Pssst. Hey, Happy Birthday, Cory. You would be 29 today. When I was your age I was married with 3 children. You will never get to experience the challenge and beauty of marriage or being a father. …
Source: Birthday Gift, January 3,2017
Pssst. Hey, Happy Birthday, Cory. You would be 29 today. When I was your age I was married with 3 children. You will never get to experience the challenge and beauty of marriage or being a father. …
Source: Birthday Gift, January 3,2017
I am a pretty positive person, in general. So when I woke yesterday with a sense that something terrible was going to happen in my world , I was worried. I couldn’t shake it. I prayed, said positive quotes in my thoughts….It wasn’t going anywhere. It was a physical sense…it unnerved me. It was more than a gut feeling….it was like the rumbling of thunder in the distance with ominous clouds I could feel coming my way, no doubt about it.
Am I losing it? What’s wrong with me? Age?
I called my husband, Dave, to see if he got safely to work. Texted my adult kids and made sure I locked the door before I left my daughter, Hannah sleeping in the house. I drove very carefully to work. I felt like I suddenly understood with clarity what “they” meant by a “sense of impending doom”.
That… or I needed sleep. I decided that waking up against my will at 4:00 in the morning was the culprit. I got to work and the feeling passed. Life goes on.
Only, when I got back home, it was back. I couldn’t sleep. I tossed and turned and worried….about something I couldn’t name. I finally heard Hannah and Dave come in from late nights at work. I went in to chat with Hannah on the end of her bed….”Is everything okay? I’m worried.” “Ummmm, yes?? Why?” “I’m not sure, just a gut feeling that something is wrong….” She patted my head. I went back to my bed. On my way, I looked at the clock and realized I had been up 21 hours…..is this hormones? I am almost 50. I did finally go to sleep and ended up sleeping 7.5 hours which is average for me….then…I woke up.
My eyes popped opened and my breath was literally taken away. It’s here. The Grief Train came rolling through my brain as I screamed in my head and It landed behind my eyes and the tears came rolling out. The no-facial-malformation-cry, saved just for Cory’s Suffering&Death Days Grief…just a steady flow of tears down the sides of my cheeks. I could feel my ears getting wet as I lay listless. I know I am powerless over this Thing that has visited me the past two years with a vengeance in September and October. Then It retreats sometime in early November. For anyone who might not know, we watched my son’s immeasurable suffering in the ICU for 2 months and then he died on October 31 of 2013. It was every bit as tragic as one might imagine, but Life in general is no longer tragic. This form of Grief, though, is. It feels tragic when It arrives. It’s something beyond my daily life that I have no control over. It is the unwanted house guest, that I can’t tell when to come or when to go. I do manage it, though…this Grief is nocturnal. So, it leaves me be while I work. If this reads a little like a horror movie, it’s because sometimes in September…when it’s almost October….it is.
Most other days of the year, Grief pops in like a Grandpa with a sense of humor, soft worn skin, and gives me tidbits of wisdom. I feel comfortable with the Grandpa Grief. He isn’t usually pushy, and is often surrounded with beauty and memories and even smiles as I remember and miss Cory. I am comforted to talk, walk, and rock with Grandpa Grief, reminiscing about the good ole days. I cry, but it’s happy, grateful tears about what we had and wishes that I’d had him longer and warm longings for him. This Grief makes me feel close to Cory, keeps my memory of him alive, and I’m thankful for it.
But in September, It, this intense painful thing that seems truly beyond Grief, arrives in a hostile manner, uninvited. No beauty or warmth surrounding It. It’s primal and intrusive….it’s the Doom my body and brain warned me was coming.
I laid in bed for two hours, drowning in the feeling of my heart sitting on the outside my chest. A mental slideshow of Cory’s short life played over and over again in my head. Then I made a decision.
“Hey there, Grief….It….the Thing. You’re back. I know, because it’s almost October, you’re back. I just wanted to have a little chat. I’m changing the rules. We are doing this a little differently this year….
Instead of dreading you, I will welcome you.
Instead of fearing you, I will embrace you.
Instead of running from you, we will dance.
Instead of escaping the pain you bring, I will feel.
Instead of staying in bed, I will get up.
Instead of pretending you don’t exist, I will acknowledge your presence.
Instead of being angry with you, I will be gentle with me.
Instead of drowning, I will swim.
