Jul 7, 2016 1:13pm (Sara)

I can usually tell when we’ve been too quiet and that it is time to write an update. Text messages, Facebook messenger, phone calls…they all start flowing in. It is truly a wonderful feeling and a reminder that Maya (and this family) has such a vast support system. It reminds me that we are not going through this alone and Maya’s warriors are right behind us. The fact that our Caring Bridge journal has over 8200 visits is proof of that with out doubt. So thank you all for reminding me that we are loved.

Scott’s words last night were perfect. There isn’t much more of an update I can think of. Tomorrow we will get her labs drawn to find out where she is at and if she needs any blood or platelets. We are going to go to the clinic rather than the local LabCorp just in case she’ll need a transfusion.

One more dose of decadron. One more dose. It is absolutely amazing watching a three year old eat more than what an adult woman can eat. I had a discussion with a colleague yesterday and she helped me to understand what might be going on. When children go through trauma and they lose control, they (just like all of us) find ways of coping. Stress eating is a real thing and when you couple that with a steroid that increases appetite…a three year old can pound a whole bag of popcorn and 1 and a 1/2 bean and cheese tortillas.

I know there is some humor in the fact that Maya can eat an intense amount and that there is some basic survival to it as well. It all makes sense to me but…it still terrifies me to watch. I can’t tell if it’s the scared mommy in me or the registered dietitian that cringes at all the salty foods she is craving and mindlessly consuming. Witnessing her put piece after piece into her mouth at 3am and then screaming when I try to distract her from it is difficult. But as simple of the idea it is, my colleague helped me to realize that this could actually mean she is coping. She is doing what she has to do….to survive and deal with all this messed up stuff she is dealing with. And she’s doing it successfully not matter what my opinions of her food intake. It is difficult to watch but I am hopeful with this new outlook that Maya is very normal. I am hopeful that she will come out the other end of this just as happy and mentally healthy as she was before.

Maya’s friend, Alicia the Unicorn, has started the part two of Delayed intensification. She was admitted to the hospital for her long infusion of chemo and observation and I think she is now at home or close to it. Her mom, Heather, and I have become friends and we check in on each other often. I am so blessed to have my virtual friend and always love the pictures and videos her family sends. The recent pictures of Alicia are very No Hair Don’t Care. Little thing lost her hair very quickly and I think it is helping Maya cope.

Last night I had to flip my pillow over because there was so much hair left on it from Maya’s earlier nap. Needless to say she is well on her way to No Hair Don’t Care…and we just keep reassuring her that her head is so super cute.

Thank you for your wonderful support. Thank you for your thoughts and prayers and love and light and strength.

I found out this morning there is yet one more local boy diagnosed with B-ALL. I don’t have details but my heart is breaking for the family. We are so lucky this is not a death sentence but man…it took a long time till it stopped feeling like one. I have offered my information via the acquaintances we share. I hope they reach out. And if they don’t, I hope they have even half the support that we do.

There were times when my mind and heart were not dark, they were empty. I was empty and yet you all helped fill me up again. I wish that for everyone. Thank you.

Love is Life.