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: …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: We are Going In.

August 31, 2013

I wrote Cory a text saying I would come a little later tonight to spend the night with him in the hospital because I was going to watch a movie with the family first. (I would spend the nights on the weekends with Cory in the hospital. It was Saturday. I was trying desperately to juggle all that all needed from me…Impossible was another word for that.)  I was, on the inside, excited that it was a three day weekend….I could spend three nights with him, my recovering child/man.  He was doing as expected since his transplant, considering.  I was always trying to balance not “mother henning” him with “being there” for him. He was 25 after all, not 15. I WANTED to smother. But I think I did a rather good job of self-control to respect his Love of Solitude vs. my Love for Him.

I was literally getting in my car to leave when I got the call.

“Mrs. Powell (which Im not, but I answer to both, because I know they mean motherofyourson) …you should come right away.”….”Im on my way…whats happening?”….”Cory is in Septic Shock, he started a fever 30 minutes ago, and now….”…..  “WHAT? WHAT’s THAT?”…..”I cant give you any more information until you are here…..hurry.”…….”HURRY????”….I was on I-75.   I sped to 90 miles an hour saying “Please God, keep him alive” over and over and over and over and over.  I imagined a police car behind me trying to stop me for speeding….I decided ahead of time that I would keep going. He could ticket me in Cory’s hospital room.

I dont remember getting to his room other than I ran and ran and ran. I couldnt be fast enough. I ran into his room filled with 15 medical personel. I squeezed between people like in the VIP section of a concert…..he looked at me with a “help me” look that is burned into my brain. I grabbed his hand and said, “Im here.” He was sick…he was suddenly, inexplicably, really, really sick.

I was just was here last night. We played bananagrams, he won.  We played Palace (which was really called Shithead, but I insisted on finding the real name for the game so Miss Sheyna wouldnt have to say Shit….). I love that he humored me/respected me and called it “Palace” for me…now, I could care less what it’s called. We kept score on the whiteboard of the many, many games of Palace/Shithead we played during his hospitalization. In the end, he won, I lost. How appropriate. cory keeping score

He was sick and helpless and sunken in his face and labored breathing and ohmygodhe’sdying. I never lost eye contact with him…I was telling him everything would be okay when it wasnt, when I didnt know. They were talking and sticking and covering and pumping and watching numbers and pushing meds…. Then they pushed me. They moved me and threw an oxygen mask on his face and I saw his eyes roll back in his head. And they unlocked the locks on his bed and rolled. Fast. Out of his room and down the halls….15 people rolling my son and his “friend”, his pole, with all of the medications attatched that were flowing into his arm. And I went too. We were One Being. Cory and the medical personnel and his “friend” and Me. Rolling…..I can still hear the sound of the wheels on the linoleoum. Pshhh, Pshhh, Pshhh, Pshhh…….

emergency-workers

We were in. New doctors, new nurses…lots of them. One beautiful black woman talking to Cory, so close to his face, comforting him. “We’re going to help you.” “Its ok, sweetie, we are taking good care of you.” She must’ve seen the panic in his eyes. ICU nurses are saints. Saints. Saints I tell you….. I was in the back. I kept trying to get to him, but trying to respect their work, the work of those who went to college 1001 years to SAVE MY SON,….I didnt want to interrupt their saving my sons life. I. Just. Wanted. Them. To. Save. My. Sons. Life. , But I would reach in every now and then…for his hand… to touch his face…his leg. I wanted him to know I was there. “Can you stand back here, Mom?”said someone smarter than me….”Yes.”

“Excuse me, can I ask a question?”, I say to someone I think is a doctor, while they are pumping and pushing and prodding. “Yes?”, she says. “Should I call his Dad to fly in? He lives in Arizona.” …

“Yes.” she says, “I would.”  I did.

Bone Marrow Transplant—It’s Time!

cory hitchhikingLate July 2013

Cory, as usual, flew in by the seat of his pants (literally flying in from New Mexico to arrive at the hospital at midnight….he arrived at Children’s at 12:15). Turns out he was supposed to be there at 8:00pm and I received many calls from the hospital asking where he was. I don’t think that he informed them of his quick jaunt to his Powell family reunion across the country 3 days prior to his transplant admission, but there ya go.

He went.