Hopefully, this time around I can give you the attention you must need so you don’t have to be louder every time you arrive for an annual visit.
…so that maybe next year when you arrive, you might come in like a wind instead of a storm. And maybe someday, you’ll only be a breeze when you announce your arrival. And maybe some almost-October, you’ll be a rainbow.”….One can Hope.
It’s Saturday. I could stay in the bed all day. But instead, I pulled myself up, breathed deeply and did normal things. Planned things. Unimportant things. Me and Grief hung out together all day long, and my only decision was to keep moving. We got in the shower and cried some anguish I-can’t-do-this tears. I got dressed, fed the dogs, and walked out the front door. Into the sunshine and felt a sense of okay-I-can-do-this. Then moments later in the car the tears came again to the songs on the Christian radio station, reminding me to pray. “I’m trying. Please give me strength to do the normal things today.”
As I drove in the car wash, the song “I Will Remember You” by Sarah McLachlan came on from my Iphone playlist…..oh, timing. And I felt Grandpa Grief holding my heart as I bawled my way through the psychedelic colored soap raining on my car. Cory loved the carwash when he was little. I laughed through my tears at the memory of the cuteness of his little self. When he was a toddler, I would reach my arm all the way back to hold his chubby fingers propped on his carseat while we drove….He was blond and beautiful and healthy.
The carwash seemed in slow motion as I had the memory movies of my baby and young- child Cory playing in my head. As the gigantic brushes enveloped my car, I felt all the immense, intense, like-nothing-else-before agape love that my early-20’s self felt toward my first child. I saw him laughing, and running in the grass, and squealing on the swing. I felt him laying on my chest, crawling in bed next to me, his little arms around my neck…..
PULL FORWARD, EXIT
Sometimes I need flashing signs to remind me.
I left and drove toward the shoe store. Every red light, and slow slow traffic just solidified my perception that the world was moving in slow motion. As I passed a church and pulled to yet another stop at a red light, I caught sight of thousands of small American flags in the grass….oh my goodness. Tomorrow is 9/11. That must be 3000 flags, which means 3000 mothers and fathers. Tomorrow is Their Day. My compassion tears came on full force as I stared at all of the flags that represented someone’s lost child that left this world through no fault of their own. Moms, like me, who lost an adult child before themselves and are trying to push through life belonging to the Club we never asked to join.
BEEEEEP! I was jolted by the car behind me honking. The light was green. I quickly pulled into the church parking lot and sat and took all those flags in. I wondered what their names are…I could picture men and women in their suits. Maybe a young wife who was visiting Daddy with their child on the 18th floor. And I thought about the nightmare calls their parents received or the remains that were never found for other parents….
It’s so interesting that I still say, “I can’t imagine…”
I prayed for the families who were left here, without their child or brother or sister….So much will never make any sense.
I pulled out of the parking lot, wiped my face off with the paper towels I brought to clean my car windows with, and headed back into traffic. I started to head home and give up. My prior year’s comforts of my bed and some wine sounded much more appealing than pushing through my venture with “It” on my back. I prayed again….replacing shoes for Hannah that our cute, chewy puppy ate the backs off of was the last thing on my to-do list. I can do that. I think I can, I think I can….I thought of The Little Engine That Could children’s book. Then I laughed out loud at how ridiculous it was that I had to cheerlead myself on to go to the shoe store. “Stop this”, I corrected myself in my head. And I said out loud, “This is silly.” I sucked it up and walked into Rack Room shoes.
I caught myself in the mirror….no make-up, red face, puffy eyes and my Tenacious Fortitude shirt with Cory Jay Powell’s name on the back–the memory shirts representing Cory’s fight for his life and his love of vocabulary. “Team Cory” wore them to raise awareness for the need for bone-marrow donors for those who suffer from blood cancers…I wear it because I love him. As I looked through the shoes, I pleasantly remembered that every time Cory would come home as a young adult…from college or California or from his life adventures…I would insist on buying him new shoes. He was the most unmaterialistic human being I have ever known…. and always had worn out, holes-in-the-toes tennis shoes. “They’re fine, Mom, see??” and he’d show me the soles that obviously, to him, still had life in them. I realized, right there standing in front of the size 11 men’s shoes, that this attitude carried him through Cancer.
