366 Days with Leukemia

Shuffling along towards the finish line

Category: Leukemia

Final Chemo!

Given the pace of our life these days, I suppose it’s fitting that I would forget to take pictures of E’s final big chemo. Our move, my new job, J’s new job, and the pending baby brother have all necessarily shifted our life away from the plodding routine of cancer treatment. Chemo and steroids was tightly scheduled into a week, otherwise full of meetings and the chaos of living in a dorm with 25 teenage girls. Now, a month later, I barely remember what we did that week, though I’m sure there was tons of TV involved. I can’t even remember if it was particularly miserable or if she tolerated the whole thing well or poorly. Vincristine, spinal methotrexate, five days of steroids. It happened and it’s done and if everything goes as planned, I may never have to write those words again. I’d like to think that we could celebrate the end of this era with more fanfare, but it looks like the celebration will be in the living of a life too busy for cancer.

I said I forgot to take photos, but really I got a few. Most of them have J in them, so I won’t post them here, but I managed to capture a well-deserved nap:

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And that night, when her bandaid fell off in the tub, I snapped a photo of what will hopefully be her final spinal tap markings.

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From where I’m writing today, we have four more days of oral chemo and one port removal surgery to summit. Onward.

2 years.

Our biggest problem on Saturday, July 20th, 2013, was how to manage TOO many birthday parties. How could we possibly juggle too many friends, too much fun, a day full of celebration?  Imagine the stress of such good fortune!  We decided to divide and conquer, J braving the early morning chaos of Jump Zone and I elected for the afternoon back-yard BBQ for one of E’s buddies. J ended up joining us at the BBQ after all, lured by burgers, beers, and good company.

While at the party, during some light conversation, I mentioned something related to E’s leukemia and my friend said, “Hey. Don’t you guys have an anniversary coming up?” I paused and thought.

Woah. It’s late July.

Woah. It’s July 20th.

I scrambled through my phone’s calendar just to double-check and, sure enough, our day of infamy had come and gone without hardly a second glance. Had my friend never mentioned it, I’m pretty sure we would have continued unawares.

The dark storm cloud of cancer dissipated so slowly from our life, that I’m not sure we even noticed once it had disappeared. We don’t Purell anymore. I don’t have bionic ears anymore that can hear someone sneeze or cough from 50 feet away. Grocery carts are no longer terrifying, germ-infested, wheeled death traps. We no longer require full body decontamination after leaving a store. E and her friends shove their grubby little hands into the same container of snacks, stuffing food into their own mouths, and occasionally each other’s. I don’t say anything and, actually, I hardly notice.

The storm passed and life is now the same old forest, but we’re more aware of the sunlight through the trees,  the birdsong, and the soft moss beneath our feet. I’ll probably never stop mentioning how a friend once told me that E’s diagnosis had put their own life into Technicolor (this is, at least, my 3rd mention of it on the blog – thank you Rachel!). Elsa’s cancer has been something of a drug trip, making the rest of our good fortune seem almost psychedelic. The mundanities of life feel like gifts. Plus, cancer has left us with the added advantage that, anytime something in our life appears challenging, we just remember “Hey. We did that? We can do anything.”

This isn’t to say that I walk around with my psychedelic sunglasses always on, exclaiming at the world’s immense beauty. J and I have our fair share of evenings spent feeling despondent and stressed over our long hard days, scary new jobs, and upcoming move. There are days where I can’t possibly answer another, “Why Mom?” or manage one more tantrum over the forbidden chocolate bars at the checkout line. There are still plenty of days that I spend longing for solitude and a day spent on the couch. I mean, we were actually stressed out by the thought of a day filled with too many birthday parties!

I guess the real point is that we live with less fear and less sadness than we did before July 20th, 2011. I always imagined that July 20th would visit me every year as a heavy burden, a solemn day of mourning for those months and years that we lived with such fear and sadness.  Here we are though, a measly two years later and 80 days from the finish line (!!!) and July 20th just floated by, light and soft. It was just a day with too many birthday parties, too many friends to juggle, and too much fun and celebration.

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Maintenance Cycle 6

Though I’m actually writing this late in July, I wanted to post some pictures from Maintenance Cycle 6. I haven’t missed posting a treatment visit yet, and I’m not going to start now with our second to last!

Maintenance Cycle 6 was delayed a week because of a fever/virus combo that left us both laid up for a week:

Our favorite ER, at our favorite time (2AM):
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We’re still working on keeping the mask on while she get’s her port accessed. At this point, maybe it will never happen:
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Big girls have their x-rays taken all by themselves. No mama’s lap required anymore.
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The morning after an ER trip looks like this:
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So, one week of sick was followed up by the start of Maintenance Cycle 6. All went accordingly. Second-to-last IV Vincristine. Second-to-last spinal tap. Second-to-last spinal methotrexate. Second-to-last steroid pulse. Woohoo!

I could write 100 posts about why we love E’s oncologist, but here’s just one simple reason. Kid doesn’t want to get out of her stroller, which she has wedged into an inaccessible corner of the room? No problem. He’ll just examine her, kneeling on the floor, squished between the bed and the stroller:

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Clinic activity today? Making a hammock for Baby JoJo in her IV pump:
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Sedated, but not asleep for the spinal. Dad’s giant hand makes it better:
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Once the seven days of steroid/chemo rage wore off, life returned to your regularly scheduled 3-year-old shenanigans:

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LAST big chemo visit scheduled for August 23rd and then we’re off into the treatment-free yonder.

April 14, 2013: March happenings

Since I missed out posting for the whole month, here’s a brief re-cap. Like I said in my last post, we’re happy to keep leukemia in the back seat these days. March brought us . . .

A trip to the casino for the State Finals Basketball Championship:
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Hours spent dressing up the world’s most humiliated dog:
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A fever that quickly went away and only cost us a few hours at clinic and a dose of IV antibiotics:
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Newfound drawing skills. Titled “Mommy and Baby.”:
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I’m in no rush, but she’s slowly, slowly, slowly weaning:
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Pure and simple, happy girl:
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“Organe Juice Please.”
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The girl. She climbs!
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Easter egg hunting:
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Bobo’s easter egg hunt motto: It’s not a real easter egg hunt, if there’s no danger involved.”
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Finally, flashback to January 13, 2011:

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April 13, 2013: Maintenance Cycle V

Oh how I have fallen! From a picture every day, to barely one/month, to losing the whole month of March! I started this post back in March, but we’re halfway through April now and it’s just languished here, unfinished. Mostly, we are just busy with life. Cancer takes a backseat now in a way I could have never imagined. Honestly, there are days that I almost forget we are doing this up until 11PM when J drags himself from the couch to mix nightly chemo. I sometimes even forget to carry Purell now. GASP. I know. We’ve grown a bit lax with our sanitizing efforts as E’s counts have continued to remain stable and as her oncologist assures us that we’re doing just fine. A little bit of exposure to the various coughs, sneezes, and runny noses of childhood isn’t a potential death sentence now – though it takes a lot of blind faith to just trust that she’ll be OK.

For awhile, I was planning on taking the blog down. It’s just too much of our life out there and the internet is too sinister a place for us (mostly, for E). However, lately, I’ve been getting quite a few emails from families saying, “Thank you for writing all this!” So I continue onward, cautiously. It would be a shame not to have this place to document this upcoming October (!!!) when this part of our life becomes just another part of family lore. “Hey, remember that time our kid had cancer?”

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IV vincristine, spinal Methotrexate, a 4 hour IVIG infusion, and 5 days of steroids are always a reminder that we are still doing this, though. Maintenance Cycle 5 got off without a hitch. Good counts, an easy port access, a complication-free spinal tap followed by a well-deserved breakfast, and approximately 500 episodes of Curious George. Elsa was Brave with a capital B at clinic, which she now proudly announces. Treatment is very different now than it was two years ago. She’s a kid getting chemo instead of a baby and the whole transition has been pretty wild. It wasn’t easy managing a baby with cancer, but I have to say that  I’m glad the majority of the experience is behind her and happened before she could talk. As she gets older and as our conversations grow more complex, it’s pretty  draining to hear her fret over how tubey is going to hurt or how she’s sick and needs to go to the HOPsital. She worries now.

If there were one picture that could sum up steroid week, it would be this:

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Despondent to the max. And if I couldn’t use that picture, it would be this:

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A constant buffet of choice snacks and the glazed-over look of a kid who has been watching TV for HOURS.

Thankfully, it’s only a week. One week of TV, sleeplessness, and 24 hour grumps really isn’t so bad compared to the 10 straight months of it that we lived once upon a time. The week passed and, when it was over and behind us, we tried to drink up the idea that we only have two more big chemo days. Maintenance Cycles 6 and 7 and then leukemia is history. Woah.

300/366: not real problems

First, I would like to acknowledge that this is not a real problem, BUT, we are so busy! Not really too busy, but it feels like a seismic shift happened in our life and I naively didn’t see it coming. Our days are stuffed to the brim, busting at the seams, leaking at the weak points. We spent so many months AT HOME, just the two of us. I don’t remember feeling that housebound (I’m a homebody anyway), but I reflect back on our life from July 2011 - April 2012 (when we started maintenance) and our days were so free. We made our own schedule, ate breakfast for an hour if we wished (or two), moseyed our way through errands and lived a generally structureless existence. The big event of the week would be a visit to Story Time at the library. Now, nearly every day of the week, we have some sort of out-of-the-house event that dictates the day’s schedule: nursery school, me going to work (!!), gymnastics, clinic, speech therapy. I know that structure, work, and school is what your typical American existence looks like, but it’s a huge change for us. We used to have 5 days/week to act sloth-like, laze about and plan hang-outs and play dates. Now, we are trying to fit in all of those friends during just 1-2 days. Again, having too many friends is also not a real problem.

