Has it really been since August?!

I knew it had been a while since I wrote anything, but I didn't realize it was almost six months. Um, wow. Do I still have any readers left? :)

Today is a little slower. I'm in bed with a 100 degree fever, with Liam laying next to me and coming in at 104 degrees. Last night he woke us up a couple times shaking with chills and breathing with a high-pitched rasp, and I thought of RSV. It's been going around our city; in fact, last time Noelle was supposed to get chemo there were so many kids in the hospital with RSV that we had to get her chemo outpatient. Naturally, I am fearing that Noelle will catch this from Liam and end up hospitalized. So Jeremy and I are doing what we can to keep them apart, which means he doesn't go to work. Tomorrow we may hear back on Liam's nose swipe, and depending on what he has, we'll know how much to be scared!

So that's today. But why haven't I written anything in almost six months? Since I was in Houston with Noelle? Apparently I've been busy. I know I've been tired. I've had plenty on my mind. My kids like to kick me off the computer, and when they're gone or sleeping, I usually try to do the same.

Noelle is looking really cute, by the way. Bald and cute. She's talking, too. Cute little words like Mama and Dada and Dah (John), ish (fish), pup (cup), Jusjus (Jesus), baba (bottle), baybeh (blanket), off, shoes, gocks (socks), teef (teeth), eyes, bow.... I've taken all kinds of pictures of her cuteness, but today I'm confined to my bedroom and this pictureless laptop. But check facebook.

Power Plays

Noelle's surgery was hard on everyone, including her brothers. After seeing his sister looking like this:

http://jerheather.blogspot.com/2012/07/scenes-from-hospital.html

...John was stressed out. He doesn't like the thought of surgery, either, because it makes him very squeemish and nervous. He is also aware that cancer can claim the lives of some of its victims. He was visibly on edge, with a short fuse and screaming a lot. It wasn't his usual scream, the "My parents are so mean!" or "My brother is so annoying!" scream. It was more of a "I just can't take it anymore!" kind of scream, shrill and shreaking. So that tipped me off that I had to do something to help him cope with his sister's surgery.
Initially, nothing came to mind, until I prayed for guidance. Then the thought came about the medical play that they did in our hospital. Children are given medical supplies to use on dolls or stuffed animals, and it is said to help them process and deal with their own medical treatment. I didn't know how powerful it could be, however, until John and I tried it for ourselves.

I gathered up some spare medical supplies of Noelle's: tubing, guaze, alcohol wipes, tape, a mask, dressings, a measuring tape, syringes; and found our unused Fischer-Price doctor's tools. I put it all in a ziplock, got John's Cabbage Patch Kid, and presented it to him. Instead of the neutral, somewhat disinterested response I was expecting, I got an emphatic, "Thanks, Mom!" and he immediately started. I played with him, suggesting procedures and showing him how to use the supplies. I asked leading questions, like, "Does Davy have cancer?" but John really drove the play. He enjoyed putting a Broviac dressing on his doll, just like we do every Sunday on Noelle, and came up with some creative ways for using the equipment. We taped tubes all over that doll: at that time, Noelle had eight or nine tubes and wires in her. Davy's tumor was in his arm, John said, and he needed to have surgery. John made a careful insicion with a pencil, removed the tumor, and bandaged him. He also administed lots of chemo through the tubes, and finally, declared him cured. He wanted to leave all the tubes and tapes in place to "remember the people who saved his life." I love it when my son shows these moments of thoughtfulness and sensitivity.

The patient, following his successful treatment

When Jeremy's sister came home from the hospital that evening and saw the doll, she exclaimed, "Hey! This looks just like Noelle!" Exactly what I was going for.

The next day I realized, no more frantic screams. No more about-to-lose-it John. I was so surprised that it had worked so well! They say play is how children learn and process their world, but it's hard to know how true a statement that is until you've seen it firsthand. I was reminded of Liam's speech therapy (which would more accurately be called communcation therapy), and of the times when his therapist would say, "You've been playing with him more, haven't you? I can tell." She could actually detect improvements in his communication on weeks when we had spent more one-on-one time playing. She would say "all speech is rooted in play," and it amazed me. My son's limited communication was tied to his trouble relating socially to others, and when he practised the latter, he improved the former.

Both of these examples emphasize the power of play to me. Kids need to play, but I think what they really need, what they can't get on their own, is for us to play with them. My guidance in John's medical play helped him process a traumatic stress in his life, and widening Liam's world in play with him will always be important in his development. But your kids don't need to have trauma or autism to benefit from your playing with them! So please, go play with your kids today!

Missing Daddy

Noelle and I have been out of town for radiation treatment for three weeks (with another two to go) and Daddy is really starting to miss us. We took some video for him when the therapy dogs visited today. Noelle really likes animals, but is timid around real ones!

In this one she is startled by the dog's kiss and doesn't like him very well after that:

This encounter goes better. She even laughs at herself after bravely reaching out to touch him!

