One down....

I won't lie, friends. This day was tough. Jay and I held Lois in our arms and watched a syringe full of red liquid leech it's vile poison into our daughter's chest. We cried. We held her tight. But it was frankly a tad anticlimactic. No alarms sounded. The earth didn't shake. And steam did not shoot out of Lois's ears. Of course, Lois had been given a dose of anti nausea medication as well as a dose of Ativan. I thought the Ativan was to keep her calm and lobbied hard to get my own dose. But who knew? Ativan prevents nausea, too. I wonder if anyone told my friend Evelyn this while she was pregnant and sick as a dog??

So speaking of sick as a dog - that's how my girl spent her day. The initial dose of Ativan knocked her out and her first drops of chemotherapy were administered to a happily sleeping Lois nestled quite contentedly in her father's arms.

I sat and watched the stuff drip into her tubing and had to resist the urge to run across the room and rip it out of her chest. It feels so wrong - signing the order to allow the doctors to pump your child full of poison that will make her nauseous, give her diarrhea, make her hair fall out, and generally make her life miserable for six months. But my friend Megan- who recently had her own experience with chemotherapy - reminded me this morning that it is the chemo that will save her life. So I can't be angry at the chemo.


Darn. That ruined my plans for the day.

Lois slept for 2 hours but when she finally woke up, she was sick. Nothing was coming up, but she was shaky and crying and miserable. It was hard to watch. We propped her up in the crib and turned on Elmo and she managed to find a happy place for a few hours.




We think her port was bothering her more than anything else at this point. She was refusing to use her left arm, and when the nurse lifted it in the air to take her temperature, Lois went straight up and turned left. (I borrowed that little gem of an expression from my friend Wilma. It's a keeper.) Momma bear gets her claws out for the first time today and demands they give her something for pain. They came up with Tylenol. Tylenol? Really? That's all you get when they slice open your neck and implant a foreign object in your chest? I should have demanded percoset for her. And for me. As miserable as she was, I guarantee you I was more miserable.


As the day progressed she became more and more miserable until I was forced to get my claws out again and demand they give her more anti nausea medication. My new friend Heather warned me to ask for a dose for Lois every 6 hours, but the doctor's orders were for 8 hours in between doses. Those orders have changed and we are giving her Zofran every 6 hours now. It didn't take much convincing, really.

So in the middle of all that miserable-ness, this happened:


and this:

and this:

and somehow this happened to her hair:


Don't ask. I have no idea. As you well know from reading this blog, it has a mind of its own.

So what was the cause of all of this gaiety? Our friend Melissa appeared at our door today with her guitar and her bag full of fun. Melissa is a music therapist who helped me organize a therapy group for our Down Syndrome playgroup friends this summer. She's amazing and Lois LOVED music therapy because Lois LOVES music. Melissa works here at the hospital and I'm almost sure she made a special trip to the 7th floor to see my girl today.

Melissa stood at her crib with her guitar and sang to my girl for 20 minutes. And Lois sat up and smiled and played along. And when Melissa left she was back to the miserable girl she'd been all day.

Can you imagine how indebted I feel to Melissa for bringing a ray of sunshine into our lives on such a dark day? Watching Lois suffer is.......there are no words to describe it. It hurts. And for 20 minutes today neither Lois nor I were hurting. Thank you, Melissa.

Our friend Kelly stopped by today with Jamocha shakes for Jay and I, but her visit came at such a rotten time that it ended up being not much of a visit. Lois was at her most miserable and there were 2 nurses trying to get blood out of her port and not having much luck, and Jay was talking to my sister about things that I needed to handle and I'm not sure, but there may have been steam coming out of my ears at that point. I didn't need a dose of Ativan at that moment, I needed an Ativan salt lick in the corner. Sorry, Kelly. To spend half an hour navigating the parking deck and hallways of this hospital for so little reward makes me sad.

Margarette, the YaYa tells me you've been cooking dinner for them every night and watching my fat boy while the Yaya goes to her doctor's appointments. I will be eternally grateful to you for taking care of both of them. Thank you.

One day down. Three to go.