Day 30: 30 September 2015

"My body gets crampy if we're in the house too much." -Louie

The day began pleasantly enough albeit early. Louie felt tired but happy to be home. His appetite was high but tolerance low. He must have taken a single bite of 15 foods. I'm delighted with those single bites, it hints the will is there. We had a battle of the slinky's (plastic v. metal) down the stairs and walked outside to visit our caterpillars. Louie insisted we protect one under netting so we can watch it form it's chrysalis and release it ceremoniously. Midday Louie complained of something "stuck in his throat" and was uncomfortable the balance of the day. Based on emails and calls with his team, the assumption is he has a sore on his esophagus (common with high dose chemo treatments) and it's likely we'll head back tomorrow for fluids and a check. No fevers yet and hoping for a day trip. At 11pm Louie came in to say that Levi was in his room. He said, "I think this is him" (a round breathing lump) and sure enough, our kitty had buried himself between his sheets. A sweet ending to the day.

30 days occurred; we observed some days linger and others transpire swiftly, but they all pass. With close observation, they are all markedly and remarkably different. This is a slice, a mere glimpse into an arbitrary 30 Days of Cancer. Allowing you into our microcosm, my ambition was for enlightenment, a bit of immersion and ultimately improved capability of understanding the absolute details of this life. Our hope is that this is a wee Lego of a much bigger set, but as we live it, even the smallest brick can be profound. There is a yiddish saying, "If not for the light there would be no shadow." Louie is my light.

Day 29: 29 September 2015

We are home! Louie felt exhausted this morning in the hospital and was on the verge of a nap. They needed to give him a shot (to boost cell recovery) and asked him if he wanted it before or after his nap. He popped up to get the shot knowing we could leave afterward (a blood transfusion for low hemoglobin and a monthly antibiotic under his belt already). He even got up to help me pack. A stop for ice cream, perusal of the new Costco flier (one of Louie's fave pastimes) and a 7pm bedtime. Bliss.

I can generally hold it together if conversations are on my terms and stay on the surface. I received a hug from a mother today who intimately and regrettably knows loss. A hug and a "hang in there" and I lose it. For both of our sadness. I picked Louie up pizza recently and the manager, a pediatric cancer survivor, handed me the pizza and asked about Louie and if he relapsed. It caught me off guard and I cried on the drive home. My suspicion has been the attention is what makes me uncomfortable, obscurity is warmth. I lost my mom nearly 13 years ago to stomach cancer. I'm now curious if my reactions to certain moments are because I'm missing that component; the compassionate, relentlessly constant, champion that was my mom. So the tears will sit, on the surface, undisturbed until they aren't. I can't think about it often, but doing this without a mom is unbearable, second only to pain Louie endures.

We'll stay on the surface while we can and enjoy being home. I can scarcely smell the cabbage.

Day 28: 28 September 2015

"Pee. Read. Sleep." -Louie (to do list before bed)

Today is day zero. The day of the stem cell "boost". 2.2 million of Louie's healthy stem cells intended to give renewal after two days of chemo were delivered in a very uneventful, ordinary manner (a syringe via his port, 6 hours of collection took 15 minutes to infuse). We watched the first Harry Potter movie where (this only just occurred to me) he learns he is a wizard. Hmmmmm. The stem cells were frozen and stored in a preservative (of course) which, there is no denying this, stinks. Literally. I'm trying to be cool but this room smells like canned cabbage (if that's such a thing). They said we'd adjust to it and in a few days it would be gone. Or maybe we'll be that family that's oblivious to our malodor. Fine by me. I would smell like this forever to have Louie. 

A definite improved day. He didn't get sick, was more alert (i.e. awake), had an entire box of raisins and some dry cereal and spoke more as the day advanced. If he feels good tomorrow, we will be homeward bound but they expect us back within days as it's likely he'll develop a fever and need antibiotics. The other option is to stay here until day 9 to 10 (many do). Here's to our home smelling like canned cabbage tomorrow. It's the new pumpkin spice don't you know?