And this one was taken earlier today, when Noelle delivered a letter that had arrived from her brother:

Oooo, new computer!

I'm writing this post on my new computer. It's the cutest little baby laptop you ever saw! It has a 10 inch screen (about 5 x 9 inches), and the guy at Best Buy called it a "netbook," because I guess it's not good at too much other than for using the internet. It's my new computer for Houston, where I will be leaving for in one week. I'll be there for an entire month, so I'm considering thinking of it as my "summer home," though convincing myself I'm taking a vacation is proving slightly unsuccessful....

Mini Me

Scenes from the hospital

By now, we're pretty used to hanging out in our second home the hospital. Here are some pictures of us in our new digs. I have to apologize for the sideways photos. They are so tacky, such bad form on a blog, I know. But I have tried to flip them and it isn't transferring from iPhoto to Blogger and I'm doing this from Noelle's hospital room while trying to get her to sleep and I'm all out of patience.... So please bear with me and turn your head 90 degrees to the left as needed.

The day after her tumor was removed. Still pretty sedated and not wanting to move.
But look at all those lines! She's one hooked-up little lady. The gauze on her chest is covering her central line, keeping her from pulling it out (the surgical incision is just under her abdomen, and is glued shut).

Starting to feel more like herself, with Aunt Nanette. Two days after surgery they put in a "nose hose" to suction her stomach, which she had about three days. It calmed her vomiting.

Feeling a little dopey from the morphine, but we are happy to see her sitting up:

The morning after her first full day of EATING, feeling much more chipper:

It's now been one full week since her surgery. Would you believe the tumor measured 8.1 x 6.1 x 3.4 cm?! Pretty big for a baby. But she's healed up nicely, and so this morning they gave her a blood transfusion, and started chemo this afternoon. She'll be good to go home tomorrow or the next day! Yippee!

A few quick Liam cute things

The event that caused this blog post will come after the following two cute "Liam-isms":

• "Excuse me" --> LIAM TRANSLATOR --> "I'm scuse me"
• "Quesadilla" --> LIAM TRANSLATOR --> "Case of dilla"

So this evening, Liam was eating the last piece of a delicious cake our neighbor brought us after they heard of Noelle's diagnosis.  He was eating it real slowly and avoiding huge sections of it.  He kept asking for something else, but I was determined that since he got the last piece, he was going to eat it.  After a while (and eating around 2/3 of it), he said, "I'm all done.  This cake is too spicy."

Of course, the cake was never spicy, so we just assumed he was using the wrong word, but I didn't press the issue.  We put him to bed.

Two hours later, Grandmommy is cleaning up his dessert plate from the table, and she decides to take a bite of what was left.  She starts laughing at the same time she's cleaning out her mouth.  Liam had used one of his favorite toys at the table it seems: The cake was covered in pepper.  Too spicy, indeed.

On Cancer

Lately I've been thinking I could totally write one of those blogs by moms of special-needs children. For lack of a better name, it would be called "Special Needs Mom." I'd have a unique voice, you see: a mom with chronic illness raising an autistic son, a daughter with cancer, and another son with... a bunch of stuff. I would have lots of followers and get lots of feedback. We'd share stories and tips and together would create a community of support and learning and I would feel heard and understood.... But everyday, life happens. So I think, maybe next year. Or in a few years. Or posthumously.

Today a lot of life has happened. Aside from an evaluation and therapy for Liam, I've spent hours in the hospital. Right at this instant I am holding my infant daughter as she sleeps, IV fluid dripping through a tube and straight into her chest. She will get the first of many doses of chemotherapy sometime tonight while I am sleeping. I strikes me that there are some things I know about her future, and a lot that I don't.

I know her hair will fall out. I know the large bulge in her pelvis, which has practically doubled in size since I first discovered it, will start to shrink. I know she'll lose her appetite and slow down on her growth. I know she'll be in the Lord's hands. That whatever the outcome is, He has her best interest in mind. I don't know how hard this is really going to be, going in and out of the hospital for her doses of chemo, for I don't know how long. I don't know if the chemo alone will be able to shrink her large tumor enough. I don't know if there will be long-term effects. I don't know whether she's in the 65 percent who survive this type of cancer, or the 35 percent who don't. It's okay not to know that, though, because of what I do know: The Lord is in charge, and He loves us. I have a forever family, sealed in the temple of God. Life doesn't end at death. And most of all, (despite occasional panic) I feel an overwhelming peace and confidence from the Spirit of God telling me that everything will be okay.

So my life goes on. In a way, having a couple of high-maintenance boys along with my sweetie daughter helps me cope with her cancer: there is a lot to distract me, to keep me from brooding on depressing things. So while I won't have the time to write the blog I envision, at least I will enjoy being a mom to these three hooligans. We'll figure it out as we go along.

Here are some pictures we took for fun one day while I was pregnant with Noelle: