Friday, April 11, 2014

Week update.

The living room is cozy-dark as I sip my coffee and wait for the sun to decide that it is, indeed, morning. Watts is already on the move and I know that it will take me hours (and 2 cups of coffee) to catch up to his energy level.

It is the end of another (work) week and once again I am befuddled at how days can be so long and yet fly by so quickly. The weekend will be one spent entirely outside hopefully-- I am so thankful for spring and all of its hopeful beauty.

Watts is trucking along in treatment. His counts were still in a good range on Wednesday so we trekked to Brenner again yesterday for his IV Methotrexate and weekly appointment. He has one more week of 6-mp and then we are scheduled to admit next Thursday. We've asked to push back the admission three days until Monday, though, since Easter week is crazy in the church world and Michael will be tied up completely. So, Monday, April 21st, will be our last scheduled hospital stay! This is both exciting and terrifying.

Watts' appetite seems to be possibly-maybe-sort of-slowly improving this week. He has eaten a few bites of pasta, some guacamole and some bagel. His nausea has still been a problem (oddly enough since his appetite during the day is improving), though, and he's thrown up four out of the last five nights after we have given him his nightly oral chemo. And that is even with the maximum dose of Zofran (anti-nausea med) and a dose of Benadryl (for break-through nausea). We are using the NG tube for about 75% of his nutritional needs at this point and have even had to put fluids down it on a couple days.

With the nausea, of course, comes a lot of nights of broken sleep. Watts has been waking up around four times a night and his morning wake-up time has been between 4:30am and 5:30am. Ugh. With his erratic sleep schedule combined with Piper's sleep terrors and desire to co-sleep, Michael and I are walking zombies.

All of this sleeplessness and nutrition-stress is put into perspective, though, after spending any amount of time with Gideon Watts. He is hilarious, affectionate, and a true trooper dealing with all of these crazy treatments. It is amazing (and sad) to realize that he has had cancer and been in treatment for more than half of his life. A world of needles and doctors and feeling yucky is the norm for him. [Side-note: He knows all of the steps at our clinic appointments and will lead the way through getting vitals, stepping on the scale and holding his head still to get his height. With the doctor, he grabs the stethoscope and puts it first on his heart and then moves it, unprompted, to his belly and turns his head to show his ears when the doctor grabs the otoscope and then opens his mouth and sticks out his tongue. The tears start when we mask up to access his port and he starts cheering as soon as the nurse de-accesses him.]

What an amazing little warrior!

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