The First 60 Days…

8 Sep

First post in a week but I think that’s good – it must mean this is starting to seem like a new normal for us. In general our days, while varied, have been blurring together. With the exception of our appointments at the clinic, I rarely have an awareness of what day it is. This has also been surprisingly wonderful family time and Lenox’s spirits (and blood counts)  have been up. These weeks have been filled with juxtapositions – relaxing but stressful; lazy but full; rested but exhausting; full of fun and laughter while laced with sadness; happiness but some anger and frustration; etc.  Overall I feel so blessed to have these days with Lenox and Liz!

Because of the high temps here in Austin (every day since her diagnosis has been above 100 degrees – ugh!) and with her sun sensitivity from the medicines, we haven’t done much outside the house even with her great counts. The last few days have been our first glimpse of reduced temps, but as many of you know we are now having loads of haze and smoke from the wildfires burning all around Austin. It’s heartbreaking how many homes and families have been affected. The City has told residents we should stay inside today and avoid outdoor activities because of the particulates in the air. So one day soon, hopefully, we will get Lenox outdoors again.

As I may have mentioned previously Lenox has become quite nocturnal – who knows why – and so she stays up til about 11 or 12, and then sleeps til 10 or so; as we are constantly overseeing her, the whole family has become a nocturnal pack, much like the velocirators (Lenox) and owls (Liz and I – ever watchful, wise, protective, preening (Liz) … J)

This past weekend was the closest to normal we have had in awhile. Saturday we went to Gueros for tacos, drove around looking for Cows from the Cow Parade and played through the afternoon. Sunday we slept late, went to Central Market and the newly relocated Zingers (love that place!).

Lenox Slays the Leukemiasaurus: Clinic Visit was today and went smoothly. She wrapped up a week of steroids last night and today she got another dose of chemo (Vincristine); we go in for our second hospital visit on Tuesday. She talks more regularly and calmly about her doctors and procedures and will volunteer to you that “she takes Zofran in her  marshmallow cream.”  She still struggles with her medicines but recently a new phenomenon has occurred named “Lois the Super Slayer” who elicits in Lenox an urge to giggle, laugh, play, and take her medicine in the blink of an eye. We have always loved Lois so are not surprised that she has worked that same magic on Lenox.

Moms in the Margins:
Starting Monday I will get back into the work swing of things at least minimally – weekly executive team meetings, planning/retreat meetings, etc. Just a few hours a week but I feel like I need some presence back at the office and I very much want to support our ED and help however I can as we move into changes/a reorganization of the agency. Last Friday Liz had a “date” (pre-arranged by me, so no worries J) with some friends to get wings and play darts. Nice evening out!

Yesterday I tried my first support group for parents of kids with cancer – I left after just a few minutes but am not permanently turned off.  The flyer I had seen did not mention that there was a topic or speaker and when I got there they were talking about long term issues, legal rights, school processes when they aren’t working with your child, etc. Before she got started one of the families talked about how hard things were for their son (a 6 year ALL survivor) who has many  issues and they have really struggled with the schools. Hated to seem
like a wimp, but only 60 days into this I was just not up to hearing how hard or long lasting the fall out of all this will be. I can think about this Consolidation period through December and even through Maintenance for 2 ½ years and I can intellectually  grasp that there are long term effects, but hearing a family whose child had the same type of leukemia as Lenox talk about their son’s traumatic brain injury status from chemo was just more than I could swallow. Hope to try back again next month when I am more prepared for the topic they choose.

Shout Outs and Gratitude’s:

  • Thanks Soooo very much from Lenox to her cousins, CoCo and Shane, for the awesome care packages they have sent and especially the home made book! That was awesome and we can’t wait for your visit!
  • To Gigi for the great gifts from Scotland!
  • Thanks Christina for the wonderful date night for Liz – she had a blast with you and way to go on getting her back in darts!
  • Last but not least, to Lois our magic medicine woman thanks for all your visits!! Lenox loves you and will do anything for you!
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One Response to “The First 60 Days…”

  1. Debbie Hill Gilsdorf September 17, 2011 at 9:26 PM #

    Dear Brooke, in your spare time (ha ha) you could write a book. Seriously, you write beautifully. Lenox is very fortunate to have you and Liz as her parents. I enjoy reading about Lenox’s personality and her strength; she is an amazing little person. Once they find the cure for cancer, the race for the cure should be for depression. I pray for you, my friend. Thank God for the courage and strength to be “on” for our kids. Thank God for our incredibly supportive spouses. Thank God for our friends, so we know that we are not alone. I love you, Brooke. Big hugs to Liz and Lenox. You three are in our thoughts and prayers.

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