The Little Things

I don't live in cancer world. At all. I just visit a couple times a year for checkups. But having spent a little time there adds a flavor to the rest of my life that I might not otherwise taste. Teague just finished his first soccer season, and he loved it. He's just like the other six-year-olds. All of them cluster around the ball like it's a magnet, all of them want to kick it so badly that they'll steal it from a teammate to do so, all of them come off the field with sweaty heads and pink cheeks. And I didn't sit there at the games thinking about when Teague was sick. That would have been crazy. I just watched the games, cheered like the other parents, and jumped out of my seat with excitement when my kid scored a goal. (That was its own kind of awesome.)

But somehow, knowing that Teague has had his head cut open and that his brain has been radiated, and that those things should give him trouble balancing but don't, made the soccer moments just a little sweeter. I thank the Lord for these little things. And I'm a little hesitant in saying that because I don't want it to sound trite. I know we got off easy. Our kid beat his cancer in a matter of months. I'm ever-aware of many whose battles are longer or cause more damage or are even lost. But in my small way, I recognize that big mouthfuls of bitter, in whatever form, make way for a subtle kind of sweet that there's no other way to notice.

Easier with Time (Usually)

I believe I have an emotional hangover. Yesterday was MRI (and other testing) day for Teague. Everything went well, and the results were good. But there's something about watching your child be Guinea-pigged that kills a mother's soul just a little. Teague wasn't looking forward to it. He dreaded the IV hurting. The day before, he kept saying he didn't want an MRI. So Quinn gave him a blessing before bed, and it really took a load off of Teague. I probably should have gotten one too because I could not sleep. I was up past 1 a.m., folding laundry and stewing, stewing, stewing. Not that I was afraid of results. I just knew it was going to be a long day. And it was. We left home before the sun was up and got home at dinnertime. On the way, Teague asked, "Are they going to pull out my brain?" He couldn't think of how else they would take a picture of it. I was glad we could clear that up for him. The IV and blood draw came first. We had hoped for one poke, but it turned into two because the vein wasn't cooperating. His skin would blanch when they flushed the line, and it didn't look like it was going to hold for the day. So they switched to his other hand. Teague, as always, didn't flinch. He is a man in a little boy's body; he was happy to be on my lap, but if I patted him, he would bravely shrug me off. It makes me proud and breaks my heart at the same time. He had a hearing test to see if the radiation is affecting his inner ear. All normal. Then to imaging to wait to be sedated. Long wait because everything else had run ahead of schedule. Teague wanted to go home, and he wanted to have some breakfast. It was hard to have to tell him he couldn't do either. It was 11 before it was his turn. Sedation still gets to me, even though they've done it to him close to the 50 times now. I guess it's a good thing, though, when sedation, not cancer, is the worry. This time I didn't hold him in my lap. He just got up on the table and let them start the meds. He got groggy, the color drained from his face and lips, and he drifted off. I only cried a little. The MRI took an hour and a half. Brain and spine, and a tough wake-up. I don't even like to wake up from natural sleep. I can't imagine trying to come out of sedation. Can't blame him for not being interested in the popsicle! We met with Dr. Bruggers, the oncologist at Primary Children's who will follow Teague from this point forward. It was all good news. No evidence of anything scary returning, blood work all normal, no concerns. WE also met with Dr. Colte, the neuropsychologist, who said we do not need his services. Good, good, good. Grandma Karen brought dinner for us. Homemade spaghetti (her sauce is amazing), salad, and bread. Godsend. But I still made pancakes for Teague. That's what he wanted. The man finally got his breakfast. Now I'm just drained. Verge of tears last night, a little edgy today, and wishing I had nothing to do but have a pajama day. Looking at all that's around me, and seeing what doesn't get done when you take yourself out of your life for a day. I think I sound bratty. My child is well, and I'm stressed about how hard it is to find that out. Really? Is that a complaint? In truth, I'm always grateful that there's nothing wrong with Teague. He shows no evidence of what he's been through except for an almost-invisible scar up the back of his head. Blessings abound. I'm also grateful these "crash" days only have to happen twice a year. The rest of the time, we don't think much about cancer. Because no one in this house has it.

