Taking One For the Team

I'm not sure I even know where to start tonight. I apologize for what my sister calls "radio silence." I haven't updated my blog. I didn't answer or return emails. I didn't answer or return phone calls. I even stayed away from Facebook. Life was happening all around me, but my singular focus was my poor little girl who was very, very sick in a hospital room at MCV.

I'm at a loss to tell you why I wasn't able to "talk" to you while this was happening. I looked forward to updating the blog every evening while Lois was in the hospital for chemotherapy. But this experience was different. Maybe I was trying to protect you. Maybe I was unable to focus on anything other than Lois. Or maybe I just didn't want you to know how close I was to completely falling apart.

Allow me to make a very long story short:

The shallow breathing thing turned out to be something to worry about after all. She spiked a fever on Sunday night right before the Super Bowl. A trip to the ER at MCV and another chest X-ray confirmed she had pneumonia. We were admitted into the Pediatric Progressive Care unit, which is essentially a step down from the PICU. Lois could not maintain her blood oxygen levels, her breathing was extremely rapid, and her fever rose to a frightening 104.5. They came to tell me the PICU was waiting for her, and I was convinced my daughter was dying.

Thanks to this blog, I know scores of people with children with DS who were treated successfully for leukemia and now have a clean bill of health. I know one child - only one -who had leukemia and developed pneumonia during treatment. And that sweet girl is no longer with us. I thought we were headed down the same path.

From the security of my own home, with my two babies upstairs peacefully sleeping, my dear husband behind me, and a warm cup of coffee in my hand, that now seems a tad bit melodramatic. But Lois was sick. Very sick. And I was frightened out of my mind.

She spent an entire week in the hospital with a fever. They'd go up as high as 103.5, and as low as the occasional 99.5 But the fever was ever present. She stopped eating. Her blood pressure went up. She developed thrush. And I witnessed all of this happen to my fragile, helpless little girl and was powerless to help her.

So I became angry at the world. I took it out on my sweet husband. I took it out on the nurses. I took it out on the doctors. I took it out on my mother. None of them deserved it. And it didn't make me feel any better.

I'm still angry. But I've got a better handle on it today.

No reason to be frightened to come visit.

When I'm at my angriest, I remember that children with DS have an increased risk of developing leukemia. In our DS playgroup here in Richmond, statistics decreed that one of our kids would receive this diagnosis. So Lois and Mac and Jay and I are taking one for the team. If Lois having leukemia means that Landon and Elizabeth and Maddy and Sarah and Brenden and Braden and Katie and Abby and Aiden and George and Kyle and Luke and Rowan and Taylor and Rachel and Grace and Emily and Brianna and Teddy and Jacob and Jonathan, and Jackson and Logan and Zachary and Joshua and Maura and Alex and Elizabeth and Taylor will never have this horrible diagnosis, then in some small way, it makes it all worthwhile.

We love our "cousins."

Medically speaking, Lois was neutropenic. Think of your bone marrow as a vegetable garden. The garden grows red blood cells (rbc), white blood cells (wbc), and platelets. In Lois's case, her garden has been sprouting some weeds. So the chemotherapy is used to kill the weeds. But it's so powerful, it kills everything in the garden. So about a week after the chemo hits Lois's system, her body becomes devoid of rbc, wbc, and platelets. You can give a person platelets - Lois has had them three times already - and they last about 4 days to a week. You can give a person rbc - they last a bit longer. You can give a person wbc - and they last only 2 hours. If you're lucky. So obviously, wbc transfusions don't happen except in the direst of circumstances. Lois received rbc and platelets the first night we were in the hospital. But she was on her own when it came to the wbc - and they were the missing piece of the puzzle. She needed them to fight off the virus. And they were very slow to return. Once they started to come back, the fever was gone and we were released. Wbc's are magic.

I wish I could keep some spare white blood cells in my diaper bag with the pacifiers and desitin. Sure would be handy.

So Lois's garden is now in (almost) full bloom again. She's weak. She's pale. She's lost a lot of weight. But compared to last Monday, she's a picture of health. In less than two weeks, she'll receive another dose of chemotherapy and we will start this whole process over again.

I can't wait.

Even without me picking up the phone or answering your emails, you've still managed to shower us with love and support. Lois and I received some amazing care packages this week from Auntie Gina, our Allentown "cousins" the Carneys, Nikki and Sam in Oceanisde CA - the one place in America that doesn't have a foot of snow on the ground right now, and a woman who can go toe to toe with my diet Coke consumption, Jenn Childs. Thank you SO much, friends. A parent from Lois's preschool arrived on our doorstep with dinner tonight. I'm not sure I've even ever met her. How's that for a random act of kindess? Beth Lennox is my new personal chef. Her food and her company hit the spot one particularly difficult night at the hospital. For the gift cards - The Daleys, The Walters, the Lancasters, the "Bees", and the Redmonds. Gift cards are very useful things. Especially now that a Queensland salad from the Outback has become my comfort food of choice. The cards - we love and treasure every one. Keep them coming. For the meals, Miss Judy, the Wixteds, Gwen, Sonja, Cousin Phyllis, and Miss Jessica. Each and every one was Yumm-O! For their daily contact with words of encouragement - Kimy, Evelyn, Auntie Gina, and Aunt Marpa. Forgive me when I don't answer.

Our family has turned their own lives upside down to help us these past few weeks. They've managed our dogs and our son in our absence. How do we thank you? By asking you to do it all over again. Five more times.

Nice, huh?

Where do we go from here? I thought Lois's horrific illness this last week would buy her some time before we start this process all over again. I thought wrong. Chemotherapy goes ahead as planned in less than two weeks. On Thursday, Lois will have another bone marrow aspiration (sigh) when we find out if the chemotherapy is working. If it isn't, we'll head to the hospital even sooner for round #2. If it is, infusion #2 will begin on February 26.

Mac is one happy camper, although I don't think he's very happy that his new best friend - Yaya - returned home to Pennsylvania with Auntie Gina last night. He got the DE-luxe Yaya treatment for almost 3 full weeks. Or is it 4? I think Momma is a bit of a let down. It is due to Mac that I offer my final thank you of the evening. My sister's dear friend Amy found a spot for Mac at the Goddard School here in Richmond. I now have a place to take Mac every time Lois has a clinic appointment, or an unexpected hospitalization. A safe, caring, consistent place. These ladies cared for Cousin Maggie. They should be able to handle my little bruiser.

I will be updating the Butter Bean's Brigade page now that we are sure of the dates of Lois's next treatments. There are no words to express the full measure of our gratitude, so I won't even try. But I will say this: I love any meal that I haven't had to cook.

Off to watch tonight's episode of Lost with my favorite couch potato....