Iris’s Story

Site created on September 26, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Sunday, September 20th Iris was at her Nana and Pappy's when I (her mother) noticed a rash on her legs. Having a blood disorder myself, I recognized the rash immediately and mentioned it to my mom, Iris' Nana. She commented her color seemed off that day and I agreed. I called her pediatrician the next day and told them everything, assuming they would want to see her and do blood work to see what was going on. 

Wednesday, September 23rd, Iris had a doctor appointment with her pediatrician to have her rash checked out and get blood work done. When the blood results came back Wednesday afternoon, I was told to pack up things for a few days and head to University of MD in Baltimore with Iris because her platelets and hemoglobin were both dangerously low.  When we arrived, more blood work was done and late Wednesday night I was told we were being admitted and to expect to stay atleast a week. 

Thursday, September 24th we were told that though her white blood cell count was good, 80% of her white blood cells had leukemia in them. One of the worst things we could ever imagine, our sweet girl was diagnosed with Leukemia. Thursday and Friday were filled with a lot of tests, meetings with doctors, and questions waiting for answers.

She received her first treatment on Friday night and by Saturday morning, we were told that her official diagnosis was CSN1 Acute Lymphoblastic Leukemia. This means that her spinal fluid was clear of leukemia cells on both day of diagnosis (Thursday) and day 1 of treatment (Friday). Moving forward, she will receive treatments twice a week, for the first month, hopefully in an outpatient procedure. As we learn more, we will share with you here. Please keep her in your prayers, and send healing thoughts her way! Thank you all!!

Newest Update

Journal entry by Kelly Hager

I seem to have gotten in a pattern of going long times in between posting. Luckily, not much has happened since our last post 2 months ago. 

10/18: Iris had her monthly lab check and everything went great! She was cleared to come back a month later for her scheduled next round of maintenance.

11/12: Iris went for her pre-op Covid test. She was in and out in 5 minutes!

11/15: Iris went in for her scheduled labs, IV chemo, and spinal tap with chemo. It was a bit of a rough day. She had thrown up the night before, and once on the way to the hospital (as we were merging onto the Bay Bridge). 
When we got to the hospital and checked in, she got sick again. It was decided at this time that she would not be getting the spinal tap, but would still receive the IV Chemo. She would also start her 10 doses of steroids as scheduled. 
There were serious talks of us being admitted because she could not keep anything down for the first few hours we were there. By 3pm, she was allowed to go home since she had not gotten sick in a few hours. 
We started steroids that night which proved difficult since she has to eat to take them, and she didn’t want to eat in fear of getting sick. 

11/16-11/19: Iris was out of school all week due to being sick. Luckily Monday was the worst day, but she continued getting sick every day through Thursday (11/18). By Thursday night she was requesting bacon for dinner so we knew the sickness was gone and she was feeling bad due to being on the steroids. 

11/20: Iris woke up ready to eat at 6:30! So at 6:45 we sang “One last time” and finished up her steroids for the next 12 weeks.

She has to go get blood work done on Monday 11/29 to see if her blood work is getting that much better or if her levels were that good due to having a virus. 
She will get a pre-op Covid test in December and then has her lab check and spinal tap with Chemo on December 13th.

Thank you all for keeping Iris in your thoughts and prayers! Our girl continues to amaze us each day! 

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