My son in the ICU: Doctors…They are only human.

Early October, 2013

He continued to thrive, relatively…always relatively.

They just kept treating him as they’d been treating him. The anti-fungal that I fed into his feeding tube into his stomach each day was apparently doing the job. He needed less everything as each day passed. Less pain meds, less blood, less platelets, less dialysis, less tests, less vitals taken, less care. It seemed about a week or so passed of doctors ….waiting….waiting….for things to take a turn for the worse.

That didn’t happen. He had More energy, more self-care, more conversation, more movement, more good “numbers”, more stability, more predictability, more healing, more Intention every day. He was waiting for a room to open up on the Bone Marrow Transplant Unit. He required ALOT of care, but no longer needed Intensive Care.

Cory and I or Cory and his visitors had meaningful or meaningless (which was just as valuable) every day. We told him about the Do Not Resuscitate Order. I apologetically told him why they recommended it and I signed it. He told me it was okay….that under the circumstances, we all did what he would of wanted. Then he said, “That’s why I had You sign that paper.” [the medical power-of-attorney….at which time I signed, I never dreamt I would be called on to use].  He consulted the doctors and all felt it would be prudent to revise it under the strange circumstances that he was improving. (It was an absolute Relief to be able to have his say in his medical decisions again. A Relief.) They took the DNR order off.

A Doctor said: “This has never been reversed. I will be honest and say that we don’t understand it. We are meeting every morning (like, 8 doctors…and if you include the residents, well, it’s ALOT of doctors) to decide where we go from here.” I could feel the doctors being more “careful” with what they said to us. There was some dissention in the ranks and they became cautious not to pass that on to us, which we appreciated, but could still sense. Until…

He got a new round of Fungal blisters early October. The month-old ones from the first round were drying up, healing. These new ones came in with the same vengeance and pain that the first round did, only this time we knew immediately what they were. The doctor teams rotated in that day, one by one at different times in the day. They upped the Anti-fungal, they upped the pain meds. Once again, he couldn’t be touched or moved without off the charts pain.

Cory said to me when I asked him if he wanted another ‘push-of-the-button’ pain medication hooked up to his IV, “I want to be Awake.”

I said, “You need to be comfortable, not in pain. There is no need for you to suffer.” He said again, “I want to be Awake.” He did not want to go again into the abyss of pain medication.

“Then we will take the pain meds slow. Can I give another push…you are hurting.” I said. The moans and the groans and the crying out when we or the nurses had to touch him to care for him. There is NOTHING like seeing your child in this level of pain. Nothing.

But, this was not about Me. And as long as he was capable of giving intelligible instruction on his care, we would all respect it.  He was my son, but had grown into a man through his cancer journey. If possible, things would be up to him.

“Yes, push the button.” , he finally said. Through the day we figured out when to give him extra pain meds if certain procedures were occurring, and to back off when he was at rest. So he could be Awake when he wanted to be, and somewhat comfortable when he had to be touched.

In came Kidney, and ENT, and Cardiology teams…..one by one coming in to lift the sheets and look at the new blisters and say, “mmmm, mmmm, mmmm. ” and purse their lips, and then look up at us with the hopeless look in their eyes we’d seen the first time around.

Then, in came Team Infectious Disease. New Face on Rotation that was on last time around, and this is what he had to say: “We can save his life.” He said the magic words. He was like….20? (not really, but that’s how anyone under 35 looks to me these days). “How?”, I say. “He needs Ambisome…..” then rattled off some statistics that I didn’t even hear because I was having a flashback to the Oncology unit when Cory had an Anaphylactic reaction to Ambisome and blew up like a balloon and his lips turned purple and he couldn’t breathe and they slapped a Big Red bracelet on his arm that he still wore that said AMBISOME on it. Aaaaaaand, I was like….see the bracelet? without saying it, just pointing, like duh, don’t- these-bracelets-mean-anything-to-you? He CLEARLY can’t have Ambisome….it could kill him. Yeah, and? “The fungus will kill him.”, he said.

Here we are again. My head is literally spinning. I can’t even manage to put a simple postage stamp on the 25 addressed Thank-you cards (in my junk drawer at home that I wrote 2 years ago) and place them in my mailbox…..and this doctor wants me to understand his point from the 10 words he’s just given me??? I simply said, “I don’t understand.”….which it turns out was exactly what he was waiting for me to say, because then he started to explain….

There was an Allergy team of doctors….another team….that could do this thing called “Exposure Therapy”.  From my understanding, little by very little, they introduce the allergen to the body under supervision, giving the body time to develop immunity and accept it instead of rejecting it. He said we should do this, because the digestive anti-fungal we’d been giving him has been halted by many digestive issues blocking absorbtion. Ambisome would not experience this problem in the bloodstream. And the exposure therapy would make it that he could receive it. OK, great!!!…

But then….In came team Bone Marrow Transplant team (these were the Cheerleaders, the positive, glass 3/4 full docs…..I imagine, because BMTransplants are a relatively new  lifesaving discovery (like 30 years)….it’s all hopeful. Just surviving is hopeful.) They’d been with us from the start, we trusted, and they felt like family. Buuuut…..they were not my go-to cheerleaders in this circumstance. They didn’t buy the Infectious Disease Team’s strategy. “He might not survive the Exposure Therapy. I don’t feel comfortable signing off on that. It’s UP TO YOU.”

(Wait, can we have a debate? With both teams in at the same time? I will provide podiums….please??!!!)

I wanted to say, “WHAAAATTTT??? Up to us? How is this medical decision up to us?? You are the doctors! TELL me, collectively, what is best for my son, and I will believe you becauseyouareDOCTORS!!!!!”, but I didn’t say anything. All the panic was safely in the confines of my head.

RV-AO258_DOCTOR_G_20140829105746

With concern in her voice,  she said,  “Call me when you’ve decided.”  I can still remember the moment of realization that Doctors were human. Praise God for them, praise be…they are the only reason my son was with us, but they are Human. My heart went out to their struggle. I stared at the phone for a couple minutes, shut my eyes and said a little prayer. I breathed and breathed when I wanted to scream and scream, but I was in the room with Cory, so I didn’t.

“Not happening” was what my brain said, but it was. I googled and googled and thought, “There is 1000 years of education in this hospital and I am googling a Cliff-notes version to help DECIDE what path of medical treatment to head down for my son???”…..HUH? At that moment, I felt that my life, as I knew it, was a scam.

