The Neverending Story

'The finest steel has to go through the hottest fire.'
--John N Mitchell

We set up this website in late October for our wonderful, inquisitive, loving Aiyana. Yana is our eight year old daughter, sister, cousin, niece, friend and granddaughter who was diagnosed with an extremely rare form of leukemia (MPAL).

Aiyana had an amazing life and we are filled with hundreds of heartwarming memories. May all of us take to heart how much a little girl from Lockeford, CA, impacted the world and be reminded and inspired to never let the sun go down without living each day all the way through.

Her Spirit is in every Butterfly.


She Begins Her Journey

Our beautiful Aiyana took God’s hand on November 24, 2009, after a short battle with Leukemia. She was 8.

Aiyana loved music and laughter, especially when the house was full of the people she loved. She especially enjoyed helping her mom and sister plant flowers and vegetables in the garden. She spent her time on earth singing, dancing, and showing us how to love each other.

Aiyana was joyous and empathetic, a good listener and friend. She brought enormous joy to every minute of every day and was gracious and loving and kind. Aiyana travels ahead of her mom and dad, her grandparents, aunts and uncles, five loving sisters and brothers, and many more cousins and friends. She learned to walk and run with us: now God is showing her how to fly.


There is a delicate balance and power in quiet, having too much and yet not enough. Her parents need Need NEED the normalcy of life around them and all the while not being sure they are ready. As we did the errands necessary in a time like this, I watched the world around us, people singing to the radio, arriving at work or heading to school, and cars being packed for Thanksgiving travel. Is that the hum of lawn mowers in the neighborhood?

How strange that life goes on. Our world on Tuesday afternoon seemed to stop in its tracks so we could feel Aiyana's life as a whole unit, start to finish. It is so very hard to let her go. We stood together and held on tight to honor how incredibly valuable her gift in our lives has been.

But life did not stop, even for us. Last night, with Norah Jones playing sweetly behind, we sat around the big old kitchen table and sifted through thousands of family photos and out tumbled memories, about Aiyana and everyone else, happy and funny and crazy stories about this amazing family. Food was all over the stove and on the counters, the table and sideboard. We had to move stuff to get to the plates. People were perched on the stools and roamed in and out, around and around, and everyone was laughing and talking at once. Just like usual.

Today is Thanksgiving. We have so much to be grateful for, don't we, the love we can count on no matter what and the memories that keep us connected. We are very blessed.


On the Grassy Slope

As I headed over the causeway this morning, I looked as I always do to my right at the sunrise over the open fields. And today in the tule fog that draped low to the ground I had a vision of Aiyana in a beautiful handcrafted wooden boat.

She was in a white gauzy dress and her hair was loose in long curls that draped down her back and over her shoulders. It was brushed back from her face as the boat moved with the current away from me and I could see her clearly looking this way and that at the gentle weeping willows and grassy moss on the shore dotted with wildflowers.

The fog hung low at the banks but the waterway was clear. Aiyana was warm and happy as she floated toward the distant arched gate which was coming into view. And as I watched her get closer, the beautiful gates gently opened with a golden glow and I could hear the most beautiful fairy music playing from no instrument I had ever known.

There were swirls of loving spirits in beautiful pastel colors assembled by the shore as I watched her pass through the gate. Her Grandfather's mother was there, and my parents, beautiful spirits that wrapped around her and helped her to the bank. She sprung onto the grass solidly on two feet. Her face lit up as she discovered her hand and foot healthy and whole and I watched her begin to run with Ginger barking joyously at her side. My last glimpse was of the gentle gate closing and a great celebration of love being heard throughout Heaven.
We were urgently summoned to the hospital early this morning after learning that Aiyana was hemmoraging from her brain. There were so many things that could have gone wrong but amazingly we were not prepared for them to.

Her family spent hours and hours with her, memorizing the pink nail polish on her small nails and her beautiful hair that her mother had just the other day washed and braided. Her dollie was tucked into her side under the prayer blanket with her name and our minister was there.

In the quiet of our individual prayers to Aiyana and God, I told her the story of her travels and that she would love it there. I told her it is very hard for us to give back a gift from God because we would never be ready, but we had to share. And I told her she is magic in our hearts and our lives and that will never change. We will be together again, I promised, and when we do we will look for her on the grassy slope just on the other side of those golden gates.