So, now, instead of our friends’ faces showing up a couple times a month in this photo project, we’ve got two in one day! I told you, our days are stuffed to the brim.

Today’s schedule:

9:00 – 11:30 School!

11:30 – 2:00 Baby Holding

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2:00 – 3:00 Nap in the car

4:00 – 7:00 Couch-sitting and dinner with Sarah!

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Sometimes, I feel overwhelmed by the activity and the bustle and the structure. Even when it’s for the much, much better, sometimes I need some time to acclimate to change.  I’m not always successful, but lately, I’ve been trying to draw on something I learned in the marathon. I have to take moments each day to steady myself in the present moment, wait a few seconds until it sinks in and say,

“We are so lucky to be able to run this race. We are so lucky.”

264/366: the best guy

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Preschool = germs. Germs = fevers. Thankfully, it was low-grade and didn’t turn into a hospital visit, but we did keep her home the next day to keep and eye on it, in case she needed a clinic visit. J took sick-day responsibility so I could go to work as scheduled. From all accounts, they had a lovely day.

251/366: nursing through cancer

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I love to check my blog stats and see what search terms people are using to get to my blog. For the most part, it’s always some combination of “leukemia + bruising,” but from time to time, I will get a hit from a “breastfeeding a child with cancer,” and it always stops me dead in my tracks. That was me! I was the one desperately googling, “breastfeeding a toddler with cancer” a year ago. I don’t know what I was looking for, though I think part of me just wanted some sort of confirmation of my secret belief that breast milk can cure all. I was looking for a journal article entitled, “Mother cures her child of cancer through the sheer power of breast milk,” though I knew I would never find it. Or if not a cure-all, then at least, in some way, I wanted to know that breastfeeding a toddler with cancer HAD to do something helpful. No one studies breast milk very much though – at the end of the day, who wants to study something that’s not going to make the pharmaceutical companies big bucks? The amazing power of a woman’s body is just not something our culture acknowledges or values. [end of rant!]

Every time I see that someone has visited here because they were googling for breastfeeding+cancer, I just want to reach out and say, “Hi. I’m here. Tell me your story and I’ll tell you mine.” I want to share our tales of exhaustion, nursing through hospital stays, nursing through steroid pulses, night-nursing a two-year old, nursing a toddler every 45 minutes, after you thought your days of nursing-every-45-minutes were long gone. There have been many times in the last year that nursing has felt like the absolute ONLY thing I could control; a shining, golden light amidst so many toxic chemicals. We had a one-week hospital stay where she never once took a bite of food and yet, magically stayed well-hydrated and maintained her weight. Though I have often felt drained, frustrated, and mostly exhausted, I’ve felt like our ongoing nursing relationship has saved us – however literally or figuratively you want to spin it.

I don’t know if this will last for months or years longer – it does feel like it’s fading slowly. We’ve reached a comfortable place where we have some nursing rules that keep me sane, and a bedtime routine that does not involve nursing (finally! the promised land!). It’s a sweet rest in the middle of the day. It’s a moment of closeness after a  rough round of mom-toddler battling that’s left us exhausted and disconnected. It’s the last of our days (or months? years?) spent intertwined – the last of my days where our relationship is simple and physical and just requires that I sit and be and that’s enough. 

249/366: changes, changes

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Today was a rough clinic day for Elsa. Over her 14 months of treatment, Elsa’s port has been accessed over forty times and, each time, she’s gone along with the routine cooperatively. There’s the unpacking of the supplies, the wiping off of her numbing cream, the sterilization of her chest with a swab, the requisite 30-60 pause while we wait for the site to dry, and then the quick needle insertion, through her skin, into her port. I usually just gently place my arms over hers, a reminder not to move or contaminate the site. We sing songs, we look for imaginary bears on the ceiling, we generally have a good, tear-free time.

Not today. Today, I think her brain officially passed over the threshold from cooperative baby to smart, savvy toddler.

[pointing to the needle] “Mama. Dis hurt?”
“No baby – you have your magic cream on – it won’t hurt. It’s just your nice tubey.”
“Mama! No! Dis hurt!
“Sweat pea – your tubey never hurts. It’s just your tubey so you can get your good medicine and get the blood out.”
“Mama! No! No tubey!”

Chaos ensued. There’s always a room somewhere in the clinic with a child screaming bloody murder and J and I have always looked at each other with relief that we are not that family. Not today. Today, I was that parent with that kid. I haven’t really had to hold her down and restrain her since that first awful night when they stuck her seven times in an effort to get an IV line. This time, her tears and protest sounded less motivated by pain and terror. These were clearly moans of woe at her total loss of control, at her not being given a choice, at the injustice of the whole procedure. Thankfully, port access only take 60-90 seconds, but the whole ordeal made me feel like crap for the rest of the day. Afterwards, obviously shook up, her morning was full of tantrums and tears, as she tried to regain some semblance of control over the universe. Days later now, she is, of course, no worse for the wear.

I was bemoaning this turn of affairs to one of the doctors in the patient lounge and she sympathetically said, “We do the best we can to try to convince these kids that everything here is fun and normal – that their life with cancer really isn’t that out of the ordinary – that nothing here is scary. But, this is not normal. This is just not a normal life for these kids and it is scary sometimes and that’s something these kids have to cope with.”

Amazing that we made it this far before that realization really sunk in for any of us. Next scheduled appointment is in two weeks (it’s her big once-every-three-month chemo/spinal/steroid pulse – yuck) and we’ll enlist the Child Life staff to bring in some distraction (perhaps an episode of Dora?) for the next port access.

240/366: whole different game

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Though, some things never change, like getting her vital signs checked in her favorite vibrating chair [above], we had a slight deviation from the norm in Elsa’s treatment yesterday. Nothing alarming, just something different to shake things up a bit and remind us that we are still doing this whole leukemia thing. Usually, when I talk about Elsa’s immune system, I’m talking about her ANC number. A few months ago though, they also checked her IGG, which is an antibody that makes up another part of the immune system. She was fighting her second ear infection in a short span of time, and they thought that, despite an adequate ANC, she might be getting ear infections from low IGG levels. Normal IGG levels are over 600 and, for three consecutive checks, Elsa’s have been below 250. Given her persistently very low levels, her oncologist wanted to give her an IVIG infusion to help bolster her levels before she heads off to the germ factory, AKA pre-school. Plus, the IVIG infusions are protective if she does get an infection and will help her body fight off any nastiness more easily. IVIG does not come without risk though (severe headache, nausea, allergic reaction, kidney damage, blah, etc. blah, etc.) so I definitely had my usual dose of jitters as they started the infusion yesterday. Our nurses cheerfully tolerate my madness as I check and double-check her monitors, vital signs, and IV pump like a crazed lunatic  - or rather, like a nurse whose kid is in the hospital.

Thankfully, all went well and Elsa tolerated the maximum rate of infusion, allowing us to go home three hours earlier than we had anticipated. Going home early always makes you feel like you’ve won something big. Plus, the Benadryl they gave her prior to the infusion, to help prevent a reaction, also had the added benefit of shuttling her off into a snooze. She looked like this for most of the infusion:

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She has also mastered the art of remaining semi-comatose throughout the every-fifteen-minute vital sign checks and falling right back asleep. Perhaps Baby Bert’s  soothing presence helps?

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We haven’t had a long clinic day in a while and, yet again, Elsa impressed us with how much she has grown up! This time last year, clinic was an exhausting, mind-numbing circus of constant motion, whining, crying, activity, pacing. I remember holding Elsa in one arm and pulling her IV pole with the other, wondering at the children, in each of the treatment rooms, who just sat in their beds, coloring, watching TV, and just relaxing. I thought to myself, “Elsa will never just sit like that in bed and leave me alone for five minutes!” And so, like she will probably continue to do for the rest of our lives, she has proven me short-sighted. We spent most of yesterday in our room, hanging out on the bed, relaxing. She took a two-hour nap, she learned to stand on the base of her IV pole so that we don’t have to carry her [FINALLY!]  . . .

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. . . and speaking of being carried? The baby who used to have to be carried for 7.5 hours out of each 8 hour clinic day? She’s pretty happy to motor around on her own now, or at least sit in her stroller when she’s feeling lazy. I can’t even remember if she asked to be picked up even once yesterday. Not even once! Another perk of this new healthier, happier, more grown-up Elsa: Playtime used to be me doing all the work and initiating all the fun, desperately trying to convince her that there were worthwhile activities outside of nursing, whining, and being carried around all day. Now she’s the one setting up the tea party and tyrannically insisting, “Mo milk mama? MAMA!? Tea hot! Blow it! Stir with spoon Mama!”

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Finally, I leave you with this confusing picture. There is a shadow-play wall in the waiting room of our clinic which provides us with a lot of entertaining distraction. IV poles look especially mysterious in shadow.

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238/366: on the boat

What a difference a year makes! This was last August on the boat.

And now, this August on the boat:

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215/366: on my back

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For so long, she rode in the Ergo on my back because she couldn’t walk any real distances. Exhaustion and neuropathy made her into a giant, 30 pound, grouchy baby. If we were going to get out and explore the world, then the baby carrier was one of our only options. Now that she’s an independent, healthy little lady, she walks everywhere on her own mighty muscle. Except for today, when the novelty of riding on my back called to her and we went for a quick dog walk, stuck together like we used to be. (P.S. I cannot account for the face she is making.)

202/366: one year marked.

