May 3, 2016 1:21pm (Sara)

Well, Maya’s labs were good enough to move forward with treatment but…they were not good enough to increase the dose of methotrexate. This phase is supposed to have accelerated doses of the methotrexate in addition to the standing dose of vincristine. The protocol for blood recovery and chemo goes as follows: ANC @ or above 750 will move forward with increased dose; 750-500 will give methotrexate at previous dose; <500 will wait 4 days to check again and take if from there. Maya’s ANC is now 611…so she got both infusions of vincristine and methotrexate though it was the same dose as 10 days prior.

I don’t know why this almost angers me. Its no one’s fault and I don’t really even know if it is “all that bad”. But I feel like she is so much more vulnerable now. She has had such good blood recovery in the past that I thought we nailed it and we’d be moving forward with no issues. The perfectionist in me doesn’t like set backs. This is really only a minor set back but the voice in my head is questioning if this changes her “cure rate”. Since we see Dr. Salo before we find out labs we were not able to ask her questions about what this really means. We just know that she got the previous dose.

On a positive note, her liver function looks WAY better. In fact her ALT is down to 80 from 595 (normal is 45ish) and her AST and kidney function look great. When the RN told us we weren’t moving up with the methotrexate, I was asking myself which I’d rather hear “her low ANC” or “her diminished liver function”….I have decided that I’ll take the low ANC.

Seeing her low ANC definitely makes me more alert. The doctor mentioned (before seeing her labs) that it would be “uncommon” for her to not make counts with such a low dose of methotrexate. Ugh. Uncommon…I like it when she follows suit (when it comes to this journey). I just get too stressed and try not to freak out. But sometimes…I DO freak out. I have to remind myself of reality, even if we put her in a bubble…50% of the time B-ALL kids are admitted to the hospital, its from their own bacteria and they can’t find a source. Mouth, GI, hands….whatever, kids are gross. Ugh. I’m really trying to stay positive but my heart breaks when thinking how things have changed and how they will continue to change.

We really wanted to take Maya to see tech rehearsal of 42nd street which opens this weekend. She loves tap. LOVES TAP! She loves tap and she loves Auntie Gen. Auntie Gen is tapping in 42nd street….I’m not sure that can compete with anything. But do we take her? She’s above 500…or at least she was 2 hours before chemo. Do we wait? I really have no idea. Maybe we can go to the pick up rehearsal next week.

I’m really not sure why my initial feeling is anger. But I’m mad. I’m mad at this whole situation sometimes. I want her to go to school and play with her friends. I want to take her to the show. I want to let her play at the park. I want Lincoln to start school and get the interaction that he needs. I want to know that next month when Scott’s siblings come that she will be able to see them and play with her new cousins. I want to let her go to dance class. I want her to feel good. I want the worst to be over. I want to know that she isn’t fragile and that my happy, strong, funny, loving, smart, amazing little girl can play and giggle and laugh with no cares. That she will be the same after all this. But I know we will all be different. We all have to change. We all have to adapt. We all have to somehow find peace among this chaos.
WBC 2.3
Hgb: 10.7
Platelets: 399
ANC: 611 – time for precautions again.
She is feeling “okay”. Today there is much more resting than there has been. She has a little bit of a runny nose that we will monitor but her temp is stable.

Maya the dragon is adapting. Her wing was nicked but she is still flying. She may not be soaring as she was last month but she is still filled with fire and she is healing. Her strength and love helps me to cope and adapt with her. I am so thankful for our amazing support. Thank you.
Love is Life.