“Day 21” and Counting…

2 Aug

Lenox & the Leukemiasaurus: Well in many ways since last Wednesday’s chemotherapy these days are just blurring together (for Liz and I, but I imagine for Lenox too). Not one to sugar coat things, here is how she is. The effects of the chemo are cumulative so this last week seems to have hit Lenox harder than the prior weeks. She is clammy, listless, fussy and fatigued. At night she has night sweats and seems to sleep restlessly but for a long time. She eats all day still but seems to do so with less verve than previously – in some moments it seems to be like she feels compelled to eat against her own will. This has gone from us and others saying “it’s great she has a good appetite” to “OMG, there is no way that little body can hold so much food.” And it’s a feat – her body is stretching tight as it tries to hold it all and digest it. It’s like the steroids are intrinsically making her want to eat but she is full at the same time or is crying from a tummy ache. She will eat and eat and then say she is full and needs to lie down, but 20 minutes later she asks you to bring her more food.

I think at this point all her limited energy goes into eating and moving around from the sofa to the kitchen and the bathroom; mostly any movement to upstairs or back down, she asks to be carried. The few times in the last few days she has taken the steps on her own, she leans against the wall as she slowly ascends and is totally winded before she is done.  She even asks to be carried from the sofa to the kitchen bench and back. It’s heartbreaking to see her so sluggish and depleted. As you can imagine, it just seemed like this couldn’t be “normal”, right? But it is dead on – everything I have read and had confirmed by the nurses and doctor are that this is a textbook response this first stretch.  In one of the parents books I have, several of the parents talk about how totally panicked, distressed or horrified they felt watching their child eat this way and we totally relate. Her pudgy little cheeks are now stretched tight and wide, her eyes seem pulled to the side more, she has a little double chin, she struggles to right her round little body from a resting position and we had to go buy her some very big loose 5T dresses for her to relax in.  It is downright scary.  The guidance is to let her eat all she wants because in a few short weeks she will not only shed all that weight but her weight will probably veer the other way and she won’t eat anything.  But man it hurts for Liz and I to watch – it is like watching someone you love with an addiction keep using their drug of choice almost frenetically.

We have done a ton to try to pique her interest but to limited success. We really realize how badly she must be feeling because one of her favorite friends came by and not only did she not want to play, but she didn’t even have the energy to wave from the front door. We have even offered to take her to Target (the panacea for all woes for Lenox) and even for that she said “no thank you”. Lenox saying no to Target is like Liz saying no to sleep or me saying no to reading – it just doesn’t happen.  BUT tomorrow morning we are all going in the car to get CHIK FIL A!  Big event to go to the drive through so we can get “the little round hash browns” and lemonade. I imagine she will wake us at 6 am like Christmas morning for this – It actually had her giggly and excited!

All said – we are still (generally) a cup half full family so with the candid detail, also comes this – we know it could be so much worse and we know all these steroids are part of her body being able to win this!

 

The Moms (in the Margins): everyone has emphasized how important it is for Liz and I to take care of ourselves too and we appreciate the reminders. It is so easy to just want to sit here with her minute by minute and do no housework, errands or exercise and she does not want us out of her sight usually. But we are both supportive of each other trying to do those things. We tend to alternate days or parts of days for shopping, errands etc. Tuesday I did a fourth rowing lesson on Ladybird Lake and rowed a 4-man crew boat for several hours! Today Liz got to go for a good bike ride (thanks Deb for getting her out!) which was great. Since being home from the hospital, I have these somewhat manic spurts of energy (anywhere from 30 minutes to several hours) and during those bouts have finally cleared out the rest of the garage, done Goodwill runs, built new garage shelves and most impressive (yes, I am woman, hear me roar!) changed the water filter on the ice maker all by myself! The irony of my highs and lows J

To Come:  I imagine these remaining 8 days of the first month will continue to be much the same for Lenox – she is just about 75% of the way done with this tough first month. Yeah!! We have chemo again this Wednesday, then the following Tuesday (Aug 9th) is the big Day 29.  We learned that we will get the results back from those tests tentatively on Monday the 15th and they may start her new round of treatment the following day or so. I feel like we are just in limbo as we wait for that news – then we will know her risk group, and hopefully what her next month’s look like in terms of treatment, how much and when they will be inpatient or outpatient and even (hopefully) be able to anticipate her roughest days. I had anticipated going to back to work, at least part time, on August 15th, but it looks like it’s more realistically going to be the beginning of September before we have enough of a flow – and knowledge of her reactions and blood counts – to even go back part time. Liz and I are both very blessed that we had robust leave balances so we can be out quite a bit without worrying about leave without pay or not having insurance covered, and even more grateful that we both have awesome bosses and co-workers who are just being amazingly supportive and flexible. Thanks to Tim and Marva, Wayne, Paul and O’Brien, if you are all reading J – your support means so much to us!

Last note –I have created my first ever blog – and its rough especially the formatting J. The blog is Lenox Slays the Leukemiasaurus: https://lenoxslaystheleukemiasaurus.com/

Right now it is just the same postings that have been on Caring Bridge and will probably keep that up for a few more weeks or so. I would ask that all of you who have been following on Caring Bridge and had checked off to get email notices when we added journal updates, go to the blog and do the same so as we transition fully to the blog (more pics, video ability, links, etc.) we don’t miss sharing with you. At the very top right of the front page of the blog it lets you “Subscribe to Lenox’s Blog”. Please do! Also, for so many of our friends who we are most in touch with via Facebook, we created a Facebook page called Lenox Slays the Leukemiasaurus – you can either Like it by typing it into the Search and finding it that way or  by going to Liz or my Facebook page and finding it there.  

From our perspective the Care Calendar is working GREAT so thanks to all who have signed up and brought us meals. Especially with so much of our time going into feeding Lenox’s every culinary cc, the meals you bring are what keep Liz and I going. Thanks Becca and Laura for keeping this going so smoothly and making sure we are fed!

 

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One Response to ““Day 21” and Counting…”

  1. Ann Denton August 2, 2011 at 8:08 PM #

    Knowing this is heartbreaking for you, you are in my prayers.

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