October 26, 2016 (Sara) 

We have officially started Maintenance. Maya was NPO last night for her lumbar puncture this morning. We made it to the clinic only 3 minutes late and her lab results came back quickly. ANC is at 1017 and platelets are at 270 so we are able to start the next and final phase of treatment. We can now start planning a little more for the future and have an official end date of treatment. We will come to the clinic only once a month for IV chemo. We start “pulse” doses of decadron today – 5 consecutive days every 4 weeks. We also start the 6MP and weekly oral methotrexate tablets. And by “we” I mean Maya but we most certainly fight and endure together.

We have been blessed with 2.5 weeks of a break. There was a wonderful visit to Nona’s and…a horseback ride! We aren’t entirely sure it was “recommended” since we aren’t even allowed to have a real life Christmas tree but – well the look on Maya and Lincoln’s face was worth all the risks.

I wish today felt a little better. I really just feel tired. It might be because I haven’t slept well in a long time…or it could be because I’m tired of feeling stressed. And worried. I’m tired of seeing my child have to go through some things a child should never have to endure. She makes it so easy when she is her usual Strong and Calm. But we can’t always be strong. No one can. Today’s trip to the bouncy bed was a bit scary for her. She was uncomfortable and sad…it made my heart break. They had to infuse the propofol while she was still sitting up crying and the nurse gently guided her to the pillow as she fell asleep squeezing my hand. My heart hit the floor.

My anxiety subsided after some coffee. Maya woke hungry and in good spirits. She got to pick out some super cool Beads of Courage and watched a movie for the rest of the time needed to “lay flat” after her spinal tap.

Our next chore is to pick up all the new medications and set up the Morrison Refrigerator MAR…

Final day of treatment: April 21, 2018
Save the date: sometime that summer…..there will be a party.

Love is Life