Still Clean

Teague had his second post-treatment MRI on Monday, November 2. Brain and spine, still clean. We are happy and relieved.

Dr. Watson said that this counts as 3 1/2 months on the cancer-free calendar. Quinn likes to count from the day of surgery, which would put us closer to 7 months, but you have to go from the end of treatment, which was July 17. I don't really care how they count it.

We got that good news Tuesday morning after a long Monday. If Teague's MRI had stayed on track, as scheduled, we would have had it all in one day, but we were delayed because he ate ONE fruit snack. A clear, gelled, gummy snack, which I thought was probably more like Jell-O than solid food, but no. They refused to sedate him. After a 7:15 a.m. check-in at PCMC, we were sent away.


So we took Teague to the zoo to kill time. Six hours, to be precise. And all he could have was Jell-O until noon, then nothing. He was so good. He'd only ask for food about once an hour: "I need soup!" he would declare.


He napped in the car on the way to the new hospital in Riverton (they had no more MRI availability at Primary Children's). It was opening day there, and everything smelled and looked as new as it was. And they were able to do his brain and spine, whereas PCMC only had him scheduled for brain.

Still no complaints from my tired, hungry toddler. Even when they put the IV in his little hand, he sat perfectly still on my lap, facing me, with his hand resting on my arm. They had to move the needle around in there, and he didn't even flinch. Not even a twitch. Brave, brave, brave. Only later did he say it "really hurts," and put his head down on me.


Then the usual drill. Sedation and the waiting. He was brought to the recovery room at 4:30 p.m., far too late in the day to hope to have the results read. But Dr. Kestle called first thing the next morning, and we met with Dr. Watson. Both doctors had good things to say.

Then Dr. Watson told us more of the scary crap that could manifest down the road because of whatever brain cells may have been killed by the radiation and therefore may not grow with the rest of Teague's brain. That weighed heavily on my mind for a few days until I remembered that almost none of the scary scenarios they've warned us about thus far have happened. Hair loss was really the only thing we've seen come true.

Teague always fares better than they say he will, which is evidence of the blessing Quinn gave him before he was even diagnosed. Teague was told that his brain would function properly. We've seen that over and over again.

Coif Comeback

Teague's hair is all filled in in back, and once again, his results are better than we were told to expect. I thought he'd be bald for another month and that when it came back it would be thinner. It's not. I can't tell any difference between the comeback hair and the original. I gave him one final buzz a few weeks ago to even out the hairline where the bald spot had been. Now his hairline is at his neck, not his ears. On top, he has one thinner spot where one of the radiation fields had been, but it's not noticeable. I'm with his Grandma Karen: if it's hard to notice, it doesn't count.

We have a spunky, cancer-free boy. His next checkup MRI is in a month. As of now, I'm not even nervous. Just happy and so, so grateful.

Hoping for Hair

Teague actually doesn't care (or know) that he is still very bald in the back, from the tip of one ear, around to the tip of the other. So I'm keeping him buzzed pretty short. He'll rub his head and say, "Haycut." Radiation keeps working for a while after you stop treatments, so his summer buzz might last until Halloween. I know it's a picky detail, and I really do know what's important here. Teague is alive. He doesn't have cancer. He is happy. I still can't count all of our blessings. But little reminders make it hard to put the horror down and walk away from it, and his hair loss is the last visible thing that screams the C word at me. I'm ready for it to start growing in. And although it will be thin, maybe it will help cover up that scar.

Clean

Today was Teague's first follow-up MRI of his brain and spinal cord. He's clean. There's nothing in there that shouldn't be. I don't even think I know how relieved I am.

It was a long day. We checked in at Primary Children's for the MRI at 9 a.m., and Teague was waking from sedation by about noon. Then we met with his neurosurgeon, Dr. Kestle. Walking into that office made me glad to be on the follow-up end this time. They had us check our info. I looked at the very paper I had filled out the first time we were there. Date: April 17. Reason for visit: tumor detected on an MRI. Eegh. Glad we're not back on that day.

From there we went over to LDS Hospital to meet with Dr. Watson, our oncologist. He also said Teague's brain looked good and that he hadn't expected anything to have grown because we started with a total resection and Teague has been in radiation all summer. So if there had been new growth, it would have been a bad, nasty, aggressive thing to deal with.

Teague was cute in the radiation office. He wanted to pat the machine. I overheard Dr. Watson checking with the therapists to see if the room was empty. It was funny to hear him say, "Teague wants to do a pat-pat for old time's sake." They all happily escorted him in and let him get his little hand up there.

