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: …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: MIracle Man

 September 2013….I am so touched by Life. The good, the bad, the in-between. I’m touched. And Life brings me to tears often.
My beautiful daughter will say to me, “You are crying, AGAIN?”, because it might be the littlest thing….

So to have an extraordinary experience such as one’s child being in extreme suffering and inexplicable pain and being told he is dying, come to an already cry-ie, emotional, touchy-feely person mom…..where does one go from there?  I found out.

Silence.

That’s what’s next. Silence. enjoy_the_silence

Because there is nothing left. It is the point of realizing one has No Control, No Power, No Influence, No Nothing. A small demonic fungus, the size of a cell…..a cell. Was bigger than Mom. Was bigger than Dad. Was bigger than the doctors. Was bigger than Life.

And that’s hard to fathom. It’s hard to take. But there is No Other Choice. This micro-something has more power over your child than You. You who birthed and invested every emotion and moment and time and energy into this Other Human Being Who Is YOUR CHILD, a piece of you, came OUT of you….then THIS micro-something fungus is determining your child’s destiny and you can’t do.one.thing.to.stop. it. and it is causing him pain unending. And, apparently, neither can the medical community stop it.. Even they have called wolf.

All I could do is Pray. To the one thing bigger than me. Bigger than the demons. Bigger than the micro-organisms.
God.
He’s all I had left.
Please, please, please, God. Even though there are 7 BILLION people in the world. Save MY son. 7,000,000,000,000. Save MINE.
I thought about Africa, I’ve been to Haiti, I thought about the other precious little ones I peeked in at in the PICU who were our neighbors now, I’ve seen pictures of orphans in tons of countries…..Lots and lots and lots and lots of Mothers lose their sons Every Day. But save Mine.
Because why? I could give the same list of convincing, heartfelt reasons that any other mother could…But save HIM. Because I Love You, God, save My Son??
I prayed with my whole self. Offering my whole self, “Take me instead” …to save him. I begged. It was all the hope I had left.

“Whoever does not love, does not know God, because God is Love“—John 4:8

Love.
He showed up. In a big way.

I have no doubt, in direct result to mine and many others prayer….no doubt. Not that we are special in the 7 billion people in the world, because many, I’m sure, share the same story of answer to prayer, but I’ll take it.

My son stopped hurting. He. Stopped. Hurting. I cannot express in words what this is. There are no words. He stopped hurting. If you knew the agony, the pain that I do not have words for that we saw him experience…the fact that it PAUSED.

That, in itself, was a miracle. Thanks Be.

He made a Turn that last week of September. Mentally and physically, Cory started to come back to us….The doctors were Baffled!

Here are my texts to a friend in September :

The doctors said….”never been reversed” ,”that would be crazy” ,”would be a miracle” ,”never known anyone to survive” ,”he has anywhere from 2 days to 2 weeks”….well, God has other plans :)))))
They are now saying, “never been seen” , “miracle”  and “no record of this rally ever occuring”….
Hi friends…Though Cory is still “very sick”, Prognosis has changed! They are talking about moving him out of ICU this week. Miracle Man. Thanks so much for continued love, prayers, and support.

We called him Miracle Man.

My son in the ICU….it takes many hands.

So after the first few days of shock, sleep deprivation, and gradual acceptance of the circumstances we were in….

…. my New Life and New Job began on Floor 5, Pediatric ICU, Cincinnati Children’s Hospital.

I knew I had to get over myself. At some point, we have to pick ourselves up, dust ourselves off, take stock of the situation, and get to work, don’t we….

I slept, kind of, finally. There was only one chair that pulled out into a “bed” in that room. Cory’s Dad and I took turns sleeping in a chair stooped over Cory’s bed onto a pillow or in the pull out bed. We played the Parent Sleep Room Lottery every day (a separate sleeping room for one, no windows….there were only a few for the whole floor). But because the unit was fair to all the parents on the floor, we “won” every three/four days or so.  Then both Charlie and I would get a bed for the night. It was nice to be in the pitch dark on a real bed, but it felt too far from Cory and I slept with one ear open in case my phone might ring from the room down the hall.  Most nurses did a fantastic and considerate job of using flashlights to work at night in Cory’s room, so I preferred to just sleep in his room.

