Nov 30, 2009
All That
Joy abounds today, as I reflect on yesterday's service for our sweet Aiyana. Her life was celebrated with balloons, flowers, loving music and pictures. Life is rich and deep and beautiful. Thanks, sweetheart, for reminding us of that.
Nov 26, 2009
Yana
Life stopped for a minute or two on Tuesday afternoon as we paused to say goodbye to our beautiful Aiyana, Randy's eight year old granddaughter.
We celebrate her place in Heaven but it is hard to say goodbye. I think it is always hard to be left behind.
We are so grateful for her life, her smile, her generous heart and all the thousands of beautiful moments she contributed to our lives. We will carry her with us every day of our lives.
Nov 20, 2009
A Hard 48
It's been a hard 48 hours. From high hopes and peals of laughter on Tuesday night, Aiyana developed a spiking high fever to 105 and specialists raced to identify the cause. Fluids and antibiotics and ice packs and cool towels brought the fever to normal by Wednesday night, but there was a deep and overlying concern about the cause with her in such a fragile, post chemo state.
She began retaining water Wednesday night and then had difficulties breathing and was moved to ICU. Steadily her situation worsened, it was discovered a fast moving lung infection had taken root and the first of three treatments was immediate implemented but Aiyana had not responded to treatment. They were partway through the second treatment when we arrived at the hospital and that, too, seemed ineffective. This infection, we were told, only can be healed by the white antibodies fighting it off and Aiyana's body healing itself.
The minister led us in prayer and we began to absorb the words that truly, she was in God's hands. I guess this is the moment of truth when our will falls away and we are left with what we truly believe. It is here where we reach for God's hand and have him lead us the rest of the way. We were able to see Aiyana briefly from a distance, and during one such visit with her aunt and her mom and dad standing by, Aiyana stopped breathing. Code Blue, PICU.
She began retaining water Wednesday night and then had difficulties breathing and was moved to ICU. Steadily her situation worsened, it was discovered a fast moving lung infection had taken root and the first of three treatments was immediate implemented but Aiyana had not responded to treatment. They were partway through the second treatment when we arrived at the hospital and that, too, seemed ineffective. This infection, we were told, only can be healed by the white antibodies fighting it off and Aiyana's body healing itself.
The minister led us in prayer and we began to absorb the words that truly, she was in God's hands. I guess this is the moment of truth when our will falls away and we are left with what we truly believe. It is here where we reach for God's hand and have him lead us the rest of the way. We were able to see Aiyana briefly from a distance, and during one such visit with her aunt and her mom and dad standing by, Aiyana stopped breathing. Code Blue, PICU.
Doctors and nurses tore past us as we pasted ourselves along the walls of the hallway to get out of the way. Long long minutes later, she was breathing and everyone was crying with relief. By that time, Randy and I were right there watching her vitals on that reassurring little machine with red numbers, that beeps irritatingly all night long. We trembled and listened to the sobs from a deep place in her father's heart.
And so, Aiyana is now hooked up to a bypass machine that essentially filters and oxygenates the blood and returns it to her body bypassing the lungs. Resting the lungs will let the building army of white antibodies wage war on the infection and regain control. Day by day her growing pool of antibodies will fight and we will keep vigil, and nudge her along with our hope and love and prayers.
When things seemed most dark, it was Aiyana's dad who reminded us that when she was born with cerebral palsy and epilepsy, the doctors said she wouldn't walk -- but she dances and runs and rides her bike. The doctors warned she would be impaired -- but she laughs and sings and does well in school. And so, her dad says: she has always defied the odds before, and why not now? Give her the chance to do her thing and she will beat the odds.
Nov 18, 2009
Nov 17, 2009
Do You Want The Good News First or the Really Good News?
Morgan Harman (Aiyana's big sister) just sent the Over the Moon News!
I'll have a more in detail update very very soon, but I just got a phone call from Aiyana and our Granny. Aiyana has some good news...and then some really REALLY good news.
Good news: It looks like she'll be coming home at the end of the week!!!
