February 8th, 2017  (Sara)

Sometimes I have a hard time finding words that I feel are worthy of my friends, family, and other support system’s time. I sometimes have a hard time finding words, or thoughts for that matter, that are even worthy of my own time. I get overwhelmed sometimes and know that I would just blubber over my words and thoughts in a presumably whiny and obscure way. I find this isn’t helpful for anyone…including myself. I rely on Scott’s strength, comfort, and ability to communicate when I cannot. I rely on my parent’s unwavering support and stamina. I rely on my friend’s and family’s text conversations to communicate. I also rely on the patience of you all. I take advantage of your commitment and allegiance as you wait and wonder what is going on. I don’t mean to leave anyone in the dark. I don’t mean to make anyone wonder. I just, at times, find myself silent. The last month has been more of a roller coaster than expected and while I usually at least have words to express anxiety or fear…this month I found myself silent. Inside and out.

Personally, I have felt as though I have  trudged through a swamp. I am not ignorant to the fact that I have not walked alone. I know very well that I have so many by my side – taking one step at a time right next to me. Picking me up when I trip and nudging me along the way…silently as well as physically. I should get a tattoo (and perhaps one day I will) that says…I am grateful. Because I am. And a lifetime of saying it will still not be enough. I could not do what I do and be who I am…be as strong as I am without everyone in my life. The ones that are near and the ones that are far. The ones I truly know and the ones I only virtually know. The ones that have an everyday role and the ones that are more unfamiliar. I have needed everyone. And I am grateful for you all.

Over the last two weeks we have taken great strides in Maya’s care. Two weeks ago Maya’s liver was still having a hard time clearing and detoxifying her body. We were under the impression that Maya would test positive for the genetic mutation (testing positive for TPMT would indicate an enzyme deficiency or abnormality – see Scott’s post from 1/26). She actually tested NEGATIVE. Interesting for sure. We appreciate Dr. Zucker’s choice to test the metabolites of 6MP prior to obtaining the enzyme genetic test since for some reason…she is not (or perhaps was not) metabolizing the 6MP appropriately. He could have waited to get the test and then chosen to test metabolites…or not. We are glad he did since those came back quicker and proved we needed to consider a change urgently.

We added the allopurinol and she has been doing quite well. Last week her labs came back with the lowest liver enzymes she has had since the beginning of treatment. Dr. Z mentioned her liver felt smaller and while her belly was still a little more…ummm….shall I say…pleasantly plump…than it typically is, she looked less “puffy”. Her bilirubin was creeping down into within normal limits and she overall felt better. Even her ANC was 1340 – ideal.

This week she has continued to feel good. We have been able to ease from the aggressive bowel care and have maintained a couple (to few) poops each day with miralax and prune juice. We traveled to Dr. Zucker’s today for a lab draw. The visit with Angela was a welcome reading session for Maya. She was ever so strong and calm and though her pleasantly plump little body has changed, Angela continues to access her with ease (at least she makes it look easy). I can’t remember the last time Maya cried at her buddah button access…I would need to look back into my Beads of Courage journal. After the visit, Scott and I returned to work and Maya returned to her day with Grandma Bella and Lincoln.

Dr. Zucker texted me around 1:30 today with the results of Maya’s labs: “ANC 520….” Then followed with: “ Everything else looks great. Will have to be careful this next week as we are toeing the line of too low and hold.”

So. Here I am. Still waiting for the “glorious Maintenance” to feel like “maintanence”. I suppose it might be right around the corner but I am afraid that I find myself needing a spotting scope (as Maya calls a telescope) to see the easy part. I’m really ready to get off this roller coaster any time. I’m ready for Maya and Linco to go to school. I’m ready to not worry. I’m ready to go to my friend’s Lularoe and Rodan & Fields parties. I’m ready to take my kids to the movies. I’m ready for playdates. I’m ready to see my children swing at the park. I’m ready for a few spring training baseball games in Arizona. I’m ready for a purse without hand sanis. I’m ready for a pony tail in my daughter’s hair. I’m ready for plane flights to Hawaii. I’m ready to move on from the feeling of “missing out” to the feeling of “fulfillment”. I’m ready when you are Universe.

This is a long road. We all know that. We knew that from the beginning. The marathon is almost a year in and I’m feeling my stamina starting to wane. My dad calculated that around St. Patrick’s day we will be approximately ½ way there. Half way to the end date of treatment. So we can start to heal. And truly move on.

Dr. Zucker has made some choices with Maya’s care that have made a great difference. He cannot honestly (and ethically) say that this new support and treatment with the lower dose of 6MP and addition of allopurinol will yield the previous prognosis of approximately 95% cure rate but…he has reason to believe we are still on a good path. As I have told others, we cannot kill her while trying to save her life so we just have to have faith this will work. Dr. Zucker has stepped into this dragon’s fight and become more than just a warrior. He has become a beacon of light that is now guiding us to our next realm and surrounds this family with faith that we can and will prevail once again. We are honored to have him on our team.

On a much lighter note….little Lincoln turned TWO yesterday. I cannot believe I no longer have a baby…though he still nurses like one at times. In hindsight, a pirate party might not have been the best idea (with an ANC of 520) but I sure am glad we did it. Everyone enjoyed and he felt special. I might have gone over board but I just feel he deserves to feel special too. On Friday we get to go see Dr. Papez for his 2 year appointment. I truly wish Maya’s ANC was high enough so I could bring her…to wash the pain of last year’s annual wellness check from our souls. Oh well. We will have to just see Dr. Papez out in the wild soon.

Thank you again. Love is Life.