Day 27: 27 September 2015

Louie slept most of the day. If he could have only eaten AND slept it would have better - a handful of raisins isn't quite enough (oy). His last "bath" was at 8pm which ensured he was at least awake for the Simpson's premiere.

Fortitude and stamina. They arrive when you need them but can also abandon you. When Louie is having a delicate moment, I either emote in unison or disassociate briefly so I can manage his intensity. And both are fine. Louie has absolutely seen tears, frustration, cross-examinations, confusion, anger, everything. I hide some, not all, because it's paramount for him to believe those emotions unobjectionable. There is a bitterness to life, we all see it, for him it's just earlier. No sense in hiding it in a shroud of feigned positivity, that would be utterly exhausting. Instead we try for brightness, exuberance, intuition and authenticity. But I must confess, there is no denying the handiness of a stiff upper lip now and again.

Day 26: 26 September 2015

The best thing I can say about today, aside from being together, is that it's behind us. Louie grew weary of the baths. His sentiment initially was amiable, even helpful, but during the last few he's been reticent and distraught, sobbing softly for the duration. Hospital sleep is restless, he wants to be home. He held down two saltines and a half of banana. Clearly the effects of the drugs are taking hold; zero appetite, nausea, irritability. We played some games, watched movies and napped, but watching the time crawl is not a pleasant or consuming distraction. I can attempt as much sunniness as I can muster, but when the will to laugh is absent, there are no ticklish spots. Another "rest" day tomorrow. 

Day 25: 25 September 2015

Okay. My standard answer to most inquires. It's a bit aloof at times, even esoteric, but seems to nearly always fit. Oh-kay - with a curious smile and slight shrug - leans positive with a bit of surprise. Okay - abrupt with downcast eyes and a hint of surrender - ventures into not exactly okay but rather a feeble attempt at bright side hyperbole. Even on a great day when asked, okay seems the only appropriate response. I asked Louie last week how he felt about everything on the horizon and his answer? Okay. People have pontificated for decades on the generosity of the word okay so I'll stop here.

So today was okay. It began at midnight, as they do, with the first of Louie's 'baths'. These entail every square centimeter of Louie to be wiped down, clothing and sheets changed as well as his chest port uncovered, wiped underneath and redressed. He received the same two drugs today; one emits from the skin and if it's not cleaned every 6 hours he will get a chemical burn. We call it The Royal Bath. He seemed to feel progressively worse as the day wore on but before we fell asleep he witnessed me miss two baskets and said "ha ha" (a la Nelson Muntz). Louie's okay.

Day 24: 24 September 2015

"I'm just not used to this." -Louie

Surprisingly, it was a mild day. I caught Louie smiling this morning and asked why. He said "I feel good today". I said "great", but I was thinking, cling to 'good' with everything. We checked in late morning, following a stop at the bookstore for a book (which he proceeded to finish within hours). He received the drugs early evening and we watched TV, played poker and fell asleep kibbitzing. He said to me he hates this place, chiefly because of how he feels when he is here. At 10 years old, I'm not sure Louie contemplated what was happening until we arrived in the room and, well, things started to happen. The cerebral and the physical coalesce for him here. He began asking which phase we were in, how many more months or years (gasp). I suppose we are in phase 2 (of 3 OR 4) and part 1 of (hopefully) 3. Everything is predicated on response so we architect a plan but it's truly wait and see. We absorb it day by day, and the milder the better, preferably. 

Day 23: 23 September 2015

"There are 3 things I'd like to do this weekend...." -Louie

This jaunt was just enough. A tense journey to make our flight (thank you 25 minute delay). As we started to descend Louie was smiling, happy to be heading home. He immediately had lunch on the sofa accompanied by old Simpsons episodes as I unpacked and prepared to repack for tomorrow, thoughts of the imminent days heavy on my mind. Louie feels good, he's hungry and lively, yet we are trying to mentally prepare for the impending seismic shift. I collected his pee today, the volume determines the amount of drugs he'll receive or something to that effect. I hear "mama" and I swoop right in.