And the really REALLY Good news: her Leukemia in non agressive which means NO BONE MARROW TRANSPLANT WILL BE NEEDED!!!
We all have tears of happiness flowing right now. My baby sister is a living, breathing, walking, talking miracle since the day she was born. Thank you so much to everyone for all of the love and support. Our family can't say it enough.
She isn't in the clear of the Leukemia yet so we have to keep doing what we are doing. I just thought you all would like to hear some good stuff!!! Thank you again from the warmest place in my heart, Aiyana's big sister Morgan.
Nov 12, 2009
Where Were You When ...
We all talk about remembering the 89 quake, when the Twin Towers fell or Christa's shuttle exploded. It's strange how hyper aware those moments become, as if time locks itself away and we can recall even the smallest details: what we wore, where we were, what we were doing and who we were with.
There a few other memories like that. I remember one summer day playing Barbies on the front lawn under the tree, the Dream House spread in an arc leaving plenty of room for action and the Dream Car. I remember what the warm sidewalk felt like after a good run through the sprinklers with Kimmy Pohlman and how it would prickle like popping bubbles and tug at our skin as we lay sunny side up. I remember curling into the crook of my father's arm as he read the paper, wiggly and anxious for attention. I remember kneeling in front of a planter planting carnations because they were my mother's favorite flower. She wore an apron with pockets to hold the seeds and gloves. And I remember the day our family dog was hit by a car.
It was my fault, really, anxious as I was for my brother to make it all the way home. I could see him across the street just passing the Kurtz' house and came to the idea that it would be fun for Laddie to do the big reunion scene halfway down the block. And so I opened the screen door.
We were on a busy corner and Laddie never went out front except on a leash. He saw Don, too, and shot out of the house like a rocket and tore across the lawn. I didn't see the car and it didn't see the dog until they intersected along his left flank and he skidded on his side to the curb. My brother looked stricken and dropped his books and bolted to the corner, as I did from the house, yelling for mom, inconsolable and wracked with guilt and fear. My mother got a blanket and we gently put him in the car and headed to the vet. No one blamed me for it, which made it even worse.
This story ended happily. Laddie recovered and I did eventually get the lecture which made me feel oh so much better. He went on to many more adventures which included biting the milkman, being backed up on his own porch by a cat, having a parakeet chase him down the hall and land on his back, and years of being used as a delivery dog for secret messages sent between our rooms after it was lights out. But I can tell you what I was wearing and where I was on the day he was hit.
There a few other memories like that. I remember one summer day playing Barbies on the front lawn under the tree, the Dream House spread in an arc leaving plenty of room for action and the Dream Car. I remember what the warm sidewalk felt like after a good run through the sprinklers with Kimmy Pohlman and how it would prickle like popping bubbles and tug at our skin as we lay sunny side up. I remember curling into the crook of my father's arm as he read the paper, wiggly and anxious for attention. I remember kneeling in front of a planter planting carnations because they were my mother's favorite flower. She wore an apron with pockets to hold the seeds and gloves. And I remember the day our family dog was hit by a car.
It was my fault, really, anxious as I was for my brother to make it all the way home. I could see him across the street just passing the Kurtz' house and came to the idea that it would be fun for Laddie to do the big reunion scene halfway down the block. And so I opened the screen door.
We were on a busy corner and Laddie never went out front except on a leash. He saw Don, too, and shot out of the house like a rocket and tore across the lawn. I didn't see the car and it didn't see the dog until they intersected along his left flank and he skidded on his side to the curb. My brother looked stricken and dropped his books and bolted to the corner, as I did from the house, yelling for mom, inconsolable and wracked with guilt and fear. My mother got a blanket and we gently put him in the car and headed to the vet. No one blamed me for it, which made it even worse.
This story ended happily. Laddie recovered and I did eventually get the lecture which made me feel oh so much better. He went on to many more adventures which included biting the milkman, being backed up on his own porch by a cat, having a parakeet chase him down the hall and land on his back, and years of being used as a delivery dog for secret messages sent between our rooms after it was lights out. But I can tell you what I was wearing and where I was on the day he was hit.