We have about an 80% chance that this cancer is licked. The next two years present the greatest cancer comeback probability. I can hold my breath that long, I think. And Teague's hair should start growing back in about three months, but it will probably always be thinner. Some hair follicles had to be sacrificed. I know that shouldn't be a big deal, but I wouldn't be a mom if it didn't bug me.

So now we wait. No more doctor appointments for three months. But it doesn't feel as liberating as I expected. My sister Jessie summed it up. When I said that we have nothing more to do for a while, she replied, "Nothing but worry."

I will have to learn to not let the what-if stress take over. It's time to start believing that Teague does not have cancer. That's how it is right now, our doctors have said so, and I have to let that good news sink in. Right now I'm just a tangled ball of crazy emotions and fears that I have to sort out and settle. There's been too much to take in, but I will get there.


Cry it out and focus on the blessings. Focus on the blessings. Focus on the blessings.

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.

The Hair Loss Begins

It has begun. Just at lunchtime today I noticed a horizontal bald strip across the back of Teague's head. I don't know when that happened. All in one morning? Did it happen that fast or has it been happening and I just didn't see it? I haven't cried about it yet, but I might.

I was talking to my sister Jessie, who is a runner. She said when she coached girls' track, she'd tell the milers to do a gut-check on lap three because that's the one that gets you. First lap, you're excited. Second lap, you still have energy. Fourth lap, you can see the end and you get a second wind. But on that third lap, you feel tired. You think you have to slow down or you're going to die. But if you do a gut-check, you'll pass the people who are resting.

We are halfway through the radiation treatments. Lap two, down. Lap three is tough. This week I've been extra weepy, extra cranky, extra tired (though I've found ways to nap and it's been miraculous), and I've cracked a couple of times. Just broken down and cried.

The release has felt good, but I don't have time for it. I have to be a mom. I have to take care of a cancer baby. I have to give attention to the older kids. And feed them. And scrub toilets and floors and fold laundry. Keep things running. I have to fill in the gaps. I have to find it from somewhere.

And now, the effects of radiation are starting to show on my little Teague. I don't know how much hair my baby is going to lose or what other signs of radiation will manifest. Maybe not much more than this. I can only hope.

Just three more weeks. Hang in there, buddy. We'll hang with you: Daddy, Mommy, Braiden, and Tate, and all the people who love you.

Gut check.

The Popular Kid

Teague is a favorite at the hospital. I didn't realize how much so until the registration clerk commented that when Teague leaves, it's like a parade. Everyone comes out of thier places and sees him off. He waves, shouts, "See ya," gives high fives, and sometimes even gives hugs and kisses. One nurse said she loves starting her day off that way.

It's hard to believe how well Little Mr. Goodwill is weathering his treatments so far. He still has his hair, his skin doesn't look irritated yet, he's still got his appetite, and his sleep/wake patterns are the same. Makes me wonder in a weird way if this radiation is working. Dr. Watson said that usually the sedation is what's hardest on the little kids, so maybe things will stay this good for my little one.

Side effects or not, it's still a game of wait and see and hope. That may be part of what's wearing me down. I'm fatigued physically and frayed emotionally. And I know it shows. I'm sporting that haggard look that makeup, a hairdo, and an outfit don't fix. Beauty rest is not a myth. Emotionally, I wouldn't necessarily say I'm a wreck, but I do cry at TV commercials and e-mail forwards. It's kind of like that postpartum feeling, but it's not hormonal; it's just constant, gnawing stress. No matter how good life is, having your toddler in cancer treatment takes a toll.

But I can count blessings. Probably the most obvious one right now is that Teague is happy and energetic. Really, he is pure joy. Excited about life. He is my example and my bright spot because he doesn't know what there is to be stressed about. He is refreshing.

I'm so glad that he enjoys going to treatment. Almost every time we get into the car, he says, "Doctor?" If we say no, he says, "Awwww," in a whiny voice.

It's also good that he knows the routine: he leads the anesthesiologist of the day by the finger into the radiation area, pats the huge machine ("Pat-pat," he says), sits on the table and leans against me, and helps push the "sleepy meds" into his own body. Once when it hadn't yet taken effect, he said, "More." The next thing he knows, he wakes up and asks for crackers. And he sings on the way home.

No pain and lots of attention--who wouldn't love going to the doctor?

