Empty Buckets

I've known for months that Tatum needs more from me. Braiden, too, but to a lesser extent because he's been a little more shielded from the craziness of the summer and because he's at a more independent age. But he has felt the crazy.

This last week since we've been out of radiation, I've been spending more equal time with the big kids. Just trying to get back to how things were and fill up their buckets as much as I can. Tatum still has extra sass and a bit of a defiance to her. And a paper-thin temper. She gets mad at minor things, hits and screams, and cries more than usual. So I discipline the behavior, try to get her more play time than she's had, and cry over it privately. I have a tender spot for it because I know it's from a deficit on my part. I also know I can help her get it under control over time.

I'm realizing that Quinn's bucket and mine might be the emptiest. Yesterday we were in Teague's room and Quinn picked up the radiation mask. It's been sitting on the dresser for the past week. He said, "Let's put this where we don't have to look at it," and I replied, "Yeah. We're done with that." I was starting to add, "I hope," but was already crying.

Today I was cleaning and found a piece of clear film from one of Teague's sterile dressings under the bed. The words, "That was so hard," ran through my mind with images of that film covering a tube that went right into the little chest, and I cried again.

I threw away the Sharps container with all the line flush syringes in it, and as it went into the bin, I felt hate for it. I don't think I've ever hated an object.

I didn't have time during radiation to think about it being hard. I knew it was, but I couldn't let it affect me, and I couldn't be scared. Now I can, and the emotions are coming out any way they can. It's all the shoved-aside emotion from what we've been through and all the what-if fear of it not being over. I can't stand to think of the possibility (however slim) that Teague will have to do this all again.

Functionally, we are improving every day. We can feel the upswing. We're more rested, and our schedule is more normal. We're doing more fun things. This last week we've been swimming, fishing, four-wheeling, and to a parade. We're making the most of our one-month summer. I had no idea how bad the funk was until we started to climb out.

Red-Letter Day

There must be very few situations in life that can make you realize what a privilege it is to take a bath. I know that ours has not been the hardest among those situations, but it has opened our eyes to the pure joy that exists in the simplest everyday things.

We played in the hose yesterday, and we went swimming today. Teague cares about the hose way more than the pool. And he doesn't mind that last year's swimsuits are tight on his belly. I never even bought the poor child a 2T.

Regardless, happiness.

Free at Last

Even though Teague's last radiation treatment happened on Friday, today is the day that I finally feel free. We had the central line removed. He has no equipment coming out of him anymore. I am surprised at how much this feels like a jail break. I can finally relax.

Teague had grown attached to his line. It never bothered him. He'd run up to a swing and hop on, belly first. No big deal. Now it's no big deal to me, either. Just a bandage. Teague doesn't mind that it's out. He held it on the way home. It's in a bag, so don't go thinking that's disgusting.

I can hardly describe the euphoria of not having ANY equipment on my child. My mind went back to when he first came out of surgery. He was hooked up to so many things. A central line going into the side of his neck, an arterial line in his wrist, a catheter, a saturation monitor, and those little stickers on his chest with leads on them. It was a mess to try to hold him. You move one thing the wrong way and the monitors go off. Over the course of our stay, he had fewer and fewer gadgets. Ugh, and even just walking into Primary Children's today brought back a flood of dreadful memories. How did we get through that?

Then came the permanent central line. For two months, it's been a constant. Change the dressing. Flush the line. Don't get Teague wet. I didn't realize how much the equipment was getting me down.

On our way home today, we were briefly behind a home healthcare equipment truck. I was so happy that it wasn't going to our house!

In two days, Teague can have a bath. Splash away, little man. And when the site is totally healed over, we're heading to the pool. It's time to play, people!

Affected

I've been thinking for weeks that Teague runs crooked. Quinn didn't think so; it's hard to notice. Even Dr. Watson didn't see it when he checked him a few weeks ago.

Then yesterday, when he was checking him, we went through the usual drill.

"Skin looks good. No nausea?"

"No."

"Appetite?"

"Good."

"How's his balance?"

We said it was good. He doesn't fall down much, but we didn't really know what to look for. Dr. Watson said that we might not notice it when he's rested, but when he's tired, he might list a little.

That's it. The crooked run. He tilts left, tired or not.

My baby's brain is damaged. I know it's minor and that he will compensate, and that we had to do this radiation to give him the very best chance of not having that same original ependymoma grow back. I know we made the right choice with this treatment, but it is still hard to take. I hate it.

