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You know we’ve become mighty good at seeing the bright side of otherwise dark situations.  It’s a survival mechanism, I suppose. So, we’re now looking forward to a “leaf peeping” trip, sometime in October.  Still trying to find the perfect set of days, in between class pictures and field trips for the kids, a very unpredictable trial for Mark (as in, the jury should be able to decide this one pretty darn quickly, but common sense doesn’t always prevail. . .), doctors’ appointments, board meetings, and so on and so forth.  Combine that with the fact that direct flights from Cleveland to Portland happen maybe once a week (and layovers with kids should be avoided at all costs), and we’re having trouble settling on the exact dates. But we will definitely go on this trip.

We are hoping (silver lining here) that either of our two sets of friends, one in Boston and another in New Hampshire, will be able to visit us during our newly planned getaway. Plus the kids will be more settled in their school routines (and more ready for a break).

Speaking of school, Austin finally started this past week, after a painfully drawn out orientation schedule for pre-schoolers (which I found brilliant Braedan’s first year, but now, in my fifth year as a preschool parent, I’m not so thrilled with). He is doing fabulously, by the way, so much more ready to separate from me this year than he ever was last.  He is becoming more independent and talkative by the day, and is in an extremely happy place.

Braedan, too, is doing better. His complaining about school has quieted to the usual murmur, louder at breakfast when he’s still half-asleep and I’m nagging him to finish his breakfast, put on his shoes, get out the door. His teacher, if not exciting, is really quite nice, something he has begrudgingly admitted. He started tennis lessons at school on Tuesday afternoons, which is helping.

He will also meet with the psychologist at Rainbow next week for a one-on-one session.  Mark and I met with her last week and we feel very fortunate to 1) have someone so readily available to help and 2) to have such a ready-made reason to seek help.  I think most six-and-a-half year olds would benefit from having a grown-up to talk to, to help them learn how to express their emotions in a healthy way, to teach them skills for de-escalating anger or handling disappointment.  In fact, I think most people any age would benefit from that. It’s not like they’re gonna sit around and talk about cancer for an hour; that just happens to give us a great excuse to get in the door.

So, all in all, things are fine. We have the wake tonight and funeral tomorrow; the kids will sleep at Mark’s parents since all the services are on the westside. They’re as happy about that as anything else. And Maine still stands, awaiting our arrival. Silver linings abound.

Braedan handled Austin’s first bout with cancer beautifully.  He made it through the entire thing unscathed, as if it was just another thing you deal with when you have a little brother. He was remarkably happy, well-adjusted and trusting.

The second time? Not so much.

I’ve been hesitant to write about this because I felt some need to protect him, as if his current struggles are somehow his fault or should be hidden. But they’re not his fault and hiding them certainly doesn’t help.

He is angry and frustrated and anxious and fearful and contrary and argumentative and a little bit lost. Most of all, more than anything, he’s angry. Angry at me and Mark, angry at Austin, angry at the world. The start of school, which I’d been eagerly awaiting because he loved it so much last year, has only made things worse.

I understand where he’s coming from and I completely understand why it’s happening now. It’s classic post-traumatic stress. He worked so hard for so many months keeping it together, being good because we were exhausted, being nice to Austin because he was sick. But he’s not sick anymore and we’re not quite so exhausted anymore and it’s a safe time to let that rage out.  And let it out, he does.

Of course, understanding the source of his anger doesn’t make him any easier to live with! So we’ve made an appointment with the pediatric psychologist at Rainbow who works specifically with families, and especially siblings, of children with cancer. I’ve also spoken with his teacher and the social worker at his school, so I remain hopeful that we will find effective ways to work through this.

Cancer casts a long shadow, that I know, and the shadow can darken the lives of more people than just the patient.  More than anything, I want my children to be happy. And as hard as we worked to make Austin better, we will work to make Braedan better. It’s his turn.

I’m still mad. Now I’m mad at food labeling laws for not requiring measurements of potassium and phosphorous on packages.  Oh, and I’m mad because the “Foods to Enjoy” sheet lists apple juice right alongside cranberry juice and yet the Cran-Apple I bought claims it has 15 milligrams of potassium (super) while the apple juice box claims it has 350 milligrams of potassium (definitely not super)!  Where’s the sense in that?

I’m trying not to be too mad at Mark since clearly the cran-apple-apple debacle is not his fault. And I’m trying not to be too mad at the boys because clearly none of this is their fault either, least of all Austin’s initial dislike of rice milk. But I am tired. I just want his life to be normal. I want us to move those marbles, beat this beast and then be done with it. I want fighting cancer to be our one Big Thing, our life’s challenge. And lately I feel like this is just the tip of the iceberg, like we’ve only just begun and there will always always be some major health crisis in Austin’s life and in our lives, like we will always be facing the next big thing.