Ugh. I’ve been trying to write this post for a week  now two weeks now three weeks now forever!! For whatever reason, this has been exceptionally hard to slog through. Not emotionally hard, but puzzlingly difficult. Like math homework. And writing never feels like math homework for me. I guess it has felt like a great responsibility to mark 365 days down with a few words. I’ve been writing in my head for days (a year, maybe), but it all feels very disjointed and our story feels very small. Not unworthy, just small. For this one-year flag-waving, I’ve had a hard time figuring out how to acknowledge the simultaneous insignificance and magnitude of this whole thing. Writing this post has become some sort of behemoth task, so I think I’m just going to barrel through right now RIGHT NOW and be done.

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On the one year anniversary of your kid’s diagnosis with cancer, it’s customary to revisit that day and relive the moment when you heard the word cancer in the same sentence as your kid’s name. But, I woke up on the 20th of July this year just thinking, “Huh. So this is it? One year.” I’ve already written this to a few friends, so I’m sorry they have to hear it again:

I expected sad. I expected monumental feelings. I wanted it to feel like something.

The night before, I was at my Xtreme Fitness! (ha!) class and I was briefly seized by the urge to tell all the other participants, “Tomorrow is my family’s one year diagnosiversary!” I hadn’t felt like that in a while – like back a hundred years ago, when I would walk around Walmart, shell-shocked, and feeling like I had a severe case of tourrettes. I used to want to explode at every person I saw, “My kid has cancer! My kid is so sick!” “Can you believe it? Elsa? Cancer? I am a mom to a kid with cancer!” It was a fleeting moment though last night and I spared my fellow Xtreme fitness-goers.

I think that, partially because of this blog and also because of my going to therapy, I just don’t have a lot of really devastating feelings left about the whole thing. I used to walk around feeling like our life had been stolen away. I would stare at my bald, fat, miserable Elsa, mourning, “What have they done to you?” and feeling like her childhood had been snatched away. I’ve written about my feelings here and kept track of this whole journey so carefully that I’ve been able to dismantle most of those awful feelings.

Mostly, I just look at her now, wondering at her magnificent resilience. There’s a lot of language surrounding pediatric cancer that I never really identified with. There’s a lot of “battling” and “little fighters” and superhero talk. There’s a lot of referencing “the beast” of cancer and a lot of hating cancer and what it does to our kids. Sure, I’ve done my fair share of hating cancer over the past year, but from this vantage point, one year later, I’m not so busy hating and mourning anymore.  We have been so wildly fortunate throughout our last year of treatment, so complication-free, that this language doesn’t appeal to me much these days.

John and I sat talking in the living room last night about our wild good luck. For a moment, we both wanted to knock on wood and proclaim to the universe, “Yes! We know! You could dump steaming shit on us at any moment!” But we didn’t. We just sat and wallowed in our luck and rolled in the good fortune of our last year and filled each cell in our body with thanks that Elsa sleeps soundly in her bed, peaceful and growing and strong. Like I said, I’m not one for the language of pediatric cancer, but I did stumble upon a line lately which echoes in my head when I look at her:

“And though she be but little, she is fierce.”

(-A Midsummer Night’s Dream)

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Yes, there will always, always be a part of me that fears relapse and ventilators and ICU’s. I used to have this fear that someday, in an ICU somewhere, with my sweet girl kept alive on machines, I will pity my old, unaware self for not realizing the terror that awaits. I’m not so concerned now. If that terror awaits, I would like to look back on my old self and say that, aware or not, we had a really, really good time up until the moment that we didn’t.

My only regret is that I couldn’t learn this lesson without Elsa getting sick. In a moment of guilt, I lamented to my therapist that I feel so badly that it took Elsa’s cancer to teach me 1000 helpful lessons about myself and sometimes, I feel like I’ve exploited her sickness for my own good. My therapist, who is endlessly helpful, pointed out, “If you don’t learn anything and you don’t, as you say, “exploit” this situation for good, then is that better?”  Would it be better if we hadn’t learned anything and it was just suffering for the sake of suffering?  Well played therapist.

I haven’t been able to feel much of anything besides thankful on this diagnosiversary, mostly because Elsa is feeling and looking so healthy. We had a bad 10 days while she raged through her last chemo/steroid pulse, but the dust has settled and the steroid monster should not be seen again for another 2 months. By then, she will be exactly one year away from the famed land of Off Treatment.

A year ago, I would have never believed you if you told me how happy our family is today. I would have told you to go to hell and screw you for pedaling such bullshit. I would have collapsed in a puddle for the fourteenth time that day, moaning that surely, we can’t withstand this nightmare. I would have never believed you if you told me what it feels like to lay down next to my child, who smells of dirt, sweat, and sunscreen (life. she smells like life.) after  a long day of play. I would not have believed you that while she sleeps deeply, I only feel lucky.

We only feel excruciatingly lucky.

192/366: 3AM in the ER

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This kid makes it easy.

185/366: heads down

It’s not as bad as this, back in December, and certainly not as bad as this or this, back in August, but this round of chemo/steroids is shaping up to be pretty unpleasant for Elsa (and, subsequently, mom and dad too). The difference between the little girl we had three days ago is startling compared to the angry, sad, little sack we have moping around the house today. Hopefully, as the pain from the vincristine wears off and as we finish our five-day steroid pulse, we can return to our regularly scheduled life. For now, though, we’re putting our heads down and just trying to weather the passing time. Lots of reading books, lots of nursing, occasional doses of morphine and lots of lazing about.

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Inexplicably guarding a bottle of cumin (which she later spilled)

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The face she provided when I asked her to show me a happy face. Brilliant!

 

161/366: nyc

Went to Brooklyn for the weekend to prove to ourselves that we still got it. We’re still young and spontaneous and we can just pack up our kid and go . . . sort of.

Lessons learned: 1) Elsa is not a city kid. 2) We really love our life right now – all of it. 3) We can pack up and go! We did it!

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One night’s worth of cancer kid supplies!

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A rare moment agreeing to wear shoes.

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City Sprinklers!

** Don’t think, for a second, that my cancer mom brain wasn’t exploding with anxiety and trembling with fear, as she ran barefoot and naked through this NYC park. That’s part of all of this for us: Taking calculated risks. Letting her be a normal kid. Avoiding my impulse to wrap her in bubble wrap and keep her hidden away from the world’s germs and dangers. I hope someday, I will be able to sit back and enjoy this kind of childhood bliss, in the moment, the way it’s supposed to be enjoyed.

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Almost every morning now, after an uninterrupted nights worth of sleep, Elsa wakes up silently. I imagine she stretches and yawns, sniffs her blankie, and then quietly slithers off her bed to go see what’s going on in “mama dada bed.” She fumbles with her doorknob, jiggling the handle for a few seconds before she’s freed. She’s not the most graceful girl and I can hear her clumsy footsteps as she barrels down the hallway towards our room. She shows up at the side of our bed, smiling, and proudly announcing “Mama! Sun out! Sun Out! No Dart! Nana?” and I say, “Yes, sweat pea. The sun is out. It is not dark. Yes, we can do nana.” Just writing out our conversations like this, I realize we are living in a real life Dr. Seuss novel: Go baby Go. The baby goes. Wake Mama Wake! The mama wakes.

Since July of 2011, up until we started this maintenance phase of treatment, she woke up crying every morning. The weight of her body, awake and alive, seemed too much for her to bear and every morning started with eyes open, followed by emotional collapse. This new wake up routine? I can’t even adequately describe the lightness it has put into my heart and the weight it has removed from our shoulders. We start each day fresh.

She crawls into our bed and nurses sleepily for another half hour before demanding that we go free Stella from her crate and start our day. Our days are now full of play dates and trips to the library, walks outside, and exercise runs (correction: slow jogs). Meals spent sitting together in the living room, snacking and reading books. Stolen moments with my cup of coffee. Afternoon naps. J comes home in the evening and we fill the hours before bedtime with make-shift dinners, visits with grandparents, and more walks outside. Stolen moments in front of reality shows and televised dance competitions. The things that used to feel insurmountable (chemo, cancer, weak immune systems, sleeplessness) are all still part of our life, but the misery of it all has been exponentially lessened. I look at my iPhoto library and, while there are still photos of needles and IV pumps, they are fewer and fewer. I almost don’t recognize our life now, it’s so full of normal.

Elsa just had a wicked ear infection that turned into a fever and then, a trip to the ER for IV antibiotics. Four days later, when the infection got worse, we made a trip to clinic for another round of IV antibiotics and a new prescription that will hopefully work this time. Ten months ago, the thought of taking my baby to the ER, having a needle put in her chest, IV antibiotics run into an IV line that goes directly to the opening of her heart, and then waiting four hours for blood counts; surely I would not have believed that this would be just another, regular part of our life. In fact, later that day, I was busy chopping watermelon for a pedicure party I was throwing for my dear friend who got married the next day. I was standing there, chopping away, almost forgetting that we had spent the morning in the ER. Ten months ago, after an ER trip, I would have sat around all day, totally drained and mulling over the possibility that THIS TIME, she will get a port infection. THIS time, she will end up on a ventilator. THIS might be our very last day with her. Instead, I was chopping watermelon, stirring sangria, and then got my toes painted the most hideous imaginable shade of coral.

While we were in the ER, waiting for her blood counts and she was napping on the stretcher, J turned to me and asked, “Do you ever still worry about her?”

“What do you mean? Worry about her cancer? Worry about what?”

“Yeah. Her cancer. Do you still worry about her cancer? Worry that we won’t get to see her grow up?”

Gosh yes. I still worry about her cancer. The thought of relapse flickers into my mind almost every day. I think to myself that, perhaps we will think she is cured. Five years from now, she will be a happy, healthy seven-year-old and I will notice some bruises on her hips. Perhaps we will take her to her monthly clinic visit and her blood counts will come back with the dreaded news: Blasts are back. Perhaps we will travel this road again, only worse. And this time, she will remember. And this time, she will need a bone marrow transplant. And this time, her prognosis will no longer sound quite so cheery. And this time, she will suffer in a way I had never fathomed. This time, I will need to revise my Great Stuff/Awful Stuff chart.

