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.