October 20, 2016 (Sara)

I spoke with Angela, the RN for Dr.Salo’s office, today. She is starting to prepare all of the medications for Maintenance. I still can’t really believe we are almost there. It feels just like last week that we were in induction…yet it also feels like that was a life time ago.

We still have yet to establish a comfortable time that we will give Maya her oral chemo (6MP). I really don’t want to be difficult but this stresses me out. Big time. I work with families. My job is to counsel families about their children’s nutrition – feeding the failure to thrive, autistic, severely delayed, medically fragile, and more. I attempt to encourage behavior change, mostly for the parents. I know that in order for follow through to be successful, the family has to see and feel change as comfortable and realistic. We try to build a plan together. There are very few things that I recommend with out asking the family if they feel it realistic…and those are commonly the recommendations that aren’t always followed. Because it doesn’t work for the family…even if my professional opinion is that they are necessary changes.

I just wish the doctor could tell me “there is a vast amount of research that shows giving the med at night is most efficacious”….but she can’t say that. There is just one research article from forever ago that shows a slight difference in timing. So I guess what I REALLY wish she could tell me is “giving the med in the morning is just fine”. There is just already so much change for Maya. And the holidays are coming. And the movie nights we can have! What if we want to stay up a little late and eat a bowl of popcorn? Not always – but sometimes. There are three times of the day that I think Maya could have an empty stomach…and only one of them feels comfortable. If only I could hear what I want to. I don’t mean to be stubborn. I just want something a little easier…for Maya. For me.

We were recently asked if the Northern Nevada Children’s Cancer Foundation (NNCCF) could share Maya’s story in their quarterly newsletter. We’ve never really been hesitant to share the story since, as with any trauma, we don’t want to keep it to ourselves. We’ve been so blessed to have the opportunity to spread awareness multiple times. What is always difficult though, is choosing the information to offer.

They asked us to answer 5 questions. Ummm….but how many words do you want? I mean, we literally have a website that has probably 100 posts or more. When some one asks “how was Maya diagnosed and what happened next” and “how has it changed you life”. My answers are: “bruises, anemia, google, why’d I google, good doctor…I blacked out” and “life flipped upside down”. Or I could write a 100 page book. I don’t seem to have a happy medium or a one paragraph answer. None of this has been simple and I guess I just have too much to say.

Scott was away for most of the week for work but ultimately helped to reel me in a bit. The representative from the NNCCF was kind and let me submit as many words as I did. They, of course, couldn’t publish all of my words but I think they did a great job of telling the story. Our story.

If you’d like to check out the newsletter, here is the link:  Maya’s Story in NNCCF Newsleter

We are heading into our last weekend of no chemo for over 18 months and we have some fun things planned. We are looking forward to Apple Hill, a visit with Nona (my grandmother), and hopefully some great baseball (which for this family means more Dodger wins than losses). No matter what we’ll enjoy.

The dragon’s smile and stamina breeds warmth and strength for our home. Even when she has tough nights with leg pain and restlessness, she wakes for a new day with excitement. She is flying as fast as possible, loves intensely and spits fire as much as ever. She’s enjoyed a play date with her besties and we can’t wait for more outings soon.

I look forward to the day I no longer have to look to her for a reminder to stay strong and calm. I look forward to the return of my own strength and contentment from within. Till then, I graciously accept the reminder from my strong and incredible child.
Love is life.