Yes, I still worry about her cancer.

At some point in the past few months, though, something shifted. At some point, it really sunk in: I have no control. I can do nothing. I cannot prevent any of the myriad of awful possibilities that I imagine. At the very end of the day, I have only two options:

Option 1: Enjoy my life with my child and my family. Enjoy watching her grow while we can.
Option 2: Worry all the time. Worry so much that I forget to watch her grow.

That’s it. Those are my only two options. The contrast between these two paths has become as stark as the difference between our pre-cancer life and our after-cancer life. We will never get to go back there to the day before the water park. The day before the sun hat. The day before the first IV line. I will never get to look at my child again without a vague sense of desperation that I want to keep her. I only get to choose what I do in the midst of all this.

I don’t want to get all saccharine, “Life is Good” t-shirt on you. I don’t want to try to approach an explanation of how my kid getting cancer was this massively unfair [to her] life lesson for me. It’s just that, I am coming to terms with those things in my life that I can control and those things that I cannot. I’ve never felt very comfortable with vulnerability. My whole life, I’ve liked to say things like, “I totally failed that test,” just so I don’t have to feel disappointed or ashamed if I do really fail. For most of this journey so far, I’ve looked back at photos of our life from prior to Elsa’s diagnosis and thought, “God, I was so clueless. How could I have been so clueless?” I want to look back someday, after tragedy may or may not have struck and say, “Look. We did good. We lived so well.”

Which brings me to my blog hiatus. A lot of my mental energy is spent thinking about my two blogs and whether or not they are a good use of my time. I think a lot about my family’s safety and Elsa’s story and whether or not it is OK to have shared our life so openly. I wrote about it this before so I suppose this is like my Chapter Two to the question of whether or not I’m going to keep these sites going.

I’m trying to decide where to go from here and what to do about all of these stories and photos that I’ve sent out into the world so carelessly. I want our story to be available to other families who are making their way through difficult days with a sick kid. More than anything though, I want to do the right thing by my family and by Elsa.

A combination of really living and also, wondering about the safety of these blogs, has kept me from writing. It feels like I might need a blog hiatus. I have the option of making both blogs (this one and my 366 project) totally private or possibly password-protected, but I always stop when I see on my website stats that someone found my blog by googling “toddler with cancer.” I want people who google “leukemia bruises” or “toddler on steroids” to be able to find us. That feels important. Especially now that our life looks and feels so normal. I want families to see that “normal” is within the realm of possibilities along this path.

I think, for the time being, I’ll take the blogs down and go through them a bit. Perhaps, make some changes. Perhaps take some photos down. Maybe we will reappear, somewhat edited. A little more private. Maybe not.

Thanks for following along with us. Thank you for checking in. Thank you for every kind word and thought that you have sent our way. Having an audience here has been a large part of what has gotten me through all of this relatively unscathed. Know that we are happy and [sort-of] healthy and enjoying a real summer this time around.

April 25, 2012: Happiest baby on the block

I know everyone’s treatment experience is different, but I have to say that our maintenance experience, thus far, is EXCELLENT. Like, deserving an ALL-CAPS excellent. I think that, slowly, slowly, my mind is moving into a new space where I can just accept that, today, our life is very good. There is still that little voice saying, “Watch out for falling rocks! Fevers! Relapse! Infection! Death!” but, I can honestly say that, these days, that voice is weak and whispery. I think I am finally settling into a place where I understand my total inability to control our future and I am learning to just take comfort in today’s pleasures. I am certain I will still be gripped with terror from time to time. I will still look at my child and feel that sudden urge to fold her up into a tiny, portable package and shove her back in my swollen belly, ensuring that she is now safe, warm, and cancer-free.

As with any mention of my belly, I am compelled to immediately flip through 100 photos of Elsa, inside. Safe and warm. And look! She and Stella were besties back then too! Also, how did I stay upright with that belly hanging off there!?

Our daily routine and activities have not changed too radically since maintenance started. Throughout treatment, we’ve stayed as busy as possible and tried not to be too restrictive when her ANC is over 200. We’re having more play dates now, but our usual rounds of the library, grocery store, parks, etc. remain the same.

What has changed though is our daily dosage of enjoyment. Life with a two-year old is challenging, but feels surprisingly effortless now. Anyone who has seen me over the last two weeks knows that I can’t stop exclaiming, “She feels so good now! She must have felt so awful for the past 9 months!” She’s like a totally different kid now. Smiles in the morning instead of screaming. Running around the house instead of clinging in my arms. Stripping her clothes off in the park instead of, again, clinging to my body. Happy and chatty in the grocery cart at the store instead of yelling and impatient (or at least now the yelling is happy yelling). When we are out and about, I feel this incredible sense of breezy relief.

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just writing.

This is a long rambling update, much more about me than about Elsa’s progress. Just wanted everyone to be forewarned! Hopefully I can figure out a way to blog non-Elsa updates without filling up everyone’s email boxes. I’m hoping to do some blog rearranging so that Elsa updates are in one place and my other ramblings are elsewhere – I should have stuck with CaringBridge! Much like some people like to rearrange the furniture in their house, I like to rearrange my blogs, I guess.

I think that anyone who blogs about their children/family goes through this crisis eventually. Am I doing the right thing by sharing our life so openly? Am I putting my family at risk? Is this safe? Why am I writing here? When Elsa is grown-up enough to read this stuff, will she find her mother’s candor horrifying? Will she feel exploited? Will she feel that I invaded her privacy without her consent? I thought about these questions before, but some recent events have got me spiraling again – wondering if I’m doing the right thing.

I’ve mentioned here before, but I’ve been semi-active on the Leukemia & Lymphoma Society discussion boards. Soon after Elsa was diagnosed, while I was furiously googling, “My kid has cancer,” I stumbled on the discussion boards and they were such a relief. Families from all over the world, discussing all the things that my non-cancer friends couldn’t help me with: vincristine-related neuropathy, neurontin dosage, morphine, clinical trials, ER procedures, what to pack for the hospital, etc. It was a wealth of information that I desperately needed. My first post was something to the effect of “My toddler has leukemia and won’t stop screaming – Help!” I got a few emails from other parents, offering support, condolences, and hope. One mom, in particular, sent me some valuable information regarding pain control and a link to her Caring Bridge site, where she wrote about the last 2.5 years of her daughter’s treatment. Those pictures of Emma Grace – off treatment, healthy, vibrant, and with beautiful shoulder-length hair (!), were like crack to me. I would sit there at my screen, after my steroided-out, limping, screaming toddler had finally succumbed to sleep – I would sit there and stare at the little slide-show of Emma Grace’s pictures. I would stare longer than you are supposed to stare at a stranger’s child and cry and try and imagine the unfathomable possibility that Elsa might look like that some day. I would force J to come over to the computer and cry, “Look! Look! That’s Emma Grace! She’s better! Elsa could look like that some day!”

Emma Grace’s mom and another mother of a child with ALL have become my friends through the internet. Certainly not friends in the traditional sense, especially since we’ve never met, but people who I hold in my thoughts and with whom I correspond – sometimes about cancer and sometimes not. I have stayed active enough on the boards too, responding to parents’ questions with whatever knowledge I’ve gained over the past 9 months. Occasionally, I still ask questions myself and I always receive timely, thoughtful replies. Recently, though, there was an incident on the discussion boards that made me reconsider the time I’ve spent there. I won’t delve too deeply into the story, because it’s pretty long and very sad, but I’ll try to give a brief overview.

One of the mothers on the boards has been posting since before I even joined up back in July. She had a really tragic story and her daughter passed away from ALL early this year, after a horrific fight with many, many complications. Soon after the child’s death, the mother gave birth to premature twins, one of which had a heart defect requiring surgery. Again, very soon after, this same mother was diagnosed with advanced breast cancer. Each step of the way, it all seemed too much to bear. Everyone on the boards would respond with something to the effect of “We are praying for you. We don’t know why your family would be stricken with such misfortune.” She never asked for money – only prayers and support.

Then, just a few weeks ago, someone joined the boards and outed this woman as an alleged phony. The new board member claimed that the entire story was fictitious and she had some proof via other discussion boards where the unfortunate mother had posted with inconsistencies in her story. Everyone on the LLS Boards seemed to come to the same conclusion: If this woman’s story is true, then it is very tragic. If this woman’s story is fictitious then, thank goodness there is not actually a family carrying such burdens. Finally, everyone seemed to agree that, if she really made up the story, her life is almost equally as sad. Either way, sympathy seemed in order.

Initially, I was somewhat bemused by the whole situation – almost like it was some complex soap opera I was watching. As days went by, I couldn’t shake the story though. I kept returning to the boards, hoping this woman would return and explain herself – explain if any of it was true. Many who have heard this story from me have pointed out that, if she is actually writing fake stories, she could be back already, as a new parent with a new story. I’ve started to feel like the internet is this dark shadowland full of phony stories. And then I remember that my daughter is out there in that shadowland. Photos of her face and her body are available to the crazed, sinister masses. Some of our darkest moments as a family and many of our joys – they are all available and unfiltered.

Usually, from deep inside my anxiety chasm, where I’m sure I’ve permanently sullied my child via internet, I almost always come back to Emma Grace. I see myself sitting at my computer. On the couch, lies our sweet baby, bruised and swollen, angry and pained, implanted with medical devices under her skin, but given a good, fighting prognosis. My child has a good prognosis. My child has cancer. My child has cancer. That’s the name of the discussion board, by the way. My Child Has Cancer. I can put myself back there so easily and I can see those pictures of Emma Grace and I can remember how ravenous I was to read her story. Tell me how the story goes and tell me how it ends, Emma Grace. Tell me about surviving steroids and tell me about how much you love wearing pigtails now. Tell me about how you no longer take narcotic pain medicine and how you are learning how to read and write. Tell me how your teacher praises you for being such a delightful, normal kid, even after nearly three years of cancer treatment. Tell me all about it all and I want details.

