Save the Date - Wednesday

Please join us Wednesday evening (June 3) at 6p for a memorial celebration. Venue is between Tipp City and West Milton, Ohio and dress is casual. More details to follow but we're too tired to write more tonight - however, we want you to be able to plan ahead with as much notice as possible. Love to all. 

His Struggle is Over

We feel so fortunate to have had such a positive family evening with Dad last night (see the previous blog about watching the storm). Dad always enjoyed watching storms - he helped his Dad install lightning rods, so storms were good for business. We counted the time between lightning and thunder together as a family one last time. 

Over the last several weeks he encouraged us to miss him but not stay sad. We share his final counseling advice to all of you as well. 

Dad donated his body to science and is headed to Ohio University.  We are making arrangements for a memorial celebration likely midweek afternoon/evening, including a reception afterwards with his favorite - homemade ice cream. Stay tuned here for details. Thanks again for all the support. 

A Change of View

They moved his bed because they heard he liked storms. Window is open and we're hearing the waterfall, ducks, thunder...Also, notice Dad's heron quilt Mom brought in.

Song for my Dad...from my Dad

I brought my guitar music along on this trip, knowing that Dad always wants me to play for him. I probably should've started trying earlier, but I eventually got around to asking for an instrument Wednesday (since we've only made it to my parents' house once since I flew in Monday). My high school friend Jenny brought me hers Thursday morning, the first day we moved to Hospice.

Thursday afternoon I eventually got up the courage to play a few songs. Yesterday (Friday), I finally broke out the song that I wanted to and yet didn't want to sing for him. Back in March of 2010, long before he ever was diagnosed, I received the following email.

A Song for You
We were watching Chet Atkin's special on TV tonight, filmed in 1987, he died in 2001.  A great Nashville legend. Anyway he played a song on it called, "I just can't say goodbye"  Don't know if you have heard it. Mom and I both liked it....I could almost hear you singing it, and I think a lot of people will be moved if you play it. 
Dad

At the time, I put together the chords and attempted to play, but just couldn't do it back then. It's a beautiful song, but I just didn't feel *I* could sing it yet. I did my best yesterday, just for him, when others weren't around.

So here it is folks. You can listen to the original he listened to rather than mine - maybe some day.

The weekend doc (another coincidence - someone who was a family practitioner who had common patients with Dad; Mom recognized his name), just left. Same (not overly concise) report - it could be hours, could be days. Dad is essentially unresponsive now. He's fought a valiant fight, and we are all at peace with what lies ahead. As always, the outpouring of support has been amazing and overwhelming and much appreciated. 

John's Gift

We have spoken again to the very compassionate doctor here at Hospice. She confirmed our feeling that John is in the final stage of Hospice care. No one knows if we are looking at hours or days. 

John is being kept comfortable and, while not always in words, has continued to express his love for Erin and I and those he has been close to. So many have felt the need to express how he accepted them and made them better people. He has been a blessing to so many who can then be confident to continue, however difficult, without him. And I say "Thanks John" for us all

From Joyce

Everyone has been so concerned and supportive of John, Erin, and I during this difficult journey.  I know he would want us to continue to keep you all informed.  It is difficult for us at this time.  We will do our best to update this blog, as frequently as we can.  We will not, however, always be sending the email version of the update.  Feel free to check here frequently to know the current status.  Again we are so grateful for everyone who has showed their love and concern for all three of us.  It has truly felt like a community of caring like we could never have imagined. 

Thank you all.  Love Joyce

Hospice of Dayton

Hi everyone,

Dad has moved to Hospice of Dayton. It is a lovely, lovely place. No more beeping, flashing monitors and less tubes. Everyone we've talked to really appreciates this place and their staff.

Everything is very nature-oriented and just set up to be as relaxing as possible.

The entry:

The view from Dad's room, which many ducks wander past:

And some folks you may know.

As for Dad, right now they're calling his condition "fragile", they consider him only in the first of three stages of Hospice care....however, with all of his various issues, he could accelerate the timing. We may have a better idea tomorrow.

When we first arrived, around 6:00p or so, Mom was very leery about leaving Dad right after landing in a new place. One of the nurses on staff happened to be Mom's second cousin, Donna, who was just about to finish her shift. She offered to sit with Dad while we went to dinner, which was a great transition for us.

We did stay at our local friend's again overnight, but I think we're at enough of a comfort level now that we'll actually make it home tonight. At the hospitals, Mom always liked to be around for the staffing shift, to get reports and answer any blanks, as well as be an advocate for Dad's wishes. That's not needed here, as that's their whole focus, and if we miss the doctor making rounds, we can just call her back to the room any time of day.