We had a routine in the morning… taking turns leaving to get coffee, eat, shower, dress, taking care of phone calls for work, business, our families at home…ready to face what each day might bring.

During the day, I started my PCA (Nurses Aide) training (not really, but felt that way). In these first weeks, we had different nurses every day and every shift. I learned to understand how critical Cory’s situation was by the number of nurses assigned to him.  In the first week, there were 2 nurses whose only job was Cory every day and every shift. They worked the whole time.I mostly didn’t know what they were doing, but I asked enough questions to probably be annoying, and I asked where and how we could help…..and they told us and they taught us. Turns out many loving hands were needed for the simplest acts of care. ❤

The first order at hand was his blistered back…..we were assigned a skin-care-specialist Nurse at first who taught us how to turn him, carefully pull off his non-stick bandages, “clean” the skin, prepare the next bandage with a cream and netting that kept it from sticking to his blisters and open wounds, and how to keep everything sterile in the process (blue gloves were my newest accessory)….the “bandages” covered his whole back. He was being treated with the same protocol as a burn victim, and even though he was sedated, he would wince with pain when he was turned and when the bandages were changed.

Every new nurse would bring new knowledge, or something they’d picked up in their experience that collectively helped Cory and his comfort or safety. For example, because Cory was on his back, the bandages would often bunch up or fall off his back. An “old school” nurse was assigned to him who sat herself down and hand-sewed a vest out of a gauze material to keep his bandages on, another nurse knew a trick for turning him that made it much less painful for him, another was a Pillow Queen that staved away bed sores, and another came in on his day off to cut a bandage for Cory’s pic- line that he designed especially for Cory to keep germs out that no one else knew exactly how to do….the list goes on. and on. and on. These may sound like not big things, but to Cory, immobile and in pain and should have been the “Boy in the Plastic Bubble”, they were invaluable contributions. These were just loving gestures of time and teaching offered because they cared. This was Over and Above the 100 other juggling acts they were managing that stemmed from their years of education…medication and lines and charting and sterility and numbers and math and science and executing directives of putting square pegs into round holes.

We learned where to get our own ice water, our own bed sheets and towels, our own scrubs if we needed them, ect.  We tried hard not to expect the nurses or aides to “wait” on us on top of their already over-burdened To-Do lists. But they would have if we asked.

Our He-roes and She-roes.

I paid attention to every instruction. When new nurses would come in, I felt awkward at first correcting the way they might be doing something for Cory, but they were so gracious…knowing we had already had witnessed and done it many times. Eventually, the nurses passing the shift baton would say, “Ask the parents if you have any questions.” or they would tell the incoming nurse that we would do certain jobs ourselves and the nurse could assist. Eventually, the awkward went away, because we were a Team. Charlie and I were the “constant” in Cory’s care because we were there all the time, and we were his advocates because he couldn’t speak for himself. They were the Pros. We were all learning from each other on Cory’s behalf, and the tasks were aplenty. I took my new job very seriously and I learned more in two months than I could ever blog about in years. Not just medical jargon or protocol, but about People and Hearts and Life.

The nurses, the staff, the doctors, the parents, the family, the friends—the first Team Cory.

(About those blisters—the Infectious Disease Doctors decided it was GVHD.)

Campath was sent in to suppress his immune system so it would stop attacking his skin….It all sounded so backwards. Trying to build his immune system, but having to suppress it…but not too much.

This on top of his Respiratory System, his Urinary System, and His Digestive System being aided by Gizmos and Gadgets going in and coming out of every orifice.

At this point, I still had NO DOUBT that he would make it. I adopted Cory’s mindset—I just focused on each hurdle (no matter how colossal it might be) as a bump in the road on his way back to Living Life.)

“Hoping for flatter ground and some sunshine tomorrow. I miss the sun. I’m tired of these clouds and the wet. Fingers crossed!!”–Cory Jay Powell, Day 33 of his cross-country bicycle  journey.

My son in the ICU….this will never leave me.