The Scary Mask

Teague is not afraid of the Elmo mask. He doesn't even know he wears it. To me, it's still a bit freaky but I'm getting over it. The mask is form-fitted to Teague's face, and it attaches to the table underneath him to immobilize his head during treatment. He always has red marks on his chin and nose when he wakes up. Easy to see why he has to be sedated. That could make anyone crazy.

The medical staff is taken with Teague. They think it's cute that he hops on the scale when he's supposed to, cooperates with the blood pressure cuff, knows where the elevator is and which buttons to push, and loves to ride in and push the wheelchairs. And he says hi to everyone.

Dr. Child, the anesthesiologist we had today, said that lots of kids are freaked out from the first treatment to the last. But Teague doesn't mind. When it was time, Teague took Dr. Child's hand and mine and walked into the radiation area. He even pushes the syringe and essentially sedates himself. This morning in the car on the way up, he was saying, "Doctor. Meds. Push."

Happy baby makes treatment easier.

The Rad Kid

That's what they call the kids in radiation therapy. Rad kids. They get star treatment at LDS Hospital. When we got to the desk to check in, I said what we were there for, and the registration lady said, "Is this Teague?" and she already had his bracelet ready. No sign of "with you in a moment."

They had stickers for him, they spoke kindly to him, and when he was back in recovery and starting to wake up, they were asking us what kind of snacks he likes.

So the drill is, we check in, they check his oxygen saturation and weight, and we go down to radiation. Anesthesiologist hooks him up, Teague sleeps, they put the Elmo mask on, they line up their radiation machine with lasers, and then Quinn and I leave before they start shooting the radiation.

I was weepy while they were doing all of this. It's so industiral-looking, and they're aiming this big, huge drum at my baby's head. And he's unconscious, and he's got a freaky-looking Elmo mask on. Teague didn't think it was freaky, though. Before he sacked out, he said it was his Elmo hat. And they didn't put it on his face until he was under.

While Teague was getting his zaps, Dr. Watson took us into his office and showed us where they're radiating and at what strengths. I was amazed. Maybe I'm an idiot, but I'd had no idea you could radiate in whatever shape you want and at whatever concentration you need. Overlaying initial and current MRIs and CT scans, he's got Teague's brain mapped out according to what it looks like now and what the tumor looked like. Size, shape, and all.

The larger doses of radiation follow the exact outline of Teague's former tumor, and the concentrations drop off from there. Some are 90%, some are 75%, others are 25%. They've got about seven tumor-shaped ripples outlined. Those are the fields they're radiating. Dr. Watson has the lines curving so that they miss Teague's cochleas, optical nerves, and pituitary gland. It's amazing.

The first 25 treatments will be in the shape of the former tumor, and the last eight will be made to fit the current size of the 4th ventricle of Teague's brain (where the tumor used to be).

Teague did great today. We were in and out in about an hour and a half, and they told us today was the longest one because they did extra X-rays.

Quinn and I are both emotional today. This is the first time we've both had a hard day at the same time. It's big and scary. Most days, we're fine, but the last few days it's just hit me that we're trying to save my child's life and that we're exposing him to things he should be protected from. He trusts us completely, and we're jeopardizing his brain function and making him sick. Who does that to a kid? And although we have a good prognosis, we don't know exactly what the future holds.

All we know for sure is, one down, 32 to go.

The Little Drunk

Yesterday was Teague's MRI, the one that Dr. Watson will use to plan his radiation treatments. Again, they let me hold him during sedation, but this time it was different. They gave him Nembutal, which was making the room spin as it took effect, and he was doing a Stevie Wonder thing with his head. He did not like it, and he was fighting the sleep. He was hard to hold onto. But I rocked him and sang to him, and he let it take over.

The MRI was pretty quick (about 20 minutes), but Teague still had to stay asleep for two hours from the time he'd gotten the meds. Otherwise, we were told, he would be inconsolable and would not even acknowledge his parents. Evidently, it would be a nightmare. So Quinn and I sat in recovery watching Arrested Development on the iPod while the little guy slept it off. Or at least until he slept enough of it off. The effects can last 12 to 24 hours. Glad they gave us the warning.

Teague was wobbly the rest of the day. They even had us support his back as we carried him to the car like we would if he were an infant. Not easy with this size of a kid. His speech was slow, too. I'd never seen a drunk toddler before.

