Reclaiming Eden

Thank you all for your love and support and for following the blog.  This is the final entry we are posting from John's journal.  Love -- The Ritters

Politics and Fanaticism

One thing I do know, if the people who claim to be worthy of heaven, the ones with the 800 number to God, are, in fact going there, well, that would be my definition of hell. 

Recently, I’ve wondered if man were immortal whether things would be different.  Without the prospect of death, would we be more generous and caring of our fellow human beings?  Would greed be blunted or exacerbated?  I suspect that we have more than enough resources to alleviate most human suffering.  Is it our fear of want and life’s scary possibilities that drives us to self-centered absorption and, in extreme case, outright narcissism.  Actually, it seems to me that if we finally and fully put the lessons of cancer ahead of our mortality avoidance strategies, we could reclaim Eden.  Do those who live in the gated communities and the 1-percenters not understand?  No pile of money can stave aging and going to where, in fact, all men have gone before.  To me, the only purpose of life is to love and help others.  Don’t get me wrong; I suspect although I’ve tried, I’ve come up short.

On learning lessons from others (even in death)

I’m not saying that we tend to put lipstick on the pig, but might a person’s passing mean more with a bit of truth.  Might a bit of reality give readers a chance to consider someone they know who has a similar death-dealing issue and opportunity to gather up the courage to intervene.

Dead is dead.  Flowers, cards, expensive caskets, and bullshit eulogies may comfort the living, but don’t blunt or educate us to acting in their best interests if we care about preserving and protecting life.

Living and relishing life in “the grey zone”

Too often we view things as a matter of kind, of absolutes.  We tend to identify our world by distinctions of static extremes:  good and evil, happiness and sadness, right and wrong, and so forth.  In my reality, absolutes can be restricted to life and death.  All else is a matter of degree because all other things move on a scale.  Viewing the world in static absolutes restricts and confines us to the narrowest of existence and understanding.  Cancer underscores the fact that there is nothing so important in life than life and death.  Choices always exist though we may not perceive them.  While cancer brings the prospect of death most dramatically into focus, as long as there is hope, something to be done, I will live in the world of degree not kind.

Focusing on our strengths, not weaknesses

I had spent too much of my life focusing on a person’s annoying “shortcomings” than the admirable talents that they possessed and I simply did not have.

Expecting perfection in anyone, as in picking a negotiating team, sees shortcomings overshadowing exceptional talents and stunting our relationships with others.

Prayer to God

Suffice it to say that I do believe our only purpose on this earth  is to help each other.  If you grant me a bit more time, hopefully without too much debilitating issues, I will do my best to help others.  I know that I’ve come up short in many ways.  If nothing else, thanks for listening.  Amen.

John's Eulogy by Seth Ritter

            Before I wrote this, I watched my dad’s eulogy of his father.  It was not that long ago that he stood where I stand.  He perfectly summarized Clarence, my grandfather, both in content and form.  The eulogy was concise, modest, almost spare.  I hope that this eulogy is some small reflection of my dad and, to that end, it will ramble and be wordy, but hopefully with a message that underpins the storytelling.  If there is any music in my words, I credit him.  He taught me how to play.  If I fall short, it is due to my own fallibility, but I have lost my most important sounding board and editor.  He did leave two dictums in his journal, to which I will try to adhere.  They were:  “Tell the unadorned truth about me, maybe someone can learn from my mistakes,  that, and here I am quoting, “no bullshit.”

This is a profoundly sad day, but sadness is not all that I feel.  I cannot complain of the miracles that did not come, but rather celebrate those that did.  5 years ago my mom and dad first learned that Dad had an exceedingly rare and lethal form of cancer.  It took months of medical visits and dozens of doctors to figure out the exact type of cancer.  When he was diagnosed, there had been fewer than100 patients who had this cancer.  Most had all died quickly, living on average less than 6 months from diagnosis. 

Whenever dad would ask about prognosis, one of his doctors was fond of answering that dad was “an N of 1.”  Now my majors were psychology and Spanish, before I went to medical school.  So for everyone with an arts and humanity background, N is the number of patients in a treatment group.  Dad’s cancer was so unique and his treatment had never been tried for this type of cancer that he truly was an N of 1.  And that somehow seemed fitting.

My dad thought that he was dying 5 years ago, and given the facts, that was a totally reasonable conclusion.  He benefited from good hospitals and fabulous teams of doctors, nurses, and support staff.  Dad never was afraid to die; he was afraid to be living but not alive.  At first, he resisted undergoing treatment.  Ultimately, through persistence of the rest of the family and based more on hope than fact we prevailed upon him to undergo chemo and look for a bone marrow transplant.  I believe he thought treatment was futile, but he saw how much having that small hope meant to us.  For that, he acquiesced.  We called it treatment, but it was probably worse than any disease.  Still somehow, the horrendous treatment and the horrible disease fought each other to a stalemate.  His immune system barely existed and the cancer seemed to be in remission.