I haven’t come to a conclusion about all of this yet. I can’t say that, Yes, I feel 100% confident that I’m doing the right thing by my child. I actually never feel sure about anything, to be honest. Certainly though, I am doing the best that I can. I’m writing and sharing all of this because I really do hope that other parents can sit down, a week after their child’s diagnosis and see Elsa. I want them to see every day of our journey, as much as I want to remember it as well. I want them to see that, in the morning the sun came up and, in the evening, the sun dipped back down and we are still here, having survived the interim. I stay on the LLS boards for much of the same reason. I ache to pay back some of the kindness that we have been shown. I long for this whole shebang (yeah, that’s right, I called cancer a shebang) to have meant something positive – whatever form that may take. If it doesn’t do us some good, then it was suffering for the sake of misery and that seems like an awful lesson to teach my child. I want to show her that we kept trying. Every day, we kept trying and, mixed amongst the grief and fear, we squeezed some fun out too.

Nor can I plead pure altruism here. My writing is very, very selfish, I can assure you. I can hardly understand a word of what goes on in my own head until I’ve written it down. As a child, when I would misbehave, I was always required to submit a formal apology, but I rarely uttered that apology out loud. 10 years old and, unprompted, I would sit myself down on the computer and write until I had myself truly convinced that, Yes, I’m sorry. Somewhere deep inside an 8 inch floppy disk at my father’s house, my apology letters are still paying penance.

My thoughts are jumbled and alarming in their seeming magnitude, until I’ve written them a beginning, middle, and end. I sit back and read and re-read until the whole mess sounds cohesive. Then and only then, as one of my cancer mom friends says, can I hang up my coat after a long day. Unfortunately for Elsa, her life is inextricably intertwined with mine for the near future and my quivering mass of thoughts orbits her as much as it does me.

This feels like it’s only a beginning of a discussion. I’ve really just asked the same question over and over again for 11 paragraphs. Is it OK to write here? Is it OK to feel compelled to bear one’s own soul to both friends and strangers, even if your child’s privacy gets in the way? I’m still asking.

April 11, 2012: Begin Maintenance Sequence

(In my mind, the title of this post is to be said in a robot voice)

I suppose that this is a feature of regular, non-cancer-life parenthood that is only magnified by our situation: Elsa was diagnosed with leukemia yesterday. Yesterday morning, I collapsed on the floor outside of the Operating Room and had to be scraped up and forced to walk slowly down the hallway as they cut her open. Then again, we have been doing this for years. Decades, even. My whole life, I have been a mom to a kid with cancer, even though she was diagnosed yesterday. Is someone studying this phenomenon?

Monday, we had our first clinic visit of Long-Term Maintenance. For leukemia parents, that is a pretty big deal. A sign that your kid has survived the initial half-year onslaught (for us, it was 8.5 months because of routine delays) and gets to pass “Go,” for another trip around the board. This new phase will last for the next 546 days (Thank you Countdown Clock for helping me to ever quantify the passage of time in my life). Her ANC was 1500ish, so she was cleared for her IV vincristine and spinal methotrexate. She also started a five-day course of steroids and a daily, oral chemotherapy called 6-MP. Only 546 more doses! Next week, we will start giving her weekly doses of oral methotrexate as well. Phew. The daily medication routine has gotten pretty epic.

Of all the things they do to her at clinic, including putting needles in her spine and chest wall, the only thing that she complains about is the numbing cream they put on her back, prior to the spinal tap. It’s the same cream she happily accepts on her port in the morning to prepare her for being accessed, but, for whatever reason, the cold cream on her back is an insult. I’m always amused that THAT is the worst part of the day:

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Her spinal was scheduled for 2PM because of the slow-as-molasses (gosh, I love that phrase!) pace of the lab/pharmacy. By the time we get her counts back and her chemo prepared, the day has passed us by. Of course, we had our requisite hour spent sitting on the edge of the sink, playing in our “pool.” Long about 1PM, after 5 hours without any food/drink/nap, this is the only activity that keeps her (and subsequently, me) from totally losing her mind.

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I’m obsessed with taking pictures of her with the reflection in the towel dispenser. Never gets old to me.

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I also can’t get enough of the silly drunk faces she makes as she wakes up from her versed/ketamine dreams.

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We also got some really excellent news about our randomization in the COG-AALL 0932 clinical trial. I’ll try to make this brief (I will probably fail) because it is wildly boring to anyone not actually going through this. Also, whatever I am spewing here is just my interpretation of what I have read. I’m far from an expert on this stuff, so if you are reading this because you are the parent of a kid with ALL, please check out some of the links I have posted (up there at the top) for any expert info.

The standard of care for pediatric ALL treatment varies somewhat depending on where you are treated. Some hospitals, like St. Judes and Boston Children’s (I think) and Children’s Hospital of Pennsylvania, have their own treatment protocols. For the most part, though, kids with ALL are treated with the standard COG (Children’s Oncology Group) protocol. For long-term maintenance, that standard of care includes once monthly steroid/vincristine pulses, once every three months spinal methotrexate, daily oral 6-MP and weekly oral methotrexate. The prognosis for these average-risk kids is somewhere over 85%. The treatment, though, is pretty toxic and a lot of kids end up with long-term neuropathy or other complications from the steroids/vincristine. So, we are enrolled in a huge clinical trial sponsored by the COG that is looking at trying to decrease the toxicity of treatment while still maintaining such high cure rates. From what I understand, a lot of European countries (Germany, especially) have found that children can get WAY less vincristine/steroids or NONE at all and still have equal EFS (event-free survival) rates. We have certainly seen short-term toxicity with Elsa, including neuropathy from the vincristine (for which she requires Neurontin daily) and a lot of pain/limping/awfullness from the steroids. Deep in my heart of hearts, I believe that this treatment is more toxic than necessary for these average-risk kids, so I am happy to have Elsa enrolled in this trial.

So what is our good news!? We were randomized to the arm of the clinical trial that administers the LEAST amount of chemotherapy: Arm C! She will still get the standard doses of all oral chemo and spinal chemo, but she will only be subjected to vincristine/steroids every THREE months. There is definitely room for some worry – I know that, perhaps you are thinking, “Is it OK to get LESS chemo?” Though we don’t know the answer for sure, there is definitely research saying, “Yes.” This clinical trial is based on quite a lot of research that says that, in Elsa’s particular risk category, it is safe to administer less vincristine/steroids. I think that I will always have twinges of doubt, wondering if, perhaps we should have dropped off study and gone with the standard of care. I wouldn’t be me if I didn’t have some twinges of doubt about something. Like I said though, I believe in this Arm of the protocol and, though the stakes are big (huge, in fact. MONUMENTAL, really), John and I agree that we are happy with our placement.

THREEEEEE MOOOOOONNNNNTTTTHHHS! Considering we have been on basically weekly IV chemo for the past 8.5 months, this is a huge, huge, huge change of pace for us. When they told us we didn’t have to come back for another two weeks (just to have her blood counts checked), I actually felt a little terrified. Two weeks without knowing her blood counts?! How will I know if it is safe to take her to the library!? To the grocery store? Once her counts stabilize, we will go down to monthly blood count checks: again, terrifying. All terror aside (because I wouldn’t be me if there wasn’t a little terror sprinkled on top), this is wonderful news and exactly what we had hoped for.

Now we just need to put our heads down and endure this steroid week – it’s shaping up to be unpleasant but a mere fraction of the steroid hell we’ve lived in the past. Our supplies of guacamole and goldfish are reinforced and I’m ready to run on just a couple of hours of sleep come Thursday-Saturday.

Maintenance Sequence Initiated!

April 2, 2012: just the facts

I have sat down to write a blog post almost every day this week. I have the drafts to prove it, sitting on my computer, languishing. I’m not sure what the hold up is here. Even now, I keep glancing at my phone, checking Facebook, recording calories in my calorie counter (lame, I know), playing online pictionary. I’m doing everything possible to avoid writing – an activity which usually brings me such peace and a sense of accomplishment. My brain is humming with activity, but, like my blog posts, I feel a bit like I’m languishing. Languish: To fail to make progress or be successful.

I’ll start with facts and if that’s all I can muster, then at least the facts are there. We were discharged a week ago after five days inpatient. It was actually a pretty painless admission – as painless as spending five days cooped up in the hospital with a two-year-old can be. Since we’ve been home, Elsa has emerged again from the fog of this last chemo cycle (Interim Maintenance II) and she has been delightful. That’s the word I always use to describe her when the chemo has finally leached out of her body – and it’s totally accurate. Once again, she let’s us know that there is a sweet, funny, smart little girl in there – stifled by eight months of chemo and clinic and pain. She’s still my Elsa, so she will always be a bit on the ornery side. And she’s still TWO years old – so pack a little more ornery in there. But, delightful? Delightful is totally accurate.

See? Proof:

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Oh! And another fact: We got some really great news on our clinic visit before last. I can’t believe it’s taken me so long to share this! Originally, I had always thought that the Maintenance phase of treatment would last two years from the day we started maintenance. I had calculated that we would be done April 2, 2014. Well, while Dr. Parikh was busying himself with spinal needles and sterile gloves and Jeannie was busy charting and double-checking chemo dosages, I mentioned that April 2014 off-treatment date. They both stopped for a moment and said, “No, No. She’s finished with treatment 2 years after the start of Interim Maintenance I. Didn’t we give you your off-treatment date?” Um. No!! Jeannie glanced at Elsa’s chart and handed us a little slip of paper:

October 10, 2013

October 10, 2013!!!!