And then our beautiful Aiyana was gone.


Those Who Love

Chemo began today. There were early morning concerns about bilirubin levels and a delicate liver, but by 3pm the best of the best had committed to a course of treatment that took in account all the factors Aiyana is facing. By 5 the drip began.

Kenny Loggins' CD played in the background, and her parents embraced and shared an intimate moment of prayer as we stood just outside, imagining health and laughter for her, and letting faith take hold.

It was a tense day but good, too. Stability reigned. I was gratefully thinking of all the hours her Granny and Grandpa love and spend time with the children, patiently teaching them to crochet, do art projects, sing and go shopping. Cousins and brothers played music for her, and another cousin is filling the walls with art. The matriarchs are comforting the family with food. Aunties and uncles, Darlena and Ron, Timmy Two Shoes and extended family, friends and teachers all come because they know a familiar face does wonders to lift the spirit. And they have learned that being there is better than not.

The nurses from the pediatric ward come in every day with tears and hugs and best regards. Aiyana is on everyone's lips, they say, she is THAT special. Her essence flows into our hearts and makes us stronger.

We don't know what Aiyana talked to God about in those 3 minutes on Thursday. But there has been an amazing shift inside us, as our own will falls away and we relinquish ourselves and are focused completely on Aiyana's strength, spirit, and battle. We pull together because we know it matters that we do.

Today was a critical day. Battle on, darling Aiyana: battle on.


The Mermaid

First off, a few corrections. The machine Aiyana is on is called Ekmo (sp) and is designed for sustaining longer term health issues than the typical bypass machine. It is relatively new technology and the only one at any of our area hospitals, and wasn't it just wonderful that Aiyana happened to be at THIS hospital with THIS machine at the precise moment she needed it? And her diagnosis of MPAL is solid, although the last evaluation showed evidence of no AML cells. She is still dealing with the rarest form of leukemia even though the next treatment will be specific to ALL cells.

This morning Aiyana's mom was rubbing her feet early in the day and felt her right leg move slightly. She stilled her hands and watched as Aiyana moved her other leg slightly and pushed back slightly in her hand. Aiyana is in a delicate situation and cannot move at all while she is hooked to the machine, so the nurses had to take her deeper in sleep. But it felt wonderful for her mother to feel her little girl was present and fighting.

We arrived mid morning with - what else: food - and spent about 90 minutes in PICU. We talked and sang and hummed and reminisced, gently massaging her leg and hand, watching and listening to her world of counters and mechanical blips. Blood pressure 116/71; heart rate 156 bpm; breaths 7 ... hey wait a second: breaths? Her lungs are trying to breathe even though the machine is doing it for her. The nurses call it practice and it will keep them in ready shape when the infection subsides and she needs them again. I like that her mom says Aiyana is currently a Mermaid. I read a happy Mermaid fairy story to her sister Avry this afternoon.

Little improvements happened overnight and the doctors were starting to pump proteins into her stomach so the gases have something to do and the gut continues to work well. She is on a mild form of dialysis now to ensure the blood sugars are stable and allow the kidneys to produce optimal output. She is on huge doses of Heparin and Dopamine and a host of other meds working together to thin the blood, regulate the body functions and keep things on track.

Her antibodies were given a boost of a med for faster production but it was quickly discovered that the marrow cells being produced are predominantly cancerous ones. For each 100 new cells, 90 are leukemia and 8 of the 10 remaining are damaged. So here emerges yet another more serious situation than the last.

Since the cancer cells are multiplying at such a rapid rate, doctors believe chemotherapy treatment should begin at once. Everyone realizes this is an extremely risky move. Doctors from all over the country have been consulted and her leukemia is so rare, only a few case studies even exist. Everyone agrees that if treatment does not begin, the leukemia will take complete control. On the other hand, treatment brings its own series of dangers to her heart and kidneys and a host of other potentially life threatening reactions.