I was still the Power of Attorney because of the amount of pain medication Cory was on. I was still the final say. But I knew when Cory was Him, so we made a commitment to make his opinion all we would ever vote for, even if we felt differently (which thankfully never happened). We made a commitment to being His advocate. HE was in charge of HIM and I wanted him to know that.

We had to get Cory’s opinion. I waited until it seemed the meds had mostly worn off and he was somewhat clearminded. I explained at 1 in the morning everything all sets of doctors had said. I said, “What do you think?” He was quiet for what seemed like 10 minutes, but I’m sure was only 2 min. He said, “Let’s Do It.” “Do what?” I said, just to clarify. “The allergy thing.”, he said. He was willing to risk his life to save it.  I agreed. His other parents agreed. To be honest….it was worth a try. The outcome, if it failed, was the same outcome if we never tried.

This life thing…it’s a team effort. No one does it alone.

My Son in the ICU: The Glass IS Half Full

wpid-img_20130919_204052_857.jpgSee the relaxed look in everyone’s eyes? It’s the look of relief and expectancy. Not unlike the feeling of expectancy when small signs of Spring appear after the winter. Seeing with our own eyes the trees budding brings the promise of leaves and fruit, seeing little stems break the earth knowing a tulip will soon follow, or that first day you can take off your coat outside after a frigid winter, because it’s finally warm and sunny…THAT feeling. Because you are at Peace that Spring has finally arrived after all that snow and ice and slippery roads.

wpid-img_20130919_203915_491.jpg In this picture, we are showing Cory all the Love Cory Day posts and pictures that everyone sent in….because we can.

wpid-img_20130919_203903_133.jpgWe are surrounding him with love and all shades of Happy because he is communicating and pointing and Here.  Simply basking in his Aliveness and Responsiveness.

cory family

It’s this day that this All Smiles picture was taken. We are smiling because it’s Spring, smack dab at the beginning of October!! We’ve taken our winter coats off and can’t wait for things to bloom.

The Vigil retreated. And rightly so. Cory was evidently going to be around a bit.

It was confusing to family and the medical staff alike as to what to do next… Leave? Wait? Treat? Wait and see what happens?…….What now??

Family-wise everyone, over about a week’s time (by early October)….went home. To work, school, families, and ordinary life. They still visited, but visited like they were visiting someone in the hospital who was getting Well……not moving in because someone was dying.

And Cory and I created a semblance of an “ordinary life” in a hospital room 5 floors up in Cincinnati Children’s Hospital. He was still bed-bound, but bound and determined to get better, get up and get going. He made progress everyday.

Medical-wise, things weren’t as clear. There was dissention. Cory literally had about 8 doctors, and each doctor had another doctor working with him/her. One Team for each body part. The Kidney team, Bone-Marrow transplant team, Intensive Care Team, Infectious Disease team, Ear, Nose and Throat team, Pain-Management team, Urology team, the Nursing team, etc.

[I want to precede the following details by saying that we have NO complaints about the medical staff. None. These were human beings trying to save our child with everything they knew and didn’t know. I am just reflecting some of our feelings at the time, which were obviously filled with emotion. I am sharing these details and feelings with the mission of being Real. But EVERYONE, regardless of disagreements at times, were acting in what they felt was in Cory’s Best Interest. I have NO doubt in my mind or heart about that. Only Grateful, only grateful, that every single medical professional cared SO much ❤ ]

They attempted to keep a United Front, but it was evident there wasn’t.

One of the Doctor Teams was reported by a nurse to Someone, Somewhere, and was under Some investigation-of-sorts for Something in regards to Cory’s case. That’s all I knew and wanted to know…..I still don’t. We trusted them to work it out, and said so….And apparently they did.

In another situation, we got the impression that One Doctor Team often believed, it seemed, that another Doctor Team was too “polly-anna” with us, using words like “very optimistic”and  “miracle” and consistently focusing on improvements. This May Be, but we really did hear Everything….the hopeful, the hopeless, the good, bad and ugly. We did not have our heads in the sand. We took in the facts and chose to look at the cup half-full (that was Cory’s way…), and that’s all that’s to it. Encouraging us and Cory wasn’t always viewed as a good thing by All the doctors, but we really did appreciate the doctors who did.  We also appreciated the doctors who didn’t. It gave us a very Real sense of the situation.

Regardless, though, we would still be hope-full and fill that room with love and not “give-up” on Cory, regardless! Because that is exactly what Cory verbally told us he wanted.

And as parents, one wouldn’t naturally do anything else. You cheer your kid on in spite of the odds, right? At their soccer game or their hospital bed-side. That’s our job. When your kid is fighting for a goal, a touchdown, a degree, or his life, he needs to hear his parents cheering him on….Plus, it was a win, win.  If he were to live, he would recover with positivity and love. If he were to die, he would die surrounded by positivity and love…. Would anything else make sense for a family To Do in these circumstances??? My experienced mind and heart says, “No”. I’d approach it that way all over again and would hope my family would do the same for me.

Yet, Another Two Doctors (of like 16) wanted us to blatantly tell Cory he was dying, now that he was more responsive, so that he wouldn’t “misunderstand” his improvements. (But…..No One understood his improvements.) These very select doctors spoke about it to us Daily, which felt like Pressure and we resented. (We ultimately felt that this had more to do between them and the other Doctor Team’s different opinions than it had to do with Us, but we were the ones hearing about it.)

We knew Cory. They did not. We expressed this very sensitive information of what he had been through, how life threatening things were, and what some doctors saw his chances to be, to Cory in Cory’s way and in Cory’s time. We slowly told him Everything, as he was slowly gaining his mental and emotional footing….which, frankly, Cory didn’t want to discuss further….so, he acknowledged it, then went on. This was his way throughout his entire Cancer fight. Good or bad, it’s how he wanted to deal with it. He didn’t want to talk about it, give energy to it, or worry. His response was precisely what it had been all along….OK, now let’s keep truckin’.

Because of this, a Particular Doctor (who we had never met before and didn’t know Cory personally or professionally AT ALL) was still not convinced Cory understood the gravity of his situation and this Dr. continued to address it with Charlie and I regularly. It was a priority of our family to treat the medical staff with the Utmost of Respect and Courtesy at all times….. until we could not take his harping any longer. Charlie told him in no uncertain terms that  Cory had indeed been informed, but we were not going to remind him Every Day of this this particular doctor’s prognosis that things were Hopeless. And we didn’t need to be reminded Every Day either that he thinks things are Grave. We Knew. And so did Cory. But, we followed Cory’s lead in focusing on the Living Moment at hand, and Hoping. The End.

