I haven’t updated here in a while. I have typed and deleted updates more times than I can tell you. The last 2 months have been emotionally draining. Everyday I can tell you exactly where I was 1 year ago. 

On April 26th it had been 1 year since Emmy was diagnosed.  

On May 30th of last year, I left the hospital to prepare our house for her coming home, and the next time I saw her, on June 1st in the middle of the night, she was on a ventilator.

A year ago today Emmy was released from the PICU to the regular Peds floor!

It’s hard to put into words what life is like right now and how it feels. I THINK we are still on that roller coaster they told us about on day 1.

Most days Emmy is enjoying life as a normal 6 year old; she graduated kinder, performed at her dance recital, went to dance camp, started cheerleading.

And other days she is off to the ER in the middle of the night for a fever, sad someone asked her if she was a boy, being sedated for a lumbar puncture, exhausted but can’t sleep from steroids, demanding crab legs on a random Friday night.

Emmy is now in her 2nd cycle of maintenance, she had a lumbar puncture, IV chemo and started her steroid pulse on Thursday. 

We haven’t seen her this down in a while, and it brings all the feels back. 🥺

Her labs have stayed stable since starting maintenance. We saw a little drop in her hemoglobin but not enough to need a transfusion. 

Her ANC is not in the “sweet spot” they like to see in maintenance, so they may run some additional tests next month to see if her body is metabolizing the oral chemo correctly. 

Despite her not feeling well currently, we are proceeding with all our summer plans, knowing that once she’s off the steroids she will likely feel back to normal! Hurry up, Tuesday!

Emmy and Brooklyn are suppose to start summer camp next week. The following week we are off to the ocean on a family retreat!

Emmy will continue to cheer, and Brookie will likely sit it out for soccer this summer as I think camp is going to wipe her out! 

Emmy will also be doing “tutoring” to help catch her up for first grade and starting speech therapy. 

As for Nate and I, still asking for prayers, coffee and babysitters!

❤️❤️❤️❤️