September 1,2013…”Mom?” Says the doctor (in this childrens hospital, they call you Mom to address you. Keeps it simple for them, I’m sure, to not have to know names, but it’s meaningful, really…it reflects the real intimacy of what you are all IN together. Someone’s Child is in their hospital bed. Not Mr. & Mrs. SoandSo’s child–Mom and Dad’s child)
He had glasses just like Cory’s and disheveled dark hair and eyes that look like, well, like things aren’t good. I wanted to tell him to get some rest. But he uses a matter of fact tone with just a little singsong in it that softens the gravity of what he is trying to say. And says, ” We have things stabilized, but his heart and kidneys are working too hard, and we need to intubate him.”
Huh?
“If the machine can do the breathing for him (Oh….a ventilator), then it will take the pressure off his other organs so they can heal. We need you to sign here.”

….ok, wait….back this truck up.

Im signing to put him on a machine….one of Those machines. One of the machines on all the hospital TV dramas where families have to decide when to keep them on or take them off at some point. Am I really here? Is that really my son lying there, and he needs a machine to breathe for him?

He signed everything himself up until now. For the last 2 years of battling cancer, he signed all the documents. For every procedure, poke, and prod.
I wanted to consult him….or even consult a familiar face. I looked over at his precious self lying there with things coming out of every orifice….except his mouth. He was inconsultable and I was it. (It was one of those moments I have, occasionally, where I feel like a fraud. I know I am 46 and I feel 50 sometimes,I have a career and 4 kids and a husband and own a house, two cars, two dogs…but, the jig is up! I am Not Really an adult. Soooo, I’m really not qualified to make these decisions. They should really be asking a real adult to sign that paper. Where’s my mother?)

I, Medical Power of Attorney on the scene, never felt more powerless.
(Little did I know that this was a relatively minor sign-off in the scheme of the following two months. But everything is relative…)

“Mom?”….I wish it was him calling me mom.
“So, it’s necessary?”
“Yes.”
“Will he feel it? Does it hurt?”
“Oh, no….he will be completely sedated. We will give him something to basically paralyze him temporarily so his body doesn’t involuntarily react, and we will put the tube down his trachea, but he won’t feel or remember anything”

I signed.
I watched him use a tool that looked better suited for a Kitchen-Aid mixer than a mouth. It was a bit of a struggle to get it in, but he did. And Cory looked peaceful and asleep while the doctor positioned and moved his neck and head to receive the tube, and pull it out and back in to properly insert it.

But he wasn’t peaceful or asleep. He felt and remembered everything.

When he became aware again, was it days?? or weeks?? later (Time is not a thing in the ICU…the Regulator of days, nights, & weeks in one’s brain is officially Off Duty)
…Anyway, it was the first thing he communicated to us (He couldn’t talk, because of the breathing tube, so he wrote it on a white board or typed it on his IPad one finger at a time) was that he was Awake, awake, awake. He kept writing the word Awake. Then he would point at his breathing tube, with pleading eyes to understand, and we finally put the puzzle together….He was awake during intubation. The trauma was evident in his eyes. He would repeat and rewrite it to the doctors…anyone who would listen or read. Then, with his going in and out of awareness and sedation, he would forget he told us….and he would tell us again. Broke my heart everytime. When the tube was finally removed, he told us finally with his voice….he was awake and aware couldn’t move or respond or tell them because he was paralyzed and it was terrifying and it was painful and he was trapped-his word.

I’m sorry. That must’ve been scary. I’m sorry, we didn’t know. I’m sorry, we’ll put it in the chart. I’m sorry, Really sorry. And everyone meant it.

He needed a higher dose to sedate him properly. No one knew. Now we did.

Charlie took a picture of one of his writing communications…He first wrote, “I was awake.” Then sort of wrote on top of it, “I thought I was in a coma.” Then, after all of our repeated apologies, his ever positive, grateful, optimistic self wrote, “I’m here 🙂 ”

whiteboard-225x300

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….

What If…..the journey of Finding a Match

Im going to start this post with the same words I end it….(WHAT IF….it was Your child, Your spouse, Or Your parent????) What if….