We spent the day watching her parents wrestle with the agonizingly difficult choice. After many talks with the specialists, and walks and pacing the floor, and sitting by Aiyana's bedside, it was decided to press forward tomorrow morning with the full course of treatment for A.L.L. Our hearts cling to the belief that if the treatment can just beat it back a little, Aiyana will take it from there.

Thank you for your 'round the clock prayers.



It has been two days of relative calm. We are grateful the bypass machine is working and monitoring each and every organ, each and every level that is charting her body. I gently tickle her foot, praying from the top down as her mother does, that her mind is calm and focused, her heart is strong, antibodies kick it in her lungs, arteries and veins remain strong and supple, and her kidneys, liver, spleen and pancreas keep up the hard job of filtering her blood. There is nothing between my thoughts and Heaven as I close my eyes and feel the warmth of her seep into my hands.

We are satisfied now with baby steps. Even normal stabilizing incremental steps are enormous because they will build one upon the other towards a day when health is restored. We celebrate that her kidney output is normal; she is peeing like a racehorse; her blood sugars are dropping to appropriate levels; her heart rate is strong and solid; there is more activity in her lungs; and her mind is soothed by lullabies on the speaker near her ear.

Her sisters and cousins and aunties tell fabulous stories of Aiyana being Snow White and all her uncles and brothers and grandpas are the seven dwarfs. Or she is Belle and family members are the teapot or footrest or cup. She is sometimes a fairie and flies with wings. I hold her toes painted with blue polish and they are no longer cold.

I will read to her my children's favorite books, one after the other, quietly smiling as she hears them from deep where she rests. One of these days when she opens her eyes with those long lashes fluttering and focusing, the faces of her mother and dad will be the first thing she sees with their Pepsodent smiles. And when she awakens, we will read the stories again with all the character voices and she will know them by heart.


The Greatest Minds

The family was different today, more intimate and connected on the outside. Chicken soup comforted us on the inside. We filtered in and out, back and forth between the pediatric ICU (PICU) and the waiting room, walking the halls, talking quietly and making our deals with God.

Inside the PICU there was a team assembled outside Aiyana's room. The lead specialist recapped the last 48 hours with xrays of her lungs on his laptop and told the unbelieveable story of the rapidity of her bacterial infection. Showing each treatment strategy and the lung's response, he developed a framework for what lay ahead. UCD is a teaching hospital, but no one there was a more avid learner than her parents, her auntie and us.

This is where we are today, he began, and this is where we are headed. Aiyana has already begun fighting the infection and is building antibodies. We see signs of their activity in her lungs. We will monitor her vitals and machine functioning with two nurses around the clock and her organs will be watched minute to minute. As Aiyana begins to heal and recover, the lungs will begin to clear in the next week or two, and as they begin to function again, we will begin incrementally weaning her off the machine.

He gazed at Korina and Jim and said, I had an infant in ICU and although I work here and know the routine, I know how you feel. What can we do to support you and help, and do you need accommodations? We're set up at the Ronald McDonald House, thank you, was their reply. And then to us he said, you are charged with making sure they eat nutritiously, sleep every day, and get out of the hospital at least an hour a day. With great compassion and humor he added, We don't want them developing ICU psychosis.

And then he turned his attention to his team and fired questions and they went to work collaboratively discussing and addressing issues related to her care. We were off their radar by that point but present to see the best minds intensely focused on solutions and strategies. There is great peace knowing their hearts and minds are with her.

Her Courageous Heart

What joy there was on Tuesday night, with Aiyana laughing herself silly.

Aiyana held her own overnight and is working hard to heal. Keep on keepin' on, honey: we're on our way with comfort food. This is her courageous Mom and Dad.


Third Time's A Charm

Busy this morning with 9 quarts of chicken soup on the stove and Tater Tot Casserole in the oven, we were interrupted by an urgent summons to the hospital. Aiyana was in trouble.

Last evening we celebrated that her fever broke around 8pm. Man, we all thought we were home free but overnight she had distress breathing as a lung infection took hold, and she was moved into Pediatric ICU around midnight.

Her condition steadily worsened throughout the early part of the day and the prognosis was grim. She had an infection, a rapidly moving infection that had compromised her lungs at a time when she essentially had no white antibodies to fight it off. By the time we arrived, she was hooked up to all sorts of machines and tubes to try and stabilize her. The doctors had already exhausted the first of three treatment options and were midway through the second which was appearing ineffective.