October 10, 2013!!!!

That may seem like it’s still a long time away but it is seven months shorter than I had previously thought. Two fewer spinal taps. Seven fewer IV chemos. Approximately 238 fewer chemo pills at home. This is a BIG deal! Our life (really, MY life, in particular), is very much on hold until Elsa finishes all this nonsense. Every time I try to think of anything happening in my future, whether it be a career move, going back to school, having another baby (what!?), I stop myself. Just the thought of another inpatient admission (surely, we will have another one before treatment is finished) and all my personal dreams go out the window. I can’t hold a steady job when I’m needed 24 hours a day to push an IV pole. It doesn’t make sense to spend money on the grad school that I so desperately crave. Can you imagine having a tiny infant to take care of (not to mention TWO children to breastfeed) while living on the 8th floor of our hospital?

Please, please, don’t interpret this as my ignorance to the fact that I am L-U-C-K-Y beyond measure to be able to stay home with Elsa. I know, every day, that I’m lucky to spend this time with her. That being said, I’ve got some ants in my pants (who says that?) to make a life plan that includes just a little bit more for me and my soul.

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I wrote most of all this yesterday (Sunday) but now it is Monday and I’ve got more news, however tedious it may be to hear about blood counts. We were scheduled to start maintenance today but Elsa’s counts were way too low. They sent us home to enjoy another week of chemo vacation. Thankfully, this doesn’t affect our OCTOBER 10, 2013 end date (every time I say that date in my head, it’s like I’m screaming). Just less chemo overall, and I’m pretty sure Elsa’s body is down with that plan. Her ANC is only 264, so we are back on house arrest. She needs to hit 750 before we can even think about maintenance. We spoke with another family at clinic whose little girl is now done with treatment and they confirmed that their daughter’s counts took three weeks of chemo vacation to recover enough to start maintenance. Dr. Parikh told me, “Nothing to worry about,” – so as much as I’d love to worry my ass off about it, I’m going to put some blinders on and take his advice.

There we go. Blog post done. Just a little less languishing on my part.

March 23, 2012: less charming this time around

The first time I wrote about getting a pedicure while my cancer kid was in the hospital, everyone celebrated. You go cancer mom! Take care of yourself! Don’t feel guilty, just enjoy! Now? The second time around, I’m pretty sure it’s stopped being cute. I mean, who does this?! After a long two nights in the hospital, I just couldn’t think of a better way to spend my break time while J covers a shift at the hospital.

We are still inpatient. The big let down of the day was that we were sure we would be leaving today. Yesterday, her ANC struggled it’s way over 200 so we were just waiting for her to go 24 hours without a fever. This morning, she was happily still feverless when thy came to tell us that her ANC gave up its valiant effort and dropped back down to 106. Ugh. At this point in the cancer parenting game, I should know better than to get my hopes up over something as fickle as an ANC – but I did. So now we are stuck in our 8th floor sanctuary and she is scarily immunocompromised, but at least we’ve done this before. Goal of the rest of the admission: not to acquire any of the scary hospital bugs that are my invisible, constant tormentors.Stay away Staph. F-you Pseudomonas. Don’t even think of it C-diff!

This is what our room looks like to normal people:

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This is what our room, horrifyingly, looks like to me. Each yellow tag is a killer infection just waiting to jump from someone’s hands to Elsa’s port.

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Needless to say, it will be such a relief to get back into our own space with our own safe, benign germies.

J and I don’t even have to discuss it anymore- its just a given that we will handle her care in shifts. I do overnights and mornings (and sometimes afternoons since its a weekday and he has to work). J does afternoons and evenings while I go and do absurd things like have my feet fondled.

*Pedicure interlude: my Korean friend just happily informed me that my feet are too rough and he did “the best he could.” I told him that I don’t need to look fancy and his best is good enough.

Thank you to everyone who has checked in with us recently. I usually try to keep up with comments on the blog and reply to them but the wireless at the hospital is unreliable and makes WordPress impossible to use. Please know that we read them all and they are all little moments of joy in our otherwise somewhat tedious hospital life.

One fun tidbit of Elsa news: her speech has taken some sort of radical turn and she is chatting with us up a storm! I don’t think I’ve mentioned it often here but Elsa’s speech has been delayed- probably a combo of the whole cancer thing and two parents who always just gave her everything she wanted without making her actually ask. She has had early childhood intervention through our state with a therapist who comes and works with us every week on getting her talking. Just this hospital admission, she has started to string words together! Her first sentence? As screamed in my face during one of her many arduous, clumsy trips to the bathroom with me since I can’t leave her alone when she is attached to her IV pole:

“Mama! Pee pee lellow! Lellow pee pee mama! LELLO!”

Yes sweet pea. Yes, the pee pee is yellow. Very accurate. Thank you.

March 22, 2012: Back on the 8th floor

I intended to write a post today about all of my parenting insecurities in the context of having a cancer kid (so many insecurities!), but lucky for you, we are at clinic instead!

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On Monday, Dr. Parikh told us that Elsa has a double ear infection but that it looked like it was resolving. Guess not. We came in with a fever of 102.3 to have her ANC checked. If it’s under 500, we’ll be admitted. Thankfully though, it is still the ear infection! He says her ears look awful, so at least we know the source of the infection. Most admissions, there is some question in the back of my mind that maybe, just maybe, it’s a port infection (one of the worst possible things). We’ll take double ear infections any day!

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It’s now 7:00 and we are snuggled into our new, fancy hotel room here at Chez CCMC. ANC was 160 so we can plan to be here a couple of days, at least. They think her counts will probably drop lower before they rise over the magical 200 that sets us free.

As I sat down to write this, I have to say that I was bizzarely, deliriously happy when we arrived on the floor. The misery of our last hospital admission has taught us to be thankful [very, very thankful] to NOT be on isolation and sick ourselves. I’m not totally sure how we survived that last admission in one piece. Actually, you know what? Those kinds of, “I dont know how we did it” statements are really just bullshit because if cancer teaches you something (well, it teaches you many things), it teaches you that you WILL handle whatever it is that barrels in your direction. Still, our last admission was surely our worst thus far.

Now though, we have a hundred things to be happy about! This last week has been rough because she has been miserable fighting the ear infection and I have been so on edge, just waiting for this admission. I was so tired of obsessively checking her temperature, waiting for the fever. It was almost a relief to see the 102 and know that, finally, I could stop anticipating with dread. Plus, now that we are here, they gave us the biggest, most comfortable room on the floor that has a set of double doors to block out the noise from the nurse’s station. We are not on isolation and are free to roam the halls and use the family kitchen and playroom. Even the IV pole is great! They gave us one that has a little platform attached to it where I can rest my coffee in the morning as we make our morning rounds of the floor. Luxury! This is all so luxurious!

Ah see. . . Perhaps I should not have sat down to write. As I write, familiar feelings are creeping in to visit. Feelings like, “I shouldn’t write that things are going well. That’s such a risky move,” and “Her counts are so low that NOW, she is at risk for a port infection. Tomorrow could bring disaster.” “Don’t write anything down so that your future self doesn’t look back and wonder at your naivete.”

I’m sure I’ve said something like this before, but I sometimes feel like I’m in an empty, padded cell, yelling and batting invisible, threatening shadows. I plead, “I know it could get worse! I know! Please, please, please let THIS be the worst part.” I think I’ve gotten pretty good at snuffing these feelings out – but when I’m least expecting it, and especially when we are inpatient, my mind always wanders to the same place. I see her up in the ICU with a thousand clear tubes shuttling fluids and air in and out of her tiny body. The screaming in my head is deafening. I’m not totally sure how to snuff that out completely.

Oh gosh. Enough! We have an IV pole with a little stand attached and, in the morning, I will rest my coffee there as we walk the halls. Right? Yes.

Our day in the usual 1,000 pictures:

Dark-circled little worrywart:
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Worrywart gets examined – though I’m proud to say she is generally pretty easy-going with this stuff as long as we follow a couple of her rules.
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If I were to look back in my posts, I think I could find this exact same photo, wearing the exact same jammies!

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For a little change of pace, we ventured down the hall to the 8th floor waiting room to eat some goldfish with Baby Dollie (really original name, I know).

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Trick of the trade: Whenever admitted to the hospital, BRING PILLOWS! As many as you can stand to carry.

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Goodnight!

March 11, 2012: Relatively smooth sailing

Our clinic visit on Thursday went well. I hesitate to say it, but I think Elsa has turned some sort of developmental corner where she actually understands now that she can’t eat or drink and this understanding has brought us both peace. When we started this whole crazy ride, spinal tap days were absolute hell. Telling an 18 month old on steroids that she can’t consume large quantities of food for 6 hours is a totally heartless, miserable task. The day was spent weathering storm after tantrum after miserable breakdown. At the end of the day, I would feel like I had been in a rock tumbler for hours. Now, Elsa asks to “eeeeeat” or do “nana” and I simply say, “We can’t eat or drink until after Dr. Parikh puts the medicine in your back,” and she just shrugs and moves on to something else. Sometimes she asks to eat and I say, “Not until Dr. Parikh does what?” and she smiles and points to her back. Amazing! Granted, she asks to eat 15-30 times during the waiting period, but each time, when I explain to her that we have to wait, she quietly accepts her situation. I know this sounds painfully simplistic, but life with a two-year-old is all about these seemingly tiny, incremental shifts in their being that usher them forward out of their baby-ness and into being a kid. In the daily grind of our mom/daughter life, these shifts bring about little earthquakes that shake up our whole routine. This time, the change is for the better.