But — deep breath (and sip of wine) — we’re home now and the boys are asleep side by side in Austin’s bed. When I go up, I’ll lift Braedan’s rapidly growing body and deliver him to his own, so neither one’s middle-of-the-night wiggles wake the other. And tomorrow we’ll figure out how to adapt our Sunday breakfast of bacon (Braedan’s favorite) and cheesy eggs (Austin’s) to fit the new diet restrictions. And I’ll search for more recipes to ensure he doesn’t live solely on buttered noodles. And the anger will fade and maybe the hope will grow. We are trying new things, after all, like reiki to improve kidney function. You should see Austin giggling and squirming while those hands float above him, trying to focus all that energy and heal that poor kidney.  There are reasons to hope.

So, somehow, as always, we will deal. With this too, we will deal.

Every time we are faced with a new obstacle, I feel overwhelmed and pissed off and sad and convinced that this one is it, this is the one that will bring us down, that will change who we are, who he is. And every time I’ve been proved wrong. Every time we’ve ended up okay.

I’m hoping the same is true this time.

I am furious right now about the kidney. I’m not mad at anyone in particular, I know it’s no one’s fault, and yet I’m mad at everyone. I’m mad at our doctors for giving chemo and radiation even though I know that is what’s saving my child’s life. I’m mad at myself for not keeping him super-hydrated all the time at home (even though no one ever told me to). I’m mad as hell as the nutritionist who handed me that absurd pile of papers today describing the “renal diet.” I’m really really mad at the renal diet itself, as that is the current source of all my anger and frustration and worry.

I know, silly, right? It’s a diet, just recommended lists of foods to enjoy, foods to limit and foods to avoid. But it is so terribly restrictive and, in my mind, so unhealthy. Take for instance, that fact that I can not give Austin whole wheat anything, but instead have to resort to white: white bread, white pasta — stuff my kids have barely ever had. I’m no perfect mother feeding her children all natural health food all the time; in fact, I often find my self plagued with guilt and worry that their diets consist too much of “kid-friendly” junk food. But I at least give them whole wheat bread!

But no, now he can’t have bananas or tomato sauce or cantaloupe or raisins or edamame beans or even baked beans. And the real kicker is that my Austin, who survives almost entirely on cheese, yogurt and milk, can now have no more than one cup of dairy — including soy — each day. Oh, I cringe when I imagine the battles that are going to take place in front of our refrigerator as he gets used to this.

But we have got to protect that kidney. We have got to do everything we can, even have knock-down, drag-out, biting-mommy-on-the-shoulder-until-she-hands-over-my-muenster fights in front of the fridge to do that. We need it to last two more years. At least, at least, two more years.

I was rereading some of my earlier posts, written in December as we were preparing for chemo, and I was struck by how pessimistic I was about the whole thing, by how very worried I was for all of us, certain that we were on the verge of disaster. And then I was struck again by how much better these past few months have been than we thought they would be, by the fact that we are still a happily functioning family, by the fact that my boy still races around with a smile on his face, full of energy and light and laughter.

Today in the hospital playroom with two cans of shaving cream: pure joy.

So maybe the renal diet will be the same way. Maybe I’ll find new recipes online and we’ll toss the string cheese and Austin will just adapt. And maybe, just maybe, the little kidney that could will do some more.

Things are going fine, except . . . a few weeks ago some angry patient on the pediatric psych floor above us purposefully set off the sprinkler system causing a flood and rendering a major portion of the oncology floor unusable. Oh yes. Because, come on now, this just isn’t designed to ever be easy. So all the patients are packed into the smaller two of the three “pods” on our floor: no playroom with train table and art supplies, no activity area with computer or Wii system, no common space near the windows for reading a book in the sunlight.  The poor nurses have no break room, nowhere to eat their meals or have a moment of quiet. And Austin has no circular path on which to run his daily laps.

Sooooo, everyone is feeling a little stir crazy, especially when the sun is shining brightly outside the windows and we’re stuck in our cramped quarters with medical supplies in towering stacks along the hallway walls and nursing students milling about not knowing what to do with themselves.  We do have a nice big room though, with plenty of room for car racing and fort building.

Which is what we’ve done in Austin’s moments of playfulness, in between his moments of sheer frustration at being tied down yet again (this visit did seem to come up quickly, didn’t it?).  Yesterday, he seemed to have accepted the schedule of brief unhooking from the IV pole and, while he eagerly awaited it, he didn’t rage against it.  Today . . . not so much.