Really long minutes ticked by as the family huddled with the Minister and her parents stepped out from time to time with updates. We paced and held hands and waited. When we were able to go in briefly to see her, she lay bloated and unconscious on the bed with her small chest vibrating from the breathing apparatus attached to her lungs. Her little heart was beating over 200 beats per minute.

And then code blue. We pasted ourselves along the walls as doctors and nurses tore past us to help the flurry of people working to resucitate her. Her mother and dad watched, hands over their mouths, shocked to be seeing what they never hoped they would. And then Aiyana came back, strong and stable, and it was decided to go for broke.

We are on the third and final option now, one used for temporary bypasses during pulmonary surgeries. Essentially the huge machine attaches to her veins and arteries and pumps blood out of her body, artificially oxygenates it and returns it to the body without using her lungs. What the doctors hope is that Aiyana's lungs will be able to rest and heal themselves. We've already been told it will get worse before it gets better. I can't imagine how much worse it can be than today.

And yet. Aiyana has defied all the odds since the day she was born. With cerebral palsy and epilepsy, her parents were told she wouldn't walk, but she runs and dances and rides her bike. They said she wouldn't talk but I dare you to stop her. Her wonderful father says: give her the chance and she will do what she's always done: defy the odds.

But a double helping of prayer will do wonders, too. Please join us every day until she is well. She needs you now more than ever.


The Fourth Day

So many things run through your mind when problems arise. And it did today, in spades. A low grade fever suddenly - SUDDENLY - spiked this afternoon. Already up to her eyeballs with work at home, her mom rushed to be with her little chick. I was in awe at watching what a simple gesture of a mother stroking her child's head can do, gently leaning forward to touch her ear with her lips and whisper encouragement, and her dozing and unresponsive daughter unshuttering her eyes and muttering back. I think it was the most powerful gesture of love I have ever seen.

Up and down, up and down the fever went all afternoon and evening as doctors and nurses scurried in and out to address nausea and take her temperature at 15 minute intervals. It was spiking at times to 105. Test results are due back today whether this is her body's response to chemo or if she picked up a bug but clearly there was no time to waste. Wrapped in cool towels and ice packs, the hospital tripled up on her antibiotics and super hydrated her. Eventually, finally, thankfully, it looked as though the fever was coming down and we were celebrating a drop to 102...

An on-call pediatric cardiologist dropped by who had heard about Aiyana. We liked him instantly, this doctor with kind eyes who reassurred us he would be just down the hall all night long. And sure enough, Aiyana's dad called us in the middle of the night and said she had been moved to ICU for labored breathing.

The Fourth Day after chemo is when many children develop high fevers and vomiting in response to the strong chemicals in their bodies. The more aggressive the regimen, the stronger the reaction. But on the evening of the The Third Day peals of laughter could be heard from the room and we were making lists of foods to bring. I'm glad we had that Tiger-by-the-Tail time, before we knew The Fourth Day would come.

As we walked to the car tonight in a strong embrace, we were acutely aware, maybe for the first time, that we haven't learned how to savor each and every moment because they have always been endlessly abundant. There will be better days ahead, we know, and we will bring her home when it is safe and right. Not on Friday, but it will come. And on that day, this day will be long forgotten.

Pudding Laughter

On the docket today is a flurry of activities at home to prepare for Aiyana's arrival, so everything is ready when we get the green light from the doctors. Last night she took a long lap around the ward and was walking so strong and fast, I nearly had to trot to keep up.

It was all smiles after such an amazingly wonderful day, and Aiyana ate and drank and read and did math homework online. When we came in, she was doing an art project with her granny and a hospital helper. Her multi-tasking skills are pretty cool, too. Hannah Montana seems to be always on the telly and she reads with me, plays with a doll, and talks to her grandpa, all at the same time. What a modern girl.

You should have heard the laughter as Grandpa reminisced about their first trip for sushi at the place with the little boats and her reluctance to eat. He made the big airplane sound with a cartoon character voice and at one point, she laughed so hard the whole room came alive with happiness. That a girl!