So Thursday was relatively easy, but, unfortunately, Saturday morning, at about 3AM, gifted us a fever of 102.2 and a trip to the ER. As an ER nurse myself, I find it especially difficult to bring my kid in for just a fever. I have seen hundreds of patients who bring their kids to the ER for a simple fever and the question [that I only ask in my own head] is, “WHY!?” “Why on earth would you bring your kid in for just a fever!? Keep them home. Tylenol. Hydrate. Snuggles. Done!” But to the ER we go, anytime her temperature is above 100.4. Doctor’s orders.

I was thankful that I didn’t see this fever coming though. Some nights, she feels warm to me before bed, so I spend the entire night tossing and turning, repeatedly checking her temperature and trying to refocus on some meditative tricks I have that distract me from my anxiety. I go through the alphabet from A-Z, thinking of words in Spanish. I go through the alphabet A-Z, naming animals. The anxiety I have about the possibility of an ER trip is killer. The actual ER trip, itself, is usually not as bad as the anticipatory anxiety.

Now for some other things for which we are thankful. Throughout this whole BS cancer thing, J and I have found it immensely helpful to constantly – and outloud – acknowledge the things that make us lucky. See, I even made a chart about it: Great Stuff/Awful Stuff So first off, whenever we have to go to the ER, we call the on-call oncologist and they make sure that the ER knows we are coming. The minute we walk in the door, they see Elsa’s little bald head and we get VIP treatment: ushered straight to a room, avoiding all the other kids and their germs. A nurse is in our room within minutes and Elsa’s blood is sent to the lab within 10 minutes of our arrival. So far, Elsa has never made a peep about being accessed in the ER – even though it is not her beloved Jeannie down in the ER.

Since CT Children’s Medical is a pediatric hospital, we don’t have to worry about all that scary stuff that goes along with a regular ER: drunks, trauma, cardiac arrests, etc. As an ER nurse myself, when I see a pediatric patient coming in, I run for the hills, hoping another nurse will get the patient. I am terrified of pediatrics. My tagline at work is always, “I’ll deal with all your drunks and change all your adult diapers if you will take my one pediatric patient.” Their tiny bodies, tiny medication doses, and terrified parents have always intimidated the hell out of me. Granted, since Elsa got sick, my feelings about pediatrics have been changing, but historically, I avoid sick kids. At CCMC, we never have to worry about getting a nurse or doctor who secretly hates pediatrics (like me!). Everyone there specializes in the wee ones and that makes a WORLD of difference. They actually like being around sick kids – go figure.

So this particular trip, we were there for about 4 hours total for a blood draw, a dose of IV antibiotics, and instructions to come back in 24 hours if she is still febrile. Her ANC was 1900 (it is elevated because she is clearly fighting off something) and we don’t have to stay unless she is febrile with an ANC less than 500. So far, we have managed to stay home and she does seem to be feeling better.

And now for the requisite pictures from our Thursday clinic visit:

Hiding in the curtains:
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Getting blood drawn is so much fun!
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Playing in the sink is serious business:
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March 8, 2012: tiresome

Just revving myself up for a long, long day of clinic tomorrow. 9:00 blood draw followed by interminable waiting to hear if we have “made counts” in order to get chemo. I’m curious to see if our recent bout with the family stomach bug has plummeted her immune system or if we are in the clear. Then, more interminable waiting while pharmacy makes her chemo and then [thankfully] triple and quadruple checks it to make sure there are no medication errors. I can already hear myself saying hundreds of times, “No sweetie. You can’t eat until Dr. Parikh gives you the medicine in your back. Sorry. No water. Sorry. No.” Then, 1:00 spinal tap.

I don’t cry during spinal taps anymore (you’d think I’m the one getting a needle in my back!). In fact, according to my records (I love, love having records – in fact, it’s becoming an obsession), I stopped crying sometime back in September. Again, according to my voluminous records, this is her 11th spinal tap.

Hopefully, by 3:00 tomorrow, I will be able to partially relax some of the muscles in my back and shoulders and can slowly start to begin the mental decompression process. I want a decompression chamber like the deep-sea divers get when they surface too quickly. Somebody immediately start a non-profit, “Decompression Chambers for Cancer Moms.” Find me tomorrow by 5pm. Bring a masseuse. Also, for a girl who wears jeans and a white t-shirt ever day, I’m weirdly partial to pedicures. And margaritas. . .

I felt like, perhaps, I had more to say about all of this. I’m sorry the blog has been running pretty dry these days. This whole cancer thing is getting tiresome for all parties involved.

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February 28, 2012: A better kind of busy

Usually, I would beat myself up a little for updating so infrequently, but I must say that the reasons for my writing absence are all great.

1. We are busy! Elsa’s ANC has been high enough that we are exploring the world with very few restrictions right now. Aside from having clinic/chemo every 10 days this cycle, and going through 12 bottles of purell each week, we are living a normal, fun life.

2. I am busy Losing to Win! I joined a totally absurd (in a good way) weight loss program at the YMCA (Lose to Win!) with weekly personal training / weigh-ins and it has been just enough motivation to kick my butt into a healthier gear. I’m spending a lot more time thinking about/planning the foods that we eat and I’m making time for work-outs, even if it means peeling off some of the velcro that sticks Elsa to my body most of the time. Elsa hasn’t had much of a problem with the de-sticking process; the better she feels, the less she needs me so physically. Everyone involved feels better, I think. I’m packing in as much self-care as I can, while the waters in our life are calm. J, too, is trying to get to the YMCA more frequently and we are taking turns taking alone time for ourselves. Next phase of the re-building process should probably be that J and I take time for ourselves, as a couple. Slowly, slowly, we’re working on it.

Life is great today. I have such a hard time not adding the caveat, “The other shoe could drop any second! She could be sick tomorrow! I know everything can fall apart at any second!” That’s something I’m working on.

Life is great today. There. That’s it. Done.

………

Wait. Not done yet. Here is a funny little montage of approximately 45seconds in the emotional life of Elsa. If you’re wondering why we are eating hot dogs in the car, it was a little too windy for the picnic I had planned at the park, so we ate in the car instead. Minus the brief meltdown over a stolen goldfish, it was a lovely picnic (I couldn’t figure out how to make it bigger, but if you click on it, a larger version appears):

50/366: grammy!

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Wow. I have sat down to write this post everyday for the past 5 days and every time, I manage to get a few more sentences down. The great despair of my blogging is that I’m never able to finish a post in one sitting! I’m a little bit of a perfectionist and I like my writing to have some semblance of “flow.” Unfortunately, my days are not really conducive to any sort of “flow.” Such is life with a two-year old.

This post started out saying, “Everything is great!” and then it segued into, “Everything is great but there is a shortage of cancer drugs, and that is so scary!” and then it turned into, “Looks like the drug shortage will hopefully resolve before it affects us, but thank you for writing your legislators on our behalf!” Now, the post is just a mess.

All in all, we’ve had a couple of great weeks. We’ve had a schedule packed full with play dates, YMCA visits, library story-time, and playing outdoors (thank you 50 degrees in February!!). We even went to the children’s museum last week [i.e. the germ palace] and, so far, we haven’t had to pay for it with a fever. Clinic visits have been long but uneventful and tolerable for all parties involved. Interim Maintenance #2 is treating us well. Even more exciting is that frontline treatment is almost over! We have three more appointments in this cycle (IM#2) and then we will start maintenance. The start of maintenance is a little bittersweet because she will have to contend with five days of steroids, but it’s a pretty big deal that we will be starting the LAST cycle of treatment (ignoring the fact that it is a 2-year cycle).

I have so much more to write! How do professional bloggers with kids find the time to write!? Less sleep? Maybe I should sleep less . . . ? Elsa’s waking up from her nap, so I guess I will just leave it here for now or else deal with yet another unfinished post.

Finish.

February 4, 2012: Recycling Day

I can’t decide if keeping track of our life in days is relevant any longer.  We passed the 6 month/Day 180 mark without even a nod. I looked back at my calendar to see what we did on Day 180 and all it says is “Recycling.” I think we did, in fact, put out the recyclables that day. I wish I could climb through a wormhole to 6pm on July 20th and whisper to my crumbled, shaking self,”Six months from now, the most exciting thing that will happen in your day is that you will take out the recyclables. Shhhhh. She will be alive in your arms in six months. The day will be so boring that you won’t even realize you have six months under your belt.”

I look back at myself – my old self that existed before July 20th. I look at pictures from our old life and they are not real. We never existed in that place without leukemia. Those 17 months were a dream and I’m not sure that I was ever that mom. There I am, sitting on the bed, brushing Elsa’s sweet straggly hair and sniffing the crook of her neck. Here, let me try that wormhole again: “Stop!” I yell. “She’s sick! She is going to be so sick!”

I don’t just try to move back in time, either. When I’m not gazing at photos of my old self, I’m desperately trying to peer around the corner, into the future. I’m horrified at the thought of being caught so unawares again. If I adequately prepare myself for every possible outcome, then my future self will never have to look back morbidly on my old self and say, “Poor girl. She never knew what was coming.”

Six months in and all I’ve got to show for it is an obsession with wormholes. No, No. We have so much more to show for it. That’s just not fair to say.

Now, I feel like I need to valiantly defend myself here against an onslaught of criticism (which, by the way, I realize is, largely, in my own head).  I know I’m supposed to live in the moment. That’s what cancer does: It wakes you up every morning, hammering your brain with a litany of, “Enjoy this day because I could take it away any moment, ya know.” I realize that I cannot dwell on our past or all the unknown possibilities in our future. I also know that I’m not supposed to get caught up in the stories of other, sicker children. Truly, it is unfair to those children and their families for me to waste our good fortune. I know! I am drowning in the guilt that comes with this knowledge. I know. I know. I know.