Nov 10, 2009
A Trust Walk
I've been kind of sore at God lately. Aiyana is such a wonderful and loving child, it's been hard to accept the fact she's so ill. Essentially, I think He could have at least picked someone more deserving of the honor of leukemia, say a world leader who committed genocide. It would have been nice to be able to say to each other, well there you go, we all know a bad seed deserves to suffer.
I happened to be watching teenagers the other day be released from school. They came in waves, spilling over the walkways and grassy slopes and pooled near the crosswalk ready to cross. They were anxious to get to wherever they were going and some had no plans to wait for the light. They stepped right out into traffic even though we were approaching at 45 miles an hour on a green light.
I happened to be watching teenagers the other day be released from school. They came in waves, spilling over the walkways and grassy slopes and pooled near the crosswalk ready to cross. They were anxious to get to wherever they were going and some had no plans to wait for the light. They stepped right out into traffic even though we were approaching at 45 miles an hour on a green light.
Camo
I was talking aloud in the car the other day and thinking how great the invention of the Bluetooth is for those of us who do that sort of thing. But when it comes to singing, the Bluetooth is a grossly inadequate shield. Once that whole performance gesturing thing gets going when you're belting out an old show tune like When You're A Jet, there's just no way to camoflague it.
California lane buddies pull alongside and the first thing they do is give cursory glances this way and that. I think it's because they think something better is going on in the next car and they don't want to miss out. In places like Chicago, lane buddies don't want to know what's going on in the car next to them because they really, really don't want to get involved. So they just stare straight ahead as if they're the only ones on the road which they might as well be.
When westerner lane buddies encounter a live performance, they fall into one of two subgroups. They either -- a) nod and smile because they, too, are cabaret car singers and realize how silly they look, -- or -- b) mutter something to their passenger who also snaps and stares, mutters something back, probably about me being off my nut, and discreetly change lanes. But really, how can subgroup B not fess up to knowing how amazing car acoustics are, especially with music cranked up just enough so we can delude ourselves into thinking we've got amazing pitch? The pervs.
Car etiquette otherwise is pretty straightforward except for one thing which is really important. Next time you have marshmallow peeps stuffed in your cheeks and hit a red light with lane buddies on either side, here's what to do: stop chewing and swallowing to remain undiscovered. Try not to gag up those sugar crystals dripping down your throat and saliva closing your esophagus from over-stimulated taste buds. When the light changes, and it will after it goes through an eight stage cycle including turn lanes, being slow on the take off will give you just enough time chew and swallow.
Oh and don't forget the Golden Rule: Never never ever ever pick your nose in the car even if it's in the middle of the night with no one around for 100 miles. You're in a box with windows, Man: someone will see.
California lane buddies pull alongside and the first thing they do is give cursory glances this way and that. I think it's because they think something better is going on in the next car and they don't want to miss out. In places like Chicago, lane buddies don't want to know what's going on in the car next to them because they really, really don't want to get involved. So they just stare straight ahead as if they're the only ones on the road which they might as well be.
When westerner lane buddies encounter a live performance, they fall into one of two subgroups. They either -- a) nod and smile because they, too, are cabaret car singers and realize how silly they look, -- or -- b) mutter something to their passenger who also snaps and stares, mutters something back, probably about me being off my nut, and discreetly change lanes. But really, how can subgroup B not fess up to knowing how amazing car acoustics are, especially with music cranked up just enough so we can delude ourselves into thinking we've got amazing pitch? The pervs.
Car etiquette otherwise is pretty straightforward except for one thing which is really important. Next time you have marshmallow peeps stuffed in your cheeks and hit a red light with lane buddies on either side, here's what to do: stop chewing and swallowing to remain undiscovered. Try not to gag up those sugar crystals dripping down your throat and saliva closing your esophagus from over-stimulated taste buds. When the light changes, and it will after it goes through an eight stage cycle including turn lanes, being slow on the take off will give you just enough time chew and swallow.
