Repost of Jen's Last Updates on Kenny

Hi all,

Jen is in the process of expanding/updating her email distribution list. She asked that I re-post her last 2 updates on Kenny in case anyone was missed on earlier email distribution lists. The post is long, but scroll down for the second message. Regards, Cindy

From 10/14/09 - Titled: Kenny news, a sad message

Dear family and friends and work colleagues,

This is going to a large distribution list, and I am putting the names in the "to" field so you may forward to anyone I have inadvertently missed.

Kenny is in hospice at home, with a prognosis of a few days at most to live. This turn of events has been sudden and his decline has been so rapid I have not been able to send an update to all until now. I do not want the news of his death to come as a complete surprise, and I want to give you the opportunity to say farewell if you feel moved to do so.

We are unable to take visitors or calls at the house at this time. However, if you would like to send a message for Kenny to me via email, please do so. We have received some already and are reading them to Kenny as we can. They bring a smile to his face and peace in his heart.

I earnestly beg you not to bombard me with calls or expect an email response. Please, that is one thing you can do for me that will really, truly help. If you have a message that absolutely requires a response, please send it to CircleofFriends4@gmail.com. One of my "circle coordinators" will help.

The cascade of events started about two weeks ago. About two weeks after being told that Kenny's right lung was "clear," he began feeling unwell and having increased shortness of breath. This worsened rapidly over a few days, and we took him to the pulmonologist thinking the fluid had reaccumulated on his lung and needed to be drained, an outpatient procedure that would takes 10 minutes to do. I also initiated a leave of absence at the same time, finding it impossible to juggle work and medical appointments any longer. The pulmonologist ordered some scans and sent Kenny home with an order for home oxygen support, which he started that night. The dr also ordered a bronchoscopy, the procedure to scope inside the lungs and take a biopsy. This was not scheduled the next day and then we were into the weekend and Bethany's 12th birthday party.

Kenny declined rapidly each night. He visited briefly at the party and that was it. That night he dramatically worsened and Kenny's sister Linda was already en route from Ohio. Just in time because the next day we packed for the cancer hospital. He was admitted immediately, tests done, and we were told he had pneumonia. Three or four days of antibiotics should clear it up and he should go home again.

This did not happen. He continued to decline. A volume of fluid around his heart became a large concern and he was on constant monitoring. Everything became difficult for him: breathing, eating, moving, talking, coughing, sleeping. He had not slept well in weeks and in the hospital it was worse. Linda and I rotated shifts at the hospital while others helped with Bethany.

After almost a week in the hospital with no improvement, only worsening, the drs concluded that Kenny did not have pneumonia and that he was instead in end-stage cancer. This was a shock to hear as our expectations had not been set that way. The lymphatic spread of the cancer mimics pneumonia in every aspect down to the elevated white blood cell counts and colored mucous that looks like an infection. His left lung has not worked for months, and now his right lung is slowly closing off and losing its elasticity. He is on a high flow of constant oxygen support.

We were advised that Kenny might be helped by a procedure to drain the fluid from the sac around his heart, and that while he had at best a few weeks to live, this procedure might give him a few more weeks and relieve his symptoms temporarily. The catch was that the cancer hospital did not have a cardiac surgeon on staff and Kenny would need to transfer to another hospital. The cardiologist wanted him transferred immediately since he was at such high risk of a cardiac incident. We declined the transfer until the end of the weekend.

The transfer to the traditional hospital on Sunday was terrible and stressful. Kenny destabilized on the ambulance ride and his heart rate climbed to the 170's and became irregular. It has not stabilized since. The thoracic surgeon finally came for a consult at 8:30 that night, when we were exhausted and stressed beyond measure, and delivered the final opinion that, after all that we gone through for the transfer, Kenny was not a candidate for the procedure after all. The surgeon felt that it wouldn't relieve Kenny's breathing difficulty in any significant way and worse, if he intubated Kenny for the anesthesia and Kenny stopped breathing on his own, he would never be un-intubated and breathe on his own again, thus leaving us in a "turn off the ventilator" decision at some point. Kenny struck his fist on the bed and declined the procedure.

Hospice was initiated the next morning, Monday, at the hospital and Kenny arrived home at 9 p.m. that night.