Bone Marrow Transplant : “The procedure is much more like a transfusion than the surgery you might imagine when you hear the word transplant. Typically, the marrow is extracted from the donor’s hip with a needle. (Donor is under anesthesia, feels nothing) OR it is transfused like a blood donation, which is more common. It is then injected into the veins of the recipient, just like a blood transfusion. The bone marrow eventually travels back into the bones and starts functioning again.
The difficulty in finding a match arises from the body’s own immune defenses. Bone marrow tissue contains certain genetic characteristics called HLAs. The recipient’s bone marrow must closely match the donor’s. Otherwise the body might reject the donation, at least initially, causing a very dangerous disease called graft-versus-host-disease.” –American Cancer Society

So keep in mind that the following is Sheyna Math….I teach Preschool….enough said. Doesn’t change the point, though….

Patients most likely to exact match are a sibling….”most likely” meaning a 25% chance…meaning a 75% chance they won’t match. Jimmy was the only possibility because he had the same parents—and he fell into the 75%—Not a match.jim and cory

Charlie and I both tested as well, though the reason for our testing was to be as precise as possible in finding a match in the Bank. Easy peasy….12 swabs inside our cheeks. The likelihood of one of us being a match wasn’t really on the radar, because only 5 of our specific genes would be a match.

As elementary as possible (because that was the explanation I needed….I was SO confused—which to those of you who know me well doesn’t take much….)—We all have 10 HLA’s (5 from our Mom, 5 from our Dad), so the possibilities of a child from these two parents is pretty extraordinary. You could have any mixture from the 10 genes from your Mom and the 10 genes from your Dad (5 from each) to make up YOU and all of your crazy different siblings! Someone with math, statistics and probability smarts could figure out the amount of WAY unique children you could have from all this. It’s ALOT of varied possibilities.

Anyway, in June of 2013, since Jimmy was not a match, that was the question at hand. Had they found a match for Cory Jay Powell in the Bank? The BEST possibility of a smooth transplant was a 10/10 match. Someone in the world with the EXACT same 10 HLA’s that Cory has….where were they???  There are 7 BILLION people in the world….that number looks like this: 7,000,000,000,000 . There are only approximately 24 Million people registered in the bone marrow registry. Only 1…one…did you hear that?… ONE out of the 24 million registered was a perfect match for Cory. Out Of 24 MILLION! One. One. ONE!

Only .003% of the world’s population is a registered Bone Marrow Donor.

IF EVERY PERSON ON THE EARTH WAS REGISTERED AS A BONE MARROW DONOR, EVERY DYING BLOOD CANCER PATIENT WOULD HAVE A MATCH.

With a perfect match, the chances of survival are MUCH GREATER.

Cory Jay Powell had ONE in the registry.

She actually came up in the bank after a first partial match was found….

1. 9/10 match. A 46 year old man….went through the physical and wasn’t found healthy at the time, so he was a NO.

2. Two more weeks of contacting and physicals of the next partial match….8/10…a NO because of illness. (doctors are freaking…you can see it. Scans weekly now to be sure there are no new Leukemia blasts and Cory is still in remission…he is!!! whew!)

3.Then, SHE came up….a perfect match. 18 years old (she must’ve recently registered, because she was new in the bank.)…A PERFECT MATCH!  What????? 10/10.

10/10…. the Doctors smiles were huge and genuine, their voices high-pitched and fast…… they were ex-cited!!!

She went through the consult (the part where they explain all the details to her)

She went through the physical (she was healthy and a perfect candidate)

She disappeared.   (my mind hears crickets)

They couldn’t reach her any longer by phone, by her alternate contacts, by her email. Nothing.

NO-thing!

Doctors smiles…no more.

I imagined a 18 year old girl (my daughter really, who is 18 in a year)….scared, or dissuaded by well-meaning family members, or just doesn’t know that her Disappearing can cost someone their life…it’s just ignorance. It’s just ignorance. She doesn’t know.hannah bridge

I forgive her immediately, but am heartbroken. What now???