Louie stated what he wanted to do this weekend (see a movie, visit his favorite coin shop and look up stuff on the computer). I had to remind him that we would be in the hospital through Tuesday (at a minimum). I'm such a buzzkill. This entire thing is.

Dinner with friends, breaking the fast, which was surprisingly easy this year. Everyone says that, have an easy fast. I'm hoping for an easy week ahead. Easy. We fast to make our souls and bodies uncomfortable, to feel pain so we may better understand. We understand.

Day 22: 22 September 2015

Louie spent an hour hovered over the sand trying to catch a wee fish in a plastic cup. Only if just to admire and possess it for a moment. He strategized, tried various approaches, angles, lures and finally caught one for a split second only for it to return to the ocean. The beauty in his concentration; ambition on vacation.

Beach time, a dolphin siting and lunch with a manatee (look closely above). In fact, we've lunched at the same spot everyday. I asked Louie today, on our last day if he wanted the same place and he said "up to you" and I said "up to you" and he said "okay the same". I now notice these glimpses of altruism in something as small as a lunch compromise, particularly given last year when our entire worlds revolved around him (more than usual of course). I think about his future and how he may emerge, as a child and an adult (selfless? will this fuel him? ambitious? empathetic? compassionate? or the opposite of those traits?). A future I never imaged would be debatable, but we are determined to try every angle until we catch our fish, and hold on as long as possible.

Day 21: 21 September 2015

"How do I dive down there?" -Louie

Key Largo was our destination purely for Louie to see a coral reef. And he did! We went snorkeling and as terrified as I was, seeing Louie slide into the water fortified me. Together we marveled at the coral below, pointed out the fishes and narrowly escaped a couple of jellyfish. People tell me that he is an inspiration to them. I'm just perpetually in awe. Unpredictability can take you by surprise, in all directions. Strong is not a word I would have used to describe Louie before. Now I see his quiet strength and underlying tenacity. Today he dared me, pushed me. He doesn't set out to break boundaries, he is just living as his intuition guides and becoming the person he'll be tomorrow. And helping us all softly shape who we are.

I panicked every time I saw a jellyfish and frantically waved or poked at Louie, he mildly said "next time you see a jellyfish, just say 'jellyfish'". A calm, quiet kind of strength.

Day 20: 20 September 2015

"This is what I like, the sand between my toes." -Louie

Rally cap. That's Louie. Only once today, before breakfast did he say he wanted to return home. After morning toast, we played in the sand, kayaked, went to lunch, visited a touristy shell shop, DQ break (true!) and had an evening dip in the pool (with plenty of lulls in between). As I watched Louie jump in the water and swim across the pool several times, it occurred to me, rally cap. He rallies from a deficit to sprint ahead. And he'll win this game. Whatever happens, today makes the entire trip.

Day 19: 19 September 2015

"We haven't even been here a day and I already want to go home." -Louie

Five days sans appointments so we impetuously planned an escape. We must be crazy, after this tumultuous week to be so ambitious as to plan a vacation? We don't hold onto envy. Our want is singular. But admittedly, watching others take sojourns during this time has been enviable. Vacations are one of those things, often the idea of them is much more supple than the reality. So here we are, Key Largo. He wants to see a coral reef.

The flight was delightedly non-eventful, wheelchairs allowing Louie to preserve steps. Today we nested in the room; read, played uno and watched a movie. We dined at the hotel at sunset, but Louie was homesick (I suppose our respite from the house in the past year has been minimal). I refuse to take this personally. Fortunately, I abide the swings and am hopeful after a day of rest he'll adjust. Before bed I asked him a question and his answer was a hasty and impatient "leave me alone" followed instantly by a very sweet "but you can read to me if you'd like". We laughed. Louie didn't quite get the hilarity in the contradiction but I'll smile and read and look out for the pendulum tomorrow, hoping for a swing.

