Round Two

We headed back to the clinic today to begin Lois's second round of chemotherapy. I had a good attitude as we walked out the door - although it was hanging by a thread. Jay's good attitude, oddly enough, got left on the kitchen table with the mini oreos. Finding a spot in the parking garage seemed to push his cheese to the very edge of his cracker. The best thing about my marriage - and perhaps this is true of every marriage - is that when I'm teetering on the brink of hysteria, my strong, clear minded husband is always there to put me back on solid ground. And of course, those rare moments when my sweet husband starts to lose it, I am happy to return the favor. Although this morning, I don't know if it was me and my outwardly calm demeanor or the greasy pork filled breakfast sandwich that set him straight.

We started our day in the clinic where they accessed her port and drew blood to make sure she had a sufficient immune system. Results came back quickly and we were cleared for take off. And the waiting began. Lois sat on the exam table and ate her egg and cheese biscuit while she dismantled my wallet. It's one of her favorite activities. I wish I could say the same. Receipts, insurance cards, gift cards, credit cards and money (is there anything dirtier? ew!) all get pulled out and put back fifty times over. She finally tired of the activity and I ran over to help clean up and reorganize. Lois decided to readjust her fanny to have a better view of my antics and fell off the side of the exam table onto the floor. The crack of her head hitting that floor will haunt my dreams tonight. She was fine. But the wild rumpus got the attention of several medical professionals who I'm sure spent the rest of the afternoon questioning exactly what kind of parent would allow such a travesty to befall their toddler. Their toddler with cancer.

Mommy guilt is the worst.

I proudly wore my new "leukemia SUCKS" shirt to the hospital today. It's my little passive aggressive protest at my child's recent run of bad luck. Jay got one too. Lois's is slightly more PC. "I'm a Fighter." How cute is that? But my snarky T-shirts were upstaged by a two year old who had sashayed through the hospital the day before wearing a "F*ck Cancer" shirt. Yes, the asterisk was there on the shirt, but I still don't think YaYa would approve.

At 5pm the chemo finally started rolling. This infusion is the oddball in Lois's 6 month course of treatment. Last month she had 96 hours of chemo where the drug ran continuously for the whole 96 hours. This month, her treatment is done in 2 equal parts. 48 hours this weekend and 48 hours next weekend. That's oddity number 1. The second bit of weirdness is that this time, the drugs are administered in 3 hour bursts. Two 3 hour bursts the first day, and two three hour bursts the second day. The final difference? The dosage is MUCH higher this time. And when I say MUCH higher, I mean MUCH higher. Last time she had 6 mg of Ara-C administered every 24 hours. This time she's getting 200mg administered over 24 hours

( in two 3 hour bursts of 100mg). Are you confused yet?

She's getting the maximum dosage of this nasty drug. And I sit here typing, my stomach is in knots wondering just what that will do to her tiny little body. She gets the anti nausea medication Zofran every 6 hours and Ativan every 12. So every time they hang a new bag of chemo, she'll have ativan right before it. I hope it helps.

I can handle Lois being droopy. Sleepy. Generally rather lifeless. I've seen it a lot lately. But violently ill? It's just not something I want to see. You get that, right? Are you with me on this?

I'm at home tonight with the epileptic dog who has picked the absolute worst time to start having a string of breakthrough seizures. Going to have to squeeze in a trip to the vet this week since during next weekend's infusion, the Yaya will be here with Mac and she's vowed she will run screaming from the house if she witnesses poor Humphrey have a seizure.

I do hope she'll take Mac with her.

I had the most blissful week with my daughter. Since Mac was hanging with the Yaya and Pops in Pennsylvania, it was just me and my girl this week and we lived it up! We had lunch with friends. We went shopping. We watched movies and ate oreos together on the couch. I plan to hold onto those moments during the next two weeks when my girl is a droopy dog again. It has bolstered my resolve to see Lois glowing with good health. I know this will knock her down, but I also know she'll be back.

I am finding my way, friends. I'm leaving that anger behind and moving forward to a place where I can marvel at the courage and strength of a little girl who I was told wouldn't survive at 13 weeks gestation. She fought her way here. And she will fight her way through this ordeal. We met with a few new faces at the oncology clinic today - and before we left one of our nurses popped to tell us that she's never met a child who captivates people as much as Lois does. She told us that doctors and nurses alike leave our room talking and smiling about my sweet butter bean. She's a charmer.

Recently, a member of the Virginia House of Delegates was quoted in the press as saying that handicapped children were a punishment from God.

I know. Go ahead a say a curse word. You'll feel better.

I'll wait.

In fairness to this man, I don't think that's the message he really intended to send. He was mixing some recent medical research and his own religious beliefs and what came out didn't sound very good. Google " Delegate Bob Marshall" if you're super interested. I don't know his politics and I can't say I share his religious beliefs, but I do know that Lois isn't a punishment. If anything, Jay and I like to think of her as a reward.

We must be living right.

There are 6 pediatric oncologists in the practice at VCU. Since we lived at that darn hospital for 3 weeks, we've had experience with 4 of the 6. Today we met #5 and I am in love. Do you remember Chris Kattan as "Mango" on Saturday Night Live? That's #5.

I kid you not.

So Mango and I shared an elevator ride this evening as I headed home from the hospital. He said some nice things about Lois (how could he not?) and then hypothesized that Jay and I must be special people to have been given a child like Lois.

My friends in the DS community are gagging right now. You can imagine, we hear that a lot. And I think all of us agree that we were all just ordinary couples whose cells needed some remedial work in mitosis. We weren't chosen because of any special abilities we do or do not possess. We are just the lucky ones who get to live life with a very special person and as a result, have very special families.

Oh no, this kid aint no punishment.

And now, to answer some frequently asked questions about Lois's follicles:

No, Lois's hair still has not fallen out.

Yes, it most definitely should have by now.

Yes, I'm sure that all of my complaining convinced the cosmos that it needed to stick around.

Yes, it has undergone some changes. It's texture is completely different. Rather soft and thinner.

No, I still don't care if it falls out - but I'm happy it's still there. She'll LOOK sick if she has no hair.

My list of thank yous grows by the day and I hate to even start writing names here on the blog because I know I'll leave someone out which will make me lose sleep at night.

I would have been a great Catholic. I have lots of guilt.

But in the forefront of my mind tonight is Jay's cousin who brought us dinner out of the blue this week - and it was yummy. Lois's teachers, Rosie and Myrna, who's hearts seem to be aching as much as mine. What more could a parent want than to have a teacher who loves your child like one of their own? They visited Lois this week and brought her a gen-u-ine Raggedy Ann doll. I'm never letting Lois play with it. It's a treasure. My dear friend Wilma, who I affectionately call Mother Inferior, sent a card with quite a gift inside. It was so appreciated Wilma. I hope we'll be seeing you soon. My new friend Kim (who is actually Beth's friend Kim, but I'm claiming her for my own) gave me a massage this week. On the house. Free of charge. And I was a massage virgin. Never had one before. And now I feel it needs to be part of a monthly self-care regimen that includes pedicures, dunkin donuts, and yarn shopping. It was decadent. Soul soothing. And my new friend Kim (back off Beth, she's MINE!) "gets" it. She's walked my road. And she graciously gave of her time to help me ease the tension in my shoulders and my mind. Thanks Kim.

Our meal delivery schedule got all diddled up when Lois's chemo was postponed last week. I redid the calendars on Butter Beans Brigade and at last check there was still one night available. I've also added the dates for Lois's 3rd infusion - but please know that if Lois's neutrophils don't cooperate, those dates may need to be changed as well. I can't begin to tell you how much your home cooking is appreciated around here. I love it that I don't have the added stress of worrying about getting dinner on the table, and Jay loves it that there aren't 16 pans and 42 miscellaneous cooking implements to be loaded into the dishwasher every night. I'm a messy cook. Poor Jay.

I'm thinking I may put together a little cookbook with the recipes for all of the meals you made for us. If you think of it, will you include a recipe when you make your drop off? One of these years I'm going to find some free time and I'll need a project like this to work on. Or maybe I should finish the baby quilt I made for my friend Nikki's son before he heads to elementary school? Hmmmm.

Jay IMd me to say that Lois's first three hour infusion is over and she's sleeping soundly. Of course, fifteen minutes after we chatted the nurses were scheduled to arrive with the eye drops Lois has to have every 4 hours to prevent chemical pink eye.

Don't ask. You don't even want to know.

Expect an update tomorrow - I'll try not to disappoint.