He made it back in the nick of time for them to stay on schedule. Chemo was to start immediately—the most intense chemo he had ever had to completely and totally wipe out his immune system and any cells that had any inkling of leukemia. Gone, never to return, wipe out both his good and bad cells. Totally unrecoverable on it’s own. Scary, in a way, being 100% reliant on someone else’s bone marrow to stay alive at this point. We didn’t speak of it.

Then they would replace it with this stranger’s bone marrow, who’s cells would set up shop and create a new immune system made up of healthy marrow and blood cells. (Super crazy that these cells know where to go in this other persons body to make new marrow!)

So, chemo went as usual, but with a little more lightening speed of symptoms. Lost  Cory color and regrown hair within a few days, sickish and weakish and vomiting rather quickly. His vomiting was incessant. They wanted to put a feeding tube in for nourishment since he wasnt keeping anything down, and they said post transplant it can be good to have…none too pleased, he allowed it to be fed down his nose into his stomach, only for him to vomit up the tube with in 24 hours. So much for that.

Then came The Day.

I took the week off work for his Transplant Week. His transplant looked like this:

He is sitting in the hospital bed hooked to his Pole. They brought in the bag of cells, they hooked it up to the lines already feeding into his veins, hung it on the Pole and in it went. It was rather anticlimactic and uneventful other than the banner hanging on the bathroom door that said “Happy Cell-Day!!” with two big yellow smiley faces on it.  The nurses made him a little banner celebrating his “new birthday” (which he wanted no part of–”My birthday will always be my only birthday.”, he said to me with a little roll of the eyes.) He still outwardly appreciated their efforts, but didnt personally embrace the pomp and circumstance. He was just doing what was necessary to get on with life—and he liked it plain and simple. Which it was.

Then we waited. For what? For The Numbers…..day after day. So many numbers meant so much. Learning the Language of the Numbers took me a long time. At rounds (when all the specialists gather in the hallway of Cory’s room and collaborate and share and decide what’s next)…. We were always invited to the party. Cory always declined. So I would attend . The doctors would rattle off the numbers and I would just end up saying, “Is that good??”  Sometimes it was, sometimes down a little, but overall, he was on the right track with the right numbers climbing and the wrong ones status quo and “normal” for a BMT patient.

He  was in the Bone Marrow Transplant Unit. Still floor 5, but we took a left at the yellow brick road instead of a right.  There was new everything here…new nurses, new doctors, new rules, new parents, new children fighting for their lives.

BMT unit rules: NO eating or drinking in the room.

NO using the patients bathroom.

Scrub upon entering room, scrub upon leaving.

Do not be an idiot and show up with a cough, cold, or illness.

So, when I ate, I went to the Parent Room. Most times, we ate in silence, those other parents and I. Lunch went like this….

I brought my tray in, squirted with hand sanitizer upon entering the parent room….grabbed a clorox wipe, grab a coffee cup, wipe the counter I’d set my cup on, wipe coffeepot handle, pour coffee, wipe the handle of the coffee pot after putting it back, wipe counter again after picking up my cup. Wiped my spot on the table, wiped the arms of the chair I would sit in. I would eat, wipe the table again, wipe the arms of the chair again and push the chair in with my knee. Dump my tray, squirt hands again. Grab three more wipes, wipe the doorhandle to the bathroom, open it, wipe the toilet seat, do my business, wipe the toilet seat again, flush with another wipe in hand. Turn on the water to wash my hands with the other wipe, wash, turn it off with the wipe, wipe down the sink, use the last wipe to wipe the door before and after opening it, turn around and wipe the outside door handle one more time for good measure. Leave room and squirt on my way out.

No Joke. We All were protecting every child on that floor, including our own, because it was a Unit of childrenwithNOimmunesystem.

Germs were more than the enemy….they were Evil little somethin’ somethings on this Unit. They had Power here….a very real instance where something none of us could see could take our children out. Out.

Cory had a fever in the first week…the first of many instances of something making its way in, or something dormant in his body gaining New Life because there was nothing in him to fight it.

I never knew what it was…just knew he was sick now and again that first month. Antibiotics were a daily diet. And plenty of other preventative or post-ventitive or current-ventitive medications flowing from bags into him. I felt clueless and in awe all at the same time, most of the time….of everything.

Then this one time, though, at this one place… they gave him a preventative dose of a yellowish colored medication in-a-bag (an Anti-Fungal a day might keep the Fungus away?)  It’s name was Ambisome .

They hung the bag on the Pole, it dripped into his line and into his vein and into his brain and body, and they left the room.