Day 18: 18 September 2015

"Manageable, but preferably never again." -Louie

More tests today, echocardiogram and EKG, and although not enduring, based on his comment we gamely added to the pile of experiences where once is too much. It was stunning to see his heart beating on the monitor, the exact heart I sheltered at one time, listened to and watched with anticipation. Left me breathless, not with sadness, more so with reverence. Chemo in his ommaya port, likely his last for awhile. Spinal fluid still clear of tumor cells.

Louie joined school pals at the 5th grade tailgate. They are so accepting and genuine. I observe him waiver from being included to being on the fringe (he can't always do what they do). I loathe this lack of freedom he has; we're always in sight, watching but trying not to, allowing him this hint of independence and discovery but intruding just as he forgets we're there. I see his eyes look for us. Thumbs up? Good? Good. I wish this lingering behavior was a result of his illness, but in truth, we've always been like that. One child consented us this obsession (and maybe excuse) to enjoy all of it, every minute, to essentially hog him. Honestly, I've always wondered if I love him too much and therefore I'm too consumed with him. In a favorite book of ours the character is nurturing the last lemon tree and after alternatively overdosing it on shade, sun and water he gives it love, so much love that it can't survive all of the attention. Impossible. Right?

Book referenced: The Last Lemon, a Tale of Enlightenment by Lisa Swerling & Ralph Lazar

Day 17: 17 September 2015

Maybe sleep is the best medicine. I told Louie this evening how thrilled I was not to hear the words "bad day" from him today. He said he hasn't had an entire bad day in over a year (What? I've watched him have some pretty gnarly days but I'll go with it.); that a bad morning is often offset by a good afternoon and vice versa. And he insisted he won't say bad day on "good or moderate days". How does one invoke an abbrieviated memory on demand (and not in that annoying corporate way)? That would be a luxury indeed! I certainly can't shake his bad days that handily but, hey, this is his story.

Appointments this morning, tests to determine baseline of hearing, kidneys and the lungs as we gear up for this next phase of treatment. More tests on the docket for tomorrow. Don't worry they said, none of these drugs will likely affect anything long term other than hearing (fertility, secondary cancers and IQ are potential latent side effects from the previous batch). He may need a hearing aid later in life???!!! So?! The glorious side effect not mentioned in fine print is that he may have a 'later in life'. That's why we get up everyday. Grateful for this good day. This I hope he remembers.

Day 16: 16 September 2015

Bad day. Bad day. Bad day. Bad day. Bad day. Bad day. Bad day. Bad day.

This image was the most pleasant Louie looked all day. A restless sleep led to a restless day: napping once, throwing up twice and mumbling the words 'bad day' throughout. His general unsettlement was persistent and early afternoon he said "go somewhere". So we went in silence. I stopped to pick up one of his prescriptions during our futile drive. This particular drug is so highly regulated that it must be flown in and I'm required to take two surveys for each refill promising he won't have a baby (he's 10!), yet it's okay for him to ingest. Bad days are hard to watch and staying positive can be burdensome. I wish I could accept these days for face value vs. always contemplating if they are from the pills (he takes up to 10 a day) or the disease or just general exhaustion. For now, I'll imagine his bad days mean the disease is taking a swift beating. That idea is enough to keep us going another day.

Day 15: 15 September 2015

Total victory. We faithfully watch American Ninja Warrior and were exhilarated when two competitors made it past stage 4 for the first time ever. Louie accurately predicted both of the finishers, he must sense their endurance and fortitude (it takes one to know one I suppose).

Louie had early morning chemo via his ommaya port today (in his head) and we discussed with his team what to expect when high dose chemotherapy commences late next week. Long stays, intense days, infusions, infections...we'll put that in an alcove to deal with later. Originally his follow up treatment was to last one year. I vividly remember explaining to him that while a year was 10% of his life thus far, when he lived to be 100 it would be 1% of his life which was nothing. He said "But it's a lot now". Yes, as we remarkably move into year two. His astute oncologist addressed Louie today and said "We're doing this with the intent of curing you". We believe it, we must. Total victory.