The doctors and caseworkers are worried. I can hear it and see it in their sudden scrambling and emails and phone calls and false smiles while they explain the situations with their shrugged shoulders. God bless them. God bless those Human Beings putting their necks and their hearts out every day to save US. They can only do so much, and they care SO much. You can see it…I had the thought so many times in Cincinnati Childrens Hospital that those Doctors and Nurses had the hopeful smile for us, but they would turn the corner where no one could see, and I knew they cried. They cried because they knew the statistics, they knew the reality of the chances. And they cared about My Son. Saints.

Then came Stan (I named him). 50 years old (50 year old men are named Stan, right?….not like I’m almost 50,lol :))….8/10 match. He was in. We were almost 4 weeks late, but still clean scans, so good. He was put on the Express Train for Cory Qualification and he passed! Consultation, physical, bone marrow extraction! Woo hoo! Celebrate! The man did it. He tried to save My son. Man, I wish I could give him a squeeze he would never forget. God Bless Stan, the Man.

8/10 is better than nothing…..SO MANY HAVE NOTHING—NO CHANCE, because ONLY .003% of the worlds population is registered. GOOD GOD, register!!!!! It’s a swab of your cheek and if you are a match, it’s a day or two down. Please Register. Please, please , please.

And if you are contacted Follow Through! You Have Been Contacted Because You are ONE, of very few and maybe the ONLY ONE,  Out of 24 Million That Can Save  A Person’s LIFE!!! Heeeeellllllooooooo…….

If I could still hug Stan, I would. They only allow contact with the donor after you’ve survived a year. This only makes emotional sense, but I wish I could hug him….I might freak him out thought, because I might not let go! From me it would be all good, all grateful, and all loving. Even if your family member doesn’t make it, you are so, so grateful that someone cared enough to TRY.  For real. I imagine he feels sad that Cory didn’t make it….I want to comfort him and help him know that Cory was grateful for the CHANCE…. I want him to see Cory’s letter to him… ”

“I wake up tomorrow with some anonymous badass’ bone marrow. It’s been hell for me to get to this place but that could have been the end of the story had it not been for the dedication of the hospital staff, love, support, and encouragement of all of you friends and family. And most of all, the great sacrifice of a man that’s never even met me, selflessly offering a piece of himself so that a total stranger has a better shot at life. Thank you to all of you who have stood behind me through thick and thin. But I owe my life to someone that has no reason to care about my well being. And that isn’t something I take lightly. This will be paid forward, in some way. Thank you, sir. You are a gentleman warrior.” -Cory Powell, July 30, 2013

Register, just register. And if you have the incredible Honor of donating and saving a life….Do It.

If She hadn’t pulled out and disappeared….frankly, Cory Jay Powell might be here, or at least his chances would have been greater, and I wouldn’t be writing my heart out in a blog for whomever to see.

Please…..www.deletebloodcancer.org  or www.bethematch.org

It’s so easy….a swab of your cheek….please. (WHAT IF….it was Your child, Your spouse, Or Your parent????) What if…

little cory AJ

Chemo….it’s so ironic

So the months of April and May were very similar to his Ewings Sarcoma Treatment…

He’d check in and receive heavy duty chemo…heavy enough that it had to be inpatient, because it would leave his immune system compromised too much to be in the outside world. He could have select visitors… please come healthy, not even the sniffles… and if you are under 16 you have to sign a waiver at the front desk checking off that you’ve had no fever, vomit, or other such illness in the past 24 hours. Use hand sanitizer before you go in, wash your hands when you get in, hold your breath if you need to cough, and leave the room to sneeze please.  (The coughing, sneezing part weren’t spoken rules, but we all followed them). The other screening was IF he felt up to visitors. He was pretty good about being honest about that and sometimes it was obvious that socializing wasn’t on his radar.

His Nini, my mom, was my pinch-hitter caregiver during these chemo stays….or rather, I was hers. I would do a few evenings a week and covered the weekends and she would be there during many of the weekdays if he needed care. She was an invaluable resource with her medical backround (she’s the “call at 4-in-the-morning” because someone’s sick and “do we really need to see a doctor” person in our family.) She helped me personally, as well, when I still had two teens at home and a full time job. Thanks to her we were able to keep home life fairly “normal” for the kids and my job stable during the chemo months. We really were a team. It brings me to tears as I write this thinking of her devotion to her grandson. Im forever grateful and I know he was too.