This miracle has been brought to you by a magical combination of good therapies, good doctors, and a good little patient bravely doing what they needed her to do. Aiyana knows going home is just for a while, until she is strong enough for the next go-round, but I see confidence in her face now. She knows what it is, she has done it already, and Round 1 is over and she won. Plus, look at the date: Thanksgiving is next week and there's NO WAY she's giving up her seat at the table.


Woo Hoo!

THIS JUST IN: 11.17.09:

Doctors this morning got the results from Seattle which confirmed without a shade of a doubt that the type of leukemia Aiyana is fighting does not include the more dangerous AML strain, meaning she has the less aggressive, more treatable, easier to annihilate type called A.L.L.!

It feels like the wind has shifted and now we're playing in OUR court. We've got you on the run, Acute Lymphoblastic Leukemia, and we're calling you out!! We've got a new acronym for you:

Already Losing Leverage!

Zippity doo dah zippity aaaaa
My oh my what a wonderful day
Plenty of sunshine comin' my way
Zippity doo dah, zippity aaaa

Some Over the Moon News!

Truly incredible news just in from Aiyana's big sister Morgan:

I'll have more details very very soon...but I just got a phone call from Aiyana and our Granny. Aiyana has some news...which would you like to hear first: the good news or the really REALLY good news?

Good news: It looks like she'll be coming home at the end of the week!!!
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. --Morgan



Aiyana continues to improve AND the day was full of crisp blue sky and white fluffy clouds. We are in full throttle to prepare things at home, to be ready for the day when they say -- TAKE HER: SHE'S YOURS! Those words we expect to hear any day.

A serious look at the house and sleeping arrangements is in progress, to move family around to accommodate Aiyana with a bedroom and private bath. It's weird how germs were something we accepted. I mean without germs that build antibodies, we'd be like the aliens in Independence Day who couldn't tolerate even the simplest virus (computer or otherwise). I've always thought they make us strong and resilient.

Not anymore. Soon we will snap on rubber gloves and with a bucket of Lysol go to work. Like chemo, we will champion the eradication of the bad as we whistle a happy tune. Carpets will be shampooed, floors cleaned and scrubbed, furniture moved and replaced, stuffed animals archived, lives rearranged, all with a you-bet attitude.

Aiyana's coming home, we all say: roll out the red carpet because she'll be coming home.

An UP Sunday

We walked in on Sunday to family time, a jovial combination of playing, bickering and talking at once and we dove right in. Visitors came by and we ate soup together and made a foam picture with sticky little colored foam pieces that were all over the bed, their father's shirt and my sleeve by the time we were through. Grandpa moved into the role of glitter gluer in spite of having a phobia about that. Let me tell you, I would have paid any amount of money for a picture of that.

Aiyana ate and drank and then she was up up up and down the hall walking with her groupies as we sang little songs. She went almost all the way around the floor, and that made twice in one day! That is mighty Supercalifragalisticexpealidocious.

Her sister and brother are so great, so strong, so aware of how they give their parents comfort and continuity. We are proud of what they do every day. They are stepping up in school, at home, and with each other. That is enormously important so their folks can concentrate on what needs to be done and prepare for the day everyone will be together as a family again. Like before. Aiyana, you keep it up, eating and drinking and exercising, and you'll be homeward bound before you know it.

Well Wishers

Friends from North Carolina:

The scriptures tell us that God will not give us what we cannot handle. When we think this will break us, that's when we need to have more faith. Aiyana is a big girl and the spirit God gave her is strong...

And in Minnesota:

Beautiful child, we are thinking of you every day. Your friends in Minnesota.


A Slow Melt

By now you've probably heard the news that Ginger, the family dog, was tragically hit and killed by a car on Wednesday night. Little Gingy was a -- dauschand? doxiand? dauschaund? -- oh for crying out loud, she was a wiener dog. We are so very sorry and will miss the little pup.

Have you ever bought an ice cream cone to take home to somebody? Then you know you have the most noble intentions as you hop into the hot car. You're halfway home and it begins a slow melt toward the cone and you tell yourself Don't lick it, don't lick it, but eventually you do, because it's trickling down your hand and into your lap. By the time you get home, all nobility aside, the cone is half gone with thick lick marks all around the base.