This was all of a couple minutes, tops, but is in slow motion in my head….He was talking to me—then he stopped. And all at once his face and lips swelled before my eyes, he broke out in a rash, he was gasping for air, I was pushing the Nurse button and said “He can’t breathe, his lips are blue”. And I whispered “It’s ok, it’s ok” to him.

I was remarkably calm. She came in, put Benedryl directly into his IV, and it all subsided. They slapped a red allergy band on his wrist that said, “Ambisome” on it.

No more O’ that.

Welcome Home, Cory.

Silver Lining….Love, Dad

cory cousins sibsAmazing that in a 6 week period created out of events of which Cory had NO control (his bone marrow transplant being postponed), that he was able to hug almost every person he needed to OR they needed to hug him before his passing. SomeOne knew of what was to come and gave this beautiful gift of peopletime to him and them. The Godincidences continue to blow my mind.

He called this “The Best Summer I ever had.” as I sat by his hospital bedside in the ICU. He’d had a Miracle. A true, blue Miracle. The doctors used that word, so it must be true (funny how a doctor stating it makes it more official….) But more on that later—The Miracle allowed more Time and meaningful conversation with my son than I had probably had with him in the previous 5 years put together.

1 month of 24/7 together. This was one of those conversations.

“What made it the best summer?”, I said.

I could feel Wisdom coming.

“I just wonder if…” and a tear from him. Isn’t it funny how when you see the tears of ThoseWhoDontCry, it melts you?? I was mush.

“If what?” I say.

“I just wonder if I should’ve been spending my time with you, my friends, the fam. < He really said “the fam”…I love that> I mean, I spent real time with real friends, and the reunion in New Mexico was awesome….” Okay, lots of tears from him now. I haven’t seen this since he was, like, 8 (Be strong for him, suck it up, I tell myself). “I just wonder if I should have spent more Time with everyone instead of exploring all over the country….”

“No, no, Cory…” and I have nothing. I lean over his bed and grab his head to my face. I am trying desperately to keep my composure, because I realize that he is speaking as if he knows this isn’t going to end well. And I wouldn’t change him or his adventurous, nature-loving, exploring and inspiring self for anything. It was HIM to wander and to wonder and he inspired others to do the same.

But he wondered….(so, when it comes down to It… to the End Game–it’s the People, people!) It’s the People we wonder about and possibly regret about and think about in our last days. Did we spend enough Time? –(Take that one home).  Do we spend enough Time with the people we love and love us? He wasn’t thinking about what job he’d had, what schooling he’d had, where he went, what he did…..Cory was only thinking about his People, with sad and happy tears.

baby cory charlieIn his Dad’s, Charlie Powell’s,words….a piece of The Best Summer Ever:

“Are the doctors ok with you flying ? Are there restrictions?”   After dealing with chemotherapy and a compromised immune system this seemed like a logical question to me.   “Nope, I’m good” Cory tells me.    I kind of knew he wasn’t giving it to me straight and I think he knew that I knew,but we didn’t say anymore about it.     

We had been talking about it since March.   My parents 50th Anniversary and the ensuing reunion of sorts would fall just about exactly when Cory was scheduled for a Bone Marrow transplant.     Cory was going to miss it.   As was his nature he didn’t complain much, it’s another unfortunate scheduling issue.     For someone who loved and longed for freedom so much he would roll with it and just consider it something he had to deal with.     He didn’t ever bring too much attention to what he was going through.

So now with several potential marrow donors backing out we suddenly had this window of 3 days that Cory could fly to New Mexico and see the family.    Trouble is… we only have a day or two to find a flight and scheduling and pricing were extremely prohibitive.    Priceline, Travelocity, and all of the last minute deal makers were not helping   I remember these words “I don’t mind waiting and I don’t mind airports” and then “but I understand if it doesn’t work out”.   I almost was ok with that for a second since it was just one day ago that it wasn’t possible anyway.    I immediately felt guilty for even thinking of not trying again.      He needs this.   He won’t complain, he won’t take it personally, he won’t whine or pout or bring more attention to himself, but he NEEDS this.     He’s been through so much, we can’t have this reunion without him.     I searched again and again, made a few calls and found a flight that worked with his schedule,  as he was to report to the hospital Friday night at midnight.      I would NEVER forgive myself if I hadn’t found that flight.    

