November 18, 2016  (Sara)
So here were are…day 24 of the first cycle of maintenance. Not much to report. Things are getting a little more routine these days and Scott and I continue to try and find a stride – one that will be sustainable for the next year and a half. We have been waking Maya up anywhere between 9:30 and 11pm to give her the 6MP. I had such anxiety about the timing just before the phase and the most wonderful thing about writing publicly is…I expressed my anxiety and my wonderful support system helped me to find a way. Thank you. All of your comments, concerns, and suggestions are what carry this family through the dark times. Truly.

Maya has also been getting a weekly dose of methotrexate orally. 6 tablets before bed on Wednesdays. She can actually chew them but I offer them on a couple of specialty maraschino cherries – its the Italian mother in me. She has been tolerating them well (we think) aside from some lethargy here and there. Constipation continues to be a struggle. Its amazing that as a dietitian in early intervention, I help families work through their child’s constipation all the time – yet working with MY child and her constipation feels daunting. This whole journey has offered more empathy and understanding than I ever imagined.
I would say for a couple of days after the methotrexate (Thursday and Friday…maybe even Saturday) she is a bit off. She will find times for play and imagination but her mood isn’t that of a careless 3 (almost 4) year old. She tends to be a bit more dependent and needy and uncomfortable. She has complaints of leg pain (some times enough to warrant some tylenol even) at night and she has some random pain in her arms. Nausea hasn’t been awful but I can tell when she’s a little more “green” than feeling well. We try to accommodate as much as possible with hopes that we can still build the strong young girl we were growing before.

We are heading into the holidays with excitement even though this season looks quite different than last year. Scott and I are blessed to have laughed and smiled enough in our lives that it is more “muscle memory” than anything. Though it may be slightly less frequent, we do still find time to genuinely smile and laugh.

I’ll share a fun little memory. In the past Maya and I have discussed that I’m a Dietitian and that I work with children and their families to keep them healthy. I have some of my reference books at home with me this weekend and Maya got her hands on one.
Maya: “Can I have this book Mommy?”Mommy: “no baby, that’s my book for work”
Maya: “but it has kids on it. It’s for kids”
Mommy: “actually it’s about kids but it’s for me – I use it to help keep kids healthy remember? Healthy through their nutrition and the foods they eat”
Maya: “oh yeah…that’s because you’re a Nutrition-er right?”

She is so awesome. I wish that was my actual credential title. The kids are still growing and loving each other like crazy. Lincoln can count to three now and has more and more words each day. Maya’s hair is growing too. Its even long enough that I can put a clip in (when she lets me).

The dragon has a clinic/chemo day on Tuesday. We’ll have to really focus on being Strong and Calm since it is usually a bit more difficult for Maya to be accessed when it has been a while. And it will have been a month. The longest period of time between port accesses yet. Thankfully, her next lumbar puncture with intrathecal methotrexate won’t be until January – she will only be getting the spinal taps quarterly (not monthly).
Thank you again for all the love and support. May we all find our Holiday spirit soon.


Sara Morrison, nutrition-er 🙂