Anything for Lois

When I woke up this morning I noticed a very large curly white hair lying on my pillow. The curls made it doubtful it belonged to anyone other than yours truly. I'm not sure at what age the Yaya started to go white, but I have the feeling it's right around the age I am now. In the past 8 months, the number of white hairs I'm noticing has increased exponentially. And it's no wonder, is it? First I had an infant who periodically forgets how to sleep and spends hours wailing and screaming and making me incontinent. And now I have a child with a life threatening illness whose cure is seemingly worse than the illness itself.

In fact, more and more it seems that our lives are completely out of our control - and as someone who is a planner and organizer and, dare I say it, a bit of a control freak - I'm frankly unamused. Lois got a sniffle three weeks ago. That has turned into 3 weeks of coughing and stuffiness for Jay, a double ear infection and bronchitis for Mac, IV antibiotics and a juicy cough for Lois. And poor Momma was the last to get it, but my chest is now full of yuck and my forehead could be flashing "Caution: Contents Under Pressure." So Jay is physically in the hospital, but he's barricaded in a conference room attending a meeting via headphones and laptop. And although I'm in a hospital, to get someone to listen to my lungs and prescribe me an antibiotic, I'll need to leave the hospital. (There's always the emergency room, but frankly, I'm afraid of what I might witness. The McDonalds is scary enough.) Got to stay here with Lois. The doctor will have to wait.

And I'd really like to see this fat little bundle of smiles:


Our plan was for Jay to leave Charlottesville yesterday after work and meet Pops in Haymarket, to pick up the Yaya and Mac. But then I got sick, and I don't want to expose the Yaya - who's immune system went on vacation in 1999 and still hasn't returned - to my germs. So I called off the pick up. Pops leaves tomorrow for Spokane (or is it Charlotte?) on business, so he can't bring Yaya halfway to meet Jay until he returns on Friday night. Richmond is expecting MORE winter weather tonight as well as Saturday, so Pops bringing them back on Saturday won't work. Auntie Gina is prepared to fire up the Blazer and meet Jay Thursday night, but that depends on finding someone to work a shift for her. See what I mean? It's all out of my control. I want my boy back, but Mother Nature has other plans for us.

And there are other things going on behind the scenes that aren't really blog worthy yet that make me wonder if there isn't some grand plan for our family that no one bothered to share with me. The control freak would like to be in the loop, at the very least. Is that too much to ask?

Let's get to what you're all here to read about, shall we?

24 hours into her chemotherapy, Lois, Jay and I all hit a low point. Lois woke up shaking, crying, and in obvious discomfort. Was she nauseous? Dizzy? Did her port hurt? How was I to know? She has no way to tell me. So I took a guess and requested medication to help ease the pain in her port site. It didn't help. I was frantic to help my child. At about this time, Jay walked in, took one look at Lois, and lost it. I then realized I had given our epileptic dog the wrong medication the night before, and had completely forgotten his medications that morning. The snow was pouring from the sky. We were trapped at the hospital. It wasn't pretty.

But Lois perked up within the hour, and she has been her perky, ebullient self ever since. She amazes us. She's full of poison. She's confined to an oversized crib within a tiny room. She has a revolving door of physicians and nurses poking and prodding her. But she's happy. Lois can make lemonade out of the sourest of lemons. I'm so lucky to be her mother. I have that thought almost everyday since she was born, but watching her soldier through the past 6 days has reinforced just what a special human being she is. I won the lottery, folks.

Lois has been taking wagon rides through the halls of the pediatric floor with her Daddy. She waves at her adoring public.


She's played in the playroom with some of the other kids who are here. But I'm so freaked about germs now that we didn't stay long.


She noticed Jay chowing down on a hotdog from the cafeteria two days ago and insisted she have some. Her appetite, as you might imagine, has been almost nonexistent. But she ate 3/4 of Jay's hotdog that afternoon and then started in on his chips.


A McDonalds french fry always makes Lois happy. (I've seen SuperSize Me. Twice. I still eat them and allow my child to eat them. What's wrong with me?)


We are concerned that this little 6 month experience is going to be responsible for the development of some bad habits in our baby girl. Hot dogs every day in the hospital? Why not? She loves them! She won't eat anything else for breakfast except brownie bites? That's OK. She has cancer! Her pacifier - which she usually only uses at night and naptime is now her constant companion. It's comforting to her, so I haven't been able to take it away from her. I guess we'll deal with all of this in August. Can't wait.

Our nurses here at VCU have been so kind and helpful and understanding. We've had a few instances of late medication that I hesitated to report - until it was Lois's oral chemotherapy that was late. She receives an oral dose of one chemo drug twice a day - 12 hours apart at 1 am and 1 pm. Sunday at 2:15pm I went looking for our nurse to ask about it. There was a story about the pharmacy, but oddly enough, 2 minutes after I found her and asked, the medication appeared and was administered. I sought the advice of several people on what to do about this. We're going to be in and out of this place for 6 months and our stay could be made appreciably better by nurses who like our kid - and us. Tattling on a nurse didn't seem like a good way to win friends and influence people. But this IS my kid's life we're talking about. And I've got just a few nagging things on my mind these days and do NOT want to be responsible for making sure Lois gets lifesaving medication at the proper time. Best not to leave that up to me. So I told the hem/onc doctors and was visited shortly thereafter by the charge nurse. It sucked, but I did it. For Lois. Anything for Lois.

And a final funny story for you. The Yaya is a breast cancer survivor, and 10 years ago she had her own port surgery. The doctors managed to install her port just a little too deep in her chest, and accessing it during chemotherapy treatments was about as fun as a bathing suit full of fire ants. She told me to instruct Lois's surgeon not to make the same mistake. Regardless of what my friend Evelyn would tell you, I DO like to do what I'm told. Sometimes. So when the surgeon walked in to give us the 411 on Lois's surgery, I told him that Yaya would be unhappy if he got the darn thing too deep. He made sure he didn't, and he let us know who to thank for the advice:



Hope that picture didn't gross you out, Pops. Don't look too closely, OK?

Lois's chemo ended at 10am this morning. She's now receiving blood which she desperately needed. I think this morning she had one single red blood cell left circulating through her entire body. Low hemoglobin, low platelets and my kid is still perky and happy. After the blood, the platelets arrive, and then we're outta here.

Friday we have to report to the clinic. They access her port. Take blood. Send it to the lab. Check her red blood cell and platelet levels. Infuse if necessary (3 1/2 hours).

Next Tuesday we have to report to the clinic. They access her port. Take blood. Send it to the lab. Check her red blood cell and platelet levels. Infuse if necessary. (3 1/2 hours)

Do you sense a pattern?

They may throw in another bone marrow aspiration just for kicks. Got to see if the chemo is doing it's job. Lois's "bad" cells are only present in her marrow. It's going to take a bit longer to kill those suckers off, but they will check frequently. Lucky us. My biggest concern about all of this is my son. Yaya will probably be here for Friday's appointment and Tuesday's appointment - but she can't live here for the next 6 months. I've got to find someone to watch my boy for me 1 -2 days per week. So many of you have volunteered - and believe me, I will more than likely have to take you up on your offers. But I'd like to find someone I can hire and employ on a semi-regular basis. (I need YOU, Kate! *sniff) If you are local and have any suggestions for me, I'd love to hear them.

Just talked to Miss Judy and she'll be coming over tomorrow at her regularly scheduled time to work with Lois. I'm so happy. Not just because I have as much fun with Miss Judy as Lois does, but because it's so blissfully normal. Like any other Wednesday. ahhhhhh....