By this morning he was almost back to normal. He could run, but he'd trip over bare carpet. Stop running toward the fireplace, please. I was glad when, after his nap, he was coordinated again.

Learning the Ropes

We went to LDS Hospital this morning for Teague's CT scan/radiation mask fitting. Hospital visits are getting to be routine. When he had his very first MRI (the diagnosis one), I was nervous the whole day before. I worried about my baby being scared, about the sedation, and about what we would find out. With this test, I kept forgetting yesterday that we were going in today.

Teague is adjusting better than I am to constantly being the patient. When he saw the nurse get out the blood pressure cuff, he held out his little arm. He used to scream and cry. Not now. He totally gets it.

Today they let Quinn and me go into the CT room and sit on the table, holding Teague while they sedated him. This was also easy for Teague. He's used to me flushing his line (he even likes to push the syringe), so he didn't mind that the anesthesiologist was hooking things up to it.

About 10 seconds later, Teague crumpled in my arms. That was actually disturbing. I'd never seen anything like that. His eyes weren't even all the way closed. I tilted his head back onto my chest because he was drooping forward. Then they had me lay him on the table. Also disturbing.

The CT scan only took about 15 minutes. Teague woke quickly afterward.

Next stop is Primary Children's on Thursday for his MRI. Dr. Watson will take Friday and Monday to map out the treatment plan, and Teague's first treatment will be Tuesday, June 2. He'll have 33 treatments, so this will take nearly seven weeks. Then, about three weeks after that, Teague should feel like himself again.

I figure I can get used to holding my little boy for sedation if that's what will make it easier for him. But then, again, it doesn't seem to be him who is having any trouble with this.

The New Normal

We're figuring out what our new normal is. I'm sure we'll have to do it again once Teague starts his treatments. That was one of the good pieces of advice from C.D. I said I wanted to get back to normal. He said I'm changed forever. I'll never be the same kind of parent. What a relief. I can't express the pressure that takes off of me. I can quit trying to make it like it was. We can just take it from here and find what works.

We don't have to be the same, but we do have to function. What that requires of me is making sure the other kids get attention and that they get to do the things kids do. I have to give them my time while focusing more nurturing than usual on Teague.

Another aspect of the new normal is figuring out just when Quinn and Sara time is. I'll be leaving early in the mornings, he'll be getting home late. It will take discipline not to stay up into the night hanging out. Maybe we just will anyway.

As for today we're ready for a Memorial Day holiday with the kids. More good advice from a wise friend. Slow my clock down. Enjoy things. Take them in. Yeah, sometimes a long weekend comes at a good time.

No Swimming

Because we have to keep Teague's line dry, we'll have to adopt a divide-and-conquer strategy for summer fun. No fill-up pool this year at our house, at least until that line is out and healed. The big kids can go swimming at times when Quinn or I can be somewhere else with Teague so we don't tease him with it.

I'm glad Teague played in the hose a few times before the line went in. I'm also glad he's not old enough to know the seasons or to associate summer with swimming.

Even his tub-time will be different. No more splash-fests. I'll just have to wash his head and his bum, probably in the sink so I can keep his middle dry. The rest, I'll do with baby wipes, I guess.

Teague has adjusted well to his line. I have to flush it twice a day, not once like I thought, and this morning he didn't cry. He's not nervous about it anymore. Once again, he's a normal, happy, enthusiastic kid. He will probably weather these next months better than I will.

In the meantime, the big kids are on board with not talking about swimming and with not getting into the hose without my knowing. Can't have any mishaps.

Same-Day Surgery for a Central Line

We just got home from Primary Children's where Teague had a central line placed today. It was only a 30-minute procedure, but all told, we were at the hospital for about five hours. Felt like a cakewalk compared to an extended stay, like before. Still, it's stressful to send your child into any kind of surgery and to see him hurting when he comes out.

Teague did great. We didn't even have them give him any happy meds before sending him in, and that was the right call. Just like last time, he went right with the anesthesiologist. He was in a little push-car, waving back at us as he went around the corner. Looks like this kid is learning the ropes. Sad and comforting at the same time.

Teague is sore and fussy, and he had one dose of morphine post-op. We'll do over-the-counter pain management from here on out. He's had some ibuprofen, and now he's just hangin' with Quinn on the couch, watching Dora the Explorer.


There's one tube coming out of his chest. We've got it taped down. It's weird, but it will be so much better than him getting poked every single day for a new IV, and different pokes if they ever need blood.

The nurse showed me how to flush his line (she even let me do it), and that will have to be done once a day. I'll probably only do it on weekends, though, because they'll do it for me on treatment days. The home health nurse will come tomorrow and show us how to change dressings and bathe him with this thing in.

We're waiting for a call back to schedule his MRI and CT for next week. After that, we're off and running with treatments.

In God's Hands

I've been thinking about how to make it through this. How to reduce my stress until it's over. How to live normally. I don't want to minimize how much the Lord has helped us, guided us, strengthened us, and comforted us. It has been more than I had ever thought possible.

One of the ways he has done that has been through other people's prayers, kind words, and insights. So when I needed more wisdom and faith than I have now, I asked a friend that I hadn't been in touch with in decades.

Last summer C.D. and Theresa Williams lost their son Ryan to neuroblastoma. Ryan was not quite six. His funeral was the same day as our class reunion. I can't express enough appreciation to C.D. for revisiting his difficult road to help me get down mine. He has shared some precious things with me that can come only from someone who has been there. The most important thing he told me was this:

One day, somehow, you must get to the place where you get alone with God and you turn EVERYTHING over to Him. I'm not saying you haven't before, but it will be different. The only time I found peace is when I finally said, "Ok God. Whatever happens I will serve you anyway. I want you to heal Ryan and keep him here with us. Well, happy, perfect. But whatever happens, no matter what, I will trust you and I will know that you know best. I don't want to lose him. But I put him, his life, my life, my family, my finances in Your hands."

I am not there yet, but I do know that Teague is in the Lord's hands. He knows what will happen. And what happens will be His will. I don't really have any control, anyway. All I can do is ask and hope that His and my will are the same, and if they're not, I have to change mine.

I think that we all hope to have that kind of faith. Like Abraham. You get your instructions and you just start hiking.

The concept is one thing. Being tested on it is another.

Can I do that? Can I trust the Lord that absolutely? That is my project. I'm not trying to rush it. I know it will take time, study, prayer, and a willingness not to be afraid. I don't expect to get there quickly, but I have made a space in my soul for that increase to come.

I know that when I get to where I know that I can't do better for Teague than God can, when I know that His will is better than anything I can hope for, I will have a degree of peace that I've not yet experienced.

I have shed many tears of gratitude. Thank you, C.D., for being so willing to share your experience and your wisdom with me. Your help is an answer to prayer.

The Radiation Plan

We are going to do this. I knew before we went in for our consultation that we would. Quinn knew it too. I was hoping the Lord would tell me something different, but out of the blue this morning while I was drying my hair, I got the impression that this is our course. So I said a very tearful double-check prayer and was told that it is. Here are the sobering details on why.

CHANCES
Our radiation oncologist, Dr. Watson, told us that Teague's particular type of ependymoma, because of its location, is more likely to regrow than other ependymomas. With no treatment the chance of that happening is 60% (not 20 to 40% like we originally thought). After radiation, that figure drops to 13%. That number, I almost like. Since there don't seem to be any zero-percents, I'll have to take it.

The survivability numbers are also more serious than we originally thought. At five years, without radiation, only about 60% of patients are still alive. With radiation, 80% of the patients are alive after seven years.

I know, I probably sound like an idiot saying I didn't think my kid's cancer was "that" bad. We are learning more every time we see a doctor.

REASONS
The reason for the treatment decision change is that they've done new studies where they've radiated children as young as 13 months with lower doses of radiation than they use on older kids and had good outcomes. The standard of care up until now has been to hold off on radiation until the child is at least three, doing either chemotherapy or just checking with MRIs in the meantime. But the survivability goes way down when they wait on the radiation.

It's clear that this treatment will significantly improve Teague's odds of being cancer-free. And evidently, living, for that matter. It's going to be hard, but I know deep inside that this child will survive this cancer. Getting there will be the hurdle.

TREATMENT
Prep step one is putting in a Hickman line, which will be kind of a permanent IV just below Teague's collarbone. He'll have tubes coming out of it that they can just hook into every day for his sedation. The sedation is to keep him still during treatment.

Prep step two is getting a new MRI. The diagnosis MRIs he's had done already show 5mm slices, and Dr. Watson needs much closer ones so he can accurately plan where to shoot the radiation. I think he said 1mm. The irony is that he has to get near the brain stem (where the tumor was attached) without directly hitting the brain stem. He also has to be sure to miss the pituitary gland and one other important thing but I can't remember now what that was. They'll have to come at that area from several angles while missing the important things. I guess this is where physics and math really figure into medicine.

Prep step three is a CT scan with the radiation mask on. The mask is to keep Teague's head still during treatment and to ensure that they're always hitting the same spot. The CT is to give them images of Teague's head and mask together. Dr. Watson is going to make Teague's mask look like Elmo.

I'm pushing for the MRI and CT to be done on the same day since both will require sedation. I need to economize the irritation to my toddler (and minimize our trips to the hospital).

Teague's treatments will be at LDS Hospital in downtown SLC. I will have to bring him there fasting at 7:30 every weekday morning for six weeks. With sedation, radiation, and waking up, we'll be there about two hours each time.

SIDE EFFECTS
During treatment Teague will be tired, the back of his head will lose hair, and his skin will be burned like a sunburn. This treatment could affect his balance, but the doctor said not to the point where he can't do active things like play sports. He might just have to work harder at them than he otherwise would have.

Teague's speech may be affected, and he may end up needing extra tutoring in school. Dr. Watson said he should be able to stay within normal learning ranges for his age and grade level. A steeper learning curve. That's the part that made me cry. How can I do this to my child?

Teague will have neurological assessments before and throughout his treatment so we'll know just how much they're damaging him by saving his life. I really don't know how you can tell at age two what kind of a speller he'll be or if you're screwing up his algebra skills.

I have to remind myself that these are all possible side effects, not definite. Hope, hope, hope.

THOUGHTS
This is all too much information and realization for me to process at once. Too many emotions to feel. We know this is the right way to go. It is still scary. Even though we are to the keeping-cancer-away stage, which is probably a better place to be than the let's-get-it-out stage, I am more emotional about it.

I've renamed today's visit. "Consultation" is a new word for "here's how much freaking danger you're in."

This stuff evokes the fight-or-flight response in me. But this time, I'm more scared. I still say, fight. The cancer and the trepidation.

The Oncologist Called

The new bottom line: they want to do radiation.

The first time we met with Dr. Wright, the oncologist, was when the labs on Teague's tumor came back. At that time she recommended no treatment but to have an MRI every three months to check for regrowth. But she did tell us that once a month all the oncologists, radiologists, and neurosurgeons have a meeting to discuss new patients, and that every now and then they'll come out of there with a different recommendation.

So it is with us. Glad we had a warning.

Still, it's surprising because they had told us that Teague is too young for radiation. But Dr. Wright explained that that's true when they radiate the whole brain. That's when it affects development. In Teague's case, they want to target the site of the tumor.

She said that ependymomas are less likely to grow back when they're in the top portion of the brain, but the ones in the lower portion are different. Guess you can't get much lower-portion than the brain stem.

We're meeting with the radiation oncologist tomorrow afternoon to discuss. So I have today to get my questions ready. They're already forming. I'm going to need stats, figures, all the what-are-the-benefits and what-are-the-side-effects questions I can think of.

All I know right now is that they want to do outpatient radiation Monday through Friday for six weeks. He would have to be sedated to keep him perfectly still during the zap. And with a daily treatment, they'd put in a PICC line so he wouldn't have to get stuck with a new sedation IV every day.

Looks like we're turning into long-term patients. Maybe we're not the people who get to just say, "Hey, thanks for getting the tumor out. See ya."

Ready for a Great Summer

I think we're officially back to normal now. Close enough, at least, that I'm saying we are.

Teague is a busier toddler than he ever was, and he is loving life. He only thinks about his "owie" when we see someone who hasn't seen him since his surgery, and they look at the back of his head. He obligingly points to the stitches. He doesn't complain unless he gets bumped. He's pretty much off the Motrin (he's only had two doses in the last four days), and the stitches are almost completely dissolved. Just a few random ones sticking out. I try to ignore them.

This little boy had a great time yesterday afternoon playing with Tatum in the hose. He was as rambunctious as any healthy two-year-old. Yeah. I said healthy. He's healthy now. All I can say is, wow. And I'm hanging onto hope that this is how his life will be.

A Little Gem for Me

I've tried to figure out over the years why it seems that the Lord's blessings are bigger when people unite and pray for a common cause. I've thought about how each of us is responsible for developing our own individual faith, and I know that each of us can have faith enough to move a mountain. Moses was the only one in that horde of people standing on the shore of the Red Sea who knew what was going to happen. He called that miracle down.