Hospice is also very focused on family support as well, and among other things, we've enjoyed therapy dog visits and fresh strawberries plucked from the solarium! We've also made sure Dad knows how much of a gift he's given us by being very clear about his wishes to be here, not only for his peace, but ours, especially in his desire to make this as easy for Mom (and me) as well. Before Dad had ever gotten sick, he had a friend taken care of here and had expressed that if the time ever came he'd like to be here at Hospice of Dayton. And yesterday morning, he expressed that desire at least six times to various health professionals. He also immediately seemed more at peace once he realized we were indeed following through with his decision. I have to say, I agree with him. Have I mentioned it's a lovely place?

Visitors are allowed, any hour of day, and if you'd like to come, it's fine with us. A rough idea of when you might drop by is a great headsup so everyone doesn't show up at once. He's currently still recognizing friends, and often reaches slightly to hold a hand, but is increasingly sleepy with shorter responses. 

So many people have told us how much of a difference Dad has made in their lives. We have passed the messages along, often eliciting a "Wow." We even stopped by the 6th floor nurses at the hospital before we left and they discussed some "good advice he gave me." I love hearing the stories and sharing photos. Please feel free to continue, by sending them my way. Thank you all for all your kindness. I know you're reciprocating the life he lead....which is very cool.

Hospice

Dad was moved to Hospice of Dayton today. Too tired to write more for now. I'm sure you understand.

Tuesday morning

Found this picture in a draft blog post Dad had started. Joyce's cousin Joan was originally going to come up and help plant these, the weekend Dad first came to the hospital this time around. In the meantime, they now make a lovely feature in the hospital room.

Just before we left last night, Dad got pretty animate and said he wanted to know what was going on (or something close to that - basically that he felt out of the loop). We're reducing the pain medication a little so he can be a bit more coherent. He's very clear he would rather be in some pain so he can communicate. But as we've mentioned, there's only so much we know either.

His feeding tube doesn't appear to be working well - nothing getting processed in his stomach. They're going to xray later today and maybe reposition it. Meanwhile, the drain in his liver hadn't been outputting for a while, and that has now increased overnight. Kidney function is somewhere around 15-20%. He's much more alert today and it's been nice to see a smile cross his face every so often. Joking with the nurses which hasn't happened for a while. Has a new nurse today, a big guy named Todd, that we all like quite a bit. Very much still a waiting game, but now there are two of us (not just Mom) to be on call. Dad can't swallow liquids, but asks for ice chips quite a bit and can crunch those up and get those down without much issue.

Mom and I spent the night at a nearby friend's house. Especially good for Mom to sleep in an actual bed, and Dianne’s house was so spacious we kind of even got lost for a while (she's out of town and gave us free reign).

Dr. Lavelle (oncologist) is finally back, which Dad has been waiting for. Really like him. Realized Dad was on Benadryl (which, like many of us, Dad takes to sleep sometimes) so removed that order. Basically, things could go either way at this point, and we're on a "wait and see" plan, trying to let Dad make some of the decisions as to pain threshhold and body position as much as is possible, as he just can't get comfortable. The staff has been great here, trying to time medications and therapy around when they think visitors are coming, and really did a lot to get ready for me yesterday. We've appreciated the team attitude here. 

Thanks, everyone, for all your support. 

Erin

A recap of the last several days....

Erin here again.

Here is a recap of some of the mini-updates circulated amongst some of the family to keep you up a little bit. You get a variety of fonts as I cut and paste from various media on my iPad!

May 15 - Another Procedure

Docs in.  Billirubin up.  Will have external drain inserted today if they can get him on schedule.

[Later]

John had procedure today, finally after 5:00p and waiting since 1:30p in prep room....long story and I'm [Joyce] too tired.  Unfortunately they were unsuccessful at putting in the external drain to his liver.  The bile duct was not dialated enough to insert the tubing.

So need to wait to see if stent starts being more productive or billirubin goes up even more and therefore duct is more dialated so the tubing can be inserted.  Maybe try again Monday or Tuesday.

May 18

Will try inserting external drain in liver again today.  No scheduled time yet.  Because of tumor difficult to get in.  Praying for success with minimal associated problems.

More info....Dr will be Dr. Curry, radiologist.  Will come to John's room to discuss with us before procedure.  Procedure sometime after 1:00. [Note, was moved to next day so could use the anesthesiologist we wanted to use.]

May 19

Today's procedure has finally finished. Lasted about 3 times the expected. One tube was inserted that should drain 60-70% of liver (bile has been building up). The stent was previously draining the other part, but poorly. Unfortunately, as predicted might happen, the stent was hit today and had to be removed. It's up to Dr. Reid (the liver doctor) when and if will be reinserted. They were also planning to put in a 2nd tube if possible, but that is blocked by Dad's anatomy (nothing to do with the cancer, just how he's built). Dad will be in quite a bit of pain due to all the "rooting around" done in there today, but hopefully we'll see good reduction in the bilirubin levels.

May 21

Last night about 10:30 John was taken to the ICU. His blood pressure had dropped significantly. He has a low grade infection. He has been given blood and antibiotics. As of this morning, his BP was almost normal. He is now talking and  alert.  Joyce and Deb spent the night. 

[later]

Hi, I [John's sister Becky] just talked to Joyce.  She said that John is stable and alert.