He’s been very angry again, fighting and trying to unscrew the IV tube from his PICC line on his own. He even bit into his line. Not all the way through, but enough to cause a leak that surprised him greatly. He immediately felt awful and cried and cried, fearful (I think) about what would happen next, but it was only his fluids (thank god not his chemo!), so his nurse hooked up a new tube and he quickly melted into a much needed nap.

He awoke to his aunt and grandma who came to relieve me for a few hours.   I was so anxious for them to arrive so I could get myself out of there and into the (still cold but oh-so-welcome) sunshine, which just underscores what Austin must be feeling. He doesn’t get a three-hour break to go outside and run freely (which is what I did); he doesn’t get to recharge with a home-cooked dinner in his own home. Of course he’s mad. Who wouldn’t be?

Did I mention that this is exhausting?

Austin has been extremely feisty today and feisty is a bit of a euphemism. He is full of anger and bluster at being “hooked up” to his IV and insists over and over at the highest volumes that we unhook him.

Last night, when he’d finished his chemo and was about to be switched back to his fluids, the nurse granted permission for him to “run a lap” unhooked. Of course, as soon as Austin had the promise of one lap, he insisted upon two and then requested “five hundred,” which is his go-to number for everything (as in “500 more minutes,” “500 more days” and “500 more cookies”). His lap, which is literally a lap from our room down the hall and around the nurse’s station, was a joy to watch. As was the lap after that and the one after that. His running was interspersed with  skipping and jumping, his hands held high in an Olympic-worthy victory stance, prompting several of us bystanders to say (with due irony), “Wow, can I have some of what he’s having?”

But all good things must come to an end and I eventually had to scoop him up and return him to his room and his dreaded IV pole. This child did not give up his freedom without a fight. A kicking, screaming, hair-pulling fight. He then tried to unscrew his PICC line from the IV himself, not exactly the safest thing for a three-year old to do.

He is just mad, sick and tired of being restrained, tied down, shackled to this damn disease. He feels good and he wants to run free, not be forced to wait for Mommy to maneuver the pole over the door jamb or need to untwist three times in order to reach his desired toy.

The scene was replayed today, both with me and with Mark. Again involving kicking and screaming and, this time, biting. Neither of us begrudge him his anger. He should be angry. This sucks, what’s happening to him. And yet we continue to hold him down and calm and quiet and soothe so we can stick him with another needle or pump his body full of another poison.

We are all sick of being shackled to this disease.

Last Wednesday, before went to the hospital, Austin had a crying fit over something inconsequential, like what color spoon I gave him for his yogurt or whether his pants legs appropriately covered his boots. A few hours later, he sat in my arms as two nurses inserted an IV line into his hand and barely let out a whimper. I mean, he didn’t even cry. Mark commented with more awe than frustration about what a big boy he is for the “big” stuff and what a baby he still is for the little things.

Another way the little guy takes after his mother.

I have done a pretty good job keeping it all together since we received Thursday’s news, staying calm and not panicking until we have a real diagnosis. Somehow I manage to be alright with the big stuff. It’s the small stuff that gets me.

We had an Open House yesterday, scheduled to begin at 1. We’d spent the weekend alternately cleaning this house and spackling, sanding, priming and painting at the new house. Sunday morning, we were rushing around mopping floors and hiding toys. While Mark put the finishing touches on the house, I took the kids on a mad dash to multiple stores to buy a new rug for the back hall and some pumpkins to add color to our increasingly bare backyard. I had it all planned out so I would make it home with just enough time to put the shiny new items in their places, make sandwiches for the boys and change my clothes for our afternoon exile. And then Mark called to say our realtor was there and she had switched the start time to 12:15.

Without telling us.

Now, in her defense, I had said we were probably going to be in Chautauqua, a trip that was canceled for illnesses much more common than cancer. But still. A quick email FYI would have gone a long way.

And I lost it. Just went nuts, crying and dropping the f-bomb. I was in the car with the kids in the backseat, yelling to Mark on the phone. Not at Mark. At the realtor, but to Mark. After a pause, he calmly asked if this was about something more than the Open House. And I launched in again: “It doesn’t matter why I’m acting like this. It’s what I feel and I don’t need excuses to justify it! I am tired and I am pissed and I am sick of everything!” So he met me on the corner and took the kids on an extra long trip to the hardware store, while I went to the new house and took deep breaths while stripping wallpaper.

It wasn’t the end of the world, of course. (Although I stand by my insistence that she should have let us know, in town or not.) But I guess I needed some other excuse to let it all out. Sometimes it’s easier to be mad at your realtor for poor communication than to be mad at the universe for making your child sick. A little more concrete of a target, I suppose.

Oh and then, after I’d been hoping that maybe yesterday would be the day we’d get an offer (you know just to create some cosmic balance of good and bad luck),  no one showed up, except some curious neighbors. No one. Ugh.

February 2020
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February 2020
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