We were glad when this Dr.’s rotation was over….

Now that Cory had a say in things again, this was his rodeo and we advocated for all to respect how he wanted to ride. He wanted to Live and that’s what he focused on, so, so did We.

Living: Holding a cup and putting a straw to his mouth by himself. Drinking a milkshake. Swabbing his own gums and teeth. Picking his leg up and down 4 inches with the Physical therapist. Pushing his own buttons to move his bed up and down. Typing a single message on Facebook. Listening to a Tom Clancy book-on-tape. Having a daily routine even though 3/4 of it was still sleeping.

He was too busy trying to Live to worry about dying.

Our Neighbor in the ICU, Jonathon

Cory was doing better (relatively, of course). “Well” meant, first and foremost, he was Alive…..weeks after they said he wouldn’t be. He was showing signs of healing. He was cognitive and clear-minded. We had just written a “schedule” of our daily routine on a white-board, made up of waking up, sponge baths, prayer/meditation, reading, physical therapy assignments, occupational therapy assignments, times of ENT doctors coming in, times of BMT doctors coming in, times of Infectious Disease doctors coming in, times of rounds and visitors, times of  meds.

I met Amy in the “parent-room” of Floor 5, Pediatric ICU at Cincinnati Children’s Hospital. A place where there was constant coffee, on Tuesday’s pizza provided by LaRosa’s, and lots of Tears on cell-phones. It didn’t even phase you to see a parent on a couch in the Parent Room Sobbing and sharing on their cell phones the all familiar words of blood counts & breath counts & open eyes & words said & inputs & outputs….. Sometimes, we talked to one another, sometimes we didn’t. Usually, you just walked by to fill your coffee like you were walking in the mall seeing anyone on their phone, because it was just the way it is in the ICU. But everyone had the same Despondent look in their eyes….it’s like nothing else, and we (Cory’s Parents) would talk of it often. Passing parents in the hallway…everyone had the same Look. A look of sadness, desperation, hopelessness and hopefulness all mixed up.

Anyway, Amy was actually more upbeat than others (she’d just arrived, that’s why)…her son was 24 (a year younger than Cory), had a bone-marrow transplant 11 days before (Cory was going on 74 days), and had lung issues, so was sent to ICU because needed to be on a ventilator. They were from Kentucky, and her husband and she shared their pans of Lasagna and Tuna Casserole with me. They had the cutest Kentucky accents with a smile with every word they said. They uplifted me just while they talked.

We passed each other daily for about a week, in the hallway, the cafeteria, the elevator, or the Parent Room. “How’s he doing?”….and we would get all the STATS(which we both completely understood because we had a crash course in nursing against-our-will).

Then one day, an ordinary PICU day,

Cory had just fallen asleep. I got up to go get more warm blankets, to refill my cup with ice, simple things, opened the sliding doors to Cory’s room and sensed EMERGENCY.  Nurses from who-knows-where and doctors and lots and lots of people were flooding the room next door…(in the same room they all came flooding in when I’d arrived with Cory  in the ICU.)

Bur this was Amy’s baby. Everyone running, machines rolling in….I knew to shut our sliding glass door and stay in. It’s slow-motion from this moment on…..

I turned to the right, and through the small rectangle  window that  connected  our rooms, or maybe it was just outside our room? I can’t remember exactly, but doesn’t matter….

My eyes wide open and shocked seeing the mass of people in that room and the doctor take the paddles and place them on his chest and the words I couldn’t hear. His body jerked and arched, then relaxed, then jerked and then relaxed, and again jerked and relaxed. I turned away, sat on the floor and cried.paddles

How is my child still alive after 82 days and hers is dying after 18? How? Why? Whaaaat? I  prayed the Our Father 3 times. I prayed, “Let their baby live” 12 times. I panic-prayed.

It breaks my heart still. I would give those days to any parent, sibling, or person in an instant if I could. Really would give my whole life for that.

And seeing the paddle stuff in real life on a real human being, on a real Amy’s child….is NOT like seeing it on TV.

I stood back up. Thank Be  that someone shut those blinds. I went and stared at Cory with my heart racing and tears flowing for at least an hour. I was afraid to step back out of the room.

He died. Take that in….Jonathon died. He lived 24  years. Twenty-Four. I was barely getting started at 24. Thanks, Cancer.

I knew he died, because the next morning the room was empty, the bed was made to crisp, and there was no Amy or Jonathon to be found. I missed her, I wanted to hug her, and she was just…gone…and I only knew her first name–Mom.

The “survivors guilt” was overwhelming. And still, in a way, is. I had over a month more with my son….30 more days of conversation, and touch, and physical therapy, and prayer, and hugs and kisses….that she didn’t.

I had told Cory about his neighbor when they were admitted. To give him a sense of Solidarity or that he wasn’t the only 20-something year old in the pediatric ICU of a children’s hospital that had cancer, then a bone marrow transplant, then complications that sent them to the PICU.

I didn’t tell him about his neighbors outcome, and I prayed he wouldn’t ask. He never did.

My son in the ICU: The Brink of Life

It was almost October, 2013

Cory had made a turn from the brink of Death to the brink of Life.

Just so happened to coincide with his transfer from a typical hospital room to a spacious, light-filled, sunny hospital room (still so grateful.). Which was a perfect place, as far as hospital rooms go, for Cory to be, because he was an outdoorsy guy through and through. Venture to say he spent an entire 1/3 of his life outdoors….camping, climbing, cliffing, biking, caving, on trails, off trails….he had no need for material things, just a need for Nature. So it was no surprise that we saw him open up and blossom a little when he could once again see outside and soak up some Sun.

This is what he looked like from the Outside:

His body and face and bald head were covered with purple lesions and sores (but they were just beginning to dry up and show signs of healing)….and we put his glasses on him during the day, no matter what. . Because if he was alert (he was alert and awake longer and longer every day), even if momentarily…at least he could see. The glasses barely balanced on his nose, that he was sure to lose, due to the fungal blister that draped over the whole of it. And he had a feeding tube fed down one of the nostrils, that was only used for medications that had to be absorbed orally. His stomach couldn’t handle food or drink yet.

