We check into the hospital mid-morning Monday to begin our first round of treatment.
Saturday, August 8, 2009
Friday, August 7, 2009
The Verdict is In
The Diagnosis:
Acute Myeloid Leukemia
The Treatment:
6-8 months of aggressive chemo, more time in hospital than out
The Hard Facts:
50% of cases in children cured
The Pluses:
The cancer is not apparent in his marrow (yet).
He’s going into the fight healthy, unlike most cases (we caught it early)
We plan to incorporate some Reiki healing into his treatments to help him recover from each hit of chemo a little better.
Acute Myeloid Leukemia
The Treatment:
6-8 months of aggressive chemo, more time in hospital than out
The Hard Facts:
50% of cases in children cured
The Pluses:
The cancer is not apparent in his marrow (yet).
He’s going into the fight healthy, unlike most cases (we caught it early)
We plan to incorporate some Reiki healing into his treatments to help him recover from each hit of chemo a little better.
Thursday, August 6, 2009
How does anything like this EVER start? The last week, in summary.
THURSDAY. 07/30/09
I was holding him in front of me in the warm water, facing outward so he could spy his rubber ducky bobbing beside my foot. That was when the boulder ploughed through my chest. The a-symmetry and discolouration was so loud I could have covered my ears as I banged my head against a concrete bollard. I swallowed the knot of nails in my throat as I bumped the drain with my heel and mechanically rose from the tub. I was careful to secure my slippery, precious cargo as I walked to his crib and laid him down, dripping wet. I could hear but not stop the hysteria picking away at the edge of my voice as I pushed the words past my lips into the phone. Patrick was there within minutes, assessing what I’d seen. He giggled and danced under the examination.
We were sure he’d caught his arm in the bars of the crib again, or lodged the right one behind the mattress in one of his tumbling acts through the night. Neither of us could recall a single incident of trauma in the last week, if ever. Looking down on his little body, the purple right shoulder blade stuck out almost an inch from his otherwise perfect little back. Looking at him head-on, the hunch almost met the side of his perfect little neck. He smiled his big winner at our furrowed brows.
The title of Disney’s The Hunchback of Notre Dame flashed across the TV as I walked into Children’s Emergency. A little giggle slipped out. We’d dubbed him Quasimodo before I left the house. I like our twisted humour. They pushed us right through on the precaution that it was an abuse case. I didn’t care. I was glad for the expediency. X-rays showed no break, no dislocation. They showed something much, much worse. The word “growth” tumbled from the pediatrition’s lips and I wished it was a trauma case of some kind. That word... “growth”. It crawls over your skin and seeps into your pores, filling your lungs with cotton. You look down at your exhausted, hungry, poked and prodded, finally-sleeping baby and your mind just goes blank. After 8 hours in that tiny room on the emergency ward and asking each of us if we’re blood-related to our spouse (?), they bumped us up to the oncology ward.
FRIDAY. 07/31/09
The day of tests. I’m afraid I don’t recall much. I just took him where they told me to. There were more x-rays, ultra-sounds, nuclear bone scans, and blood tests. From 8 in the morning until 5 in the evening, it went on. By 6 p.m. we had results from all those tests. The determination was that we needed a piece of the shoulder thing. There was a second lump discovered, 3-4 cm large, on one kidney. Also, a bone discrepancy on the left side of his skull. It was a productive day and they graciously gave us a pass for the long weekend. No non-emergency surgeries booked, anyway.
MONDAY. 08/03/09
Back in hospital to maintain our In-patient status, and our high priority on the list. This is an entirely alien world to me. Babies and children behind every door, all bald and small. So small. The youngest are happy. They don’t know any different. It’s difficult to stomach the idea of happy two year-olds losing pieces of themselves when the option means cutting the cancer out. Medicine is so much more aggressive with the young. They can “take” it. I think the most popular term is resilient. It nauseates me even as it gives me hope. I slept that night with visions of our young cowboy with some cool kind of bionic arm. All the other kids love him.
TUESDAY. 08/04/09
The day of surgery. The worst day of my life. I made it to the hospital just after Patrick handed him off to the surgeons. Sophie the Giraffe (renamed Jerry) went with him. We stumbled around the hospital, trying to be productive about finding goods for dinner before all the kiosks closed for the night. There was a phone in the OR waiting room. The parent’s phone. If it rings, answer it. I stared at that phone like it was going to jump of the wall and eat me. The air in my lungs turned to stone and hit the bottom of my stomach every time it rang. 3 hours we waited for it to wring. 3 episodes of CSI. Love that Horatio.
The cries and groans of children bounced off the curtained walls all around us as we made our way to his real estate in Recovery. The warm pile of blankets almost hid him from view. My heart shattered all over again as I recalled my own recovery from anaesthetic not 5 months prior. How could such a little person withstand that personal hell? Jerry was propped up right beside him, so he could see his favourite spotted friend.
The night was spent rather peacefully. A few minor adjustments were made to his morphine levels whenever he started whimpering in his sleep. The piece they took for biopsy was 1 inch by 2 inches.
WEDNESDAY. 08/05/09
I crawled into bed about noon, after being relieved from the night shift at the hospital. I deal with that better than Patrick. He has a hard time sleeping anywhere without his family, it seems. One o’clock the phone rang. They were discharing us in an hour to await the results at home. Whew.
