Saturday, December 14, 2013

Life right now.

It has been a few weeks since our last hospital stay, the longest break since all of this started in May. It feels surreal to be home so long. Surreal and wonderful. Our hospital bins sit packed and ready just in case, but we aren't scheduled to go back for awhile. Side note: we miss our nurses a lot and wish we could still have them come by every evening. 

It has been interesting trying to figure out our new routine. Piper keeps asking when we are going to go back to the Ronald McDonald House and I keep grocery shopping for one meal at a time. We aren't going to the hospital as frequently, but are days still look pretty different than pre-cancer days. On our "to-do" list: give chemo at night, antibiotics on weekends, and hep-lock lines daily; get counts checked once a week at pediatrician's office and spend hours (and hours and hours sometimes) at Brenner once a week to get IV chemo, see Watts' doctors, and get dressing and caps changed. We avoid crowds, sick people, elevators, and generally all children. Thankfully he hasn't been severely neutropenic in the last month, so we have been able to get out and do more things together. I take him to church and let him crawl around in the back during the music portion of the service. We eat out sometimes in non-crowded restaurants after I sanitize the table and high chair. We go for walks but avoid parks. We go to the grocery store but travel farther to go to less busy ones.

Day by day we are getting the hang of it and figuring out what more outpatient cancer life looks like. And, day by day, we are reminded of just how blessed we are to be home. To be together. To have access to good healthcare. To have the support of so, so many friends and family. To have a God who has been so faithful and present each step of the way. This Christmas season is a sweet one for our family.

We spend a lot of hours waiting on lab results and doctors these days.
And boredom starts to set in...
And then silliness happens.

Usually instigated or encouraged by this girl. [Notice the goldfish in the hair.]


Brenner Santa. And also the first time either of my kids has sat on Santa's lap. Deprived, I tell ya. Someday perhaps I will have my act together;) Oh, and Piper would have NOTHING to do with the bearded man even though he was giving out legit. toys.
Outwitted, yet again, into taking a much needed nap after long appointments.

2 comments:

  1. She looks very comfy and cozy in that last picture. Glad to hear things are sweet in the Van Patter household. Miss you guys.

    ReplyDelete

 
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