He now had a PICC Line in his neck, the vein of his existence…literally.  It had been moved from his arm to his groin to his neck because of infection (Forever fighting bacteria that would take up residence in the plastic of the lines)…yep, just stuck right there in his neck. 3 lines that went into one place (that artery headed directly into the heart)….and branched off what looked like 20 lines that fed into the 3. Watching the nurses “change the lines” looked like the wiring of a computer, with electrical lines long enough for them to get tangled in the web of at any moment. And they all fed into this one hole in Cory’s neck.

His PICC line fed him nutrition (because he couldn’t eat or drink), hydration, blood, platelets, numerous antibiotics or anti-virals or whatever the medication of the day was. And all of these things were in bags hanging on his pole, but couldn’t be all at once….so those blessed nurses had to have a “line up” of what to hang, send in, order, take down, and when. See, they could be football coaches, too! —  “Send in the red-blood cells, take out the anti-viral, send in 2 antibiotics and in the Second Half, we’ll send in nutrition….skip the digestive system, go for the tackle and time the Platelets!”— (…and I’m hearing that college football announcer voice right now….) These nurses were totally winning this game in my eyes.

Seriously, In Awe, all. the. time. Nursing isn’t for sissies.

Anyway, he also had an IV in his wrist where his pain medication was administered as well, or whatever additional medication they determined he needed.

He had stickers all over his chest that attached to wires to monitors for his heart and breathing rate, and a pulse ox (like a band-aide) attached to another line that monitored his oxygen. And we could watch it all on the monitor from where we sat….just like on TV.

And he was adorned with different machinery daily….EKG machines or Dialysis machines or photosynthesis machines or respiratory assistance machinery if needed, or x-ray machines when his line would go awry near his heart, or even a portable cat-scan machine when he was thought to have had a seizure.mri

He wore a hospital gown like a sheet that often ended up around his waist, because it was too difficult to fasten or dress him with all the tubes and lines attached.

cory zebraAnd he wore his sisters zebra striped heating blanket over top that she loaned him. So him.

He hadn’t been out of bed in a month, he couldn’t sit or stand.

We sponge bathed him in bed, we gauzed his teeth and gums (because the sores in his mouth never left and couldn’t handle a brush), we held cups to his mouth for sips of water through a straw that we held in place for him as he gradually was able to handle drinking, we applied a honey treatment to his 100+ sores that covered his body, we pushed the buttons to move his bed and head and feet up or down to his liking, we hand-syringed his stomach through his feeding tube to empty it of whatever might be building up in it if he was nauseous. He was 25 years old and could do nothing for himself at this point, and we were his pinch hitters.

And he was BEAUTIFUL.

He was responding with conversation and slight smiles and better “numbers” and signs of healing instead of signs of death. He was still Alive when he shouldn’t have been.

And this is what he looked like from the Inside:

In one of the first few days in the Light-filled hospital room, Cory said in his raspy voice,

“Don’t give up on Me.”

“No way”, I said.

And we didn’t.

From an outsiders point of view, the brink of death and the brink of life might not look all that different, but we could see the Resolve in Cory’s oh-so-tired eyes…THIS was the real Brink of Life. It was in him.

This time, I didn’t have to sign anything on his behalf— He signed off on his Will to Live all on his own.

My son in the ICU: Be careful what you wish for….

Late September 2013:

We were moved One Day from the smallish cramped room on the ICU unit with This window-of-worry:wpid-img_20130916_180134_516.jpg

to the most beautiful Penthouse-like room on the unit with These windows-of-hope(and that’s not all of them!!):cory family

…..We had actually admired this room from next door for weeks before, and once stated  to a nurse who was attending to Cory,

“Wow! That is a magnificent room! The light, the windows!” , I said enviously as I walked passed it and into Cory’s room that was half the size, dark and seemingly cramped in comparison.

The nurse replied, “Ohhhh, you don’t want that room.”

“Why?”

“That’s the room that goes ‘into the light’, …if you know what I mean…. Patients who go in, don’t usually come out.”

oh.

So, when, a couple weeks later, when Cory was actually getting better (a very relative term) and we were filled to the brim with hopefulness….her words couldn’t help but enter my mind as we rolled his bed into that grand corner coveted room on the floor that he was transferred into.

It was double the size, quadruple the windows.  The Sun blessed us all…..it was like arriving on a beach after being in a basement for weeks. We all soaked it up and were SO grateful for the light and space. It was a gift.

“I’ve spent my life searching for spiritual meaning…” Cory was telling the visiting female pastor that happened to be with him as he changed rooms. They had bonded. He opened up to her when she visited him daily. “I’ve found it in Nature most of all. And in Solitude. I love solitude.” She was a beautiful and peaceful and accepting soul. She was exactly what he needed. Funny how God always Provides so precisely and timely.

This room allowed Cory to come back to life in Glory. In sunlight, with many family members around him, with room to Breathe and Work and Rest and Heal…. And come back he did, mentally and emotionally at least.

Physically, well….that was another story. That would be a long, long road.

My son in the ICU: …and then LOVE came in.

Late September, 2013: Cory made an amazing turn. He stopped hurting, we started Hoping, he came back to us mentally and was weaned off his pain medication. Doctors used words like “Miracle” and “Never been seen”.

And Love exploded.

cory & anna cropAnna, his love and friend,…who the moment she got word that he was dying, up and left her home and job in Arkansas, drove 9 hours straight, and came to him. The moment they saw each other brought the hospital room of men and women to tears. The connection, the pure  love witnessed there was more moving than any novel ever written. I can’t even begin to describe it. He came back to life like nothing we had seen so far. She saw beyond his pain and sores and scabs….it’s like none of that was there. And he looked at her like an angel arrived. Charlie even joked, “He’s never looked at me like that!”. Her arrival on the scene brought joy and healing and agape love to Cory and to all of us that witnessed the most tangible connection of two souls we had ever seen. And she stayed with us and with him. Now there were three of us rotating chairs and parent beds at night….and Cory or we wouldn’t have had it any other way. This was Love.

wpid-img_20130917_155114_312.jpgAnd his friends came, all drove, walked or wheeled in and sat around him at what they thought were the end of his days and cried and held his hand and brought cookies and notes and reminisced for him when he couldn’t respond, This was Love.

cory familyAnd family and cousins who used their saved pennies traveled for miles and miles from Seattle, Arizona, Alaska, Tennessee, and North Carolina, and the Uncle who poured his heart and talent into writing and recording Cory’s Song…and the grandparents near and far who held vigil for days, or sent communication and prayers across the miles, or made sure we ate and slept, This was Love.