The next three days I just looked at him.    I am in awe of this man.     He never once talks about his journey through cancer(s), treatments, surgeries, etc  unless asked.    He skillfully deflects certain conversations and makes others feel comfortable.     Instead he’s got a double splint holding his broken cadaver bone arm together, his other arm has bandages protecting pick lines installed in his veins, he’s wearing a signature Cory fedora and he’s just smiling and laughing with his cousins, playing cards, and soaking up the love that surrounds him.      You would never know he was sick by looking at him.    It would be hard to understand all that he’s been through and all that is going through his head.    For now though, It is so incredible to just watch him.   He was truly happy.

                He would say it a couple of times but I know he thought it constantly, he wanted to stay.   He was so glad he made it.    He said it was just what he needed to go back and “power through” the next phase.    He was always grateful for the simple things but this was big for him.      I’m still actually haunted by the fact that we almost didn’t make this happen.   I think about this a lot still.    I, ME, his dad, almost didn’t get him there !!!     I am so glad I tried one more time.  

   cory poell familyIt was just for a couple of days unfortunately and because he had to be in the hospital Friday night and some people weren’t coming in until the weekend.    We decided to take a picture of him and planned to paste it in later. 

Irony that is both beautiful and heartbreaking is when looking at a picture of a person who isn’t with us and wasn’t in certain original pictures, it was he himself who cropped and photoshopped himself in.      Equally as tragic but makes this few days with family more special for everyone that week is that he walked off the plane that Friday night after leaving us, he checked immediately into the hospital.        

Although I guess we knew the possibility was there,  I don’t think any of us really knew that would be the last time he would be able to leave.  “–Charlie Powell, Cory’s Dad.

 cory charlie jim

Silver Lining…..Friends

The Best Summer was ironically created by the fact that Cory had three bone marrow matches pull out on him. It postponed and postponed and postponed his transplant. And worried and worried and worried his family.

He remained in remission (praise God) the whole time, so his transplant wasn’t compromised, and he became stronger and healthier every day. His hair and his goatee started to grow back in, his muscle mass was evident again, and his color was Cory Color again. He had energy and smiles. He was beautiful and happy.

He also had precious Time with close friends and close family.mary, cory, venessa

Above: (Mary, Cory, Vanessa, and Jason…it was the summer of ’13)

In the words of some of his collection of big-hearted people who called Cory “Best-Friend”:

Mary Parker: “My favorite memory of Cory is him being at my graduation from college. I remember sitting there, and being terribly bored, but looking up to where my family was sitting, and seeing him sitting there. It meant the world to me that me took the time out of his summer to come sit through a three hour graduation. He was the only person besides my immediate family that even bothered to come. I will never forget that, ever. We had a lot of fun that epic summer, but that’s the one that I hold closest to my heart.”

Vanessa Bauer: “Attitude was everything. I had read about how keeping a positive attitude was the best thing for friends and family of someone with cancer. The crazy thing was, Cory was always the strong one, keeping me together, holding me in place. Even when he was sick and struggling, he told me often not to worry and that everything would be okay. To him, there was no option to complain or whine or throw a fit (as I surely would have done).

It was unlike me to be spontaneous, and it was Cory who showed me how.The summer fell between his last chemotherapy treatment and his transplant and we decided to go all out. We wanted to make every minute count while he was “free”. We did everything we possibly could in that time, only separating when he had to go to the hospital for tests. I remember one day we went and did some light day-hiking. He flinched when jumping across a creek and said something along the lines of, “Oh yeah, I had a spinal tap and bone marrow biopsy earlier today” like he had forgotten and it was no big deal. I had done my research, I knew how serious everything was, but Cory didn’t allow himself to be worried about it, so I tried not to show concern either. There was no reason to dwell on the “what ifs” at that time. We just did what we could to have fun.

We played card games and board games and listened to music and  teased each other relentlessly. We drank coffee all day, and Cory’s favorite beers when we weren’t drinking coffee. We planned out all of the things we’d do following the transplant and his arm surgery. We laughed a lot. We hung out with friends, made a lot of pizza and ate all of the food in his grandparent’s house. The time to have fun was now because all we really knew was that the next 6-12 months wouldn’t be pleasant for him. After my initial questions, we never addressed the transplant as anything but a hindrance; a speed bump in his plans. In our plans. There was never a doubt in my mind that Cory would beat the odds and come out on top. He was the bravest and strongest man I knew and if anyone could beat the odds, there was no doubt it would be Cory.”

cory annaAnna Dailey: “Cory, it’s pouring rain and there is no high ground, where do I set my tent?” “Cory, I can’t start this fire- here’s what I have to work with.” “Cory, I hear animals and I’m scared.” We were thousands of miles away at times during that summer but Cory was always just a phone call away. He never said he was busy or needed to call me back. He never got off the phone until my worries or problems were comforted.