The whole time during treatment, all we could do was get by. Just get up and get ourselves there every day. Survive. Didn't really have room in my frazzled brain to think about what this invisible treatment might be doing to my child. We even spent the first few weeks (before the hair loss) allowing ourselves to believe that maybe it was pretty safe, that it wasn't really hurting him (even though the radiation therapists go into a separate room to push the zap button and wear little electronic units that register any radiation they're exposed to). But for us, that head-in-the-sand way of thinking was part of the survival.

Now we can see it. Add the hair loss and the crooked run to the realization that he is now more likely to develop cancer over his lifetime because of all the cells that the radiation damaged but did not kill, and it's a tough pill to swallow.

Duh. Go back to high school biology, or even anything you know about brain injuries, and you know that brain cells don't regenerate. Here's the significance of that. The leftover cancer cells that were killed are gone forever. If there are some that survived radiation and they begin to grow, we know that they were the strongest of the diseased cells, and that's why comeback cancer is more aggressive.

But what about the healthy cells that were damaged but didn't die during radiation? They are Teague's future general cancer risk. Those cells will still be there years and years and years from now. Once Teague reaches a five-year cancer survivor mark, he will still have to be checked every year for the rest of his life.

So the radiation gave us the best odds of not having anything grow back. Good. And it messed with this little child's balance, made his hair fall out, and filled him with free radicals. Ugggh.

Bittersweet

Today was Teague's last radiation treatment. Wow. It feels good to be finished, but we are also sad in a bizarre way to leave our friends at LDS Hospital. They made us so at home. They fussed over Teague from day one. They made all the hassle of getting up so early and dragging in there, better. Today they had presents and cards, hugs, and well wishes for us. And a few tears.



We forgot the camera today, and I wish we hadn't because we could have gotten a picture of Teague ringing the celebration bell in the radiation therapy office. It felt cathartic, but not completely. We'll always have to keep watch on this little angel boy.

Dr. Watson was explaining to us that because Teague has had radiation, his lifelong risk of developing cancer in general is greater. So much for getting it over with when you're two. I don't remember him mentioning that risk factor before we started, but it honestly would not have made a difference. We had to radiate because Teague's risk of this same cancer growing back was ominous.

What an example my little child is to me. He has frankly accepted everything that has come to him. He just moved on after his surgery. Didn't let the pain get him down. He found joy in daily trips to radiation. He has no concept of "no fair." It gives me a tiny glimpse of what the Savior meant when he said to become as little children. What a beautiful, happy way to live.

We are looking forward to getting back to normal. Being normal neighbors. Living a normal life. First step is my declaration today of mandatory naps. Braiden and Tatum came to the last few treatments with us, and they are tired, cranky, and fighting. I have been exhausted for weeks. So when little guy snoozes, we all snooze. I can't wait.

What the Tumor Looked Like

I finally got a CD with Teague's diagnosis MRI images on it. This one is a good view of the former tumor. Look down at the base of his brain, right on the brain stem. It's shaped kind of like a jelly bean. But bigger. And scarier.

I guess the cerebellum looks like a jelly bean, too. OK, so the cerebellum curves outward to the right of the image, and the tumor is at the base of that. They kind of blend together in this image.

Luckily in actuality, they didn't blend together. Dr. Kestle said that when he pushed the lobes of Teague's cerebellum apart, they slid right off the surface of the tumor. The tumor was connected to the brain stem, and it was starting to spill over one side of it, but had not invaded it, and it had not wrapped around it. I think we found it just in time.

It's a reminder for me today of all I have to be grateful for. I don't know why we are blessed in this way. I know I shouldn't question it but should just be thankful. I just have our new rad friends, Annette and Travis, on my mind. Their little three-year-old Maryn's tumor is diffused within her brain stem and is inoperable.

Annette loves her child every bit as much as I love mine. We have the same mommy instincts, the same fears, the same drive to give our very lives for our children, and the same hope that it will be enough.

There's nothing special about me that I deserve for my child to have a good prognosis. I know the Lord is wise and can see into eternity, and all I can see is what's in front of me. I don't know what he has in store for Maryn or for Teague. I just know what it looks like right now. Annette is living all of my fears. My heart breaks, and I pray every day for her and for Maryn.

The Necessary Buzz

It had to happen. Teague's hair was looking like an 80s wedge cut. A very expensive, uneven 80s wedge cut. So yesterday I buzzed it. Because the strip across the back is so wide and so hairless, I had to use the #1 guard to make it all look more even. On top, I used a #2. Started out longer on top, but he was so wiggly I had to make it easy to blend.


Now I'm not so sad when I look at his head. Even though his scar is way more prominent, at least the haircut doesn't scream cancer. Instead, he looks like a little soldier. And I think it makes his eyes look even more round.