Against odds and exceeding expectations, he had 5 years free of disease.  He entered his 7th decade with a bourbon tasting party, he saw Mike and I get married, but not to each other, he met his first 2 grandchildren, and he had the grace to endure the latest in a long line of juvenile nicknames bestowed by juveniles.  My oldest daughter knighted him “Juan John Triceratops.”  When she gave him a triceratops pillow pet for Christmas for Christmas, he just smiled and thanked her.  He drank bourbon, actually when he went into the hospital he was cask aging some un-aged spirits distilled in this state, a proud if anachronistic Pennsylvania tradition.  He sat on his patio in a plastic chair, he drank bourbon and snuck cigarettes, and enjoyed shooting the shit with anyone who was visiting or happened to call on the phone.  He grew some of the best citrus that Pennsylvania has ever produced and mind you, he made custom dirt and fertilizer for each type of plant he grew.  He laughed too loud and too long at his own jokes, some of which were actually funny, but his laugh was always funny and it was infectious.  He was absolutely inseparable from my mom and took frequent road trips to visit my brothers, me and my family, and his beloved cabin in the Poconos.  As he points out in his journal, he had 5 more years of birthdays, holidays, and family occasions.  He did exactly what you are supposed to do with borrowed time; he lived the hell out of it.  He also spent a lot of time organizing and managing things to make it easier for all of us, when he wasn’t here anymore.  Even in his reprieve, he knew that day would come too soon and he prepared for it.

          What is remarkable is how little in my dad’s life view changed before and after Dad’s diagnosis.  As you all know, Dad was a teacher during the week.  Over weekends, he bartended.  He worked 2 jobs for most of my childhood, but never at the expense of playing with us or taking us to soccer practice.  He never complained and he didn’t take a sick day for 30 years.  On the contrary, I saw him bartending at the Anchorage and I had him twice as an English teacher, he was upbeat in perpetuity, always enjoying the moment, and picking his opening to casually drop something profound.   I remember him taking on the character of Dr. Evil during one of my English classes to draw out a quiet student.  I remember him singing Robert Palmer’s “Addicted to Love” to raise money for Key Club which he advised for many years.  He had several backup dancers from the English department, as I recall it, most of them were women.  Who else would choose the Honey Badger as his cancer blog’s mascot?.  He never worried about how he would be perceived.  He was always up for anything, if it was good for a laugh, or for a good cause.  He was willing to try something a little unconventional if it might reach a detached student, such as myself in high school.  He was a person who ran towards responsibility and applied himself selflessly and tirelessly.  After my brothers and I had left for college, he took care of his parents, visiting them daily, cooking for them, laughing with them, enjoying their presence while it lasted.

          He had an earthy, timeless wisdom and patience that seems to be in ever shorter supply.  It was the kind of wisdom that comes from having family roots to an area that go back 300 years, and seems to be born of a close relationship with the earth and growing things from it.  He also had an erudite, well seasoned, literate intelligence.  He was able to, seemingly at will, greet any happening with a germane reference to poetry, Shakespeare, or something more obscure.  What is all the more remarkable is how he chose to apply these talents.  He mentored newbie teachers, students, and student teachers.  He talked to us as though we were on his level and subsequently, he dragged many of us closer to that level.  He helped friends in need.  I have a early memory of one of dad’s childhood friends sleeping on our couch for several days.  Although I didn’t know it and my parents explained only that he was sick, I now realize that he was withdrawing from alcohol.  He years ago died during another bender.  Dad always had a special place in his heart for cases that others considered lost, whether long term lapsed alcoholics or punk rocker students at lit mag.  I thought that this was just how people behaved, until I got to college and learned otherwise.  Perhaps  it is the way more of us should behave, more often. 

          Dad had vision; he saw things in people that we ourselves didn’t always see.  It wasn’t that he didn’t see the warts and shortcomings that we all possess.  He did, he expected it, he just didn’t let our more annoying features be his entire impression of us or cause him to discard us.  Dad was a bartender who ran an alcohol and drug support group at the high school for many years.  He saw the world as it was; he saw the grey in the world and he reveled in that stratum.  His treatment of a person was independent of your status as a sinner or saint.  He knew none of us were saints, but he loved us anyway.   In reading his journal, I came to know that this wasn’t innate disposition, it was a conscious choice he made.  It is a choice that I hope to emulate.