I walked to the check out and the older lady with a smile, greeted me so kindly. “How are you today?” “Fine”, I said, but I knew by the looks of me she probably didn’t believe me. As she rung things up and I fished through my purse for my credit card, she said, “Tenacious?” I smiled and said, “Yes.”
I don’t ever mind talking about Cory. I love to talk about him, just like any of my children, and by now, do so with ease. But I know it can make “new” people I meet feel upset, awkward, or uncomfortable only because they are so compassionate. I think it makes their heart skip a beat, because it’s every parent’s nightmare, really, and they just don’t know what to say. So it’s not something I bring up with just anyone… but for their sake, not mine.
She said,”I know something about Tenacious. Why are you Tenacious?”
“Oh, I’m not Tenacious. It’s for my son. He had 2 cancer battles and was quite a fighter.”
I watched for the shocked look in her face, and was ready to say something to comfort her discomfort, but she didn’t bat an eye.
She simply said, “I lost my son to cancer, too”. Now I was the one tearing up.
I did know what to say…”I’m so sorry. How old was he?”
“He was 6.” …My heart dropped into my stomach. I can’t imagine….
“And he was such a little fighter, but the brain tumor took over.”
“Oh, my goodness….How did you know? What were his symptoms?”, I said.
Her response helped me know she wanted to talk about her baby, how proud she was of him. And like describing her son’s first goal in his first soccer game, she proceeded to tell me…”Well, he came home and his eyes weren’t right, kind of crossing and he was wobbly for a few days. I knew something was wrong. And we went to the doctor and they thought it was dehydration. After a week of giving him enough water to float, we took him back. They found the tumor and they told us we would have 6 months with him. In the middle of chemo treatments, he still insisted on going to school! He just kept going! He was something else, marching and eventually wheeling around with his little bald head. He fought until the end. It’s been 20 years now.”
“It’s been 3 for me….thank you for sharing that with me. Cancer is terrible…it’s amazing how strong they are.” I said, and we gave one another a smile of solidarity.
Then, as I scooped up my bag, she said in a motherly way, “Remember, you are Tenacious, too.”
Not one customer came to check out while we chatted about our sons. I walked out of the glass doors with a sense of awe and gratefulness for the Angel behind the counter at Rack Room Shoes. I passed the 3000 flags on my way home and wished I could listen to every mom and dad about tell me about their sons and daughters, too.
I’d just decided to do normal things. Planned things. Unimportant things. Me and Grief hung together all day long, and it was okay. I felt exhausted, but as I laid my head back on the same pillow I was on when the Terror Train came rolling in this morning, I felt Peace.
Turns out this is a better way.
See the relaxed look in everyone’s eyes? It’s the look of relief and expectancy. Not unlike the feeling of expectancy when small signs of Spring appear after the winter. Seeing with our own eyes the trees budding brings the promise of leaves and fruit, seeing little stems break the earth knowing a tulip will soon follow, or that first day you can take off your coat outside after a frigid winter, because it’s finally warm and sunny…THAT feeling. Because you are at Peace that Spring has finally arrived after all that snow and ice and slippery roads.
In this picture, we are showing Cory all the Love Cory Day posts and pictures that everyone sent in….because we can.
We are surrounding him with love and all shades of Happy because he is communicating and pointing and Here. Simply basking in his Aliveness and Responsiveness.
It’s this day that this All Smiles picture was taken. We are smiling because it’s Spring, smack dab at the beginning of October!! We’ve taken our winter coats off and can’t wait for things to bloom.
The Vigil retreated. And rightly so. Cory was evidently going to be around a bit.
It was confusing to family and the medical staff alike as to what to do next… Leave? Wait? Treat? Wait and see what happens?…….What now??
Family-wise everyone, over about a week’s time (by early October)….went home. To work, school, families, and ordinary life. They still visited, but visited like they were visiting someone in the hospital who was getting Well……not moving in because someone was dying.
And Cory and I created a semblance of an “ordinary life” in a hospital room 5 floors up in Cincinnati Children’s Hospital. He was still bed-bound, but bound and determined to get better, get up and get going. He made progress everyday.
Medical-wise, things weren’t as clear. There was dissention. Cory literally had about 8 doctors, and each doctor had another doctor working with him/her. One Team for each body part. The Kidney team, Bone-Marrow transplant team, Intensive Care Team, Infectious Disease team, Ear, Nose and Throat team, Pain-Management team, Urology team, the Nursing team, etc.