His brothers and sisters, who sacrificed so much during this time (schooling, time with friends, absent parents) or had countless family meals in the hospital cafeteria or countless hours at their dying brother’s bedside or made wallets out of duct tape for Cory’s lottery money  cory lottery money……This was Love.

Dave&Debbie who stepped up and ran the whole Home Show solo and those family, friends, teachers, and leaders who pinch hit in my other children’s lives when I was absent from my (and their) life while I cared for Cory…This was Love.

wpid-img_20130916_180134_516.jpgAnd the laughter in the room when the crowd was there, piled up literally on top of chairbacks and arms of chairs and all over the floor (I’m sure the PICU team questioned allowing us the go ahead to let family/friends “come thru”, because they surely came but didn’t necessarily go “thru” ), the jumping to their feet and to his bedside to hear Cory muster a word and do anything at all we needed to help.
This was Love.

And the endless emails and texts and care packages and visits from my little friends and big friends and new friends and old friends…This was Love.

And those who sent essential oils and did Reiki and sat silently and peacefully beside Cory and delivered us homemade meals…This was Love.

And the doctors who treated us like family– who showed up on their off days, pulled up a chair and spent their precious little free time with us and chatted with Cory about his adventures, or who offered to personally go pick up our dog from our home to visit Cory, or promised to make a trip to Utah to hike with him when he was on his feet. And they meant it…

This was Love.cory dr. mary (Dr. Mary <3)

And a group of my dear women friends:  daycare moms, church women, old and new friends showed up one day  at Cincinnati Children’s Hospital and brought me snacks and gift cards and written sentimentscory sheyna moms and they went in the church chapel and grasped my hands and prayed with me. Prayed for my family and for my son. They showed up and lifted me up and held me up when I felt like I couldn’t fake my way through one more day, with their lasting embraces. If I shut my eyes, I can still feel it. This was Love.

wpid-img_20130917_131120_441.jpgAnd Jenny….the nurse who jumped through more hoops than I knew to make an Outdoor Trip happen for Cory. 8 people transferred him to a stretcher and rolled him and his lines through a maze of doors and units to get him out to the patio.

And Brian, the music therapist who brought us the blessing of guitars and egg shakers and music to Save Cory. They knew him . They knew he loved outdoors and he loved music, so they made it happen for Cory. From love, not from their duty of their job. wpid-img_20130917_103127_272.jpg

And the close friends of his who gathered around his stretcher that day, grabbed an instrument and played music with him for an hour while he laid horizontally and could barely strum….This was Love.

And his old high school friend who was there that day and in tears asked me…”I just need to know, does he know Jesus?” and I said, “Would it make you feel better if I directly asked him?” and she said, “Yes.” So I went to Cory, outside breathing the first fresh air he’d breathed in months, and I said, “You know how much she loves Jesus, right?” and Cory said, “Yes” and I said, “She wants to know if you love Jesus.” and he said after a moment of thought, “Yes, yes, I do.” and I told her and she looked relieved and took a deep breath and smiled. This was Love.

And his very best friend, who was his sidekick for many years and they took care of one another endlesslywpid-img_20130918_133741_111.jpg ,that Lost her Job for staying at Cory’s bedside for days on end. This was Love.

 Then Abby , Cory’s cousin in Colorado, started a Love Cory Day (that lasted weeks) on September 19th…. she said “Hi guys! we want to celebrate Cory (my cousin) tomorrow. He’s a cancer fighter and a truly amazing kid. To show some love everyone please wear anything red and post a picture. Please support♥” HUNDREDS across the Ohio and the country donned red shirts and made signs and smiles cory abbycheering him on….

This was Love.cory love cory day

love cory day laraIt spread across the nation, literallycory kids, and a friend who’d never met Cory made a Facebook emblem- that people we knew and lots we didn’t- shared on FB and posted as their profile pic in solidarity and support for the miracle we were witnessing ….it said, “Go, Cory, !!” …This was Love.cory go cory

And the prayers, and the pictures, and creativity came rolling in…..Cory once said to me, “Those Prayer Warriors are a real deal, aren’t they? They aren’t messing around.” ….This was Love.

I could go on and on. It all helped. It was all was provided at the exact moments it was needed, because no doubt about it…..God IS Love and it’s the only thing that matters. I didn’t just read it on a page, I lived it. It was overwhelming and precious and it truly carried us.

At times like this, everything else falls away, and you just see hearts…it’s the most beautiful thing.

Cory’s last Facebook post on October 8, 2013, while fighting back mentally and physically from his brush with death.

“Can you get me on Facebook?”-C

“Sure, do you want me to read or type?”-Me

“No, I will do it.” -C

It took him 45 minutes to type this one finger at a time while I held the iPad up on his torso.

First time being on here here in
quite awhile, and my activity will likely remain minimal, but my mom has been keeping me up to date with all the Love, so I wanted to acknowledge and return some of it really quickly. You all kick ass.” –Cory Jay

My son in the ICU, If I had a boat….

End of September 2013:

We were waiting, counting days and moments and temperatures that Cory couldn’t shake.

Cory’s dad, Charlie, was the expert temperature taker and our moods would rise and fall according to .5 movement up or down the thermometer reading. If there was movement either way, we would take it again and again within the same hour.

We were told he had days or maybe a week. We were looking for signs of a miracle or signs of death. No gray in those days….black and white, hope or despair, up and down the rollercoaster operated by a fungus.

I was either praying and bargaining with God or googling “signs of death”. Like we might miss it.

Desperately wanting control when we had none.

I googled many sites over and over…looking for a site where he didn’t meet every “sign”. For  a tangible ray of hope. Couldn’t find one. Check, check, check, check—-all physical signs were there.

But I didn’t (or couldn’t) believe it. I yelled at myself in my head and said words like “reject!” or “no!” to any sign of acceptance or negativity in my thoughts. I was Believing God for a Miracle to save my son. I wanted to talk with him again, hang out with him… this all happened so fast. I wasn’t ready and didn’t believe he was either. End. Of. Story.

Then one night, he sat up in his bed (yes, Sat Up). I asked him what he was doing as he picked at his sheets at first and then was clearly reaching over one side of his legs and looking like he was grabbing things and moving them to the other side of his body.

“I’m packing”, he said. “I have to go.”

Thinking he was talking in his sleep, we tried to lay him back down, but he was insistent. So we let him pack. I watched with tears rolling down my face with my first real thoughts of, “He’s leaving us.”