May 24

Hello all,

Joyce called about 8:00 AM and said John not doing well with difficulty breathing and a number of miscellaneous problems. (John has been in ICU since Thursday).

I [John's Brother Dan] went down about 9:00 AM and visited; they hooked up a different breathing machine to make John more comfortable and get the oxygen level back up.

John also has VRE that is a hospital acquired infection from what I understand. [Note, it is actually an infection caused from stirring up the bile already in his body, a very dirty environment. - Erin]

I checked in with Joyce about 12:40. Erin is on the river in Western Colorado and has been out of cell coverage, but they connected and Erin will be flying in once a flight is arranged.

Please keep John, Joyce and Erin in your prayers.

May 25, approx 6:30p

No real change overnight, though he did sleep very soundly - a relief to Mom. I (Erin) am here now, and he definitely knew who I was and reached forward to hug me. Oxygen levels are good right now, and they've actually been able to reduce the flow of it. Kidneys are only functioning about 15%. He also keeps getting hiccups - to which Mom and I aren't as sympathetic as many of the others, as he has been known to make quite fun of our own hiccups in the past. After a few sets, I said, "Oh, I hiccup so much louder than that!" And he let out a really big one. He's now really part of the family. 

Having a lot of trouble swallowing so they have inserted a feeding tube. He also likes chomping on ice cubes, which one of the nurses has flavored with grape juice. He needs a little of this any time he wants to talk. Doesn't "chit chat" but he perks up to say hello and goodbye to most people as they visit.

From Erin - May 24th

Hi Everyone,

For those of you that don't know me, this is John's daughter Erin.

Just a quick note to say that Dad has been in ICU since Wednesday and the prognosis isn't good right now. He's still rather coherent but we're just not sure what may happen next. I'll try to update this blog with some of the in between things that have happened, but am not sure how much I'll get to it - plus if you're signed up for updates, it may take up to 24 hours to receive notice of them.

I am flying out early tomorrow (Monday) morning from Colorado to Ohio. If you have our phone numbers, you can try that. Just know that of course everyone is calling, as he is loved so much.

Through all of this, I have been so proud of my father in his honesty in dealing with this and sharing it with all of you. While it's hard to go through, all three of us have so appreciated all of the support you continue to send our way. Thank you.

Erin (and John and Joyce)

May 13, 2015 Update

May 13, 2015

Health Update

Since last update on April 3,2015

Generally these last 2month have kicked me in the “Arse” as the British say.

The side effects for a few days after treatment have been challenging. Different since changed to Camptosar for last three infusions. Very poor energy level after Camptosar for last three infusions. Burning hands. Very dry nasal passages, neuropathy, poor appetite.

Then life got interesting.

April 24^th To ER 2 am as was jaundiced, had temp of 100.5, and white blood count and associated numbers down. Bilirubin count up. Admitted and placed on antibiotics of course. Diagnosed with neutropenic fever.

April 24- Had planned to go to Knoxville, Tennessee today to visit Joyce's cousin, Joan and her family—didn't happen. Very disappointing.

April 26^th Released noon from hospital

^{Of course, chemo postponed.}

^{May 7, Thurs Met with Dr. Reid to prepare for liver duct exam.  “Endoscopic retrograde cholangiopancreatography” ERCP. When at the office visit, had me do blood work. My blood was thin. Also did a ultrasound of both legs to check about the blood clot.}

^{May 8th-Friday postponed chemo}

^{May 9th. Scheduled ERCP on Saturday AM. Checked my blood, still too thin. Dr. Reid admitted me to the hospital to supervise getting blood less thin. Got 5 units of plasma, plus antibiotics}

^{Decided it would be less risky if I had a venous umbrella screen to prevent any blood clot moving.}

^{May 10th. Sunday AM Dr. Yanneta installed the screen. I didn't help Joyce much to celebrate  Mother's Day.}

^{May 11th. Monday, Dr. Reid performed ERCP, placed a stent in my liver duct to help drain bile. Decided to learn more of the words to the song They Call me Mellow Yellow by Donavan 1966}

^{May 12th Tuesday- off and on severe abdominal pain. Drowsy}

^{May 13 Still in hospital....liver functions slightly improved Dr. Reid wants to stay in hospital for a few days with better Bilirubin scores. Feeling much better.}

^{May get out Friday, unless Dr. Reid decides to put in tube to liver to drain to outside of body (percutaneous transhepatic biliary drainage)}

^{No chemo his week.}

I may write some  blogs  of a brief nature, or post some photos, rather than send an email.

http://itwonthappenthatway.blogspot.com/

The support and encouragement for not only me but Joyce, too, has  been impressive.  If you see her, don't ask how John is doing. Ask how she is doing.

As usual feel free to share with others. Hopefully I encourage others to not hide or be ashamed of cancer.  I often enjoy helping someone.  If you hide your problems, you are denying others the opportunity to feel good about helping someone.

John E. Swank