[I want to precede the following details by saying that we have NO complaints about the medical staff. None. These were human beings trying to save our child with everything they knew and didn’t know. I am just reflecting some of our feelings at the time, which were obviously filled with emotion. I am sharing these details and feelings with the mission of being Real. But EVERYONE, regardless of disagreements at times, were acting in what they felt was in Cory’s Best Interest. I have NO doubt in my mind or heart about that. Only Grateful, only grateful, that every single medical professional cared SO much ❤ ]
They attempted to keep a United Front, but it was evident there wasn’t.
One of the Doctor Teams was reported by a nurse to Someone, Somewhere, and was under Some investigation-of-sorts for Something in regards to Cory’s case. That’s all I knew and wanted to know…..I still don’t. We trusted them to work it out, and said so….And apparently they did.
In another situation, we got the impression that One Doctor Team often believed, it seemed, that another Doctor Team was too “polly-anna” with us, using words like “very optimistic”and “miracle” and consistently focusing on improvements. This May Be, but we really did hear Everything….the hopeful, the hopeless, the good, bad and ugly. We did not have our heads in the sand. We took in the facts and chose to look at the cup half-full (that was Cory’s way…), and that’s all that’s to it. Encouraging us and Cory wasn’t always viewed as a good thing by All the doctors, but we really did appreciate the doctors who did. We also appreciated the doctors who didn’t. It gave us a very Real sense of the situation.
Regardless, though, we would still be hope-full and fill that room with love and not “give-up” on Cory, regardless! Because that is exactly what Cory verbally told us he wanted.
And as parents, one wouldn’t naturally do anything else. You cheer your kid on in spite of the odds, right? At their soccer game or their hospital bed-side. That’s our job. When your kid is fighting for a goal, a touchdown, a degree, or his life, he needs to hear his parents cheering him on….Plus, it was a win, win. If he were to live, he would recover with positivity and love. If he were to die, he would die surrounded by positivity and love…. Would anything else make sense for a family To Do in these circumstances??? My experienced mind and heart says, “No”. I’d approach it that way all over again and would hope my family would do the same for me.
Yet, Another Two Doctors (of like 16) wanted us to blatantly tell Cory he was dying, now that he was more responsive, so that he wouldn’t “misunderstand” his improvements. (But…..No One understood his improvements.) These very select doctors spoke about it to us Daily, which felt like Pressure and we resented. (We ultimately felt that this had more to do between them and the other Doctor Team’s different opinions than it had to do with Us, but we were the ones hearing about it.)
We knew Cory. They did not. We expressed this very sensitive information of what he had been through, how life threatening things were, and what some doctors saw his chances to be, to Cory in Cory’s way and in Cory’s time. We slowly told him Everything, as he was slowly gaining his mental and emotional footing….which, frankly, Cory didn’t want to discuss further….so, he acknowledged it, then went on. This was his way throughout his entire Cancer fight. Good or bad, it’s how he wanted to deal with it. He didn’t want to talk about it, give energy to it, or worry. His response was precisely what it had been all along….OK, now let’s keep truckin’.
Because of this, a Particular Doctor (who we had never met before and didn’t know Cory personally or professionally AT ALL) was still not convinced Cory understood the gravity of his situation and this Dr. continued to address it with Charlie and I regularly. It was a priority of our family to treat the medical staff with the Utmost of Respect and Courtesy at all times….. until we could not take his harping any longer. Charlie told him in no uncertain terms that Cory had indeed been informed, but we were not going to remind him Every Day of this this particular doctor’s prognosis that things were Hopeless. And we didn’t need to be reminded Every Day either that he thinks things are Grave. We Knew. And so did Cory. But, we followed Cory’s lead in focusing on the Living Moment at hand, and Hoping. The End.
We were glad when this Dr.’s rotation was over….
Now that Cory had a say in things again, this was his rodeo and we advocated for all to respect how he wanted to ride. He wanted to Live and that’s what he focused on, so, so did We.
Living: Holding a cup and putting a straw to his mouth by himself. Drinking a milkshake. Swabbing his own gums and teeth. Picking his leg up and down 4 inches with the Physical therapist. Pushing his own buttons to move his bed up and down. Typing a single message on Facebook. Listening to a Tom Clancy book-on-tape. Having a daily routine even though 3/4 of it was still sleeping.