The next day, family came to visit. He started telling everyone where he was….”I’m at the ocean.” and he was so content and happy. To which someone asked, “Who is there?”….”Well, there’s that Lion over there, lookin’ all regal!”– “Where?”– “Over there on the beach.”…And when Jimmy walked in, Cory looked straight at him and said excitedly, “Hey! How’d you get here? By boat??”  He apparently had arrived.cory boat

Well, then.

I googled again….a phenomena known as “nearing death awareness” seemed to fit the bill psychologically. Spiritually speaking, a common occurrence of “One foot in, one foot out” where they are somewhere else, but able to communicate it with us here. Often involving relatives that have passed or descriptions of heaven.

Hmm.

“If I had a boat
I’d go out on the ocean
And if I had a pony
I’d ride him on my boat
And we could all together
Go out on the ocean
Me upon my pony on my boat”…Lyle Lovett

My son in the ICU, TODAY: Shower, eat, sign DNR orders, pay bills, call kids.

last week of September, 2013….cory lines

Cory’s Dad, Charlie flew back after being home in Arizona a matter of hours…

We asked for a meeting with the Attending (head doctor) of the ICU. We asked for privacy. Dave (Cory’s stepdad) and Charlie (Cory’s Dad) and I went into an empty patient room with this man. A man who was bald with a goatee and obviously very intelligent and compassionate and we trusted. So much goes on gut….we trusted this guy. And we all, all three of us cried.

We got the word that Cory was dying with no chance of recovery from the fungus that had taken up residence in his body (zero survivors).

We decided I’d (ME??? How’d I get this job….oh, yeah, Cory handed me the papers months ago saying, “They said someone has to sign this.” He had it all filled out with my name on the sign the DNR)…. with parameters, is what we ultimately decided….if it was a blood pressure issue, they would treat. If it was a kidney issue, they would treat. If it was his heart or breathing, they would not.

Why the parameters? Because on the off chance that he might miraculously recover because of the anti-fungal treatment they were giving him, we wanted to give him a fighting chance.

There are firsts. There are miracles. And they said the anti-fungal treatment would not keep him alive, but if it did, we wanted him resuscitated under circumstances that would NOT cause him undue further pain or suffering.

**If his heart stopped, compressions or paddles would cause him grave pain, so they would Not resuscitate if this happened.

**If his breathing stopped, intubation would cause him grave pain, so they would Not resuscitate if this happened.

**If his kidneys shut down, dialysis would  not cause him pain to receive, so they Would resuscitate in this manner.

**If his blood pressure dropped, they could bring it up by administering medication….simple, so they Would also resuscitate if this was the case.

<<< CAN YOU IMAGINE?? ….I am sitting right here, and I can’t imagine that we had to make these decisions about when to save our child’s life and when Not to. WHAT???

This part was not in the What to Expect When You are Expecting book.>>>

We just wanted to give the meds a chance to work if they could……then…..

His pain was off the charts! His suffering was intense. The blisters were all over his head, his face, his nose was covered with a huge wound. And he was in unmanageable pain….and if these lesions were on the inside as well as the outside, no wonder. He was in pain,  just lying still. And it was amplified if we or the nursing staff had to touch him and care for him for Any. Reason.

And there were lots of reasons we and they had No Choice but to touch him. To give him basic human care. And it brought us to tears and agony with his agony

….and it was getting worse, much worse, and he was getting louder, much louder.

Then, we wondered to one another…..Are We Doing This To Him??????? while trying to help him ????

Are we Doing this to him by allowing the Anti-Fungal Treatment? Are we prolonging the inevitable? Are we only prolonging his suffering and not really prolonging his life????

So, we requested a meeting with the Attending of the ICU. He came into Cory’s room hours later, and we asked if we could go somewhere private. I’ve heard about those patients in a hospital room you think can’t hear, but really can….and we weren’t going to allow Cory to hear- even subconsciously- Our worry, Our pain. He had enough on his plate.

So we followed the bald man with the goatee. Through the pod of rooms out to another pod. Step, step, step in unison, in a line behind him in silence. He slid his pass into another pod, the automatic doors opened into an identical pod. Step, step, step, step. I can still hear the stepping. I have a lot of really clear auditory memories….

He peeked into rooms until he found an empty one. Opened the glass doors and we all went in. We unstacked a couple chairs….there was a baby bed in the room. I couldn’t help thinking, “A baby laid in there. I hope he made it.”

“Take a seat”, Dr. said.

The Doctor in his predictable white coat sat near the entry glass doors and we assembled three chairs facing him.

Charlie started. “Are we doing the right thing?” and he was sucking up his tears. (Cory came by his rarely-crying honestly) But Charlie couldn’t help it….none of us could. We were all just sucking up, wiping tears, sucking up, wiping tears, so we could attempt to have a professional conversation.

Dr. said, “Yes, I can tell you are the type of parents who have your child’s interests at heart, not your own. You are doing the right thing. You are doing a great job.”

We weren’t here for a pep talk. Confusion set in. I thought, “He doesn’t understand what we are asking.”

I said, “He is in SO MUCH pain. The meds don’t seem to be touching it.”

Dr. shook his head in agreement. He wasn’t getting it.

Charlie said something like, “We don’t want him to hurt anymore.”

Dr. — “Yes, it’s a very painful condition”

Dave says, “What do you think?”

Dr. says, “You are doing the right thing. “

OK. He doesn’t get what we are asking….and it’s difficult to ask directly, but we are getting nowhere with the pats-on-the-back…He is not in Cory’s room with us….he doesn’t know what we are asking.

Charlie says, “He’s in ALOT of pain. Should we be treating him????”

Dr. says, “Yes.”

What? Just, “Yes”?

OK. We are all three choked up, trying to get words out, trying to ask what we want to ask….aaaaand, it’s not working.

I take a deep breath, I wipe my tears, I take another deep breath and ask, “What if it was your child? Your child in this unbearable, immense pain….would you continue to administer the anti-fungal to treat what you tell us is untreatable? And what would your stance on the DNR be?”

Dr. says, “Yes, I would definitely continue to administer anti-fungal so pain doesn’t get worse. (It can get worse, I thought???) As far as the DNR, when the kidney’s go, I’d say no to dialysis.”

“What about the blood pressure?” I say.

“Oh, that could be many reasons, so bringing that back up is reasonable. We will see what happens.”

Then he went on to tell us on that we were exceptional parents and they ran into so many parents that wanted to go to crazy extremes to keep their child alive for selfish reasons and we were notthose parents and it was refreshing to see….OK. Yay, us…..exhaustion is all we felt. Emotional exhaustion. I guess we got our answer???

