Month: November 2016

We woke up to a very pleasant surprise this morning – approximately four inches of snow! I suppose most people check the weather these days and likely not as surprised as I was but…well the bubble I commonly float around in didn’t allow me to remember that it is that time of year. We had completely forgotten to bring in some wood and the winter jackets and accessories were still up in the closet. This did not stop us from having a little winter wonderland fun.
When Lincoln woke this morning, I told him to go open his curtains. “Okay mommy” and off he went across the room. He opened the curtains and lifted the blinds to a white wintry scene. Both his hands dramatically lifted to his mouth and I heard the sweetest gasp of delight. I wish I had it on video – I just hope I can remember that forever. There is something so amazing and special about a child’s experience through this life. I’m so grateful to have such wonderful children to watch grow.

Speaking of grateful – Thanksgiving is one of my most favorite times of year. It usually comes with family, food, and friends. This year it also came with steroids. We survived nonetheless and even though things were a bit more “touchy” in our home, we still had time to feast on a turkey with some family. We some how missed that special moment of “giving Thanks” that evening since children (steroids or not) can get in the way. We have made up for our Thankfulness at other dinners with Maya and Lincoln. Maya continues to impress us with the humble things she is grateful for and Lincoln….well lets just say he LOVES applesauce about as much as anything.
As for me…I am thankful for modern medicine that is saving my child’s life – and other lives of course. I am thankful for a flexible job and family so that I can continue to work, help others, and help support our family. I am thankful for the strength I have come to know burning deep in my soul; strength that I once dreamed I could have one day. I am thankful for all of our support. I am grateful for all of you. We have said it before and we will say it until the end of time, we would not be as strong or as calm with out you all. Your prayers, thoughts, love, light lift us when we feel like we cannot take any more. When we don’t want to give Maya another dose of Decadron. When we see her liver enzymes raising and her ANC elevated though she is supposed to be suppressed. This “easy” part has been more difficult than I think most of the professional’s think is it. Maya’s labs actually look “pretty good”….except we want an ANC of 1000 not the 2500 that it is now. Her liver enzymes are indeed elevated likely from the chronic use of 6MP and weekly methotrexate. If her ANC is over 1500 next month they’ll have to increase her 6MP…which will likely mean higher liver enzymes. It is all a balance and a dance that we don’t like. It feels like a jog then a sprint then when it looks like there is a park bench for us to sit on…it is just a mirage. This is why we need your prayers. For the nights when my mind and soul are silent. Not dark. Just silent. So thank you. Thank you, thank you, thank you.

And thank you to Scott. More than anything, I am thankful for Scott. This life, my life, would look a lot different than it does. I know it would feel more fragile and broken. Because of Scott, I am lifted and can recognize my abilities and can thrive. He doesn’t make me “whole” – he makes me the best version of myself.

We spent the better part of the morning playing in the snow this morning. We are happy to announce we now have a temporary yard mate named Olaf. Scott’s snowman making skills matched with my costuming have made for quite the back yard company. Maya and Lincoln are in love (especially Maya)…unfortunately when the sun comes out, you might all hear the tears of sadness no matter where you live. She can handle a 3/4 inch needle through her chest like nothing but the idea of the snowman melting – not okay.
Love to you all. Thank you for your….everything. There is no possible way for us to tell you what your support means. I’ll keep trying to find the words. Till then – enjoy some pictures.
Love is life.

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?”