I was holding him in front of me in the warm water, facing outward so he could spy his rubber ducky bobbing beside my foot. That was when the boulder ploughed through my chest. The a-symmetry and discolouration was so loud I could have covered my ears as I banged my head against a concrete bollard. I swallowed the knot of nails in my throat as I bumped the drain with my heel and mechanically rose from the tub. I was careful to secure my slippery, precious cargo as I walked to his crib and laid him down, dripping wet. I could hear but not stop the hysteria picking away at the edge of my voice as I pushed the words past my lips into the phone. Patrick was there within minutes, assessing what I’d seen. He giggled and danced under the examination.
We were sure he’d caught his arm in the bars of the crib again, or lodged the right one behind the mattress in one of his tumbling acts through the night. Neither of us could recall a single incident of trauma in the last week, if ever. Looking down on his little body, the purple right shoulder blade stuck out almost an inch from his otherwise perfect little back. Looking at him head-on, the hunch almost met the side of his perfect little neck. He smiled his big winner at our furrowed brows.
The title of Disney’s The Hunchback of Notre Dame flashed across the TV as I walked into Children’s Emergency. A little giggle slipped out. We’d dubbed him Quasimodo before I left the house. I like our twisted humour. They pushed us right through on the precaution that it was an abuse case. I didn’t care. I was glad for the expediency. X-rays showed no break, no dislocation. They showed something much, much worse. The word “growth” tumbled from the pediatrition’s lips and I wished it was a trauma case of some kind. That word... “growth”. It crawls over your skin and seeps into your pores, filling your lungs with cotton. You look down at your exhausted, hungry, poked and prodded, finally-sleeping baby and your mind just goes blank. After 8 hours in that tiny room on the emergency ward and asking each of us if we’re blood-related to our spouse (?), they bumped us up to the oncology ward.
FRIDAY. 07/31/09
The day of tests. I’m afraid I don’t recall much. I just took him where they told me to. There were more x-rays, ultra-sounds, nuclear bone scans, and blood tests. From 8 in the morning until 5 in the evening, it went on. By 6 p.m. we had results from all those tests. The determination was that we needed a piece of the shoulder thing. There was a second lump discovered, 3-4 cm large, on one kidney. Also, a bone discrepancy on the left side of his skull. It was a productive day and they graciously gave us a pass for the long weekend. No non-emergency surgeries booked, anyway.
MONDAY. 08/03/09
Back in hospital to maintain our In-patient status, and our high priority on the list. This is an entirely alien world to me. Babies and children behind every door, all bald and small. So small. The youngest are happy. They don’t know any different. It’s difficult to stomach the idea of happy two year-olds losing pieces of themselves when the option means cutting the cancer out. Medicine is so much more aggressive with the young. They can “take” it. I think the most popular term is resilient. It nauseates me even as it gives me hope. I slept that night with visions of our young cowboy with some cool kind of bionic arm. All the other kids love him.
TUESDAY. 08/04/09
The day of surgery. The worst day of my life. I made it to the hospital just after Patrick handed him off to the surgeons. Sophie the Giraffe (renamed Jerry) went with him. We stumbled around the hospital, trying to be productive about finding goods for dinner before all the kiosks closed for the night. There was a phone in the OR waiting room. The parent’s phone. If it rings, answer it. I stared at that phone like it was going to jump of the wall and eat me. The air in my lungs turned to stone and hit the bottom of my stomach every time it rang. 3 hours we waited for it to wring. 3 episodes of CSI. Love that Horatio.
The cries and groans of children bounced off the curtained walls all around us as we made our way to his real estate in Recovery. The warm pile of blankets almost hid him from view. My heart shattered all over again as I recalled my own recovery from anaesthetic not 5 months prior. How could such a little person withstand that personal hell? Jerry was propped up right beside him, so he could see his favourite spotted friend.
The night was spent rather peacefully. A few minor adjustments were made to his morphine levels whenever he started whimpering in his sleep. The piece they took for biopsy was 1 inch by 2 inches.
WEDNESDAY. 08/05/09
I crawled into bed about noon, after being relieved from the night shift at the hospital. I deal with that better than Patrick. He has a hard time sleeping anywhere without his family, it seems. One o’clock the phone rang. They were discharing us in an hour to await the results at home. Whew.
~~~~~~
Now we wait and see what the results yield. They have not officially said that we have cancer but they've given us the tour and have prepared us for such a reality. They're 95% sure.
meet The Man
he's of the happy and active sort. quick with the smiles, he loves to stand on his own two feet and rides the Knee Horse like no other cowboy. he enjoys a good cartoon as much as watching others master the art of eating, though he has yet to try such an adventure. yes, short is the time he will continue to be appeased by the mere 8 oz bottle of warm formula. his favourite exercise machine is an old borrowed walker, though the ground continues to elude his ever-stretching and wiggling toes.
All is not rainbows and lollipops with The Man, however. If that bottle dares to be slow or that miserable bedtime sneaks up on him before he's ready, look out! a monster that can only be compared with the most fierce legends rears its ugly head! all and sunder MUST know that things are NOT copacetic. hope is never truly lost, though. appease the beast, and he returns to the dark depths from which he leaped, leaving behind the smiling, gurgling little piece of precious sonshine.
yup. at not yet 5 months, he's got us totally whipped.
All is not rainbows and lollipops with The Man, however. If that bottle dares to be slow or that miserable bedtime sneaks up on him before he's ready, look out! a monster that can only be compared with the most fierce legends rears its ugly head! all and sunder MUST know that things are NOT copacetic. hope is never truly lost, though. appease the beast, and he returns to the dark depths from which he leaped, leaving behind the smiling, gurgling little piece of precious sonshine.
yup. at not yet 5 months, he's got us totally whipped.
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