Wonderings

Every once in a while there are things that keep me up late at night wondering. Tonight, my heart feels a little heavy wondering about my Elena.

Overall, she is doing superbly. She has responded well to all her treatments and this last round of chemo didn't hit her very hard. She was spared a lot of sickness and we are so grateful for that. We truly have been blessed. I could name a million different ways that we have seen the Lord's hand in our lives.

She has been in between courses of chemo now for about 3 weeks. For the most part, the start of each course is count dependent (at least an ANC of 750 - basically they want the blood to build back up enough to survive another course of chemo drugs). It's been interesting to see how her appetite has come back while she's been off chemo. She hasn't been eating hardly anything for a while. All of a sudden, over the last couple of weeks, her appetite has come back with a vengeance. She scarfed her dinner last night (including seconds and thirds of just about everything) and then had about 5 hearty meals today. :) It's nice to see her eating well again.

Tonight, though, we went on a walk to the park to go sit in the grass and have our lesson for Family Home Evening. As soon as we walked through the gate from our neighborhood into the park, her eyes lit up and she wanted to go over and play on the toys. We had to tell her no, of course. Her counts are (probably) still low - she can't go play with other kids (strangers whose current health status/hygiene habits we don't know) and she can't go touch germy playground equipment. I've avoided the park for quite a while just so she wouldn't be tempted and have to be told that she can't. We've just stayed locked away in our house for weeks, with the occasional trip to the mailbox or to swing in the backyard. But, Elena, Lily, and I - the three inmates- were going CRAZY and needed to get out. So, I thought trying the grass- far away from the play equipment- in the park would be okay.

Elena persisted for another minute and then gave up. Her countenance dropped and she just stood there sadly. To distract her, I suggested we race over to a tree on the other side of the park. After a little coaxing, she accepted. Once we settled down by the tree, she found a branch of leaves that had fallen down to amuse herself with. She alternated back and forth between asking us questions about the branch, picking off the leaves, running around the tree circle, and playing hide and seek with us behind the tree trunk. After about 15 minutes of these activities, I noticed her standing quietly on the other side of the tree from us, facing the playground equipment, staring at the kids playing. I watched her for a few minutes. She just stood there, silently and wistfully, watching the other kids playing. Then she began picking leaves off the branch she was holding, glancing up every few moments to watch the kids playing. It broke my heart to see her there. She didn't cry or ask to go play too, she didn't even try to sneakily inch her way closer to the playground, like she has in the past. She just watched and seemed resigned. It absolutely broke my heart.

I pointed her out to Eric and mentioned what I was thinking. He agreed.

"She doesn't try anymore," he said.

"I know," I added. "Like last week when we went hiking and she didn't seem that excited about it. She was really pretty quiet the whole time and kept saying that she wanted to go home." I had thought she would be so excited to get outside and see so many new and pretty things... Lately we've been noticing changes like that - I think Eric really summed up what we've been seeing. She just doesn't try a whole lot anymore.

Nights like tonight make me sad. I mourn for life before cancer. And I wonder about my little girl. Is she going to turn out normal? How can she possibly be a normal little kid after years of this type of a life?

We probably sounds like complete psychos to anyone overhearing our parenting when we are outside of the house:

"Elena, don't run! You could fall down." (Dangerous with low platelets because bleeding won't stop. And just dangerous in general with low counts because of the risk of infection.)

"Elena, don't touch that ____ (rock, dirt, plant, stick, fill in the blank)!" (There is a bacterial infection that is particularly dangerous to immuno-compromised people that comes from soil/dirt.)

"No, you can't go play over there. You could get sick."

What kind of life is that for a little kid? How do you explain to them that certain things can make them sick and it is suddenly very dangerous for them to get sick? How do you explain "low blood counts" to a (just about) three year old?

Elena pretty much came out of the womb smiling - she's always been so extremely happy and full of energy and gusto for life. Lately, I've been thinking that maybe part of the reason for that is that the Lord knew that she needed a little extra resilience and "uumph" to get her through this hard time. But sometimes, it seems like her resilience is wearing out a little and it scares me and makes me sad.

I wonder about all the things she is missing. She can't really go anywhere. She goes to the hospital for treatments. And occasionally when her counts are up, she gets to go play with cousins (thank heavens for having cousins nearby - she pretty much wouldn't get to play with any little kids at all otherwise!) or do something outside (like the zoo if she stays in a stroller). She can't go to church, to the grocery store, to play at the park, etc. I wonder and worry about the things she's missing at church. I wonder about the socialization she's missing by not playing with other kids. For the most part, it seems like she's accepted her new way of life, but sometimes she'll ask to go to the store with me or beg and cry to go to church as one of us is walking out the door on Sunday. Of course, none of these things really matter as long as she makes it out of this.

I wonder if she's going to make it through all of this. We talk like she is - we don't discuss the other alternative. And all signs point to a good recovery. But, sometimes doubts and fears creep in. I haven't gotten up the courage to pray yet for the Lord's will to be done or to ask what that is. I know I need to. But, I'm still too scared of what the answer could be. I need to work on that.

Those are some of the things I'm wondering about tonight.