2,190 days

My baby,

Today you are six years old.  I know I say it every year, but once again, I have no idea where the time has gone.  It seems like only yesterday when the doctor put you in my arms, and I thought, "A boy?  I have no idea what to do with a boy!"  Despite my concerns, I think you have turned out pretty darn well so far.  It's hard to believe that you are the same chunk-a-bunk baby who basically slept for the first twenty-four hours of your life, making everyone but me concerned that you would never wake up to eat.  Once you did wake up and start eating, you basically never stopped.

You have done so many things in the last year.  You finished pre-school at the Montessori Academy of Valparaiso, and you truly thrived there.  I will always be grateful for the wonderful program and amazing staff who helped guide you through the last two years.  Because of everything you learned there, you were more than ready to enter Kindergarten this year at Flint Lake.  I love that you and Lottie are at the same school, on the same schedule, and riding the same bus.  I thought you might be nervous about riding the bus to school, but you hopped on the first day like a boss and you haven't looked back again.  You're on the twenty-seventh list of sight words already, so I am eager to see what happens when you have mastered all of the lists.  Perhaps you will start reading Camus next.

Your interests are varied as usual as you begin your sixth year.  There has been a surprising dinosaur renaissance which prompted you to tell me that your school has a "fairly decent selection of dinosaur" books.  You still enjoy Star Wars, Teenage Mutant Ninja Turtles, and anything that involves any type of weapon.  Sometimes I worry about your love of "shooting" but then I remember that you love to sit down with a good book just as much.  Everything in moderation, my love.  Scatological humor is still number one here as well.  When you're feeling especially naughty, you talk about poop or butts because you know it annoys me.  I have a feeling that annoying me thing will continue for the rest of my life.

You're a funny kid because you're very literal, and things are pretty black and white for you.  You and Lottie are about as different as siblings could be: that makes it very hard for Dad and me to ever know exactly what to do or how to do it.  I think you're breaking out of your shell a bit, though, and enjoying new things with an ease that you didn't have before.  You have really enjoyed your tae kwan do class, and I hope it's something you continue to practice.  I love that you're in class with other kids but the work itself is individual.

One of the most exciting things in the last year is that you outgrew your egg allergy.  A whole new world of food has opened up to you now.  Some of the things you have been really excited to try, but eggs themselves, whether hard-boiled or scrambled, are not your favorites yet.  Maybe someday.  You're naturally a little wary of trying things with eggs in them: after all, you spent the first five years of your life being told to stay away from eggs.  However, you're slowly starting to accept that you can try new things without the fear of getting sick.

You enjoy doing things by yourself like reading or playing with Legos®, but you hate to be alone.  You want someone nearby at all times but that person should really not talk to you unless you desire interaction.  Total paradox.  I think it's great that you're so good at entertaining yourself, though.  That is a quality that will serve you well throughout your life.   But don't ever be afraid to get out of your comfort zone and open yourself up to others; I'm sure you'll find plenty of people who share similar interests.  After all, you're an amazing guy with a lot to share with the world.

*I love that you still love to snuggle with me before bed every night.
*I love that you are such a great brother.
*I love the way you are kind to Mimi and PopPop's dog, Sally, and help us take care of her and how you constantly tell Judy that she's the best cat in the world
*I love how you sometimes chill out on the living room couch and stare at the trees out of the window
*I love the way you laugh with your entire body
*I love the way you have started to create your own things with Legos instead of just following the building directions
*I love your bone-dry sense of humor
*I love how excited you are when we get a new catalog in the mail, especially if the catalog has anything to do with Halloween
*I love your freckled nose and your gorgeous, long-lashed blue eyes


Dad and I are proud of beyond compare.  In my wildest dreams, I cannot even begin to imagine all of the wonderful things life has in store for you.  Promise me that you will always stay sweet, forever love to read, and never ever change who you are inside.

You are always my best, best boy,
Mom

Shrink, shrank, shrunk

Today was Trevor's first CT scan post-chemoradiation, and the first time he has been back to NMH since chemoradiation ended.   He had the pleasure of downing some lovely banana flavored barium concoction, waiting for an hour, then being scanned for five minutes.  We had a quick lunch together then met with the medical oncologist.

The news was great: the tumor has gotten smaller and nothing has spread.  YAY doesn't even begin to describe how happy we were.  Things are progressing as they should, and it looks as though surgery will be scheduled for sometime within the next four weeks.  He'll have a month of recovery time post-surgery, and then he'll do a second round of chemo for about four and a half months.  He won't have to go into NMH every day like he did for the first round, so that is already a big improvement.  Plus, think how awesome it would be if he could keep the hospital gown and dress like an escaped mental hospital patient for Halloween!  Right?

Having a better idea of when the surgery will happen has been, I think, a relief to both of us.   The last month of normalcy in our lives has been fantastic, but we both know it is just a holding pattern until the next step in the plan to kick this cancer's booty.   We are trying to enjoy spending time together, spending time with the kids, and doing typical family activities.  In the back of our minds, though, we know it's only a matter of time before it will all come to a screeching halt yet again.  It's difficult to live with the mentality that we need to get a certain amount of things done "before." First we wanted to do things before chemoradiation, and now we want to fit in as much as we can before surgery.   Sometimes it feels like we're living at a far more frenetic pace than we were pre-cancer, and we really should be slowing down to enjoy the quiet, unexpected moments.  

I'm trying to take the time each day to stop and be mindful of  the small things that make a life a life: Trevor making me laugh until I cry in the middle of a quiet exam room, Dallas holding my hand as we snuggle at night, Lottie's enormous, beautiful blue eyes watching me as we read _Harry Potter and the Chamber of Secrets_ together.  These are the things that truly have meaning, and these are the things I need to learn to appreciate.   If this stupid, horrible, ruthless cancer has taught me anything so far, it's that all I really need to be happy can usually be found within my reach.   If that doesn't make me one damn lucky gal, I don't know what does.   Well, that and a big lottery win.   I could make the Mega-Millions have a great deal of meaning if given the chance.  

He is the eggman, goo goo goo joob

For the first time in five years, Dallas is now one of the zillions of people in the world who can enjoy an omelet, a fritatta, a custard, or a lovely quiche.  The boy still can't have any dairy, but he is no longer allergic to eggs.

About a month ago, I took Dal in for a check-up with his allergist.  He hadn't been tested for his allergies for a few years as his doctor didn't see the point of putting Dal through unnecessary testing.  However, he did recommend that Dal be re-tested before beginning public school, and like the dutiful momma I am, I took him in.  I was anxious because the first test was a blood test, and children are typically not great when it comes to having someone stick a needle into their arm to draw bodily fluid.  I tried to stay very calm as we walked into the lab, and I promised the boy a trip to Target for a new toy if he could get through the needle stick without struggling or freaking out.  Before the nurse even got to us, I was sweating like I was standing in the Sahara Desert with no umbrella or water.  Turns out I could have saved all of my worry (and a jaunt to Target) because Dallas was fantastic.  He didn't move a muscle when the needle went it, and he even looked at the blood coming out and said, "That is SO awesome."

The blood test surprisingly came out negative for the egg allergy, so we moved on to the next step: the skin test.  The nurse made teeny scratches on Dal's arm and then dropped a bit of various proteins on the scratches to see if he would react to them.  A enormous hive popped up right away on the spot where the cow's milk protein had been placed, so we knew the dairy allergy was sticking around.  But once again, the scratch test was negative for the egg protein.   We quickly ran out that day to get an egg from a local convenience store.  The nurse did a fresh food challenge which involved putting actual egg white and egg yolk onto Dal's skin to see if it would react.  He passed that test with flying colors, and we made an appointment for the next step: the food challenge.  Dun dun DUUUUUUN!

Unfortunately, our first appointment was cancelled due to an emergency with the doctor.  Doh.  We rescheduled and went in yesterday, Friday.  Dallas couldn't have any sort of antihistamine for three days prior to the challenge, and he couldn't eat for two hours prior, either.  The appointment was in the Crown Point office (ugh) at 9:00 AM, so I woke Dal up at 6 that morning to shove some food into his face before it was too late.  (For those of you who know Dallas well, you understand the terror I felt knowing that he couldn't really eat the entire morning.  When he doesn't eat, he's like a combination of Godzilla, Denis Leary, and Bobcat Goldthwait.  It's ugly, really ugly.) The challenge went like this: Dal ate a teeny piece of hard boiled egg, was monitored for twenty minutes, then ate another teeny piece of egg.  Picture that for three and a half hours, and you have the gist of the challenge.  Dal complained that the egg was rubbery, but he willingly sent every piece down the hatch with no protests at all.  By 12:45 PM, we had confirmation that Dallas had outgrown his egg allergy.  Not only was he free to eat eggs, but he has to eat something with egg in it every day for the next two weeks.   Somehow I don't think he's going to be asking me to hard boil any eggs for him the near future, though.  He got his fill of those yesterday.

I made angel food cupcakes for him today, and it was a totally surreal experience to bake with eggs again.  I mean, everything I have made in the last five years has been egg- and dairy-free because I couldn't stand to ever have Dal feel left out of anything.  Separating the eggs for the cupcakes felt wrong, like I still thought I was going to essentially poison the kid by setting the cupcake in front of him.  Understandably, he's a little hesitant to eat anything with egg: we have spent the last five years telling him not to touch eggs and anything with eggs in it, and now we are basically forcing him to eat the incredible, edible egg.  Dallas is a by-the-book kind of kid, so this will take some time for him to get used to.  But in the meantime, I get to rediscover recipes that I have put away for years and try out some new ones as well.  The nurse said that outgrowing this allergy would make my life easier as far as food preparation, and I guess she is right.  Checking labels is no big deal, and cooking without the allergens is truly second nature now.   I'm just happy that a new world of food to explore has opened up to my best boy.

One and done

If I could pick one word to describe the mood chez Wells lately, the word would be TIRED.  We are all, for one reason or another, pretty fatigued around here.  The kids are tired from being kids: swimming, playing on the zip line, running around like crazy, and spending every waking moment outside.  We have had some wonderful visits with friends and family in the last couple of weeks as well.  I'm tired from keeping all of the proverbial balls in the air and from simply being around all of the kid activity.  And T?  T is tired from the pesky poison that has been running through him for the last five weeks.  

This last week, especially the weekend, was a difficult one for T.  The fatigue has built up over the weeks, and it's completely overwhelming at this point.  Unfortunately, the fatigue doesn't dissipate with even a full night's sleep, and one of the lovely effects of the chemoradiation is that T rarely sleeps more than three hours at a time anymore.  I know he is looking forward to these next recovery weeks so he can hopefully get more comfortable and manage to get some decent REM sleep.  

Along with the physical fatigue comes the mental fog.  It's hard to concentrate for very long, and the lack of sleep doesn't exactly help anything.  He tends to feel guilty that he isn't helping out more around the house or doing more with the kids.  No matter how many times I tell him that he has to rest, he resists until he literally cannot stand to be vertical any longer.  

But today, y'all, today is the day.  Today is the LAST day of this round of chemoradiation.  This is the last time for a little while that T will have to go into Chicago for his radiation treatment, and the last day he will have to swallow the horrible chemo pills.  Written down, it doesn't seem like such a big deal, but believe me when I tell you that we have all been waiting for this day for weeks.  Finally, T's body will have a chance to really rest and begin the healing process.  He'll need this time to physically and mentally prepare for surgery and the next round of chemo to come...but we're not going to think about that right now.  Instead, we're going to reconnect as a family and hug each other a lot.  It's time to think about school starting and Dallas's upcoming birthday and enjoying some much needed time together.  We'll get a chance to enjoy the now instead of always counting down the days until the end of treatment.  And that right there is something to celebrate.    

And then there were ten

Ten more chemoradiation treatments to go for my love.  If they are anything like the last eighteen, he is in for two more weeks of exhaustion and nausea, watching _The Love Boat_ and _Miami Vice_ in his recliner because he cannot do anything else.  Two more weeks of sleeping and more sleeping; two more weeks of a queasy stomach and Cream of Wheat.  Trevor has been really compliant and uncomplaining, and I'm incredibly proud of how well he is handling everything.

Sometimes I'm not certain the rest of us are doing so hot.  Although the kids are still fairly unaware of all of the details or just how serious this cancer is, they're both agitated and jittery.  Lottie has become even more worried about things than she normally is and full of "what if" questions.  Dallas is oddly more high-energy than normal, but it's edged with slight anger and irritability.  I spend a lot of time reassuring them that we'll all get through this and Trevor will be okay, but time is very elastic to little kids.  The thought that all of this will continue on into 2015 is more than they can understand, more than they can handle.  They want to know when Dad will be better, what day, what hour.  I can't give them those exact answers, and it makes me feel helpless, inefficient, and just completely worthless.  I struggle with keeping things normal in a really abnormal situation.  There still has to be routine and discipline, but how much is too much?  When is enough enough?

I spend the daylight hours trying to make Trevor as comfortable as possible and trying to continue with everyday life for the kids.  At night when everyone else is asleep, I have time to slow down and take a quick look inside myself.  Most of the days, I don't see a lot but a tired mom who has done a decent job of keeping all the balls in the air that day.  But every once in a while, I see a caricature of a pouty child who has a "why me" speech bubble coming out of her mouth.  I want to be in one of the happy family pictures I see on Facebook of people at the beach, playing in the waves, smiling with ice cream cones.  I'm not jealous of their good fortune; I really enjoy seeing how different people are spending the summer.  It's not the actual traveling I miss but rather the idea of a carefree time of togetherness.  Sometimes I do wonder why it had to happen to Trevor.  What did he do, what did we do as a family, to deserve to have to deal with this all?

 Logically, I know it's all random chance and happenstance: Our family wasn't chosen specifically.  We're not being punished or singled out.  This is just some rotten stuff that is happening in the now.  It won't last forever, even though sometimes it seems like it will never end, and it WILL get better.  We are lucky to have family and friends who do so much for all of us, and it's frustrating to me that I'm not in the position at the moment to give a lot back.  I yearn to rediscover my own availability to others and to find one single moment when cancer isn't floating just above each thought I have.  I want to stop living in the world of When This Is Over.  It'll be a lengthy journey, but I'll have to keep moving forward until I can find all that I seek.

The wheels on the bus

Things continue to go round and round chez Wells.  Luckily, Trevor seems to be feeling better this week.  Mind you, he's not dancing a jig when he wakes up in the morning, but he's not lying on the bathroom floor, either.  Any progress is a win.  Today is his twelfth treatment, so it's great to have him  in double-digits.  The fatigue still continues to overwhelm him, and he spends a lot of time resting.

There have been a lot of difficult things about T's cancer and treatment.  I think I have felt every emotion known to man every day since the diagnosis.  Living on such a fragile roller coaster is exhausting for all of us.  The enormity of it all tends to make the little things seem even bigger than they are, and that can put everyone on edge.  Well, it mostly puts me on edge.  I'm used to taking care of everyone and everything, and when I can't do that, I feel helpless.  I'm currently keeping all of the plates spinning, but I know my own is starting to wobble.  I am not feeling my best, I'm snappish, and I'm not sleeping well.  As selfish as it sounds, I have been neglecting myself and that's not helping anyone.  You know the whole thing about how adults are supposed to put on their own oxygen masks in case of emergency then help children?  My mask is lying on the floor in a battered heap.  I need to do a better job of taking care of myself so I can resume taking care of everyone else.  

I know that the kids have sensed the tension flitting around the house even though both T and I do our best not to let anything show.  L & D have been whinier than usual and there have been more tears than normal.  It's a really difficult line upon which we teeter, the line between telling the kids the truth and keeping them protected from what they just don't need to know.  They know T is sick and has to have treatments every day.  They know that cancer is a serious issue and that he can't do as much as they would like him to do.  Although they KNOW all these things, they truly have no idea what's going on.   I don't want them to have full understanding because they're too young to handle that responsibility.  (I'm an adult, and I'm not certain *I* am handling the responsibility all that well.)

I find myself speaking on eggshells, as it were, because I don't want to reveal too much to the kids.  L started a little fund in a glass jar for our next trip to Disney.  We had a trip planned for December, but considering T will be recovering from surgery and going through the second round of chemo we know the trip won't be happening.  It's heartbreaking to see L count the money in the jar, but I know it would be too much to tell her that we even had a vacation planned in the first place.  (To be fair, I can't quite seem to hit the 'cancel' button yet, so it's technically a to-be-cancelled trip.) Dallas still seems blissfully unaware of what is happening but he is definitely feeling it all, too.  He has been angrier than usual, melting down over things that normally wouldn't bother him and sleeping on our floor almost every night  It is pretty amazing to see how much kids can really sense even when they can't quite put a finger on what everyone else is feeling. Kids can be wicked perceptive...until it's bedtime and parents desperately want some time alone.  Then that incredible perception goes right down the drain.  I'm trying to keep life as normal as possible, but frankly, none of this is normal.