          One of the most amazing traits my dad had was to tell people exactly what he thought about any subject, anytime.  His positions were well reasoned, researched, and supported.  He did not always win his opponent to his point of view, but he nearly always won them to his side.  To be friends with so many people with distinct points of view, to have that friendship arise from mutual respect.  I always felt that embodied his heritage so well.  Ritter means knight in middle German and dad was willing to fight with uncommon determination when he felt it important.  But he also followed that tradition that drove our ancestors to this area:  he struggled for peace and tolerance, he helped the poor and disenfranchised; he held to his own code, which was above all else predicated upon love.  Although he largely was lapsed from formal religion, he better embodied the ideals espoused by all major religions than anyone else I knew.

.         Dad was a father, grandfather, son, brother, and husband.  He was a teacher of many things, a mentor, and a cherished friend.  He was in his own way a farmer, as our people have been for eons.  But he was a farmer of both plants and a farmer of men.  He cherished new growth whether on a peony or a person and he encouraged both with equal verve and dedication.  If life force was all that were required to live, we would have had him until I was a grandfather many times over.  We do not get to choose when or how we die; we only get to choose how we live.  We can cry today, but do not forget tomorrow to live, to laugh, to enjoy a sip of bourbon when appropriate.  Don’t forget to help each other, more than anything, he believed in helping people.  His impact on me and so many people will ring through generations yet to come.  He was well loved and lived well.  Truly, John Ritter was a good man.  

-- Seth C. Ritter

Cancer as a Battle

… as you read this, unless someone has spoiled the ending, I do not know how this will end.  Will cancer be the means to my end?  I fear that it will be.  But then, if you’ve had cancer, that is what you live with day in and day out; although, as I said above, in remission it did not dominate my days.

Cancer as a battle

Battling cancer has a rhythm not unlike descriptions of war as written in Red Bad of Courage and other such chronicles.  Often, the patient, like the soldier, faces the long lulls between battles with little but redundant preparation overshadowed by anxiety.  The soldier cleans his weapon; the cancer patient reviews appointments and the logistics of keeping them.  The soldier counts his bullets, the cancer patient checks his meds and makes spreadsheets to keep track of them.  The soldier wonders how he will face the possibility of imminent death on the battlefield; the cancer patient contemplates how he will handle a diagnosis bereft of hope.  I have never been a soldier - for that matter, neither was Stephen Crane - but I have to think that a soldier’s situation at least has the possibility of a merciful and quick exit.  Even the most deadly and least treatable cancers like pancreatic, leave the patient with the prospect of knowing that there will be no “luck of the draw,” and in six months - give or take - a slow death will most assuredly and inexorably come.  Nevertheless, like Henry, I feel I have arrived at that place where, . . “He knew he would no longer quail before his guides wherever they should point.  He had been to touch the great death, and found that, after all, it was but the great death [and was for others]. . .”  May I have the will, pride, and endurance, not to whimper into that good night.

Endurance and Hemingway

I’ve always believed ala Hemingway that “Life is a battle.”  You win some and lose some, but ultimately, we all know that we will lose the war.  Welcome to mortality.  Beyond that, I always liked the idea that you face whatever comes your way with will, pride, and endurance, the Hemingway Code.  The fact that he chose to put a shotgun to his head notwithstanding.

This much I do know, when Hemingway said life is about living with will, pride, and endurance, well, will is an ego laden illusion.  I remember Michael Landon, diagnosed with pancreatic cancer, declaring on late night television that he would “beat it.”  As I recall he did several one arm push-ups to demonstrate his presumed strength.  He succumbed within a few months.  I know from experience, when I am feeling reasonably well, the confidence that imbues.  But, as in battle, running into a hail of bullets, is foolhardy if not insane.  In regard to pride, well, anyone who has experienced any medical condition requiring numerous visits to the docs, knows that pride is the first thing to go out the window… Endurance makes sense.  Possibly, if Hemingway had heeded his own prescription, he might have found the courage to face life.  Whenever I find myself looking too far down the treatment road, I become very disheartened.  Then, I recover the sense that it is about looking at the ground immediately in front of you, just as you should live the moment, and doggedly taking the next step; and then the next.  It’s about endurance; nothing more, and nothing less.

Hope and Resignation

If a cancer diagnosis has some singularity, and I believe it does, it forcefully underscores life’s fragility…More importantly, I realized how many things have been left unsaid because I’d get around to it – there was time.  But, cancer informs you that you don’t really know there will be.  Unlike vicarious experiences, cancer screams “You are mortal.  You will die.  I’m no joke.” 

