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.

10.30.2009

The Making Of An Extinct Species

The mood on the sixth floor is warm and kind. Nurses in Disney smocks come and go, visit with the families as they take the vitals, smile and really see who is in their care. They know her interests already, her humor, and she smiles back.

Catscans and more procedures, and still Aiyana blushes shyly in delight when she sees that my son Tim has come, because he's cute and always smiles. She has had a crush now for about 2 years.

We are waiting for a green light for chemo, to be sure there is no infection or other complications. We have been told UC Davis is where treatment will continue but we are happy at Sutter. With the level of care Aiyana and her parents have had here, it is hard to imagine somewhere else could be better, but I have a feeling it will. UC Davis is on everyone's lips when I tell them Aiyana's story.

Now we know what Aiyana has is a hybrid of two types: acute lymphoblastic and acute myeloid. There is a formal name for what she has, I'm sure, and purposely I am ignoring the statistics, because Aiyana is not a statistic and we're in this to get a full-on A with extra credit. I overheard that this hybrid disease is rare. But no one knows we will fight it off with our magic swords. We're taking it DOWN!

Love permeates the walls of this yellow room with stuffed animals at the foot of the bed covered with her comforter from home. It is amazingly comforting to see her among her things. Now we watch and wait as the scent of chinese takeout fills the room.

10.29.2009

The Last Week in October

It started out pretty good, with a 40th birthday party for her mother on Sunday and lots of laughter and camraderie around the big dining room table. Everyone was there to celebrate this lady who gives so much to others.

Aiyana looked a little pale and definitely wasn't on her game. She had a little fever going and it was decided to take her in for a check. No one wanted to take chances if it was the flu.

Monday she headed in to the pediatrician around 11 and blood work was done with a rush on it, and by 4pm Aiyana and her parents were back in the doctor's office hearing the news that this was a little more serious than the flu. They went directly from there to Sutter Med downtown Sac and Aiyana was admitted.

As family scrambled to cover themselves at home and hurled themselves to the hospital, we couldn't imagine the diagnosis was right. Come on, a diagnosis like this must need a lot of invasive testing before they are sure. She probably had a virus affecting her immune system, and tomorrow the additional tests would prove that to be true. There was no need to be alarmed. It just couldn't possibly be Leukemia.

Tuesday came and went with our tough little cookie undergoing a bone marrow aspiration and spinal fluid draw to establish where and how the disease had progressed, and the news confirmed the diagnosis. But the prognosis was hopeful that nothing was found in either location, and childhood leukemia has an astonishingly success rate with treatment, so we were encouraged. Aiyana sailed right through.

Korina's eyes locked onto mine as she talked about things I never wanted to know that were happening in real time to our girl. I held her gaze as she struggled through forcing herself to remain strong and solid and whole when anyone else, including me, would have splintered into a thousand pieces. I wondered how she did it, but I already knew the answer: she loves with her whole heart as well as her mind and realized before the rest of us that holding it together is key.

Wednesday a port (?) was put in Aiyana's chest, for treatments to be administered, and it was determined more specialized care could be given at UC Davis downtown Sac so she was moved there in the afternoon. Chemo starts today.

It seems like a year since last Sunday afternoon.

10.28.2009

This is Aiyana