Oh and don't forget the Golden Rule: Never never ever ever pick your nose in the car even if it's in the middle of the night with no one around for 100 miles. You're in a box with windows, Man: someone will see.
Nov 6, 2009
Taking the Hill
Ok for the harder news.
Aiyana's leukemia type is confirmed as MPAL - Mixed Phenotype Acute Leukemia, and ALM is primary so the doctors have begun an aggressive regimen of 10 days on, recover days off, and a repeat. Treatment began yesterday. The length of recovery days will depend on how our girl tolerates treatment, and that varies widely. Some do very well on it, and we know that if Aiyana's strong spirit has anything to say about it, she will, too. No matter what, she will try very hard and be very brave.
Her mother told her last night there is a boxing match going on inside and that she might not feel well until the good guys win. Aiyana understood at once what she was talking about. It was a great analogy.
I have been looking the disease up online, and there are all sorts of statistics and ratios that suddenly are unimportant. Reading stories and statistical probabilities only diffuses what is going on here and now with this precious child.
When Aiyana's mom was hungry to know information way into the future, her oncologist wisely replied, 'I will tell you what we are doing today, and tomorrow I will tell you what we are doing tomorrow.'
And so we will take this in small doses, just like Aiyana does, to fight the good fight and keep strong. Minute by minute, day by day, we will take it one hill at a time.
Aiyana's leukemia type is confirmed as MPAL - Mixed Phenotype Acute Leukemia, and ALM is primary so the doctors have begun an aggressive regimen of 10 days on, recover days off, and a repeat. Treatment began yesterday. The length of recovery days will depend on how our girl tolerates treatment, and that varies widely. Some do very well on it, and we know that if Aiyana's strong spirit has anything to say about it, she will, too. No matter what, she will try very hard and be very brave.
Her mother told her last night there is a boxing match going on inside and that she might not feel well until the good guys win. Aiyana understood at once what she was talking about. It was a great analogy.
I have been looking the disease up online, and there are all sorts of statistics and ratios that suddenly are unimportant. Reading stories and statistical probabilities only diffuses what is going on here and now with this precious child.
When Aiyana's mom was hungry to know information way into the future, her oncologist wisely replied, 'I will tell you what we are doing today, and tomorrow I will tell you what we are doing tomorrow.'
And so we will take this in small doses, just like Aiyana does, to fight the good fight and keep strong. Minute by minute, day by day, we will take it one hill at a time.
Nov 3, 2009
Just the Same
On Friday I joined the club of those I have been holding out hope for: I became unemployed. You'd think after living life this long, I'd be accustomed to change. I was immersed with living by the bell, interacting and keeping up with routines and tasks.
What a beautiful day it is today and I wouldn't even know that if I was at work, knocking down that inbox with important things to do. I liked it there. It's fun to be kept by children who challenge and care and push and pull, whose faces and names I have finally learned to spell. Their voices are familiar on the other end of the line when they called to say hi.
How will it be now, I wonder, for me and for them, finding a foothold, a focus forward. It's not exactly how we thought it would go but we'll get there just the same.
What a beautiful day it is today and I wouldn't even know that if I was at work, knocking down that inbox with important things to do. I liked it there. It's fun to be kept by children who challenge and care and push and pull, whose faces and names I have finally learned to spell. Their voices are familiar on the other end of the line when they called to say hi.
How will it be now, I wonder, for me and for them, finding a foothold, a focus forward. It's not exactly how we thought it would go but we'll get there just the same.
Nov 1, 2009
God's Children
I was watching the kids play with Floam, this weird textured dough with little beads that stick together. As I watched those little hands shape and form it, I thought of God.
He is there in whatever shape we need Him to be, waiting and watching until we begin walking step in step. We roll around thoughts of Him, over and over, shaping Him this way and that while we try to understand who He is. He is as unique to each of us as we are to each other.
God can burst into our hearts like a shooting star on the 4th of July or enter silently on tiptoes like a kitten we don't know is there until we reach out and feel the warmth. He is with us when we are lonely and scared or when we are joyous and grateful. He smiles and watches with us when we discover a miracle because He never gets tired of those.