Night after night since the ominous skin legions appear and began marching across my forehead, chest, and now arms, I slept in a way I don’t recall ever having slept.  Deep, dream-filled, and unbelievable sleep.  Is this what a man experiences who’s been sentenced to death, has the execution date set, and  is given a reprieve?  Resigned to his fate, he sleeps.  Given a reprieve, he wakes again to the possibilities?

Cancer dominating life versus living the moment

Cancer has made me acutely aware of the fact that so many things we do and assume we will continue to do are not necessarily in our future; in fact, living is not about the future…

Understandably, once diagnosed, I think we tend to let cancer dominate our lives.  But life is not vested in anticipation of death being far down the road, life is about the here and now.  Only in savoring each moment aware that there may not be another are we truly living.  So, besides a loving family and some incredibly and indescribably great relatives and friends, my edge remains in knowing that staving off cancer is a means to the end of gaining a few more moments.

On Chemo Treatment (Humor and Equanimity)

“ … cancer sucks and chemo sucks, and why the hell are there no drugs that feel good and kill cancer.”

Conversation with his hairdresser after 2008 chemo treatment:

Hairdresser: “But you were grey, almost white, and your hair was curly and course.  Now it’s chesnut, straight, and fine.”

John: “Yup.”

HD: “How’d that happen?”

J: “Color by Chemo.  I don’t recommend it.”

Conversation with dermatologist when first lesions appeared in 2008

On March 21^st, I met with the dermatologist, who examined the area and seemed quite bemused.  This doc was probably late forties or early fifties.  Clearly, he had seen skin lesions of numerous types, and yet, “What is it?” was repeatedly met with “I don’t know.”  I remember joking that his group should change their sign from “Advanced Dermatology” to “Not So Advanced Dermatology.”

Comments and conversations about chemo’s crazy toxicity

2008 Chemo treatment (escaping the chemo ward)

We decided to go to the courtyard.  As we approached the elevator, a nurse came running toward us and with some apparent consternation asked, “Where are you going?”  We told her that we were going to the courtyard for some air.  “You can’t do that!” she responded in an urgent tone.  “Why not?”  I asked.  “Because, if your chemo bag broke or leaked, we’d have to call HAZMAT.”  She wasn’t kidding.

2008 Chemo treatment (sneaking away from sleeping Lynnee)

I don’t recall, I think Lynn stayed over and slept in a chair that night.  During the course of the night, in addition to the chemo, I was feeling the effects of nicotine withdrawal.  With the first dousing of chemo complete, I had only a saline drip hanging.  So, I asked the nurse on shift if I could bum a cigarette (she smoked), go to the courtyard, and quell my nicotine DTs.  “Absolutely not,” she said.  “Cigarettes are bad for you.”  “Yes,” I said, “But really, you are pouring chemicals into me that should they leak, you’d have to call a HAZMAT team to clean up.  Really, how much is a cigarette going to impact my chances of survival?”  I still find that whole memory surreal.

2008 Chemo treatment (the infamous “double flush”)

More recently, I was given an obligatory, “Instructions for Oncology Patients” handout.  It included symptoms and a standard “Please call your Doctor or Home Health Nurse if you have any of the following occur when you are home” sections.  Nothing new here except and in bold-faced type, “Double flush your toilet for 24 hours after receiving chemotherapy.”  I had never seen that before.  So, I queried the nurse about it.  “What’s with the double flush thing?” I asked.  “It’s precautionary,” she said.  “Might residual chemo hurt a pet if it drank out of a toilet that was flushed once?”  Again, she responded, “It’s precautionary.”  “Yeah, I get that, but we don’t have a dog and, as far as I know, my wife hasn’t drank out of the toilet for many years now.  Could the chemo pee or poop eat through the porcelain?” I asked.  “Look, it’s just precautionary,” she said again.  “Might someone using the same once flushed toilet have their pubic hairs fall out?  Or, will the single-flushed water generate a chemical chemo hand that grabs a user’s genitals and pulls them in?”  In short, I never did get beyond, “It’s precautionary.”  I’ll keep on it and let you know… The double flush remains a mystery.

