Dani was diagnosed with Acute Lymphoblastic Leukemia on 1/9/14 at 15 months old. Her risk factor was elevated to "very high" when further testing revealed a rare sub-type, MLL.
As I sat in our school's yearly assembly on January 9 to kick off our Pennies for Patients drive to benefit leukemia research...God whispered in my ear. I swear. He said..."that's it".
Dani had been sick on and off for weeks...very pale...very tired...very crabby. We took her in right after Christmas but didn't see anything overly concerning so we let it be. But after another week, our parental instincts said something else was wrong. So I changed up her diet to include more iron, told Mark I would make another appointment for her, and prayed for answers. God answered loud and clear. Sitting in that assembly...I just knew.
Of course I tried to talk myself out of it. I actually felt stupid telling Mark about it that evening. And REALLY thought when we took her in the next day, it would be a cold, the flu, an ear infection. But initial blood tests revealed dangerously low levels of hemoglobin. We were transferred to Children's immediately. They ran more tests, asked a bunch of questions, and began a blood transfusion.
The most common reason for low hemoglobin is a virus...we were starting to feel a sense of relief that that's what we were dealing with. Within hours of being here...the docs came in and said the words no parent should ever have to hear. "There are abnormalities in her blood...your daughter has leukemia".
Within about 24 hours, we knew her diagnosis was ALL, Acute Lymphoblastic Leukemia. A very high success rate...we were relieved. But a few days later, we got the results of some cyto-genetic testing, which revealed that Dani's sub-type is actually very rare. It is a Mixed Lineage Leukemia that involves the translocation of two chromosomes. Her risk factor immediately went from "standard" to "very high" and we were told that her treatment would need to remain aggressive for longer than we initially thought.
Dani's testing on Day 29 of her treatment showed that she is in medical remission, meaning that there is undetectable leukemia cells in her blood and bone marrow. But that does not mean we're out of the woods. Years of research has proven that just because it's undetectable, doesn't mean it isn't there. In fact, it likes to hide. Just one cell left behind can lead to relapse, especially with her more-agressive form of cancer. Her treatment will remain 2 1/2 years in length.
Besides the costly nature of going back and forth to the hospital, the HIGH cost of Dani's medicines, being out of work, etc., we have been warned that many of her treatment options may be considered "expiramental", so we are bracing ourselves for some major expenses along the way.
For more of Dani's story, please visit her Caring Bridge at http://www.caringbridge.org/visit/danicauetz.
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