Life has changed as I know it.
Life looks a lot different right now. My almost 2 year old daughter who has Down Syndrome was recently diagnosed with acute myeloid leukemia. Over the last couple of weeks, she had issues with various things that we equated to normal toddler things. GI issues after changing formulas, teething, fevers we thought were due to the teething, and fatigue which we thought were due to her barely sleeping. Last Thursday, her eyes were swollen shut after I got her home from the baby sitter so I took her to urgent care. They didn’t want to mess with it so it was recommended that we go to the ER. So we took her. They did some blood tests and that’s when we found out the news.
She is currently receiving chemo treatment. Today is day four of chemo, and her last day of treatment this cycle. She will remain in the hospital for monitoring and observation for close to a month to ensure she is responding well to treatment. At some point, she will get to go home for a couple weeks, then be back in the hospital for her next round of treatment. She will need 6 rounds of chemo treatment. At least that is the plan right now.
So far she seems to be responding well to treatment. Right now just managing pain and trying to keep her as comfortable as possible and manage all of the fluid retention.
They expect treatment and overall management of the cancer to be up to two years. There’s a lot to be figured out during this time that we are just trying to take one day at a time. That’s all we can do at the moment.