This whole situation is still a work in progress, and we're all learning how to deal.  I'm thankful that T and I are still making each other laugh even when we probably want to cry.  This is all new territory for all of us, but at least we have each other.

Just as an added bonus, here's a picture of Lottie and my niece Kate in Lafayette.

There's no crying in (beach)ball

What a week.

To begin with, the kids' schedules were completely thrown off because of the holiday.  All of their normal summer activities were put on hold for the entire week.   We had nothing planned for a week.  Some of you are probably thinking that it sounds like a great summer week full of spontaneous joy. You would be wrong.  Simply wrong.  Oh, we had some fun, but we also had way too much time together. 

The kids had been begging me to take them to the beach, so off to the beach we went.  The first fifteen minutes were fantastic like the scene from a movie where kids frolic and giggle with utter abandon.  At minute sixteen, everything fell apart.  The black flies started swarming and we all ended up with welts all over our bodies.  Staying in the water helped the fly situation, thankfully, but then there was the Great Beach Ball Incident of 2014.  You see, during the last few weeks of the school year,  Lottie won a prize package for something at school, and one of the things was an FLE beach ball.  She was terribly excited to play with the beach ball at the actual beach, and both kids had fun watching the ball bob on the waves.  (You know where this is going, right?)  At one point, the wind blew the ball into the water before anyone could grab it, and it started to float away.  I heard Dallas yell, and I took off after the ball.  Lake Michigan isn't exactly warm, and I was a bit worried about hypothermia as I chased a plastic ball deeper into the water.  After a few minutes, I realized I was never going to catch up to it, and I trudged back to the shore.  Imagine my shock when I found both kids crying - SOBBING - because the 99 cent piece of plastic was floating off into the great beyond.  I was so shocked at their reaction that I started to laugh, and that was not well received.  They cried harder and threw themselves on to the sand.  I promised them a new beach ball, but they didn't want a new one.  Lottie felt especially sentimental about that particular beach ball, and Dallas felt guilty that Lottie's special prize had been lost.  I tried telling them that the beach ball would have a great adventure out on the lake and maybe even be picked up by a passing ship.  Both kids looked at me like I was an escaped mental patient and continued to cry.  Just like that, the day at the beach was over.  We packed up our things and drove home.  I managed to keep up a happy, positive chatter on the way back to our house, but I noticed as I pulled into the driveway that the kids were still crying.  Incredulous, I said, "Seriously?  Is this still about the ball?"  Wrong question, Mom.  Because yes, it was still about the "you-know-what" that apparently we weren't allowed to discuss anymore.  That darn ball is like the Voldemort of our summer break. 

The rest of the week wasn't much better.  We saw a movie, played with friends, and hung out together.  A lot.  A lot of time together.  The kids played, the kids fought, the kids played, the kids fought, and then the kids fought some more.  In the meantime, T started his chemoradiation at Northwestern.  He is already feeling fatigued and nauseous from the treatments, and he's only three sessions in.  He started taking the anti-nausea medication prescribed to him by one of his doctors.  Unfortunately, he had a terrible reaction to that particular medication, and it ended up being more of a regurgitant than anything else.  He spent the entire Fourth of July vomiting and having chest and back pains.  He was out of it, I was terrified, and the kids could only think about fireworks.  'Merica.  He talked to a doctor at NMH on Saturday, and she prescribed a new med for him to try.  Fingers crossed that this one won't make the chemo seem like a walk in the park.

Thank goodness this week brings a return to some semblance of schedule for the kids and for me.  I think a little routine makes everyone feel a bit more secure.  The kids will be back to summer camp, ballet, and tae kwan do while T will start his first full week of treatments.  I'll be attempting to keep all the balls in the air at any given time.  Once again, I am grateful for my family and friends who have done so much for all of us.  I hope someday to be able to repay all of you individually for your kindness, concern, and help, but for now, please know how much we appreciate your love and support. 

Our eyes are on the prize, always on the prize.