"Go On"

Much has been written about cancer, and I have read a good bit of it.  Most of it I did not find useful or true to my own experience.  Some writers advised keeping a positive attitude and thinking positive thoughts, although the studies suggest that a cancer patient’s attitude does not impact outcomes.  Some discussed the anger and the “Why me?” they experienced that followed diagnosis.  This, as well, I did not find to be my experience.  (I’ve always believed that “shit happens; we often have no control over it; and, you deal.)  Still others discussed that even in remission and five, ten or more years down the road, they never escaped the specter of cancer; it taints their every day and many moments of each day.  I did not experience this either.  Other friends have even told me to pray and read the Bible.  I have read the Bible, somewhat, and even prayed, not recently, but just what might I gather if things turn out well?  God favored me and rewarded me for prayer?  And, what if things go south?  God ignored me or doesn’t exist?  Yet others offer, “What doesn’t kill you, makes you stronger.”  That’s just bullshit (See Christopher Hitchens’ essay published in Vanity Fair four days after his death from esophageal cancer).  Above all others, the stance I find most annoying is that, “cancer is a blessing.”  Sorry, but survive as I have so far, that thought and the justifications for it never had resonance for me.  So, I begin my story with a very real question of why bother at all?  And, honestly, at this point, I don’t know that I have an answer, or will, even if I go on from here.  But, go on I will, because if cancer has a lesson, going on, just as we do when no dark clouds of mortality are looming on the horizon, is it.

-- John R. Ritter

John's Obituary

Here is John's obituary which will be in The Morning Call tomorrow morning.  We are organizing some of his journal entries for posting.  With love, the Ritters.

John R. Ritter

   John R. Ritter, 62, of Neffs died April 16, 2013 at Jefferson Hospital in Philadelphia where he received the very best of care for complications related to a bone marrow transplant for cancer.

   John was born and raised as one of a family that settled in the Lehigh Valley in 1731. Clarence and Arline Ritter, his parents, eventually moved to Allentown’s West End where he attended Muhlenberg Elementary School and Raub Junior High and graduated from Allen High School in 1968.  He was proud of his Pennsylvania Dutch heritage, a student of his family’s history and a believer in the values he was taught.

  He attended Amherst College in Massachusetts, later graduated from East Stroudsburg University, worked at various jobs and then decided to teach high school English.

  He loved his students and worked hard to create a caring and challenging learning environment for them. He retired in 2010 from Parkland High School after teaching for 30 years.

  Because he cared about his colleagues and his profession, he was active in the Parkland Education Association as a building representative, negotiator and president. He was also active in the Pennsylvania State Education Association.

  John’s interest in politics went far beyond education. He believed that Pennsylvania needed common sense solutions to problems that would preserve the quality of life that he experienced while growing up and so he ran for the Pennsylvania House of Representatives in the 187^th district.

  He loved the outdoors, especially a family home in the Poconos and his big back yard where he could care for a large garden

Survivors

   John is survived by his wife Lynn (nee Burner); sons Dr. Seth and wife Rebecca Taylor of Pittsburgh and granddaughters Annabel and Eliza; Michael and wife Meredith Mulcahy of Boston, MA; and Zacchary and Sharon Tang of Baltimore, MD.  He is also survived by his brother Dr. Robert C. Ritter and wife Susan of Viola, ID and their sons Joshua and Lincoln of Brooklyn, NY.

   He is survived by the loving Burner family; father-in-law and mother-in-law George and Marie; brothers-in-law George Robert, Harry, and Gary and their families.

  And he is survived by his aunt Miriam (Unangst) Ritter and cousin Robert V. Ritter and wife Susan and their children Robert V. Ritter III and Sara, all of the Lehigh Valley. Cousins Judy Labenburg and Carl Schmoyer, wife Deborah and their family mourn John’s death.

Services

   Friends and family may visit from 6 to 9 p.m. Friday, April 19th at Trexler Funeral Home at 1625 Highland Street, Allentown and from 9 to 10 a.m. the next day.  The service will begin at 10a.m. in the funeral home following the calling hour. Interment will take place at St. Paul’s United Church of Christ Cemetery in Trexlertown after the service. Online condolences may be made at www.legacy.com/obituaries/mcall/.

Contributions

   In lieu of flowers, contributions may be sent to Christ Lutheran Church, 1245 Hamilton St., Allentown, PA 18102.

4/16

Dear Family and Friends, John's blood pressure medication was discontinued this morning and he died peacefully at 3:30 this afternoon when his heart stopped beating. He died as he lived - brave, strong, unafraid, acting in love and concern for others. Lynn, Seth, Michael and Zacchary were at his side. John's obituary will be posted at www.mcall.com . Please say a prayer to speed him on his way to peace and joy; and, do something today to honor his life and in remembrance of how he enriched all of us. Please continue to follow the blog. As soon as we can, we will post some excerpts from John's journal. Then this blog will have something written in John's voice about life and how to live it even in the face of an insurmountable illness. Michael has fixed the blog if you would like to leave a message of your own. His Loving Family

4/15

4 John's dialysis has been discontinued. He is sleeping without pain, waking up only occasionally. We are still reading him your messages and reminiscing about all of the great times we have had and everything we have learned from him. Prayers are still very much appreciated.

