bedrooms, we have created a memory wall of sorts for Jack in his... so he knows how many people love him.  

And just because they are as cute as anything and always brighten our day, here are our grandkids Tanner and Grayson.

Thank you for all the prayers, love  and support we continue to receive.  We are truly blessed by all of our families and friends.   The trail may get steep and winding, but the love will feel will strengthen us for the journey ahead. 

Peace and Love
Helen


“I always think that the best way to know God is to love many things.” 
― Vincent van Gogh

"Remember your promise to me, for it is my only hope. Your promise revives me; it comforts me in all my troubles."

Psalm 73:25-26

Changing lanes

Dear family and friends, 

There is no easy way to relate our latest news... We've received some bad news yesterday and Jack will be entering hospice care after we leave Duke tomorrow and head home to Todd.

Tuesday night we went to the Watauga ER after Jack started displaying increasing confusion and started having muscle coordination troubles.  At the ER they did a CT scan which showed a bleed on his brain.  He was immediately transported by ambulance to Duke and I followed in the car.  

They did a CT here at Duke and admitted him.  Wednesday they did another CT and an MRI.  The bleed was from the little tumor they did radio surgery on in February.  Although it wasn't as little as it was the last time they looked at it (6/27/14).  It has not only started to bleed but has grown.  So, about the same time the tumor in his abdomen started growing rapidly, this booger did the same.  

Since they had already done radiation on it and it being in a precarious place, there is nothing more they can do.  It is in the left Thalmus area, on top of his brain stem.

Photo courtesy http://www.news-medical.net/health/Thalamus-What-is-the-Thalamus.aspx

Dr. Hanks did all he could and stopped by today to talk with Jack.  He let Jack know that Jack had put up a real fight and he did all he could do to help Jack fight.  He told Jack that he (Jack) was one of his most thoughtful and caring patients and that he had really hoped the treatments would work.  Dr Hanks was a true advocate for Jack and you could tell he was sincere when he said he didn't come across many patients like Jack.   

We also talked with the Pallative Care doctor about hospice and pain management.  And the patient services person has connected us with Hospice in Ashe County, who with my daughter Elise have already prepared the house for what we will need when we come home tomorrow.  They will be meeting us when we arrive.

Jack and I would like to thank the staff here at Duke, not only in the cancer clinic, but here on the oncology ward at Duke.   They have all been so very helpful during our visits and stay as Jack battled  this horrible disease.  

 We still have a hard road ahead... But Jack will be where he wants to be, home in Todd. There is no way of knowing how long or hard the struggles on the road ahead will be, but with our families and friends love and support it will make it easier.  

Your continued prayers are much appreciated.  

Peace and Love, 

Helen

The only courage that matters is the kind that gets you from one moment to the next. ~Mignon McLaughlin

Pain and The Hard Talk

“There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.” 
― Erma Bombeck

Dear Family, Friends and everyone else.

We went in yesterday to Duke to see Dr. Hanks.  It was just a check up to see how Jack was doing after last week's visit and anti-PD1 treatment and after being in the hospital.  Dr. Hanks wanted to see how Jack's numbers were looking, how the drain was working and to talk to him.   He also added chest and abdominal x-rays because Jack has a cough and has been constipated.  He wanted to make sure that there wasn't any fluid in his lungs and that his bowel wasn't obstructed.

Jack's numbers came back great.  His protein levels are improving (Jack is working very hard at eating more) and his sodium levels were normal.  He also does not have an obstruction nor did he have fluid in his lungs - great news!  Jack has developed a rash on his back and also a case of thrush... both side effects of PD1 - so even though the side effects are bothersome, we know the drug is doing something.  hopefully it's doing more than just creating fungus!

We also found out that his drain wasn't working because he isn't having any fluid build up - Dr. Hanks ordered a CT scan to be sure.  It wasn't with contrast so they couldn't see exactly what the size of the massive tumor was - but it didn't look as though it had grown to the doctor who looked at it.  

