November 20, 2017 (Sara)
I naturally get prompted to write an update after I write a super long text message to a friend or family member about Maya’s status. There is some sort of threshold I cross that elicits communication with the most amazing support system. Plus, I am grateful. For so much I am grateful and this week seems like an appropriate time to express myself.
Two weeks ago we had yet another chemo clinic. We are in the middle of cycle 5 and while it wasn’t a lumbar puncture, Maya actually had a rough week. Her ANC was found to be pretty high for the 3rd time in a row (ANC of close to 3000) and while that doesn’t necessarily make her feel unwell, it always makes us nervous. Aside from a increase in 6mp, the week was comprised of the regular cocktail we give Maya to stave off the cancer. It continues to include a week of decadron (steroids twice daily), zantac (to help with stomach upset from decadron), allopurinol (to enable her to metabolize the 6mp), methotrexate, bactrim (to keep a specific pneumonia at bay), miralax (you all know why), CALM (magnesium), uhhhh…oh yeah and 6mp at a slightly increased dose.
Maya spent the week at school and it was a pleasant distraction for her but when she was able to come home and melt back into her usual state, her smiles were less consistent. I tend to blame the steroids and deep down know that she will come out of this fog but there is always some fear triggered. I get tense with the idea that she will get stuck there. I exhale each month when she is done with decadron. It is as though I have watched her stuck at the bottom of a pool struggling to breath. Then I see her plant her two feet to the ground, bend her knees and push up back up for air. I see the bubbles flowing from her nostrils the air fill her lungs as she inhales dramatically. Then I see the smile come back full force. This happened. Of course it did…but about day 4 of steroids I worried.
Since then, she has been great. We checked mid month labs today because we increased Maya’s 6mp two weeks ago. Today her ANC is 750. It is quite a drop for the almost 3000 two weeks ago but we are relieved to see her “in the zone” for now. I spoke with DrZ and he made me giggle with a comment that went like “why does your kid love roller coasters so much? Can’t she like the teacups?”. I had to reply with….she’s just not the “teacup kidda kid, doc.”
All of her other labs are great. Well as great as we can expect for our chemo kid. Hemoglobin 11.1, platelets at 248, white blood cells at 1.6. Her metabolic panel and electrolytes are beautiful. Though I know she could be continuing to drop, I am grateful for this news today. We will monitor for further suppression of her bone marrow and perhaps check again next week. Or not. All in all, this was welcome news for us today.
We will celebrate the Thanksgiving Holiday as a small group of family and friends like family. I will hold my glass high and state I am Thankful for so much. Today, I am especially grateful for the doctors in my life. The doctor I am blessed to call colleague; Dr Powell inspires me in ways that I will never forget. He treats those that work with him as friends and the families he helps as peers. His way with words is magical and I hope to have his grace one day when dealing with others one day. Thank you. I am grateful for the doctors that are caring for my grandmother, and parents, and family. I am so grateful and blessed to have the doctors and nurses that are caring for my children. Thank you all. I am grateful for the health of my family and friends. For the beautiful home I live in with the perfect little family. I am grateful for my dog, Pelei. I am grateful for my job. For my own health. My own strength. I am grateful I live where I live and that I can do what I do. I am grateful that I am surrounded by Love all most all of the time. Finally, I am grateful for the season’s change. While I hold on to this artificial blonde hair, bare feet, and aloha spirit…I welcome late fall and winter. For Spring Time will bring our next journey. Our road to Survivorship. 
I send Love, light and dragon’s breathe to those that are battling. Not just with cancer but with loss. My dear friends that have lost the unimaginable, I hurt for you and hope you find peace soon. Thank you all for your continued strength and love. We would not be as strong with out all of you.
Love is Life.
s