The Heavy

As I type this, I am wracked with emotion...how many are there?

Exhausted....a deep, underground, boiling up to the surface kind of bone-a** tired. I attribute it at the moment to the "workers" pouring cement right outside our window (this started at 5:15 am). A bellowing people-slaying dragon-like noise. Hurts my brain. Many things hurt my brain these days. Fluorescent lights. IV beeps. The sweet sound of the babbling brook on Jill's "sleepy machine", which I have, of late, had to turn up so loud it sounds like a raging river (and freaks nurses new to us out every time they enter the room "Oh my god...I thought your oxygen was turned up extra high!"). Perfumes. Cologne. I would love to know why people bathe in scent on top of scent on top of scent. We all have our own natural wonderful distinctive smell....why mask it with flowers or musk or whatever-the-hell-other manufactured chemical is popular these days? I apologize for the rant but I try not to tread on others' space while out in the world and I feel like my space is slammed against a wall when I'm working out at the gym and some lady gets on the machine next to me smelling like the toxic rip away leaflet from Cosmo magazine....cough, cough....guess I'll be moving now.....

Relieved. Jill's appetite is back! She ate like a teenage boy on steroids today. She has gobs and gobs of energy (much thanks to the unnamed donor whose blood infused Jill with a renewed sense of purpose on Monday....maybe that's what I need....a bag of blood should wake me right up....can you overdose on that sort of thing?). She spent the day zooming up & down the hallway, learned how to (almost) pedal a tricycle, did some chalk art with Monica (the artist volunteer who comes on Mondays), dressed-up, made some pineapple-meatball-pizza concoction in her toy kitchen, got her nails done by CiCi (nurses' aide and best friend), played soccer, basketball, and climbed 4 flights of stairs twice with the P.T. (she qualified for 2x/wk with the goal of maintaining gross-motor skills).

Angry (morfs into Frustrated, morfs into Accepting....begrudgingly accepting). Jill's doctor came to break the news this evening that Jill's stool sample came back positive for C-Dif, a nasty infection of the colon caused by too many antibiotics (the antibiotics kill bad & good bacteria....the good bacteria that normally fights off this infection when you have a normal WBC count and are NOT on gobs of AB's has been compromised, opening her up to this...many kids in her situation get it....not life-threatening, just extremely annoying). She will be forced to swallow yet another antibiotic (this one will directly target the C-Dif) every 6 hours (it's no fun being wrenched out of a peaceful sleep to have your mom squirt that nasty junk down your throat..."It's okay baby, you can go back to sleep..." Oh, okay, mom....I'll be doing that with no problem...and no hard feelings...hmmmph). After 10 days on this drug, her stool will again be tested. She needs 3 negative tests in a row to be "cleared" to come out of isolation. Isolation means she is confined to her own room. She is no longer allowed to leave to play in the playroom or in the hallway. We are no longer allowed to leave to go to the kitchen, the soda machine, the cafeteria, as we are at risk of spreading Jill's infection to other immuno-compromised individuals throughout the hospital (it is apparently extremely contagious to those who are not able to fight it). Nurses and anyone intending to enter our room and do anything but march straight back out the double doors (after some vigorous hand-washing), must "gown and glove" on entering. Really, it's a poop thing, and as Matt & I--and nurses on night shift--are the only ones changing her diaper, and we are very careful not to get it on our hands anyway--wouldn't YOU be?--and are vigorous hand-washers, and you have plenty of WBC's, there is very little risk to you, our friendly visitor, of catching the bug, so don't read this as a "stay away" notice---much to the contrary---help me entertain this toddler please!!!! is more what I'm trying to say. Leave the kids at home---I hate that, but it's just safer for everyone, all around. Man, she's gonna need a lot of group hugs from her toddler peers when this is all said and done.

And Sad. So Very Sad. We just found out today that one of our own (child with AML) passed away. She was being discharged from the hospital, at the end of her 6 months of chemo, the day we were being admitted. I met her mom through a friend. She was so excited to be going home that day, but sad for us....and very obviously supportive and willing to be of any assistance she could...where to get good food, how to sleep more comfortably in our new "home". We were devastated to be sharing a room with her daughter 2 weeks later, when she came back with a tumor. The cancer had returned and manifested itself as this ugly unforgiving monster, taking over this sweet girl's entire body....one thing after another went wrong....she passed away on Thursday after the longest fight of her family's life. She was 17. I want so much to attend her funeral. It's on Saturday. I can't do it. Saturday is Jill's Birthday. To be attending the funeral of someone that shared the same awful disease as my baby on what could be (don't say that!) her last birthday (how terrible is it to THINK that???), would just absolutely kill me. I can't imagine what her family is going through right now, and hope against hope I never have to. The reality of this disease is horrific. Keeping myself distracted with bone marrow drives, close contact with friends, keeping Anna involved in school/friends/activities, cleaning my house, scribbling thank-yous and booking interviews with local media (a reporter from CBS is coming to the hospital on Friday to interview us for a news story to promote the blood drive our babysitter put together)....all of these things are simply ways for me to push the reality of what could happen to my baby into the background. But today, I gazed at her so much, with pangs of deep sorrow in my heart for the friend whom cancer took. I saw Jilli disappear....fade into her songs and her dances....evaporate into a memory of a girl with ceaseless energy and unbreakable spirit. I don't want her to be a lovely memory. I don't want to be thinking like this. I will start my moment-to-moment mantra again. Because what other choice is there? Jill needs us to believe.

So I do. Not as firmly as I did yesterday. But I do.

The strength of that collective belief in all of us, in her, will give the status of "memory" to this tiny schnibble of time that made believers of us all.