The waiting room game

Ready for the big scan

Sleeping it off in recovery

Three Years, Cancer Free

He's older now; five and a half. And that means he asks more questions about procedures. So while Quinn and I are just happy that IVs and sedation are the things we worry about instead of life and death, Teague is just now starting to question what's happening. So this MRI, even though we expected good news, was one of the harder ones for me as a mother. I got Teague up early, before six. As soon as he was awake, he declared, "I am not going to be scared of this thing today." Mustering bravery to hide his nerves. And that is how he handled it. Stoic-like. Not even a twitch as the IV went in, but he did say, "Ow, ow!" and that was all. He was also nervous to be sedated. He asked questions about the sleepy meds. The MRI tech picked up on his nerves and took him into the room to show him the machine and what it does. He put a cylinder of cleaning wipes in the headrest to show Teague where his head would go, and did a little MRI on the wipes. I loved the effort, but Teague hung back, not amused. As he got the meds, instead of collapsing into me, he swayed and said, "Whoa!" a few times. So for me, there were tears today. It's just not OK when your kid is scared. The good thing about today was that there was a radiologist readily available, and he read the scan immediately. He came to the recovery room before Teague was even awake and told us that all was well. Again, tears from a grateful mother. I was overcome with a mix of emotions: gratitude, relief, and all those old feelings from when he was sick, blended together. And the new bit of wisdom from today about what else radiation kills besides cancer: bone marrow. We learned that the radiated areas of Teague's skull don't have red marrow anymore, at least not as much as he should have at his age. His is more like an older person's, with fat in there. It's always kind of a bummer to discover yet another thing they damaged, but it also always brings more reasons to thank my Father in Heaven. If they have to tell me what's damaged, it's not a big enough deal to worry about in my daily life. Teague has been protected, and he is a normal, healthy kid.

Zero Worry

This post has been months in the making. For simplicity's sake, I'll say it started last August, when Quinn gave the kids priesthood blessings at the start of the school year. I always love that time of year because it reminds me of how individual each kid is; there's never a repeated phrase in any of their blessings. I also received a blessing. I was expecting it to be simple. Just a little help being mindful of the children and their needs and being able to support them in their learning and activities. All the mom stuff.

But there was something else. I was blessed that I would no longer worry about Teague. I was told, regarding all the tests he is yet to have, "You already know the outcome." And it's true. I do. I heard with my own ears Teague being told in a blessing that this cancer would cease.

Still, somehow, I always worry. I always think that I don't because between MRIs, we live in cancer-free land. But every time I call to set up his next appointment, it shakes me. I think about what we have planned in our lives and when would be a good time to test in case we get bad news and need to schedule a surgery or treatment. And I always cry when I hang up the phone. Then I'm fine again until a few days leading up to the scan, when I get tense again. And I always cry again when they tell me my child is still healthy.

So when Quinn said those words in the blessing, into my mind came and image of Peter walking on the water. His faith was strong. He was experiencing a miracle. But then he started to look around at the world he knew, at the nature he grew up with. The storm around him and the water beneath him. He probably realized that people don't walk on water. And at that moment, he began to sink.

I realized that I, too, am facing a miracle. I am in the middle of it. And my storms are statistics and doctors who want to keep an eye on Teague and keep checking for regrowth. Nurses who refer to him as a "tumor kid" when they think I'm not necessarily listening. And just plain not knowing for scientific certainty because I can't personally see inside his head. And that is where the stress comes in.

So after that blessing, I decided that my new goal was to get through an MRI, from scheduling to completion, with unshakable faith. And for this one, I was almost there. Probably more than 90 percent.

It started with a declaration of testimony that I know my child is healed. I did it in front of my entire ward congregation. Saying something out loud always increases faith. I also prayed for stronger faith and the ability to believe what we've been blessed with.

And here's what I experienced. Teague was scheduled for an MRI in October. I had probably scheduled that one sometime in July, and it shook me. Just the phone call alone took me back to cancer land, and it's a scary place. We ended up rescheduling that particular MRI for insurance purposes. I called about a month ago to get it scheduled, and did not worry about what we had going on, and I did not cry when I got off the phone. Not totally unaffected, but almost not upset.

Quinn asked me the night before how nervous I was about the procedure. Scale of one to ten. I said, "Zero." And maybe it wasn't exactly zero, but it was close enough that that's what came out of my mouth. I actually kept forgetting that our appointment was the next day. I just didn't feel any trepidation.

I am at the point where I'm able to say confidently that Teague has been healed. I know that he has. I was not surprised that yesterday's MRI came back clean. But I did get giddy-excited when I got the call. And I am working on that last little sliver of doubt.

The One-Year Milestone

It's official: Teague has reached the one-year cancer-free milestone. Quinn and I have so looked forward to this day. So many times, we've said, "Won't it be great to hit the one-year?"

The MRI today was of Teague's brain and spine, and both are clean. We are growing used to good news. We expected good news. We had faith that the things he's been promised in priesthood blessings are still in effect and will continue. And I really do think of his cancer as something that happened to him in the past.

But every time we hear the actual results of an MRI, I realize how much anxiety lies just beneath the surface. After we got the results today I cried, said a prayer of thanks in my mind, and hugged my husband and my little boy. I said to Teague, "You are healthy. Your Heavenly Father is taking care of you."

Our trips to Primary Children's always bring up mixed emotions. As we were walking in, I said to Quinn, "I hate this place, but it's a love/hate thing." I always remember what it felt like to live there for 10 days. The stress of not knowing what was next, the sleeplessness, the recovering toddler, the constant intrusions for blood draws and vitals, all of it. That's the hate.

Then, when we were in the neurosurgery waiting room this afternoon, ready to see Dr. Kestle, I remembered the love and the gratitude. My mind went back to the first time we were there, just hours after finding out about the tumor. We were helpless and desperate, and we needed someone to help our baby. They saved his life, and I still can't put into words what that miracle in all of its aspects means. I will never forget.

