Friday, March 21, 2014


Yesterday and today went so much the mental sense. Physically was so-so. Grace's platelets were very low again, 9K, her lowest yet, so she had a platelet transfusion (we call it yellow blood) even though she had a full blood transfusion (nicknamed red blood because we're creative) a week ago.

She's been taken off her 6mp and her AraC for the week until we meet with her doctor on Monday. Monday is scheduled to be an eight-hour treatment, which ends up being a twelve hour day with travel time and waiting. Four hours of fluids, a two minute "push" of medicine, and then four more hours of fluids. If you want to see a preschooler do the potty dance crazy often, that's the day for it. They have to keep her massively hydrated so that the chemo doesn't hurt her kidneys. But that might all get canceled if her counts are down. So we're praying they're up. I'm not a fan of chemo but not getting chemo is worse.

Yesterday we also started a direct rewards program for the kids. On days that Grace gets her 'bumble bee" she gets to pick a toy in advance from my bag of awesome but sadly discontinued Palace Pets.  We told her, "the Palace Pet has been trapped in a box and the only way to save it is an act of courage"...such as accessing her port. She gets to hold the toy as she's accessed and can open it immediately after. This worked like magic last Thursday. Her tension levels were down before accessing and she hardly cried during. And her brother gets a Imaginext toy for being great with a Grandma on those same days. I'm not really into the accumulation of tons of toys but we're going for it. The Palace Pet worked like magic and should there be any bad side effects of our system, we'll deal with that later.

Typically the day after the hospital is horrible. I think because of all the prayer, the new "Love and Logic" CDs I've been listening to, and the naps, that today was actually pretty good. We're still living with Grandma this week. When we bought our house a year ago the carpet was already old and with her brother's pooping habits, the carpet has become the hideout for germs and God knows what else. Poop apparently. So we're taking it all out and tiling the whole house with wood-look-tile. The very stuff that you can mop down with bleach. So while that's being worked on, we're living with Grandma (Chad's mom) and hanging with Noni (my mom).

Today Grace was worn out. It's likely we've been partying too much here at Grandmas (she's been hitting the apple juice pretty hard) but she took a good nap and had a smile by the end of the day.

I also got a short nap, which was a true gift from God. As Grace napped next to me I realized that I am struggling to feel. It's something that I was working on in therapy for two months before leukemia hit. When life is moving this quickly, and when I'm stretched this thin, and the kids are fighting, and I'm learning the names and schedules of her medicine routines, and Grace is scared, and I'm so tired that I can't spell her name at the doctors properly...I turn off my feelings. I just do and don't feel. It's almost like automatic pilot or watching a movie on mute.

When Grace was first diagnosed all I did was feel. And it didn't feel good. I empathize with addicts. They drink to stop feeling and when they quit the bottle and feel again for the first time in sometimes years and its too painful...I know that feeling. So I slowly stopped feeling again.

Today as Grace napped next to me, I dared to feel. And it felt good. I  just watched her breathe. I'm going to try to feel again, as much as I can. It's so painful sometimes, even the good times sometimes hurt, but I want the inner-most-me to share in life as it is now, when I can. My therapist said that I need to also give myself permission to also shut off as needed so I can survive. So it's a balance. But today I felt. I felt the breezes and Grace's soft skin and even just tried to taste my food more. To slow down enough to make sure I was experiencing what was going on around me.

Especially when life feels so unpredictable for us, I want to make sure that I am fully part of my kid's lives, and feeling the joys as they come, as simple as they may be.


  1. As a therapist myself, I also think it's okay to give yourself periods of "feel" and "not feel". I have a wonderful drinking glass at my office. It has an etched line half way up, and the words, "This glass is half empty". I use it as an object lesson, telling clients, "The optimist sees the glass half-full; the pessimist sees the glass half-empty. The person of faith says, 'It doesn't matter - I know Who holds the pitcher.'" That thought gives me permission to have half-empty days. I know Who holds the pitcher.

  2. I had a hard time feeling through Nick's treatment. I still don't completely remember most of it. I did take photos though when I got enough courage. I weep over those photos at how desperate the situation was at the time. I feel it now when I look back on them. But I must say that at times ignorance is bliss. I don't think I could have functioned as well during those inpatient weeks on end, somewhere around 176 days, I think. You are in my prayers. Blessing to you.