It was a dance with him, though, being that he was 25 and an independent spirit, as to if our presence and help was needed or wanted. There was a fine line between his being ill enough to need care or well enough to take care of himself–which he wanted to do, so if he could, we’d back off.  It was usually evident it was time to go home from full time or most-of-the-time caregiving from the tone in his voice or a look or even pulling away when we tried to assist him. Seeing the “I can do it” of his will break through, though, was fantastic. I remember feeling relieved when he would get irritated or it was obvious he was ready to be alone, because that meant he was on his way to feeling better. (When he was well, Cory was a man who enjoyed a healthy amount of solitude–this is the guy who spent 6 weeks riding a bicycle alone across the country and loved exploring hiking and nature on his own any chance he got, so doting and dependence weren’t his favorite thing.)He was fiercely polite, though, so one of my biggest focus’ during his treatment, aside from being there and caretaking when he needed it, was reading him and respecting his independent adulthood when he didn’t need help. He already had to give up so much of his life just to be treated, and in a Childrens Hospital at that.

If he didn’t need “care” and was feeling pretty good just waiting to get his immunity sea-legs back, the family —Me, Dave, Nini, Grandpa, Grandma, Jimmy&friends, or Dad when he was in town (thankfully Charlie has an office in Cincinnati)– one or two at a time, would stop in and pay visits and play a game or just chat.  We’d always call first or make plans, like he was just in an apartment somewhere. And Jimmy would always visit with friends way too late where he would have to get special permission and negotiate getting in.  I was amused by that and Cory enjoyed it too, probably because it was kind of like life on the outside…hanging with your peers @ 11:30 at night, laughing it up…The oncology nurses were always great about making this happen for Cory. I think they had a special empathy for his situation because of their being so close in age to him. When Tyler and Hannah could come, we’d have Forced Family Fun games or a movie night or Cory and Ty would play some video games. Most times during chemo weeks or right after chemo he wasn’t up for any of that, but when he was recuperating and just passing time until his magic immunity numbers came up, he could manage an hour or two with the whole gang before he got tired.  The most seemingly benign moments, were, in hindsight, the most precious. Time.

He invariably asked for whomever was coming to bring non-hospital food in. Of course, we were happy to oblige and feel like we were “doing something” in a situation where we couldnt “do” much. Sometimes he would eat it and sometimes he wouldn’t. He described that his mind constantly wanted Subway, or Arby’s, or Chipolte….but often it was just an emotional affair, because when it was in front of him,  his body couldnt follow through. Those were the Good Days—the 7 days. All pain was on a scale of 1-10 in the hospital. His 8-9 days were definitely those spent outof the hospital.

Then there were the Bad Days. Chemo is everything you hear it is. Nausea, vomiting, fatigue, and compromised immunity are just a nutshell of the symptoms. He was on a now-and-then effective regimin of  about 4 medications to just keep the vomiting at bay.  If one didn’t work, they’d add another, and so on. A lot of times nothing worked.  If he got to the vomiting stage, it was constant, sometimes for hours or full days or nights. Even the oncology team seemed baffled at times at the inability to find a solution. We saw a lot of Baffled when it came to Cory’s journey….

We had a stack of 15 pans and stacks of washcloths. He would assume the position, sitting up, legs crossed…because he knew it would last awhile. I would do The Rotation. Remove the used pan, put a new one in his lap, hand him a warm washcloth, place in the bathroom so nurses could measure the amount, wet a new washcloth. Again and again and again and again. We wouldn’t talk, we knew the drill from last time around the Chemo Block. I used to hold his head when he was a little boy, now I just placed a hand on his back.  There were times I wasn’t sure how his body could keep doing it, heaving and heaving.  He wouldn’t complain. He’d just endure.

At this juncture, I knew, but was so sad that my Mom Super-Powers were out-grown and gone. Couldn’t kiss or put a Band-Aid on any of this.

I also knew, at this juncture, that Cory Jay Powell, was a much stronger person than any of my super-powers ever were.