I always thought bravery was like that, a flash of nobility but something impossible to sustain. But that's not what I'm seeing. What I see here is a family focused and intent on staying present and facing life challenge by challenge, day by day. I'm sure it's hard, and exhausting, and sometimes dark, but they don't show it. What they show instead is a new definition of the word bravery that includes teasing, laughter, joy and hope, talking it through and talking it over. With great heart and compassion, they let their kids watch and learn from their fine example how to be strong and courageous.

And the rest of us, too.


Yin and Yang

Tonight our girl was in high spirits! Day 7 was through and she blossomed through it, especially with Grandpa at her side. They played, the way two people in love play, goofy and silly and fun. Wish I'd had a camera.

We brought her beautiful gifts from afar (Idaho) and (Livermore CA). Thank you again. We rocked out to the Hannah Montana musical Christmas ornament for most of the night and listened to Grandpa recite Puss and Boots.

There's a plan afoot for the family to spend quality time together (a great thing) and Aiyana's pop will be returning to work soon so Plan B sounds like a wonderful mix of sharing shifts at the hospital and home, to create a sense of normalcy if that's the right word.

Aiyana ate a whole bowl of chicken noodle soup broth today AND a cup of water, and was sporting a new polka-dot robe. We laughed and tickled and heard this amazing story of the first Christmas with a 17 foot tree that nearly tipped over in their livingroom. She liked our story of the back yard flooding because the water gizmo broke and overfilled the pool.

I will make it my life's goal to find the kit to make scarves rather than actually having to learn to crochet. Ambitions aside, I figure Aiyana's mom needs an ace in the hole with Christmas right around the corner.

We're sad not to have the kids this weekend but we'll wait our turn and Mom and Dad need their fix. It was great to hear lots of visitors stopped by and enjoyed such a wonderful day with Aiyana. Sweet dreams, honeybun.


Smile Songs

Aiyana's Smile Songs

Alligator Pie
GoodNight My Someone
The Giraffe Song
Zippity Doo Dah

Do you know other songs Aiyana loves or do you have fun ones to share? We'll add yours to the list.


Recipe of Love

Saturday was day 3 of chemo, different types in a combination as unique as her cancer. We came in to her smiling and laughing at videos of her crazy good family dancing around like goofballs and celebrating her mother's birthday. Her dad and brothers, mom and sisters, cousins, aunts, uncles and grandpa altogether. When we got to her breakdancing solo and her cousins chanting in the background 'Go Yana, Go Yana, Go Yana, Go Yana,' we watched her laughing over her shoulder as she twisted and writhed in dance moves, center stage and all eyes on her. Aiyana's face lit up with the memory of such a fun day: and she exclaimed, here comes Daddy and watched him dance into view.

When was that again? Oh right, two weeks ago ... today.

Aiyana takes it in stride, the bags coming in and out, in and out, and the monitor making blips and bleeps to track flow and volume. Everyone comes and goes, saying she is doing wonderfully well and even better than they had hoped. She slept some of the afternoon and the nurse verbalized what we were all thinking: wouldn't it be great if her memories of this time were only of movies and videos and sleeping a lot?

Her folks of course know what all the chemicals are, how many hours it takes to administer, and which ones are given on what days. For the rest of us, all we understand is that 'aggressive' means the greatest minds have pulled out all the stops on this one and are holding nothing back. Here! Here!

Love does wonders with normalizing life for her siblings through homework and dinners, school, play time, and performances. When life reminds them how different it is and they feel blue, a ray of sunshine is right there to hug and talk it through. What a relief that Mickey D gave Aiyana's dad a safe place to sleep peacefully through the night tucked beside his littlest child. It is healing and right and appreciated.

There are tiers to a family like layers in a cake. No layer is meant to replace another, and why would we want to when the ingredients all add to the unique, sweet, tangy flavor? Visits and cards, good wishes and dinners, funny stories and memories, errands and housework, thoughts and prayers, an unexpected hand, hugs and tears -- it is all a part of this family's recipe of love.

Keep it comin'!


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 mean nothing. 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.