He was too busy trying to Live to worry about dying.
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.
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.
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.
Late September 2013:
…..We had actually admired this room from next door for weeks before, and once stated to a nurse who was attending to Cory,
“Wow! That is a magnificent room! The light, the windows!” , I said enviously as I walked passed it and into Cory’s room that was half the size, dark and seemingly cramped in comparison.
The nurse replied, “Ohhhh, you don’t want that room.”
“That’s the room that goes ‘into the light’, …if you know what I mean…. Patients who go in, don’t usually come out.”
So, when, a couple weeks later, when Cory was actually getting better (a very relative term) and we were filled to the brim with hopefulness….her words couldn’t help but enter my mind as we rolled his bed into that grand corner coveted room on the floor that he was transferred into.
It was double the size, quadruple the windows. The Sun blessed us all…..it was like arriving on a beach after being in a basement for weeks. We all soaked it up and were SO grateful for the light and space. It was a gift.
“I’ve spent my life searching for spiritual meaning…” Cory was telling the visiting female pastor that happened to be with him as he changed rooms. They had bonded. He opened up to her when she visited him daily. “I’ve found it in Nature most of all. And in Solitude. I love solitude.” She was a beautiful and peaceful and accepting soul. She was exactly what he needed. Funny how God always Provides so precisely and timely.
This room allowed Cory to come back to life in Glory. In sunlight, with many family members around him, with room to Breathe and Work and Rest and Heal…. And come back he did, mentally and emotionally at least.
Physically, well….that was another story. That would be a long, long road.
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.
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.
“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
I found a text that I wrote on September 12, 2013 to my day-care families and said that I thought I should be back to work by the 16th….that’s how well we thought he was doing.
That’s when Charlie bought his ticket back to Arizona. Relieved and optimistic were we. It was the next day, that Cory broke out in all the purple blisters and bruises that I described in the previous post. What a difference a day makes…
September 17, 2013
Charlie had left for Arizona.
The blood blisters and bruises all over Cory were multiplying for four days, still no clue what it was. They had sent bloodwork a few days prior, but a germ that’s sampled has to grow and takes days to do so to diagnose what it is. They had done the skin biopsy as well.
It was 6:10 AM. Rounds could be anytime between 6 and 10 AM, depending.
The usual wake up call from the nurse….”Mom? Mom? They are here for rounds, did you want to attend?”
“Yes!”, I jumped to my feet. Hoping today was the day for our answer of why Cory was in such intense pain and covered with the purple lesions, so they could treat it with the magic of the correct antibiotic, and he could overcome One.More.Hurdle.
He’s a track star by now.
I walked out of the glass doors in my PJ Bottoms, a T-shirt, wake-up hair, and rubbing my eyes. I was usually holding a cup of coffee by Rounds, but this morning was an early visit.
The familiar faces of residents, doctors, and Attendings(the Head Honchos) were there. There was anywhere from 10-15 medical personnel at AM rounds. Many,many were younger than me.
It felt like a Huddle. There was Team Kidney, Team Pharmacology, Team Pain Management, Team Infectious Disease, Team ICU, and Team Nurses would pop out of caring for Cory when the talking actually began. They were waiting for Team Bone Marrow Transplant doctors to arrive.
Something was different this morning. There were more of them here.
There wasn’t any banter among them, which often there was and which I enjoyed. Their smiles and small talk among themselves about the night prior or studies or what their dog did or how cool the new medical app on their I-pad was…..it was refreshing, a peek into life on the outside and a comforting sense of human-ness from them. But there was none of this this morning.
There were periods of absolute silence, where they informed me that we were waiting on the Attending from the Bone Marrow Transplant Unit to arrive. (That didn’t surprise me. The minute Cory hit the ICU, the Attending from the BMT Unit became his daily doctor.)….
But the air while we waited was different than other mornings we had waited. I started rocking back and forth on my heels, my arms were crossed and I was clenching my teeth. My Mom Instincts were NOT getting good vibes. The automatic doors to our ICU pod opened and in walked the Bone Marrow Transplant Team.
The Attending (Head-honcho), looked as put-together as ever, and along side her was one of Cory’s physicians that was with him from the beginning of his Leukemia diagnosis. She apologized, she looked very serious, and she didn’t make eye-contact with me or smile…which was also different. (We were kind of friends by now we had chatted so much…she had two boys around Cory’s age, I knew the rundown on the new decor going into the BMT unit that would be “softer colors, and a homier feel”, etc.) Two women chatting, but Not Today. Today she was “The Doctor.”
