You know that feeling when you reach the top of the track on a roller coaster? The anticipation of the drop is intense. And then you drop. Your stomach suddenly seems to have found a new home in the back of your throat and you want to scream but you're worried you might throw up on yourself. The drop seems to go on forever and you can't wait for the moment you begin to ascend again so that everything can move back into it's proper place. But the switch from plummet to climb is so quick that your stomach ends up in your toes, and what's left of your functioning brain feels like it's operating somewhere around your knees. And then you realize; you're not on a roller coaster. This is life. I feel like my emotions flicker by as quickly as pages from a flip book (remember those?). Rage, fear, sadness, anger, hope, numbness. It's dizzying and terrible. I know that I can't fall too deeply into any one of those feelings because of how easy it is to get lost in there. So I try to breathe as they was over me, noticing my throat clench, where weakness hits, the bouyancy of hope, my gut loosen with fear. And I breathe. One of the things that keeps me from unraveling in this environment is the concept of paying it forward. I don't have many opportunities or abundant means to make a big impression, but I try to grab opportunities. I've mentally located where homeless people have claimed as "home" and when I'm out on walks I make a point a couple time a week to swing by and drop something off with them. Or introducing myself to the new families on the unit and making a connection. It's an interesting phenomena that many of the families don't seek out a connection with one another (probably because this is such an isolating experience), but when you reach out to them you experience this wave of relief radiating off of them. A sense that there is someone else who gets how intensely horrible it is to watch your child go through this unthinkable experience. If we have extra things that Tessa doesn't necessary play with I try to pass it on to another child on the unit. Sharing goodies with the nurses. Little gifts for the housekeepers who work so hard. They are all relatively insignificant things, but they serve to help me feel connected to the undercurrent of life and hope that reaches us all in some way. I also check my email 10 times a day hoping for some message to make me feel less alone.
Tessa's rash is still pretty brutal, but the topical steroids seem to be taking some of the swelling and reddness down a little. We are lathering her up with the creams and having her rotate her position as her the spot where you are likely to find her, lounging in bed on her rump, has left said rump quite irritated. So we lube up her back and buns and she'll lay on her tummy, or we'll lather up one hip and have her lie on her side. It's a bit of a one man game of musical contortion, trying to get all her little parts a break.
The good news of the day is that Tessa's counts hit .4, which is great. I nurse also confided in me that you kind of want the patient to get a little GVH because it means that the cells are in there, doing there work. Uncle Erik also sent me a good reminder today that another benefit to GVH is that if there are any cancer cells or mutated cells left somehow after chemo, the white cells going on the attack have a good chance of attacking cells you don't want around anyway. The hope is that if they are able to shut this GVH response down quickly she won't be afflicted with a chronic GVH condition (which would be a nightmare). Have hope that she will continue to be the warrior she is and that tomorrow will bring more good news.
The docs gave her some Ativan (an anti-anxiety med that she's been on before with mixed results) to see if it would have an effect on her agitation (due to being so freakin uncomfortable and locked in a room for the last 3.5 weeks) and possibly her itching. Instead it turned her into a 16 year old girl with a bad case of PMS, the stage where everything seems hopeless and you weep at hallmark commercials? Yeah. That stage. She was an emotion mess this afternoon, crying over everything, super needy, bad case of the "nobody loves me's". Hard not to feel bad for the husband in such situations. Love you Casey!
Here is daddy supporting Tessa during her emotional afternoon. Such a good daddy. Tessa loves her daddy so much, and it's easy to see why. He really is an amazing father. I am grateful that we get to raise this girl together!
Here is Tessa wearing her new SUPER soft shirt from Sarah, Brian, Jacob and William Riley. We love you guys! Jacob's painting is up on our wall of love. We miss our friends, but Sarah you are so wonderful at sending messages and notes. I want you to know that I am grateful for each one.
Ahhhhh. Yes. Well I wanted to get a picture in of my good side... Just love Tessa's little face leaning on my knee as I lean over to (bleep-adee-bleep) her sweet bottom. She still spends lots of time on the commode, but honestly if she's not on the crapper sbe's in the bed. Casey and I are starting to wonder if she just wants to look at her room from a different perspective.
Thank you all for the gifts you been sending. It helps keep the monotony at bay and gives Tessa something to look forward to. It has been the kindness of spirit and generosity of people in our community that keeps me looking out for the pay it forward opportunities. I am continued to be awed by people who have risen to support us, and it has inspired me to try and be more aware. Thank you for the gift of looking outward.
Looking forward to another day on the tracks! Love to you all and your families!
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