Before they checked out the drain though, Dr. Hanks had the hard talk with Jack.  He explained to Jack that it is his inclination to keep trying to cure him.  That is what he does.  But it is Jack's decision when he chooses that the pain is too much and wants to go into pain management and hospice care.   Have I told y'all how much I love this Doctor?!  Usually he speaks to Jack and to the entire room.  This talk he had with Jack.   He looked over at me - but focused on Jack to make sure Jack was understanding him and what he was saying.  As most of you know Jack is rather hard of hearing and the pain meds (and brain radiation) make it hard for him to follow a conversation in the room.  But Dr. Hanks  made sure he understood.  This is Jack's choice to make.  As long as Jack wants him to, he will continue to fight for Jack to make him well.  Jack understood and is good to go for his next dose of treatment on the 15th.         

Thankfully, this visit Jack's ex-wife Lori and her husband Lanny came with us.  They ended up staying with Jack for his trip over to the ER to get the ultra sound and CT while I ran picked up more merchandise I had ordered for the store.   They got to experience the day long activities at the Cancer center and then the ER - and you know what fun Jack and I have had in ER's.  All of us had been without food all day so at 6:30ish the nurse brought us all bagged lunches and ginger ales (they didn't want jack to eat before they checked him out).  We had just started a little picnic there in the ER room when the doctor came and told us we could leave.  I could not have done the day without them and I know Jack was glad to have them there too. 

The doctor has/had prescribed Jack ambien to sleep but he hasn't taken it.  Lanny told him yesterday how he takes it for the pain in his leg that keeps him up and how it would probably help Jack a lot.  It did!  Jack slept last night better than he's slept in weeks, only getting up a few times and going back to sleep within 15 minutes.    

Pain~
Cancer sucks.  I know, you don't need me to tell you that.  Especially if you've gone through it yourself or with someone you love.  It's hard watching the one you love hurt - for whatever reason - but harder when there is little you can do or if you feel out of control of the situation.    Evener harder when everyone is doing everything right, but that one blockade.  That one obstacle that is making the one you love suffer more, unnecessarily.   And when that blockade doesn't have a face what do you do?  

So I want to share with you some of the aggravations  I have had in trying to manage Jack pain.  Jack has never been big on taking any medications, he would balk at taking an advil unless he really hurt.  So when his pain level increased we knew it was serious.  The Doctor wrote us a prescription for oxycotin.  I've watched Justified - I know it's big on the street - but this is for someone diagnosed and suffering from stage 4 cancer.  (There are 5 stages of cancer - stage 0 - 4).   we went for days trying to get it filled at Walgreens here in Boone.  I kept getting from them that they were waiting for approval.  So I called the doctor a couple times, each time they said they approved it.  Finally I thought for sure it had to be approved by now (after 4-5 days of us rationing what we had and not managing his pain very well)   Someone told Sarah to go across the street to CVS with the Rx.  She did and we got the drug in minutes.  Jack ended  up the following day in Duke hospital to try and get his pain under control.  We were there for 4 days (this was right before his last PD1 treatment.)  

Last Friday, after his treatment the doctor gave us a new drug Rx.  one they had used in the hospital that worked for Jack.  I took the prescription to our pharmacy - Walgreens on Saturday.  Daily I kept getting texts that is wasn't ready.  I called and talked with the pharmacist on Monday and they said they were waiting for doctors approval.  I called the doc (again) and they said they would take care of it.  I called on tuesday - same thing.  I called the doctor and they said they gave their approval... so I asked the pharmacist if it was medicaid.  They said yes.  I called on Wednesday - same response.  Thursday I was busy and couldn't call - but I got another text saying it still wasn't ready.  Friday I called Medicaid on our way to Duke.  Guess what - they approved it on Wednesday (why so long - another question?)  But Walgreens said they were still waiting on approval.  Today I went to Walgreens to pick it up... found out it is THEM holding it up!  The cashier there said it didn't have a price so it was adjudicating in their system so she couldn't give it to me.  Please, someone explain this to me.  Talk about a 'really' moment!  I asked her to give me the prescription, went over to CVS across the street and they filled it within minutes.   Walgreens just lost one loyal customer.       

Thank you for all your continued love, prayers, support and postive thoughts and messages to Jack and I.  We are truly humbled by all the blessings, care, love and help we've received through this

Peace, Love and Hope for the cure

Helen

“One word
Frees us of all the weight and pain of life:
That word is love.”
― Sophocles

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