What I've always believed is that the Lord wants us to work together and look out for each other. He had the time to put us on this earth one at a time, but he didn't. He wants us to take care of each other, and He is pleased when we do. Until now, that's been my only way to explain the extra blessings.

Here's the additional thing that's come to me after this experience with Teague, and it may be a "duh" to other people, but it's my new treasure. More people praying covers all the bases of what we can ask for. Every prayer is a little different, and each one is answered separately.

I realized this when my sister said that her little four-year-old Celeste prayed that Teague wouldn't cry. It was what she could relate to, and she used her own words and her own faith. That particular prayer was answered in more than one instance.

It's been that way with every prayer for Teague. Each has been a unique request. What a beautiful way for the Lord to bless us as individuals and all together through one common experience.

The Favorite Child

I'm convinced there's no such thing.



I used to think that the favorite child shifted among the children to the one who is sad or hurt or sick or lonely. Whatever the situation dictated. It's not true. Only the focus shifts, not the love.

Two days after Teague's surgery, Quinn and I had an opportunity to go check Braiden out of school and bring him to the hospital to see his brother. I was amazed at how much I had missed that kid. We couldn't get to the school fast enough. I couldn't wait to get my arms around him. Couldn't squeeze him tight enough. But as soon as we were in the car headed back to the hospital, I wanted to already be there. I'd been away from my recovering baby for too long.

This has been the only situation where I can see a perk for Braiden having divorced parents. This time, it was Braiden being shielded from some of the pain. Although he was anxious for Teague, I was so grateful that he could be with his mom during the crazy part and have his normal, everyday life.

For Tatum, I shed tears. Not even six years old and having a sick brother and an absent mother. Ten days of bouncing between grandmas, aunts, and friends (to whom we are so grateful) was hard on her. Her emotions are still close to the surface, and she's a little higher on the sass scale. But she, like Teague, is getting back to normal. The whole thing is an adjustment.

There is no situation, at least that I've experienced so far, that can make you want to mother one kid more than another. It can only make you have to.

Sparkle

Every day Teague gets better. I don't know how he's doing it, but he is. The only word to describe him is sparkly. Or shiny. He's the same kid, but his personality is brighter. I never knew he wasn't laid-back. He talks all the time. I can barely have conversations with the other kids because he's interrupting. He giggles more, he runs away from diaper changes, and he gets way more excited about things he likes than he did before.

His pain continues to decrease. Only days ago I was having to switch between Motrin and Tylenol because he couldn't make it the full between-doses time. We were on a three-hour schedule. Yesterday, though, he had only two doses, and today, one. He woke up happy again from a full night's sleep, so I didn't give him anything in the morning. Then at about lunchtime, he said, "Mama, head. Meds." And that's been it.

I wrote thank-you notes today to the doctors, nurses, and medical staff who have helped us. And really, there were just no words. How do you thank someone for saving your child's life? Teague is not just alive. He is well.

It's a Good Day

This child is a new boy from yesterday to today. Teague slept through the night last night for the first time since his surgery. A full 13 hours. We were in disbelief. It was Quinn who barely slept; he kept wanting to check on Teague. I kept saying, "No way!"

We peeked into his room finally at 7:45 a.m., with pain meds in hand. Teague was happy, but I gave him the meds anyway.

His belly is also markedly better today. Still a little distended, but I can only tell because his belly button isn't quite as deep as it used to be, and after he eats, it shallows up a little more. But his tummy is softer, and he doesn't seem to be hurting.

I still can't keep him out of the pantry, but he is more willing to be distracted from food. Books and toys: good. I think he may be ebbing away from wanting to eat himself into a coma. Really can't blame the kid, though. I really think that this is the first time he can remember eating until he's satisfied. I'm convinced that he's been queasy for half his life.

I just can't count all of our blessings. I really can't. I know that this child is getting well because the Lord is blessing him. Every prayer has been heard. We are still being carried. And although I recognize that, I know that I am incompetent to really understand the depth. I also know that I am not self-sufficient. There is no way Quinn and I could have withstood what we have so far without help. I keep asking the Lord to teach me and show me all the things I can thank him for. Still, any thanks I give will never be enough.

I don't just mean because things have been going our way. Of course I'm thankful that they got the entire tumor out, that Teague has had none of the brain damage we were told was possible with this surgery, that he didn't have to have a drain coming out of his head, that he doesn't need a shunt, that he won't have chemotherapy, and that he is recovering well.

