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… 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.

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