Soup on the Stove

So today let's talk about the support systems in place. The Ronald McDonald House is within a couple of blocks walking distance from 3 main hospitals downtown. They offer open kitchen privileges for making meals from the well stocked main refrigerator and individual rooms have small fridges, too.

Families use the House as home base and come and go as needed. A big grassy yard for the kids is out back and a playroom stocked with toys, puzzles and books is in. TVs are in the rooms, which are spacious private family bedrooms ample enough to toss a couple of sleeping bags on the floor.

They hold to good neighbor rules for all these people thrown together by circumstance. Heck, a couple of times a week there's even a pot of soup bubbling on the stove with a welcome sign to grab a cup. And everything is free.

What a fantastic gesture to take away this small burden from so many families already overburdened and sick with worry. The House even found room for Granny and Grandpa's 40 ft motorhome so there is love and support literally a step away.

Next time you buy a Mickey D hamburger, imagine how much more you're doing.


Another Thing Coming

Watching a disease take control of a child is probably the worst thing imaginable. Aiyana's parents have been doing an amazing job of dancing between moments of panic surrounded by hours of patience and due diligence. They have established themselves as the ultimate primary care physicians, learning at the speed of light, challenging the outcome, and holding every step to ruthless accountability. As Korina says, We've got to be on our game 100% of the time because Aiyana is counting on that. We all are, honey.

Aiyana just went in for her first chemo treatment this morning. I know that everyone cannot be at the hospital although we all want to be. Who could imagine anyone missing those hard chairs in the waiting room, especially when there is nothing to do but let the day play out? It feels better to be there, even if all we are is a compassionate face for her parents to see.

Aiyana's gentle courage is everywhere in my thoughts. It is in the way she faced and adapted to cerebral palsey and epilepsy with spunk and a zest for life. It is in how strong and good she is. It is in how she champions for fair play and right living, and standing up to the bullies that tease her and others because of their leg braces by saying, 'Don't you have anything better to do?' She has lived large in these eight years.

I think this is going to be an unfair fight but not the way you think.

LEUKEMIA, DON'T YOU HAVE ANYTHING BETTER TO DO? You'd better pick on someone your own size because Aiyana is out of your league. And if you think for a second you've got the upper hand, you've got another thing coming. We all can't wait for the day she takes you down.


Over the Din

Chemo has not begun.

There was the seizure last Thursday, which was not a complete surprise since the anti-seizure medications had to be weaned out since they interact with the chemo drugs. But all sorts of evaluative tests had to follow.

And then there's the different types of leukemia to contend with. The Docs are still trying to identify and chart the most effective treatment for the dominant type first. We all want them to punch this right in the nose.

And yesterday a cavity in a baby tooth became another concern and it is being removed soon. No one wants to overlook any possible threat.

The place was packed when we arrived last night. Yana is so used to the din of a big family, I'm sure she took it in stride. But I know once treatment begins, and it looks like all systems are go for this week sometime, all of this will stop. We'll start calling ahead, stagger our visits, stop in briefly for playtime and hugs and be on our way. She needs healing rest and there's a ton of work ahead.


October 31st

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 were 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 room, the windows were painted up with bats and ghosts and pumpkin decorations were all over the room. Gavon came as the Spider King and Avry was a butterfly; Mom and Morgan were witches, Dad was a Hippie and Jason was a pirate. Granny and Grandpa and Grandpa Randy and me were cleverly disguised as responsible adults. :)

The staff came in every minute or two, superheroes and Minnie Mouse and soccer goalies and Jessie and Woody from Toy Story, with their arms full of toys and candy and flashlights 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, I think as overjoyed to see her hungry and eating as in how darling she looked in her little ladybug cap and fireman's hat.

Morgan brought Aiyana's prayer jar and she read some of the good wishes. She was overcome with the support of so many people. If you haven't checked out the facebook page yet, I hope that you will. And if you know Aiyana and the Self family, please write a fun event you shared with them or a Remember When story about Aiyana, to lift her spirits. IF YOU ARE A FACEBOOK MEMBER, FIND THE PAGE NAMED AIYANA'S PRAYERS.

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. Being present is all we have, loving each other, being strong, holding hands and trusting God will see us through.