Through all this we have had a circle of helpers to manage the overwhelming logistics of Bethany's care (the kids are on fall break), arrangements in the house to accommodate the hospice equipment and a quiet place for Kenny, the household management, and the unending calls from service providers for both Kenny and Bethany. Yesterday was a blur of trying to unpack and settle in after being away for a week, riding the waves of equipment delivery and hospice staff, tending to the emotional needs of all involved, and Kenny's care on all levels. We have round-the-clock nursing care for Kenny through Thursday at 8 p.m.

Those are all the facts I have energy to relay.

The beautiful part of the story is Kenny's grace. Never have I known such a man and I could never have wished for a more heroic husband. He faces his death with peace and no fear. He has the strength to speak the encouraging words to his grieving son, reassure him it is all right, smile through the sadness he feels at leaving and all the things he will miss in Daniel's life, and explain that the decision is in God's hands, not ours. He has no bitterness. He shares his love and gratitude with all of those around him. He has asked Daniel to play the piano for him and Daniel's music has blessed us all with its beauty. Bethany has been away or occupied for much of the last day and half but she has come in to make her patterns for Kenny and sing and give him a kiss; her presence alone is joy, nothing more is needed. Yes, we are all weeping for the goodbye that is coming but we are all so happy to be together at home and none of us fear Kenny's transition. The prospect of life without him is overwhelming but we will trust that it will work out, somehow. We are a family now, we will be a family after he goes, and this is just a stage of life we must go through together, unexpectedly early, suddenly, and sadly.

The list of people and the incredible acts of support are too lengthy to describe. Just know that we are surrounded by tireless compassionate support and we are grateful for all the acts of kindness that keep flowing in like a waterfall. My sister Karen has arrived and we have several friends who are rotating overnight stays to assist with Bethany. There are many arrangements to be made still, many moments to experience. It is a lot to process.

I have tried to give you as much information as I can in the time that I have. Please, do let others know who would want the news. Todd Walker, I hope your email address is working because he wanted you to be contacted. If you can contact Billy Skinner, that would be a help.

Kenny sends his love and appreciation to all and encourages you to read James Van Praagh's book Unfinished Business, and not to fear death. Kenny's is at peace with his life and, soon, his death.

Love,
Jen

From 10/15/09 Titled: Kenny has passed

Dear everybody,

Kenny passed last night at 2:15 a.m., peacefully and gracefully. There was no pain or struggle, thankfully. Linda and the hospice nurse were in the room with him for the early hours of the night. This was a gift Linda gave to me, to spend her night in the recliner so I could sleep in the bed, having peace of mind that Kenny was attended by family and not just a stranger. Linda came and got me when Kenny roused with several gasping breaths. I came immediately, touched his hand, and then left for the bathroom. He passed gently with one last quiet breath while I was out of the room but it did not matter to me, and Linda was still there with the nurse.

He had a full, satisfying last day and spent several hours in the family room with all of us while Daniel played some favorite piano pieces for him, Bethany made her walking patterns before going to the park with her teacher who was here helping, and the rest of us made happy conversation about him. We had ordered a high-back wheelchair but a low-back chair had been delivered instead. Well, it was an opportunity for me to serve: I stood behind Kenny and he rested his head gently on me for a long time.

Funeral arrangements are in the process of being made. I, or Circle of Friends, will send another message when the mortuary and other arrangements are known. We are approaching the task at hand in an unhurried and thoughtful way. I continue to have numerous helpers and I will call on more as needs arise. Tentative plans are for a service in Phoenix and another in Ohio, which I would attend with Daniel along with all the Ohio family. We hope to build in several weeks time to allow for travelers to get reasonable airfare rates.

Again, I ask you not to call or stop by the home, although I know that is a natural desire. It becomes overwhelming. Please also hold flowers if you have not sent any, as there is sadly little room in the house right now (thank you for those already sent!). When funeral arrangements are made, you may send flowers there if you are moved to so.

We are all ok. The only who doesn't know yet in the immediate family is Bethany, who is still asleep. The rest of us have been up since 2:15. Daniel and Linda have been catching naps. I have been visiting and beginning plans with Karen, Wendy, Steph, Cindy, and the nurse. Another nurse will be arriving at 8 a.m. and will be on staff here until Kenny is transported to the funeral home.

Thank you for all your love and prayers, and for the beautiful messages you have sent to Kenny. It is a sad time but I celebrate this wonderful man. He will be with me always in spirit.

Love,
Jen