Carry on….

My son in the ICU: “I’m very sorry”, they say.

Tuesday, September 17, 2013

It’s 2:50-something. I’ve been waiting for 3:00.

“Mrs. Powell, hello.”

He has a beard laced with gray. He walks toward the end of Cory’s bed with his hands clasped behind him. He has a heart. I can see it.

I am in my usual position, next to the bed, with my hand slid under Cory’s hand (but not grasping so I won’t hurt him).

“So, I am the new Attending coming onto the Bone Marrow Transplant Unit.”

I’d figured it out by now that they rotate every 2,3,4 weeks? Time….so crazy how I developed a such a lack of Sense of Time in the ICU. But, anyway, they rotate.

I have a panic moment. I am attached to and trust my Lithuanian friend….the mother of a young adult son, like me, to be Cory’s primary doctor. But this peaceful, (of seemingly Arabic decent?) put me at ease. He has a beautiful accent and a soft voice and a gentle way about him as he lifted the sheets on Cory to inspect the odd never-seen-before-at Cincinnati-Children’s-hospital-Mold-induced-bruising-and blistering on my boy.

“Hmmmm. So, we will meet in the room. Right out the doors….in ten minutes okay with you?”, as if he is really asking me permission.

“Yes.”, I well up with fear tears.

He purses his lips in a sort of smilish way and nods a couple times and backs out of the room. I feel his respect as he left….respect of Cory, of me, of the situation??? I don’t know, but he is All Gentle and All Respectful. I like him. That’s good.

I talk to Cory quietly. He might wake up…he does sometimes (well, he wakes up BECAUSE of his intense pain…). Today he is on so many pain meds, and I can tell that he is in Deep. “Feeling no pain” isn’t some laughable joke about someone who’d had too much tequila….right now, it is just a gift.

“Cory. I don’t know if you hear me right now. I love you. And I’m going in to talk to the doctors. They are going to help you. They have figured out what is wrong and they are going to help you. So hang in there, buddy. I will be right back. I love you, your Dad loves you, Dave loves you, Debbie loves you.” I say that every time I leave him alone. All his parents love him.

I slide open the glass the doors, I walk 10 steps to the doors, I slide my ID so they would open, I walk left 5 steps and turn left into the first immediate door.

I can see in the window of the door that there are 8-10 people sitting in the 10 x 8 room. Waiting for Me. That little social anxiety feeling is creeping up my body from my toes to my face. It hangs out right about my chin…..

“Breathe,breathe,breathe… pleaseGod,pleaseGod,pleaseGod”. I don’t even know what I am asking for. But ThanksBe, He did. —–My mantra daily. But especially now.

I have never in my life felt more alone in a room FULL of people. I completely understand what that saying means right. at. this. moment.

I sit in the only empty chair in the room….in the middle of the circle of chairs, and even though I am IN the circle, I feel Center Stage.

Chris is one of Cory’s doctor’s that we met the day of his Leukemia diagnosis. Cory loves him. Really, really trusts him. And so do I. He is the father of two little ones, and works so much—alot—helping my son and many other patients while his little ones are at home with Mom? or daycare? I don’t know, but he LOVES them and is so proud of them, showing pictures to us regularly, and he is so affable and real and is physically and emotionally soft while being completely professional.

His. Heart. Is. In. This. He is at least 10-15 years younger than me, but he knows that Cory is my little one, and talks to me with the same sensitivity he would the Mom of a 2 year old. He begins to speak.

“So…” he says. And with that one word, his one look, I realize ….they don’t have me here to tell me how they are going to save my son from this now diagnosed mystery disease….they are here to tell me an AWFUL THING.

The tears just flow in that flowing-without-facial-malformation flow…the “beyond the ugly cry “cry. I never knew there was such a cry before the ICU. Your face doesn’t even have to lift a muscle.

“This is very rare. We could only find a handful of cases.” Rare again. This is what I came to understand:

We all have fungi and bacteria and virus’ hanging out in or on our body all.the.time.

Our Super-Heroes (Immune System) easily keeps these low-level bad guys isolated and locked up, never to bother our body again. I’d learned about this before, with the BK virus that came to life in Cory’s bladder….but a bacteria and virus were usually treatable, overcome-able. Fungus was a scarier story.

In Cory’s case, his New Immune System from his Bone Marrow Transplant started attacking his own body (Graft vs. Host Disease—kind of like an organ rejection). This can often be managed by temporarily suppressing the immune system until it feels more at home. This suppression also takes away the already taxed Super Hero Capes, though, and while they were sleeping…

The Fungus broke free and made its way into the bloodstream straight to Central Command–his heart–and like a Pin-Ball Machine, the heart-valves shot the fungus in 40 different directions throughout his body. They made themselves at home in his skin tissue, surfacing in the bruising and blistering and intense pain we witnessed.

There’s been a Fungi Party going on for days now with no treatment since no one had any idea what it was!  Four Days of it circulating through his bloodstream, around and around, creating more and more painful chaos. “Ping-ping-ping”… I can hear the heart-valves racking up the points for the opponent.

“OK,”  I say, “What now?” , though I know the answer.

“No one has ever survived this. I’m very sorry”

(I can’t tell you who is answering my questions. Different doctors are piping in, but all I see are slow motion talking heads.)

The actual words said out loud cause me to shake. I see tears from many others in the room.

How in the world do they do this all the time??

“So, there’s nothing we can do?”

“We will treat him with an anti-fungal so that the fungus doesn’t cause more pain, and we will continue to keep him comfortable, but what is done is done. Everything you see on the outside is all over every surface inside as well—his organs, any membrane surface. We’ve looked up every case and there are no survivors.”

“How long?”….Oh, my dear Jesus, How am I still speaking? (I had this funny sense often of being amazed that I was functioning at times.)

“Could be 2 days or 2 weeks, but not long.”

“Well, there could be a first, right?”, I say. (Typical me–I’m a glass 3/4 full kinda girl)

Someone chuckles lightly between their tears, “Yes, if anyone could be a first, it would be Cory. He is the come-back kid.” But noone in the room really believes it is possible.

I believe in the possibility because I know God is in the business of miracles at times. I decide right then and there that my energies are better spent focusing on the possibilities instead of the probabilities. That is exactly how Cory lives his life, always focused on possibilities, and that is how I can best serve him.  I’m not sticking my head in the sand, though.  I know that these God-gifted minds are sharing the truth of what they know with me.