The year before that summer we had BIG dreams that we talked about, obsessed about, constantly. We were going to travel the world, money or no money, with gear or bear, it didn’t matter- but it WAS going to happen. We made dramatic changes, and working very hard all year to make this a reality. We sold all the belongings in our apartment, saved every penny we could manage, slept on the floor, found our cats homes, and made due with only the necessities in order to reach our goal. We wanted to be on the road as badly as we wanted to breath. We ached to be lost in the middle of no where. We were very passionate about our plan… and We Made It Happen!

We were then to meet up at Burning Man – Cory, Vanessa and I. We 3 had the most magical time at Burning Man- there is no other word I can think of to describe it. We 3 have the most intimate connection, have gone through so much, an unbreakable, unconditional friendship, we fought The fight together, we cried together, we had a true love and respect for one another. Cory, Vanessa, and I. For those of you that don’t know, Vanessa is the only reason I know Cory. Vanessa is the reason I have him in my life. I owe everything to her for this.”

ashlyn coryAshlyn McFall: “No matter what the circumstances are, no matter what crappy treatment we knew he was facing. We. Had. Fun.  Concerts, movies, walks in the woods, and just sitting around doing nothing- I’ll never forget any of it. Hanging out at his grandparents house, at Vanessa’s house- where ever we could. We made the most of what we all considered his “free” time culminating (I think) in the Bunbury Music Festival.

Cory and I went to the festival the year before, but having the rest of the group with us made it that much better. Jimmy and Sarah came, as well as Vanessa’s brothers and some friends. We sang, we danced, we laughed. We were a rag-tag bunch bent on enjoying some music with each other and a handful (or 100 handfulls) of hipsters (;. I’m so thankful for the time I got to spend with Cory and everyone else last summer. I have memories to last a lifetime and then some. We certainly did it right.

cory terriTerri McDonough:”I hadn’t seen him for quite some time but it was just like old times. We talked and debated about things a lot (just like old times). It was always the same. He would try to end it by saying “whatever,” to which I always replied “fine then I win.” Of course that just started the whole thing over again. We liked sharing our old memories the most I think.

One day when he was out of the hospital we decided to go to a park and grill out. We had tried doing this once the summer we had first met (that didn’t go so well) but luckily this time we had a better idea of how to set a fire to actually grill. Cory played around with my camera. I still have the random pictures he took, and after that we went for a walk towards the creek. When we left he asked if he could drive my car home. I never let anyone but my brother drive my car but with Cory I didn’t even hesitate and threw him the keys. On the way back a My Chemical Romance song came on so naturally both of us started belting it out and laughing. That was the last time I really got to hang out with him outside of the hospital.

During that summer we never really talked about him being sick. We just talked about our memories we shared, what we had planned for the future and places we wanted to go. I’m very blessed to have gotten to spend that summer with him and I’ll cherish those memories forever.

jason coryJason Kaiser: “I picked them up sometime after 5. In my excitement I had planned to sleep in my van for ease, but in my excitement forgot to grab a blanket. Of course Cory provided. That is a statement I can make more times than just about any other. Cory was a provider. He was a fixer. We’ll touch on this more in a moment.

We arrived at our destination sometime later and set up camp. We had pizza, and an endless supply of conversation. We were ready. The mosquitoes were ready too, though they seemed to be interested only in Vanessa. Cory and I both remained unscathed.  It was a crowded night on the campgrounds. Filled with Ohio’s most colorful characters. This only added to our amusement. The root beer didn’t hurt either. (root beer was the astonishingly clever  codeword for the beer we smuggled in.) The heat only seemed to intensify as the nightt drew on.

At some point in the night a Man, whose sobriety is questionable, warned us of some ravenous and troublesome raccoons that were loose on grounds. They never graced us with their presence that night. Someone else did, though! As were chatting, eating our pizza and enjoying our root beer we heard a strange sound. A high pitched whine.  At first I wasn’t sure where the sound was coming from, then we all saw it at the same time…

A lost, crying child standing in the dark. Scared and alone. We all froze for a second. Me especially.