Day 14: 14 September 2015

Two old guys walk into a Temple (not a joke). One says to the other "How ya doing Lou?" (really). And the other says "Every day is a gift".

Louie wanted to go to school so my husband and I went to Rosh Hashanah services. I always find this time of year the most invigorating and as the rabbi said today, it's the "chance of chances to begin again". And about the human need to be needed and all of this social media, emailing, texting mishegoss, etc.. is simply to remind us that we exist in the world. Louie and I walked to the pond across the street this afternoon laden with goldfish crackers (our challah is too precious to toss) and shared ways we want to improve. (Well I did. Louie must have confused this with wishes and didn't share for fear they wouldn't come true.) Patience, empathy, impact, strength. The usual suspects. I'd love to know what was on Louie's mind. The adage and intention of this holiday is to be inscribed in the Book of Life for the subsequent year. When we picked Louie up we said we made sure to get his name in that book for next year. And he said "How exactly does that work?". I wish we knew exactly.

Day 13: 13 September 2015

"I have a lot of things to ask for forgiveness, the problem is I can't remember any of them." -Louie

I find this absolutely unbelievable from Louie. Yet despite our excessive doting, let's call it confidence building, he is humble enough to realize we all have something that could use forgiving. On this first night of Rosh Hashanah, the beginning of a new year, as you celebrate sweetness and wishes of luck, it's a time of reflection of the previous year. Tashlich is my favorite part, you walk to water and toss in bits of bread representing the times you went awry. Louie and I usually wander across the street to a small pond and rather than itemize, we say what we'd like to do more of for the coming year. It's a beautiful ritual. We attempted dinner with family and made it past the gefilte fish round and onto chicken soup before Louie felt funny and we left. He got sick in the car (we were prepared) but requested a stop off for Teddy Grahams and felt better. It's ironic, we watched an old movie of him today when he was 3. And he mentioned some of the same foods he is currently eating, we all laughed. Back to the familiar. He did hop on an exceptionally unfamiliar hoverboard today. Being well balanced is a good thing, both literally and figuratively.

Day 12: 12 September 2015

This is nothing new, but there is so much comfort in the familiar. I read to Louie daily. And have for his entire life. Louie has been alive 3807 days. Pause. How lovely is that, to think about life in terms of days? I calculated that if I read to him anywhere from 30 minutes to (sometimes) 3 hours daily, it's likely I've read to him well over 100 days of my life, 3% of his life. I accredit Louie's ridiculous listening skills to this routine. As you know, you read the same book many times, to the point of memorization. Maybe you sigh and beg for a new book but think about why the same stories provide a certain coziness. Louie has been looking through his old picture books lately, musing over the stories we shared. I recall the lifespan of each, the most beloved pages and how each was acquired. There are sections of every book I read him that are difficult and tenuous to get through. Somehow the same old books can often carry a new meaning.

A nice day. We were surprised by Louie's energy. Catching up with Levi (the cat), Simpsons, lunch with friends, Lego and no day is complete (at least briefly) without DQ. And I got to catch up with some of my oldest friends, some I've had for over 14,000 days (please don't do the math).

Day 11: 11 September 2015

10.82 million stem cells collected. He did it. The goal was 8 million. So after another grueling day of hanging around the hospital, we finally arrived home late evening, after a stop off at DQ of course. I always imagined when I saw Louie in pain it could be from a heartbreak or a disappointment. Kids get sick all the time. They moan or throw up and you feel terrible and maybe, secretly, you revel a bit in their need for you and optimistically enjoy the snuggles and intimacy knowing when they feel better they'll be off and running. The physical pain we view is devastating. As long as no one says "you okay mom", I can hold his hand stoically and embolden him. And then rehash the moments for hours, days after. I recall being paralyzed as a new mother, how could I shield him from discomfort, essentially from life? And now I see him living; thriving sometimes and agonizing others, but living. And experiencing. And learning who he is and who we all are.