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.


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.


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