Saturday, June 7, 2014

A little update (finally).

Whew, it's been awhile since I've really updated! Life is busy these days with all kinds of gloriously normal things like play dough and painting and morning walks and refereeing the “loving” between an almost 2 yr old and almost 4 yr old. We also were just able to take a trip to the beach-- our first non-hospital trip for our little family of four! It was wonderful and exhausting, of course. No book reading or laying out when you have little ones:) Pictures to come.

Maintenance has been good to us so far. Watts’ counts are where they should be (mild neutropenia) and other than getting an IVIG transfusion last week, he hasn't had any other necessary transfusions or extra time at Brenner. On Tuesday, Watts is scheduled to go to Brenner for another lumbar puncture and IV chemo and he will start back on steroids.

Other updates:

-Watts is finally sleeping better at night. Hallelujah! One or two wake ups at night is much more doable (particularly after a year of him sleeping like newborn) and very good for my sanity.

-Developmentally, Watts is doing great. He is saying new words each day and physically is a wild man and constantly climbing (on everything everywhere!) and running. Each milestone amazes me. Some new words and phrases that he has been saying lately: "I did it!" "Go, dog, go!" "I don't know." "Did-e-on Atts (Gideon Watts)." And, of course, "Papa, Papa, Papa, Papa, Papa, Paaaaaapaaaaa!"

-Food-wise, Watts is having a hard time wanting to eat now that he is back on 6-mp (the chemo drug he takes daily). Almost every bite has to be coerced into his mouth, poor boy. We are going to wait till Tuesday and then reevaluate with our team whether we should put the NG tube back in or possibly start him on an appetite stimulate. Obviously we would love to stay tube-free, but it is also incredibly stressful trying to get calories in a headstrong toddler with absolutely no appetite.

-Watts' chronic cough lingers on. Despite having the NG tube out for several weeks now, Watts can not seem to shake his rattly cough and nasal discharge. Some weeks it'll seem to get better and then it will come back with a vengeance. I have read that some Infant ALL babies have these coughs till they are off-treatment but I would love for that not to be the case for Watts.

-Some of Watts' favorite things to do right now are to climb up on top of furniture, play with a bucket of water outside, play in the sandbox and put sand on his head, run around naked after a bath, run away from me at a store (or a park, on a sidewalk, or anywhere really), "race" with sister around the house, and play on any electronic device. Sounds like a normal almost two year! Praise the Lord. And I need some help learning how to discipline a wild baby man going through cancer treatment... Anyone?

As for Piper, she is her usual extroverted, creative, winsome, delightful self and fills our days with laughter, dramatic role assignments, and a whole lot of Lightening McQueen. Gone are the princess days and hello to a little red race car. We don't quite understand the obsession since she's only seen the movie twice, but we are trying to just go with it. If you hear Piper ask for Doc at church one Sunday, that would be me. Michael is Mater and Watts is Luigi 99% of the time.

As for myself, in these so-close-to normal days filled with such normal activities and seemingly normal healthy kids, my heart is a discombobulated slew of thankfulness, weariness, joy, and reoccurring cold fear that pops up during quiet moments. Darn cancer. It is still a dark cloud overhead, if I’m being honest. I am grateful to have made it this far in treatment and am savoring all these outpatient days, but Michael and I are truly just now catching our breath after a whirlwind year and are always cognizant of the fact that this journey isn’t over yet. This season is nerve-wrecking to a mama's heart, but there's good in it too, I think. I am having to learn once again how to grapple with my fears and to not have them control my days; to leave my tomorrows and their worries in the future, and to stay present in today. I am thankful for a God who is big enough to handle all my fears and who had promised to walk beside me. I know this to be true: He has been faithful to me and my family every step of the way.

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