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Thankful for Snow Days

November 28, 2016  (Sara)

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.

One, Two, Three

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 🙂

The Last & Longest Phase

Nov. 12, 2016 326pm (Scott)

Since we began Maintenance at the end of October I’ve been searching for perspective on just how long these new routines will be in our lives. The final phase of treatment lasts eighteen months; Maya’s end date for chemotherapy is April 21, 2018.

Every evening from now till then we will give her one ml of 6-mercaptopurine; every seventh day five and a half tablets of methotrexate; every weekend four doses of bactrim; every thirty days a regimen of steroids over 120 hours; and once a month a lumbar puncture with intrathecal chemo. Just that, ring a bell, and we’re done. There is, of course, what comes next? But I think I’ll save that for the spring time.

Through the first eighteen months of her life Maya did quite a lot, as a busy-bodied first-born will tend to do. She sat up at 4 months, noticed she had a dog at 5, ate avocado at 6 months, and said Dada at 7. She crawled up the stairs at 9 months, danced with Mommy at 10, and on November 11th 2013 at just under 11 months she walked across an entire room (I have the video to prove it). At 15 months she had 75 words, at 16 she said Go Dodgers! (good girl!) and counted to ten, and by 18 months she had figured out singular vs plural. Over that short period of time she was also able to surgically unravel the finely tuned sleep patterns Sara and I had worked decades to perfect.

So we find ourselves together at the start of another very formative eighteen months of Maya’s life. I like to imagine what she’ll be like at nearly five and a half years old!

Our maintenance routines are developing well; it looks like we asked enough questions and spent enough time brainstorming to find the timing that will fit all these new requirements into our family life. Maya has been consistently spreading her wings with playdates and even a visit to the theatre to see WNMTC’s production of The Little Mermaid. Thank you Stephanie and WNMTC for making a dress rehearsal as magical as the real thing.

There are still daily challenges with constant worries about fever and constipation. Maya experiences tingling and pain in her extremities which is a common side effect of vincristine and probably some of the other drugs; this is especially troublesome at night and often wakes her up. There are times every other day or so where it’s clear she just doesn’t feel good–fortunately all it usually takes is a movie and some snuggling on the couch to work through it, and her energy returns later on.

Overall our little dragon is handling all of this as well as anyone could hope. She’s focused on growing up, being a kid (actually a threenager), learning, and having fun with her family–especially her best little buddy, Lincoln.

Thank you, Everyone, for your continued care, support, and love. Eighteen months is a long time, but it seems like we got here in the blink of an eye. Our world has changed and will continue to evolve; may we all remember to let kindness and love take the lead. It is what’s brought us this far. It is the only thing that will take us further.