If I could pick a favorite game for God it would be Hide and Seek. He would be really good at it! He wouldn't mind when we were a long way from counting all the way up to 100 before we started to look for him. He would not throw his hands in the air, give up and go home at dark the way others would. No sir ree. No matter how slow we are or how far ahead the others are, He will wait there for us to discover Him. And when we do, with arms outstretched, excited to be found, He will joyfully run with us all the way home.
He is there in whatever shape we need Him to be, waiting and watching until we begin walking step in step. We roll around thoughts of Him, over and over, shaping Him this way and that while we try to understand who He is. He is as unique to each of us as we are to each other.
God can burst into our hearts like a shooting star on the 4th of July or enter silently on tiptoes like a kitten we don't know is there until we reach out and feel the warmth. He is with us when we are lonely and scared or when we are joyous and grateful. He smiles and watches with us when we discover a miracle because He never gets tired of those.
If I could pick a favorite game for God it would be Hide and Seek. He would be really good at it! He wouldn't mind when we were a long way from counting all the way up to 100 before we started to look for him. He would not throw his hands in the air, give up and go home at dark the way others would. No sir ree. No matter how slow we are or how far ahead the others are, He will wait there for us to discover Him. And when we do, with arms outstretched, excited to be found, He will joyfully run with us all the way home.
A Great Day
Halloween in the Pediatric Unit of UC Davis Medical Center's Cancer Ward was hopping yesterday. Facepainters were stationed just outside the door, and rainbows and stars and spiderwebs on everyone's smiling faces. A clean room playroom was set up at the end of the hall staffed by volunteers to design pumpkins, decorate door hangers and make origami windchimes.
Inside the windows were decorated, and pumpkin decorations were all over the room. Gavon was the Spider King and Avry was a butterfly; Mom and Morgan were witches and Dad was a Hippie; Jason was a pirate. Randy and I went as cleverly disguised responsible adults.
The staff came in every minute or two, superheroes, Minnie Mouse, soccer goalies and Jessie and Woody from Toy Story, with their arms full of toys and candy and flash lights to put in the bag for Aiyana and her sister Avry. We watched and laughed at the trick-or-treat in reverse and the delight and anticipation on Aiyana's face with each knock on the door.
Aiyana got up and walked down the hall, and we trailed behind, most of us in masks decorated with big smiley faces, moustaches and glasses. She played a game of fishing and won a doll gymnast set with - count them - TWO Barbies! The anti-nausea meds kicked in mid-day and she was in great spirits. She ate! She ate peaches, drank water and juice, chicken nuggets and half a hamburger. We took a lot of pictures, overjoyed she was hungry and eating as much as how darling she looked in her little ladybug cap and fireman's hat.
Her mother said that today was a great day, one to keep as a memory because the days ahead will be hard. We know she is right. We are here to love each other, be strong, and hold hands
Inside the windows were decorated, and pumpkin decorations were all over the room. Gavon was the Spider King and Avry was a butterfly; Mom and Morgan were witches and Dad was a Hippie; Jason was a pirate. Randy and I went as cleverly disguised responsible adults.
The staff came in every minute or two, superheroes, Minnie Mouse, soccer goalies and Jessie and Woody from Toy Story, with their arms full of toys and candy and flash lights to put in the bag for Aiyana and her sister Avry. We watched and laughed at the trick-or-treat in reverse and the delight and anticipation on Aiyana's face with each knock on the door.
Aiyana got up and walked down the hall, and we trailed behind, most of us in masks decorated with big smiley faces, moustaches and glasses. She played a game of fishing and won a doll gymnast set with - count them - TWO Barbies! The anti-nausea meds kicked in mid-day and she was in great spirits. She ate! She ate peaches, drank water and juice, chicken nuggets and half a hamburger. We took a lot of pictures, overjoyed she was hungry and eating as much as how darling she looked in her little ladybug cap and fireman's hat.
Her mother said that today was a great day, one to keep as a memory because the days ahead will be hard. We know she is right. We are here to love each other, be strong, and hold hands
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