4/14

John is in more pain today. The frequency of his pain medication availability has been increased. He appears to be resting comfortably on the pain meds but it is making him tired and sleepy most of the time. John's nasogastric tube has been removed which was a major source of discomfort and irritation so he should be more comfortable that way too. John's blood sugar readings have been consistently in the normalish range so he no longer needs to be tested for blood sugar. That is also a great relief; he really dreads being pricked for blood and then being injected with insulin when it is needed. His blood pressure cuff only has to inflate once every 30 minutes now instead of once every 15 minutes. That might help with the edema which is beginning to collect in that arm. John is well loved by all of us. He enjoys hearing the messages on your emails, cards, pictures, notes, etc. He is extremely well cared for. The nurses, doctors and staff at Jefferson are amazing in the best possible way when it comes to patient care. Michael, Zacchary and I are here with him today; Seth is joining us tonight. You are all in our thoughts and prayers as we know we are in yours.

4/13

Yesterday John got a new trach because the old one was leaking air and making a lot of noise. This new one is much better. The medical staff also found a new infection yesterday so John is back on vancomycin. Things are stable here for the moment.

4/11

John is responding well to the antibiotics and increased steroids. He is a lot more awake, using a little less oxygen from the ventilator to keep his blood saturated, and needs slightly less pressor. Yesterday, the pressor was changed from levofed to phenylephrine because John had an episode of rapid heart beats. Levofed can be associated with cardiac abnormalities; phenylephrine isn't. These are very small improvements which may depend on the continued effectiveness of the antibiotic. If the pseudomonas becomes resistant to the antibiotic, these improvements may not last; and continual use of the antibiotic is very likely to cause the pseudomonas to become resistant. Thank you to everyone who is doubling down on the prayers, good wishes, cards, messages and long distance hugs; we deliver them all to John and he loves every single one of them. One of our treatment goals is to be able to talk with John. Respiratory and Speech have some ideas on how we might be able to accomplish this. John is still working hard to tell us important things and we are still struggling to understand. John had a great time with our sons for the last couple days. Seth has been in and is able to collaborate a bit with the doctors, nurses, techs and specialties on some ideas to help John. Michael sent a cd of many of John's favorite songs with a great cover picture from healthier times. It was a visual and auditory special gift. Zacc was up from Baltimore and had the excellent idea of putting John's glasses on him. John is enjoying being able to see better. We're hopeful for a time when those of you who would like to visit will be able to.

4/10 part II

for those who want to send cards or pictures of themselves with John or any pictures you think will trigger special memories for him, guess it would help to have our home address - 3732 Park Ave, Neffs PA 18065. And, thank you in advance.

4/10

The antibiotics and increased steroids are working their magic. John's temp is down and he needs less blood pressure medication. He looks comfortable, is breathing with much less effort and is more awake this morning. This isn't an unqualified success; for that John needs to be able to do this things without meds; but, we are happy for the improvement. Yesterday was a very rough day. An old school friend contacted us recently with some reminisences about John's prowess as a kick ball player in elementary school. As I relayed the message to him, it made me think that he might enjoy any pictures you have of him during his school years; even better if it is a picture of you and him. If you have any class pictures or others you are willing to temporarily part with, I would love to show them to him (and, I will get the originals back to you.) Thanks as always for your good thoughts, prayers and messages that are medicine to the soul and that help pass some very long days.

4/9

John needs more of the blood pressure medicine and more help from the ventilator to breathe today. He spiked a temp overnight; the medical team restarted the antibiotics this morning. The steroid dose has been increased to help with breathing. The tube feeding had to be stopped this morning for some extra digestion time. I wish there was some good news to add; the most I can say is that John is so tired he may not be aware of his pain. I hope to have better news in the morning.

4/8 part II

Now that John is back on the levofed to help maintain his blood pressure, he isn't stable enough for surgery to assess him for the peg tube and debridement. We will wait for a few days to see if John can begin maintaining his own blood pressure without the levofed. It's uncertain what this means. It is possible John has another infection that is affecting his blood pressure. Blood cultures have been drawn and sent to the lab; we will see whether the results indicate there is another infection. Even negative results don't completely rule out an infection; John's antibiotics may mask an infection. And, the steroids suppress body temperature so even though John's temp seems normal, it is possible that there is still an infection there. Patients on tube feedings can build up a high sodium level so John was getting a little bit of free water prophylactically to help avoid that. John's sodium level dropped with the free water so it was discontinued and now his sodium levels are almost normal. John has been dealing with low sodium for a while now. Our original treatment was to let me salt his food and then he was on salt tabs. So, it's not really a surprise that the sodium levels dropped. Let's end on a good note tonight. John is still doing well on the pressure support setting of the ventilator; the edema is gone; CMV numbers are down; there is no gvhd rash; the pneumonia isn't worse. Send good thoughts and prayers for John to be able to get off the levofed, that there are no new infections, and a special request for the recovery of brother of honey badger. John wants his brother to be better soon.