Then Cory shot up. Instinctively went up to the kid and asked what was wrong. He couldn’t find his daddy. Cory introduced himself, asked the kid`s name and if he remembered where his camp was. He didn’t. Cory began making conversation with the scared child, trying to calm him and maybe gain some helpful clues as they headed in the direction that would likely lead the little lad home. Of course it all ended well. Cory led the kid back to his oblivious parents. And returned, smiling as always commenting on how ridiculous the whole situation was. But that’s the kind of person Cory was. Where I froze and hesitated  Cory sprung into action.

It was just as true in that moment as it was at the end of his beautiful life: It was never about Cory. It was about everyone else. He was nothing without us and we were lost without him.

Me again: 

These, my friends, are a Few Good Friends

They played with him when he could play; They talked with him when he could talk ; They walked and hiked with him when he could walk and hike; They ate with him when he could eat; They sang, danced, and laughed with him when he could sing,dance, and laugh; They invited him when he could come; They camped with him when he could camp; They planned with him when he could plan.

Then…

They kept him company when he couldn’t play; They talked to him when he couldn’t talk; They sat with him when he couldnt walk or hike; They held his hand when he couldn’t eat; They listened to music beside him or played music for him when he couldn’t sing,dance,or laugh; They came to him when he couldn’t come to them; They reminisced when he couldn’t camp; They hoped and prayed for him when he couldn’t plan.

I loved them before because Cory loved them. That was enough. I love them now because I know them. I am better for it and ever-grateful for their giving Cory their Time, Laughter, and Love in his last days.

Because at the end of the day….

Chemo (detour:California)

March,2013…So the plan was in place. We would fly out to California, where Cory had begun his new life in his dream state 6 months before. We would pack up his things to come home to begin 2 consecutive month-long rounds of chemo to bring his cancer into remission.
Why not just do chemo and skip the transplant then, if it would bring it into remission? I’m glad you asked, because I did ,too…..
The reason is that someone has to be relatively healthy to recieve a transplant. And Leukemia, at the advanced stage Cory was in, is an aggressive beast, so remission is usually a short-term affair. So, he would be very temporarily healthy. Just long enough to receive  his transplant.
Point being, the timing of the Plan was essential.

We hop on a plane and proceed to have a beautiful, beautiful time. He had to wear a mask in the airport so he wouldn’t catch anything that could be life threatening or postpone the timing of the Plan….so other than some people taking the long-way-around us when they saw the mask, it was a “normal” trip. Changing planes, standing in mile-long lines waiting to be patted down, standing in the Body XRay machine, dozing in vinyl covered chairs, playing cards on the floor, yawning a lot, people watching, enjoying each other’s company, or comfortable in one another’s silence….
You see, Normal IS Beautiful, but no one ever really gets that until things aren’t normal. Then you Know.
Anyway, we sat at a too-pricey wine bar and shared a flight of wine and ate cheese, crackers, and grapes. And left hungry. We were on our way to California, though, so when in Rome (or on your way to Rome)…

We never spoke of The Cancer on this trip.
We had spoken of it before we left…Alot…in the Shock and Grief and What-Now and I Cant Believe It and You Can Beat This talks…
He cried once in my kitchen. I use that term loosely. It was a shuffle with a look at the ceiling, then a longer look at the floor, a couple short catching breaths, then eye contact. His eyes were welled up and a tear was creeping down the sharpish edge of his cheekbone. I wiped it away. My eyes immediately filled as well and we shared a couple This Sucks quietish tears.
I decided upon Diagnosis, though, that I would never be more upset than he was at any given moment. If he could handle this, then I sure as hell could and would. I did scream and sob, mostly for him, but I saved it for my pillow.
My self assigned jobs would be pray-er, encourager, positivity speaker, and love, love, love & affection-giver, and advocate for whateverheneeded. (Mom Jobs for sure, but what is the point of anything else?) …Oh! and laugher! Most important job of all.

I like that our family eventually resorts to humor in tough times….it’s nice to laugh sometimes when nothing is funny.
Like a little light in a dungeon.
We laughed a lot on this trip.

After landing in San Fransisco and renting a car, we drove in crazy bumper to bumper highway traffic to the San Fransisco bridge. We parked illegally (Cory brought out the edgy side of me), and asked a stranger to take a quick touristy picture. I wished we were tourists.