What I am most grateful for is the assurance that this child is in the Lord's hands, and that the faith of many has brought into our lives the blessings that were waiting for us. If those blessings had been different ones that what we had hoped they would be, and even if what's in store for us yet doesn't turn out they way we hope, I know that we are being blessed with all that the Lord has planned for us. I cannot ask for more than that.

Dump Trucks

A little video Aunt Lauren took of Teague in the hospital. This kid loves dump trucks. His pronunciation, however, is questionable.

Fatty Fat-Fat

Teague is fine. We ended up going to the ER last night for the CT scan because he was hurting and inconsolable, and he's never been like that. We couldn't be up all night worrying about that little head. The scan looked normal, and Primary Children's looked at it today and confirmed that. They said that the ventricles in his brain are actually smaller than they were on the last scan, which means that they're getting back to their normal, pre-hydrocephalus size.

About the fat face, I got to looking at him more today, and I realize that this kid is just gaining weight. He's put on about four pounds since his surgery. Eating like a little piggy. It was just hard to recognize it as weight gain because his belly is almost always distended (that ileus is hangin' on), so all I saw was the chub on his cheeks. I hadn't seen that his arms and hands are fleshier, his little feet are fatter, and his bum is suddenly more than just a crack with legs.

Our pediatrician's office said that he should settle down on the garbage-disposal appetite once he catches up. He's always been on the skinny side, so he's got some leeway when it comes to fattening up.

It's nice to be able to feed him. That kid never ate. He was always picky, but in the weeks before we found out he had cancer, he was a nightmare. He'd ask me to fix him something, I'd do it, and he would take one bite at the most. Then he'd ask me to make something else. I thought he just liked watching me cook. I had no idea he was hungry but felt too queasy to gag it down. Poor little baby.

Now my job is to make sure he's getting good food. No more desperately resorting to anything he's willing to ingest. I have to be a nutritionist and give him all the fortification he needs to keep his body healthy and hopefully keep the cancer away. And if it comes back, he's got to be strong in case he needs treatment.

No more chicken nuggets.

Testing: One, Two, Three-Gajillion

The tests keep coming. We're headed back up to Primary Children's tomorrow morning for a CT scan of Teague's brain. I called today because I was worried about how much pain he's still in, and they said he shouldn't be hurting this much 12 days after his surgery. He is needing pain meds more often now than he did when he was in the hospital. There, he was down to one dose a day. Now I have to keep it a-comin' or he's fussy, and it's a pain cry. All moms know the pain cry.

I'm also concerned that his little face is fat. Is it swollen or is he just gaining weight because he's eating heartily for the first time in his life? That's also actually another concern of mine. The kid doesn't have a "full" signal. Wants to eat all the time, even when he's got puppy belly. Maybe something got triggered in surgery. Even if it did, how could I complain? His life was saved.

Tomorrow's CT scan will show if the ventricles in his brain are the same, smaller, or larger than they were on April 21, the last time they checked. They'll also compare it to the pre- and post-op MRIs. If they're larger, it could mean that his CSF is not draining properly.

If you have more prayers in you, we need them. Teague might be able to handle another surgery better than I can. I just need to remember that if they need to drain fluid or put in a shunt, it will not be as serious of a procedure as what he's already had.

I'm starting to wonder, like Quinn, when the pestilence is going to hit.

From Outy to Inny

Finally, Teague's ileus is subsiding. It's not gone, but he's doing better. His belly button had a little crater to it this morning (later in the day is fat time, just like when you're pregnant). I hope it will be all the way back in soon. He's still uncomfortable, but not near what he was yesterday. Or the past week, for that matter. That was pain.

It's strange how I was wondering, after all he went through, how he could possibly handle one more thing. This tummy trouble really bugged me. He spent three extra days in the hospital because of it. Did this child really need one more trial?

But the one good thing is that it diverted all of our attention away from the life-threatening reason he was there in the first place. I never had time to freak out over words like Neuro/Trauma Unit, craniotomy, tumor resection, chemotherapy, or any of it. It's kind of good that I knew the ending to the first volume of the scary book before I really, really read it.

Teague's attention was diverted as well. Only after we got home did he really start to complain about his head. I think that the healing bone must be what's painful. If we ask him about his owie, he points to the incision. He turns his head to the side when I change his diapers. But now, we can ease the aches with over-the-counter meds.

Teague really is becoming more each day the little boy he was before. But this time with an appetite. I never imagined that this child is not, in fact, a picky eater.