4/8

So, a correction. Patients often experience that positive pressure/decreasing blood pressure effect on the pressure support setting of the vent. Blood pressures typically rise on assist control; John has been doing just the opposite. A contrarian - who would have thought it... To keep his bp in a good spot (map of a least 65)John needed a pressor for about 2 hours; last night he needed it all night long; and today he needs it even on pressure support. I don't know how significant this is or what might be causing it; hoping to talk to the drs later and learn what their ideas about this are. Back on pressure support today; John looks very comfortable. A next possible step in weaning might be to lower the oxygen % and/or the pressure a little to see how he does. Right now he is still on morphine pretty frequently so we might not create that extra stress right away. That's it for now; sorry for leading you astray with yesterday's posting.

4/7

John continued his streak on the pressure support setting of the ventilator today. He has been able to comfortably tolerate that setting for 9-12 hours a day for the last 4 days while maintaining his blood pressure and oxygen saturation. At night, he goes back on assist control where the vent does more of the work and John can get a little rest. Curiously, John's blood pressure has dropped the last two nights while he has been on AC. Speculation is that when the ventilator is doing the work, it increases the pressure in the chest cavity pushing on the veins and diminishing the amount of blood they return to the heart; and that reduces the blood pressure. John has needed small, sub-minimal doses of the pressor levofed for the last two nights to keep his blood pressure up where it belongs. He doesn't need any help during the day while he is on pressure support. Not sure if this is going to delay a transition to intermittent dialysis which requires the ability to constantly maintain blood pressure; we will talk to the kidney docs and see what they think. Respiratory today said that John was moving a lot of air in his lungs. That's good; when the pneumonia was at its worst, there weren't a lot of air sounds. John had a lot of secretions yesterday which were removed with frequent suction. Today, his nurse pronounced that he sounded a lot less "junky" which I am convinced is a medical term since I have heard several nurses and doctors make that assessment. John's weight is back to 170; that was his weight when he was admitted to the hospital. So, while it is painfully thin, it does mean the edema is finally gone. John is alert more frequently for brief periods. That is great to see but also means he is more aware of his pain. Even though it is carefully managed with position changes and meds, it is clear he is often in pain. PT is still working on range of motion; and this week surgical trauma may evaluate John for a peg tube and for surgical debridement of a large and deep bedsore. If it's a go, John will be able to get more nutrition with less irritation and that should help the healing. The air mattress also helps as does the frequent turning. It's just hard to avoid skin break down when you're confined to a bed for weeks at a time. The night staff shaved off all of John's beard which must be much more comfortable for him. He looks like his old self with his ruddy complexion and black hair coming back. Thank you for the continuing prayers, good wishes, cards, pictures, anecdotes, and emails. We look through them together each day as I deliver your encouragement to him.

4/4

John had good days yesterday and today; he was able to comfortably be on pressure support for about 9 hours each day. This is a first small step towards weaning from the vent if he can remain comfortable on pressure support and eventually move to the trach collar. A first today was permission to have an ice chip several times an hour; John really liked that. It was the first thing he had to swallow for more than a month. Speech and swallow will be back when John is alert for longer periods of time. His pain med has been changed to morphine which makes him a little tired. Next steps may include insertion of a peg tube into the stomach or small bowel for feedings. Then the nasogastric tube can be removed which should make John much more comfortable. It will also permit bolus feedings so John can get some extra nutrition which is important for healing. When the trauma surgeons assess John for a peg tube, they will also assess John for surgical debridement of the bedsore which is deep and pretty extensive. For the medical people out there, it is at least a stage 3 decubitus meaning it penetrates the epidermis, dermis and into the subcutaneous fat layer. Surgical debridement with a wound vacuum would help it heal a lot faster than debriding with the santel cream. Surgical debridement will be painful but John will be appropriately supported with pain medication. The sores on John's legs are slowly healing. These steps could happen as early as this coming week. John is making and maintaining normal counts of white blood cells without growth factors. This is an indication that the bone marrow transplant is working. He still needs frequent transfusions of rbc and platelets but that is not uncommon for the kind of infections and complications he has. The edema continues to improve as fluids continue to be withdrawn with the continuous dialysis. Some great comfort measures are a consult with podiatry to take a look at John's nails and a beard trim under John's neck. He looks much more comfortable thanks to the nurses and staff. In spite of John's progress, there was sobering news today. John's overall prognosis is still poor. The statistical approximate chances of surviving the kinds of complications John has in multiple systems is about 10%. If John can recover, there is a substantial possibility of needing dialysis indefinitely. And, even the quickest recovery would take at least a couple of additional months. So, we need your prayers and good wishes more than ever. If you have any pictures or notes you want to send, I will be sure to share them with John. He does enjoy hearing from all of you.