I prepare for the worst but my heart continues to hope and pray for the best. Isn’t that what Moms do?

Then, just when I think we are wrapping up and I am very anxious to get back to Cory, to be in the safety of the room with my Alive Son and absorb things, someone is shuffling papers.  She says, “Under the circumstances, we feel we would put him through undue and unnecessary pain and suffering to resuscitate him if he arrests. And you won’t want to make that kind of decision in the moment…” She is starting to hand me a clipboard with the paper on top.

What is it?” I feel frozen, my mind spinning and garbling information.

“A DNR order.” Do Not Resuscitate. Do Not Resuscitate. Do Not Resuscitate. Do Not Resuscitate.

I am not really here. I know it. Not happening. I say out loud, “This isn’t happening.” And the tears begin again, only now I can’t breathe. How foolish of me to agree to this meeting alone….but I really didn’t know it was THIS. I thought it was bad, but not this.

“I need to talk to his Dad. And if Cory has a moment of clarity, I need to talk to him.” I cannot sign to kill him, which is what it feels like. I logically know that’s not what this is, but I am not feeling one bit logical at this moment. All I know is that a mother should NOT have to sign a paper that says “Do Not Save my son (who was recovering and laughing and walking and conversing only 3 weeks ago) if his heart stops. Make NO attempt. Do Not Help this 25-year-old precious young man with his whole life ahead of him.

Love, Mom.

“Take me instead.” I pray silently while looking at the ceiling and waiting to be dismissed.

“We understand. We can handle that a little later. We will open up this conference room for unrestricted visitors to wait to see him over the next couple days, for those who might like to say good-bye. Family, friends.”

“Okay, thank-you.” I manage to say. I can’t take anymore.

“I need to call his Dad to come back.” I say and I get up, leave and rush into Cory’s room to make sure he is still Alive. He is.

Charlie is home in Arizona only a matter of hours before he hears from me to tell him that he needs to come back immediately. They say our son is dying, could be a matter of days….

Can’t imagine what the flight back will be like for him. Or the drive for Dave and the kids. Or for my Mom or in-laws. Or for the love-of-his-life, Anna, who will drive up from Alabama. Or for his brother Jimmy driving up from Dayton. Or for my sister, flying in from Alaska. Or my nephew flying in from Seattle. Every moment of their journey to Cory, fingers will be crossed that he is still alive when they arrive.

My son in the ICU: PAIN exclamation point

September, 2013, 2nd week in the ICU.

Things were good, considering (“good” was ALWAYS “considering”).

Quick review of two weeks (only 14 days) in the ICU….Septic Shock (organs shutting down, they saved him, Praise God); Breathing Tube trauma; BK virus continues raging(blood and blood clots in urine); ALL organs on some sort of machine to assist functioning; GVHD with his new bone marrow attacking his body with enormous, painful blisters on his back; At least Four different Bacteria/Virus/Fungus detected and treated due to low immunity (and having to lower it further to fight GVHD);  Once breathing tube removed, still fluid in lungs, broncoscopy required.

But….I believed things were “good”.

In reflection, it’s what allowed me to care for him, to shower, to laugh with the nurses or his dad, Charlie, to be hospitable to visitors and family, to be a long-distance parent and wife(from 25 miles away) to my family.  But, I do believe, that I was a better mother to him than the mother who now sees now, in my writing, that things looked rather bleak even though things were improving….

But “good” meant: He was breathing on his own with oxygen numbers rising, they expected him off dialysis in the next day or two, his bacteria was responding to treatment, the GVHD blisters on his back were GONE!, they had removed the urinary catheter due to complications due to clotting, and he was awake (sort-of, sometimes). And in One Day, he was scheduled to go back to the Bone Marrow Transplant Floor!!! He NO LONGER NEEDED INTENSIVE CARE!!!! Our hopes were High and Confident.

Charlie could fly back to Arizona, I would stay in hospital until Cory was completely out of the woods, but would return to work in a couple weeks…Cory would continue to get stronger and better and numbers will rise….Woo! Hoo! Then he would come home! Ahhh, it was all planned out ( in my head) and it’s all I saw. Once HOPE moved into my brain, watch out. Then….

He broke out in PURPLE BLOOD BLISTERS , all over his body. Blood Blisters. Everywhere.

At first, no one said much. We just assumed more GVHD funky blisters. These blisters didn’t distract us from the HOPE from all the improvements! We were still in “WOO! HOO!” mode. Just another speedbump…

Whatever it is.cory blood blisters

But then to find out They. Didn’t. Know. Why.

GVHD doesn’t do this. Bacteria doesn’t do this. They don’t know what does this??????  Cincinnati Children’s Hospital has never seen this. Wwwwhhhhhaaaaaattttttt??? WHAT?

These blisters caused him EXCRUCIATING pain….worse than Ever. We.Couldn’t.Touch.Him.

None of us could Touch him.

But there were things required to Care for him that required us and the nurses Touching him. We had NO CHOICE at times to Touch him to care for him. And it tore us to pieces every time….He would CRY OUT  and

MOAN in Agony,

real live AGONY….

and this was medicated!

The Guilt and the memory still bring me to tears as I write.

I remember a moment with Charlie where we both were upset with  pain for our child…

it was Primal…

saying ” WHAT CAN WE DO?? , What can we do???

It was our souls speaking to one another….helpless for our child we had brought into this world and watching in such intense pain. Pain. Pain….PAIN!!

Really, I can’t describe it.

They put him on more pain medication again…they asked if the Infectious Disease Team could biopsy him? …..Take little round circles of his skin out of him to determine what this was?

“Will it Hurt”, we said?

“Yes.” they said. We heard “YES!”

We had witnessed him in so much pain over the preceding three days. Pain that you could not imagine watching your child go through. Suffering that you cannot envision.

I.Cannot.Describe.It. because I could not even have imagined it, ever….EVER. EEEVVVVEEERRRRR.

So the question, “Will it Hurt?”

Mattered.

Alot. ALOT.

Such pain that we questioned a simple biopsy of his skin.

We didn’ t want to be responsible for one more iota of discomfort for him.

We agreed, after much conversation, reluctantly, thinking the benefit of diagnosis outweighed the additional pain.

We signed. They did the biopsy.

Charlie flew back to Arizona, because he’d already booked the flight when we thought that things were Getting Better.

He waited waiting for word, since his flight was already booked during the Hope Phase.

I would be calling him very soon to come back to Cincinnati.