We had a longer wait time today than we usually do, which gave us more of a chance to look around and notice the other families who were waiting. It was not hard to pick out the little neuro patients. Some kids had an uneven gait or eyes that didn't stay straight or a gigantic scar or a wheelchair. Others were like Teague, pretty much unaffected.

I was reminded how easy it is to think, "Of course the Lord has taken care of my little one." It's easy to marvel that none of the side effects we were warned of have happened. But they do happen to people. We just dodged it because that's what Teague's Heavenly Father has in store for him at this point in his life.

I guess I'm just saying that I'm well aware that there's nothing we've done to make us any more special than those with broken little bodies. I'm sure that our prayers were no more fervent and that our faith was no stronger. Maybe it has even been less so because we haven't been tested as hard or as constantly.

What I do know is this: the Lord loves us all more than we know, and he blesses us all individually. Nobody ever hits a quota of trials in this life; no one is immune to the harshness of mortality. But everyone who will can be sustained and carried, guided, directed, and refined by the power of God.

Still a good patient. Just a little flinch when the IV went in, then he said, "It's all better now."

Here come the sleepies. Precedex slows the heart and drains color out of the little face.

Out cold with a warmed blanket and ready for the scan.

It's hard to wake up, even for a popsicle.

The More You Ask...

OK, so I think I'm done asking the doctors questions. Maybe I don't want to know everything they know. I've kind of learned some things about how doctors run things when you're dealing with something serious.

First of all, they know how to avoid being the whipping boy for the wrath and anxieties of freaked-out parents. They tiptoe around words like "cancer" and "damage." You know, we've all experienced it: when it's going to hurt like crazy, they say it's going to "pinch" or that you'll "feel some discomfort." OK. I get that. Keep the patient (or the patient's parents) calm.

Second, and ironically out of the same mouth they softened the initial blow with, they tell you the prognosis is worse than it is. I'm sure in some cases, the worst is true. But they go ahead and tell everybody to expect the worst so that they can have at least a few happy patients (or parents) for whom it was better than they said. They totally get the under-promise, over-deliver concept.

Third, they only tell you enough about said scary prognosis to get you to let them treat you. And granted, we would have made no other choice but to have Teague's tumor removed, and we probably would have gone ahead and radiated, even knowing what we know now. And it does seem that, looking back, we did get quite a bit of info on that consultation with the oncologist before we began treatment.

But now that it's over, and we're just doing the checkups, little bits of ugly information are seeping through the cracks of the doctor/patient facade. The fourth and final thing I've found is that if you ask them, they will tell you. After they've had their go at treating your illness as they see fit.

Don't get me wrong, we didn't get any bad news. I just contacted Dr. Watson today for clarification on some things he's been saying, and he gave me the medical terminology and descriptions, and they kind of freak me out and make me want to squeeze my toddler and cry.

We've been told in the past that sometimes scar tissue will appear on an MRI, and the only way they know if that scar is not new cancer is to compare it to the next MRI and see if it grows. And they told us at Teague's last appointment that there is some scarring. So I asked today, for clarification, if they had seen that before, and they have. So the good news is, Teague's scar from having the tumor scraped away was identical on his November and February images.

Now for the creepy, I-wish-I-hadn't-asked-for words, straight from the oncologist's e-mail:

"He’s got something called encephalomalacia – which is scarring and some atrophy of the brain where the tumor was removed."

Whaaa? You shrunk his brain? I knew about the scarring, but ATROPHY? And the clarification, after I asked just where that atrophy is:

"Teague has cerebellar atrophy.... This has implications mostly for fine motor skills and balance. Ballet is probably not in his future, but most other activities should be do-able."

Now, granted, the child has not shown any signs of having balance problems. Not significant balance problems, anyway. He has to be hours-past-bedtime tired and trying to run, and then you see a tilt. I just don't like knowing about the atrophy. Freaks me out.

Now I know why our dear Watson always asks about his balance; he's just seen an image of a cerebellum that doesn't look like it could hold a child steady. But somehow Teague's does.

Ah, I should have known I'd find the miracle in there somewhere.

Best News Yet

Today was Teague's regularly scheduled follow-up MRI. Once again, he's clean. Both his neurosurgeon and his oncologist feel that we can loosen up his schedule now. Dr. Watson said that doing another MRI in three months would be overkill. So we don't have to take him back for six months.

Dr. Watson has also lightened up on the gloom-and-doom speeches. Today he told us that because the brain is still growing (it keeps developing until about age 13 or 14), new cells will develop and help compensate for the slight balance issues we've seen when Teague is tired. He said he doubts that Teague's IQ will be affected at all. He even said that Teague is a normal, healthy kid.

Every time we get through an MRI, I feel a little more free. I go along, thinking I'm over it and that we're past it, and then suddenly another burden gets lifted and I just feel lighter. Oh, was I carrying that?

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.