We got to the funky, eclectic place Cory lived and worked. A goddess-loving, large-wildcat and bird sanctuary. There were 101 really interesting stories about the people who lived, worked, and passed thru there…Cory was lovingly amused by them all. It was a property wrought with contradiction, like life usually is. Gorgeous courtyards and gardens and beautiful animals to the front. Beatup trailers, RVs, and unfinished or abandoned ideas to the back.

Cory was a Cat-Caretaker/Web Designer. That wasn’t on the list of childhood “What do you want to be when you grow up?” choices, but it encompassed his gifts and talents to a tee.
He was the family “fix my computer” Guy, he scored a 4/4 on his AP Computer test, went to college for Computer Science…computers and code were one of his things. And “their website is stuck in the 80’s, Mom”….

He was also an Animal Whisperer. Vanessa (Cory’s bestbest friend from college who lived and worked there with him) and he relayed a story from the winter before of him spending days with a wildcat to remove a string from a surgery it had had to drain an absess. In her words, “Cory spent a week gaining her trust; slowly approaching her in her cage every day saying, “Hey baby girl, I’m here to help you. Will you let me help you? Shhh, it’s okay,” or some variants thereof every single day. Until he could approach her. Until he was able to pet her her. Then he was able to sit next to her and scratch the top of her head with the scissors in his hand so that she’d get used to the scissors near her face. Finally, he was able to try to cut the piece of string. The scissors were too dull- it wouldn’t cut. The wild cat got angry, growled, and ran into her den to hide. It was another four days before she let him that close to her face again. Cory remained calm and patient, stopping by before getting on the bus to college, and also when he got home. He finally got the string out of her face, no problem. From then on, she often let him pet her and play with him.”  He succeeded. The makings of a legacy…

At the farewell dinner the next night I heard that story a few times over from the staff there, coupled with words of love and admiration for him. I sat by a lovely woman (seemingly my age, seemingly unassuming with mousey brown hair and grocery store-shopping attire) who after talking about how wonderful Cory was, and what utter fascination she had for my being a mother(“How did you become a mother?!” Ummmm….), she then proceeded to make a strong case for the reality of Teleportation. For real. I tried to look matter-of-fact while I listened. If only….
When I shared this with Cory and Vanessa, they were not surprised. Cory affectionately laughed and Vanessa only said, “Ive got to get out of this place…” They were observers, employees, and loved the people, animals, and the land— but carried their Midwest sensibilities in their back pockets.
 I enjoyed them together so much.

Vanessa had prepared a room in the resort for me. I was so,so touched by her hospitality, she was taking care of me before Id even arrived. She attended to the little things so I would be comfortable. I decided I’d write to her mother…shed be proud of her, I was sure. She’d raised a Beautiful Heart and through her sometimes tough exterior, Vanessa touched me. I never had the chance to spend much time with her previously, but decided she was family the moment I saw she and Cory interact. Their relationship had the markings of dependability, ease, acceptance, understanding, hardship, laughter and mostly, of uncondition. I could see in her eyes she was scared and vulnerable and worried with the news of the new developments. I wanted to scoop her up and bring her home with us.

In the 36 or so hours I was there, I had the Napa Valley Cliffnotes Experience. We walked the Meditation Labyrinth and the Fresh-Vegetable Gardens on the property, walked to the local coffee shop (a moment I am forever indebted to Vanessa for snapping this picture), visited the local self-employed grocer, made rounds to 4 of the vineyards, ate greasy Mexican food, also ate a Vegan fresh and filling meal, drove with the windows down and the music loud, and took in the breathtaking sight of the landscape. I know why he loved it here.

The Reality of the situation was always floating around us, but for now, we consciously and collectively treated it like an afterthought.
“So, did you call the Mini-Storage place?…oh, good, should we put my name on the contract too?…..the grape vines are shaped so funny, they look like little trees, don’t they?”-Me
“The vineyard is down the road to the right….hang on, first I have to stop at the doctor I’ve been seeing here.”-Cory
“All packed? (why is he coughing?) ….So, are these birds trained, too?”-Me
“The tow place is on its way….Have you met my friend Dragonfly? He’s from Ohio, too!”-Cory
The tow guy had been called out of dinner with his family to come too many miles to tow Corys motorcycle to the storage unit. He showed us pictures of his kids. Cory pushed the buttons to do the lift….I had flashbacks to when he was a little boy.
Cory thanked him repeatedly. He was So appreciative of every human being. All the time.

We had the privilege of raising a Beautiful Heart too.

So-long, California. See you all too soon….