This. Was. Not. Good….I knew it.
An ICU resident started , “Cory Powell, age 25, blahblahblahblah….”. I mentally checked out while they ran down his stats and what meds he was getting, what nutrition he was recieving, basically a review of what we all already knew.
“Stay calm, whatever it is… stay calm, breathe, breathe.”….I was continually coaching myself for composure, for mental focus, and for, well, Sanity.
The taking-turns-talking baton was passed to the next physician, the guy behind the computer-on-wheels with the big sign taped to it that said, “DO NOT USE THIS COMPUTER FOR ROUNDS”.
This computer, was here, AT ROUNDS, Every Day, being pushed around by a different Dr., which usually cracked me up and I even ribbed them about it on a good day.
Today, I only became laser attentive to the mouth moving behind the computer as he looked up and down at the screen as he spoke. “The blood work was taken on 9/13 and infection was found in the blood, there was no growth prior, but they have determined the preliminary growth on the sample is a fungus.”
A Fungus. A FUNGUS. okay.
I was listening for what bacteria or what virus had this time attacked his weak immune system and it is a fungus? …,…Didn”t even know up until this point that that was A Thing.
The baton was passed to Team Infectious Disease which backed up the findings. The biopsy had indicated a fungus as well.
Take that in…..Mold. AS IN CHEESE.
But it wasn’t on cheese that you could throw away or cut the mold off.
It was all over MY BABY…..EATING at him from the inside out.
“How? What?? How did this happen?” I stammer. Huh? I just kept thinking, “Huh????”
“Well, we are going to meet later and discuss that in more detail and where we go from here, at….when can you meet, Dr. so-and-so, and Dr. so-and-so, and Stan, does 1 work for you? Ok, I’m in surgery at 12:30, Sue is at lunch at 1:00 and Riley is getting her nails done at 2:00, so let’s make it 3:00…..” says the Attending.
(Not really…obviously thats not really what was said, but that was the level of importance of whatever I heard TO ME—the mother of the child you just informed me is decomposing while alive like a slice of bread that has been in a warm plastic bag too long—-and you want to wait UNTIL 3:00 to explain this to me???)
One of the Attendings is making all the arrangements for us to meet later around their schedules—with the other Attending—and the Primary, and the Resident,… and the janitor? “Let’s call the flipping janitor”, my angry mind sarcastically says in my head. (remember that sanity part…..I feel myself teetering) They are all talking around me, and my head is spinning and I’m physically feeling dizzy.
“Will 3:00 work for you?” Oh, they are talking to me. “Yes….. I’m not going anywhere.”
I turn to walk back in the dark hospital room. I sat on my chair-bed and stared at Cory, the Cory I’d now grown used to seeing lying in the bed on his back with beeps and lights and lines as his appendages. My Cory that I couldn’t touch because it hurt him.
And I didn’t cry.
I was cried out and numb and angry. I thought about how over the past weeks in the ICU (3 weeks that felt like 3 months), Charlie, Dave and I kept saying and cheerleading and being positive and oh,so hopeful….”Well, you know, he just keeps moving forward. 3 steps forward, 1 step back….2 steps forward, 1 step back…4 steps forward, 2 steps back. As long as he keeps going forward.” My gut knew this was more than 1 or 2 steps back….they didn’t call for a Meeting of the Minds at 3PM in a conference room for a couple steps back…..
I stared in absolute Awe at the man in front of me, lit up only by a nurses light and blue and red lights on his pole. And I waited for 3:00.
Day 47, Journal Entry from Cross Country Bike trip : “Ugh. Today was rough. Very pretty, but I couldnt get very far and I feel like I just did 100 miles. I didn’t get on the road until noon, and by then it was super-windy. The mountains were fabulous. After the initial climb, I got a nice break on some relatively flat ground and even some downhill. After that though, the road turned and a heavy wind has been in my face since, as well as maintaining a constant uphill drive. Overall, very taxing, but I managed some great pics. I’m camped at the top(ish) of a hill behind a tree. I’m going to sleep and thinking about Downhills & Slight Breezes.” —Cory Jay Powell
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 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.