4/3

Some good news is that the CMV numbers are all the way down to 300; they were at 1800 last week. No reports on the pseudomonas and fusarium infections although we are down to one antibiotic for each of them. A set back is that today John needs the ventilator to help with his breathing. He was on pressure support for 3 hours yesterday but couldn't tolerate more than that and was too tired today for pressure support. The bedsore is still terribly painful but it does have some granulating tissue around the edges; it is trying to begin healing. The speech and swallow team was here to begin their evaluation; they still have some follow up to do. PT is working a lot with John on range of motion and he is trying to help. John is pretty tired this evening, but the nurses tell me last night he asked to go home, this morning he said Good Morning to Donna, and this afternoon he was able to ask for a specific med (ativan) to help him get through the dressing change on the bedsore. He was able to communicate all of this by mouthing the words; he won't be able to talk until the vent can be capped. Thank you all for the cards, emails, pictures, and special gifts. I tell John all about them and all about you every day.

4/2

John was very alert this morning and trying really hard to communicate - in paragraphs, his usual form of communication! However, the lip reading is still nearly impossible for me so I can't report much. The night nurse says he mouthed he wanted to get out of bed and to go home. These both sound like very plausible statements from John even if we are not quite there yet while still hooked up to the ventilator and the continuous dialysis. Respiratory was able to put John on pressure support today; yesterday he was still too tuckered out for it. This is the beginning phase of weaning off the ventilator. Eventually they will be able to put a plug (there's a better technical term but I forget it) in the trach so he can talk and maybe even swallow. It will be great to be able to understand what he is trying so hard to communicate. Right now the spelling boards still require too much effort on his part but they will eventually be useful too. Once he can talk to us, there may be more to report than is appropriate for the blog but that would be a good sign of sorts too. Renal says since he had a hypotensive spell this weekend, they are not ready yet to try the intermittent dialysis but that will also eventually be in the future. They continue to pull off fluid through continuous dialysis in the meantime; the edema is much improved. No news yet on the new pseudomonas readings but the ceftaz has also been discontinued so we will hope that is a good sign. OT was in to see John yesterday and PT is scheduled to continue working with him. The Speech and Swallow team will also evaluate John but we may have to wait until he can be off the ventilator without distress like rapid respirations and rising CO2 levels. They did come to see him twice last week but he was too lethargic at that time for an evaluation. Hopefully his periods of alertness will continue; the down side of that is when he is fully aware he is also fully aware of the pain particularly of the very deep and extensive bedsore. I'm afraid the level of frustration will increase in direct proportion to the level of being wide awake but we will deal if that is part of the healing process. Visits from Michael and Meredith, and Zacchary and Sharon, and a very encouraging postcard from Seth and Rebecca were most welcome this past weekend. If you are inspired, please feel free to send a note and/or pictures to share with John until he is ready for visitors beyond the immediate family. That will be a while.

4/1

No April Fool's Day jokes here. John still has the pseudomonas infection and is still being treated with ceftab and amikacin for that; the vanco is being discontinued. For the time being, respiratory is giving him a bit of rest on the ventilator until that infection begins to clear. Respiratory is trying pressure support again around noon today to see if he can tolerate it. Lately, his respiration rate and CO2 levels increase when he is challenged so if he doesn't do well on the support setting, we will go back to the assist setting where the vent does more of the work. The speech and swallowing team will be back in action once John can be off the vent more. John is much more alert during frequent, short periods now that the CO2 levels aren't as high. The communication board is still a bit of a challenge but we might begin to get to the point where that will be useful which would be a true gift. Right now John mouths words in an attempt to communicate but I am not very good at lip reading. His nurse today did figure out that he was asking "how much" when she told him one of his current meds was tacrolimus. Great sign of John's cognition to recognize the name of the drug and to remember that the amount was frequently titrated to produce the correct amount of immune suppression; great work by Julie to figure out what he was asking! John's belly is better; his tube feedings have been increased to 70 ml/hour and he is absorbing them fine at that rate (which is very near the previous goal rate of 75 ml/hour). He is also being supplemented with minerals and electrolytes to help the healing process. It would be just great if the bed sore could start to heal a little more; that is a source of quite a bit of John's pain. All other systems working as well as they have in the recent past. Hope to be able to deliver good news about the psedomonas infection (which seems to be one of the primary concerns at this time) soon.