It’s just that, while I’m sniffing her sweet fuzzy head, I’m always keeping a look-out for any sinister goings-on in there. I’m always half expecting my future self to materialize, wide-eyed in front of me, whispering urgently, “Stop! Look! Hold her tighter while you can.”   I want to ask my future self if we will get out of this unscathed.  Will we get to keep her? Five years from now, will my greatest concern be that J take out the recyclables the night before so that we don’t miss the truck?

Back through the wormhole she goes. Questions unanswered.

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Ugh! Why does this always happen? I, truly, intended to log on and type the following:

Hi friends! No news is good news! This week has been wonderful and we are greatly enjoying our chemo vacation. The worst news we have to report is that Elsa is two-years old and, thus, driving us totally insane with normal two-year old stuff.

Instead, I started rifling through old, unfinished posts and found the one above. I remember when I originally wrote those ideas, some months ago, I had run it by J before publishing (which I rarely do). His reply was, “All that talk of your different selves sounds confusing,” so I abandoned it for awhile. Today, I got lost in those old thoughts and ended up writing a significantly more melancholy update than I had originally intended.

See, I’ll prove it to you. Look at us this week; It was great!

January 27, 2012: Hospital Room 810, in pictures.

 

First day. Fevers.

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Day Three.  Elsa finds my artistic attempts dubious.

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J and I were allowed to leave the 8th floor, as long as we wore a mask. It was just the 8th floor itself (the kitchen, the playroom, etc.) that was off limits. Elsa, of course, was not allowed to go anywhere.

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Day Three: Hanging with Grampy

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Day Four: Somebody please get this kid a blood transfusion.

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Day Four

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Day Five: Looking eerily like Day Four, eh? Yeah, that’s because it was.

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Have I mentioned before that she is a pretty intense kid? I mean, they’re just gnomes! Relax a little.

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A snack before they set us free on Day Six. For a combination of reasons, she refused to eat one bite of food for the entire six days. Had she not been nursing, we would have had to have some awful conversations about feeding tubes and supplementary nutrition. It felt funny to be supporting her on my milk alone, like when she was an infant. Plus, it was exhausting for my body and soul. That said, I’ll take nursing exhaustion over a feeding tube any day of the week.

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January 27, 2012: Let loose

Six days later, they let us loose! Turns out we all had RSV (Respiratory Syncytial Virus). Blech. Her ANC was 0 for two days, which means she had no immunity to anything (anything!) and her fever ran in the 103′s-104′s for a few days before she started to turn the corner. She needed one blood transfusion and one platelet transfusion, but otherwise, it was a pretty uneventful stay.

None of us are at 100% right now, but we are exceedingly happy to be home. We are free to move about the house as we wish. We can go to the kitchen and make food whenever we want. No one pesters us at midnight and then again at 4am to draw our blood and check our blood pressure. No IV pole. No needle in her chest. No diarrhea-inducing, belly aching IV antibiotics. No mechanical bed. No fluorescent lighting. No hazmat suits. No masks.

Home is the best. THE BEST!

That being said, I am waiting for the stress and panic to dissipate. Something in my brain keeps shouting: “Her counts are so low! She is going to get a fever again. You are going back to the hospital. Don’t get too comfortable.” And it is possible. We could go back again before we are really out of the woods. I know it is no use brooding over it, and we should just enjoy the time we have at home. Everyone will tell me that. I know. I just need to figure out a way to intercept that shouting voice . . .

Next stop on the cancer train? Clinic on Monday to check if she needs any more transfusions. Next round of chemo (Interim Maintenance #2) starts the week after.

Oh yeah. One more thing: Delayed Intensification is over. OVER!

January 22, 2012: Inpatient and I’m getting a pedicure

There is almost nothing that makes you feel more absurd than getting a pedicure while your child is sick in the hospital. I am like one of those Mob Wives. I am a Real Housewife of Suburban Connecticut. I am getting a pedicure and blogging on my iPhone: Absurd!

My massage chair squeaks and a lovely, but somewhat aggressive Korean woman at my feet tells me I need “therapy” for my calloused feet. Therapy, indeed. I tell her “Yes please. Therapy, please. Callous eliminator please.”

I don’t feel guilt, don’t worry. Not for this, at least. I feel only mild discomfort as my toe skin is clipped and relief that I am not glued between a mechanical hospital bed and my hot, sweating, immunocompromised child.

We are in for the long haul, for sure. Her ANC has reached zero and there is no fighting off whatever bug she has now. Her fevers are up in the 104 range overnight and she wavers in the 101′s during the day. She’s stopped eating, but thankfully is happy to nurse all day long. We’re just watching and waiting and hoping this is not something scary. Thankfully, they are thinking it is a virus that will run it’s course, however slowly. J and I are also coughing, sore-throated, snot factories. We are not helping Elsa’s cause, but we have no choice but to be there with her. The hospital has confined us to our room because we are a danger to the other immunocompromised children on the floor. Staff wear plastic, blue, haz-mat uniforms and masks when they come in our room; Elsa is too zonked to raise an eyebrow at these giant plastic smurfs with stethoscopes.

There are some moments of sweetness though. She is a child who snuggles only on her own terms and defends her personal space aggressively when she feels invaded. I quietly sit by and encourage this as I think it will serve her well as a grown woman. J has to ask her for kisses these days as she is quite the roiling mass of grumpiness and lashes out if surprised with an unwanted snuggle. He asks her, “Can I kiss your hand?” and she responds with a nod and her outstretched, mottled little fist. He kisses her and she quietly accepts. J and I find this adorable every time.

[*This callous therapy is very intense.]

Yesterday, I felt like, surely, this would be impossible. We could not possibly survive the intense discomfort of being sick ourselves, sleepless, and taking care of our sick two-year old in a 12ftx12ft confined space for the indefinite future. Today, I’m feeling a little more able. I turn on my constant treadmill of thoughts: She is alive. She is with us. She is alive. She is with us. Time will move forward. Time is moving forward right now.

[* Certainly it moves forward more pleasantly as this man massages my calves. This man has replaced the woman at my feet; he is the massage expert. He tells me I look tired. I tell him I live in the hospital now. He asks me why and I tell him my daughter is sick. She has cancer. He is sorry. He tells me his father had brain damage and was in the hospital back in Korea. He tells me his father would wake at night, when the rest of the family was sleeping. It was awful, he says. I nod and tell him, Yes, elderly people often wake at night in the hospital. They get confused. He nods and we are silent for a while. I tell him I used to work with some Koreans back in Queens. I tell him that I love Korean food and we laugh about Korean appetizers. I tell him Koreans never tell American diners what the food actually is – you just have to eat it blindly. He finds this hilarious and then becomes serious. “Do you think Americans here would like Korean food? I want to open a Korean restaurant.” Yes, I tell him. “I love Korean food.” I am unsure if I can speak for all Americans, but I do so cavalierly. He continues to massage my calves and we sit in friendly silence.]

It’s 3:30. I will go back to he hospital in an hour and a half. Renewed, hopefully, by these Koreans, and by time moving forward. By cold air and walking with my new, smooth, callousless feet, in flip flops, in the snow. By interactions with humans who are not wrapped in blue plastic suits, talking through yellow masks. By a few moments spent not thinking about whether or not the pale, hot, 30 pound body in my arms is a ticking time bomb or just working through a simple virus that will take an easy course.

Ok. Back to business.

January 21, 2012: ER update

Earlier tonight, we thought Elsa had a fever but it turned out J’s parents had read the thermometer wrong and we were happy to return home to our beds. We should have just gone to the ER then because now, it’s 2:19 in the morning and we are on our way to the ER with a fever of 101.7 and an ANC of 72. Also, the room they had ready for us earlier tonight on the 8th floor has since been given away and the floor is now full. Unfortunately, J and I are both sick as well, so we are quite the sad sack of a family right now. We’re going to be in for the long haul. . . Can’t leave the hospital until her ANC is over 200 and that could be a week, at least. Wish us luck and boredom. We like malignant boredom to be our biggest problem.

January 18, 2012: Clinic Roundup

We have had two incredibly long clinic days yesterday and last Monday. I hesitate to blame the hospital bureaucratic snafus because, if they happen every clinic visit, then I think they might not be actual snafus. As a nurse, I should know better, really. “Hospital Time” is 2-4 hours delayed past all your expectations and often, there is no reasonable explanation. Time gets sucked down the drain in tiny, imperceptible droplets until suddenly, you realize it’s dark outside and you need to order a dinner tray.

A week ago, Elsa’s counts were finally high enough to start the second half of Delayed Intensification (ANC 860). That day was 13 hours long due to a three-hour delay in the pharmacy making the kids’ chemos. The whole clinic was in chaos because of the delay, but Elsa actually sailed through quite pleasantly. Not to pat myself on the back too heartily, but I was impressed with her fortitude AND my own. We were a really great team all day, even in the face of her not being able to eat, drink, or nurse for 8 hours (in preparation for her spinal tap, which was then delayed). I was proud of us.

We have a schedule of activities that we put on repeat for these long days. All these activities are made just a little more interesting by the IV pole and short length of IV tubing that reaches from the pole to the port in Elsa’s chest. We are a clumsy, bumbling trio: Elsa, Mom, and the IV pole. So here’s the schedule:

Go visit the receptionists, Amy, Ruby, and Karen and play peek-a-boo. Check out the toys on the receptionists’ desks, which are always themed to the appropriate holiday. Go flip the switch for the choo-choo train that runs along a track on the ceiling. Smile, laugh, and exclaim enthusiastically when the train appears around the corner. Get bored of the train and head down the hallway and around the corner to the four seasonal paintings of trees. Find the tiny bunny in the Spring Tree painting and exclaim enthusiastically, “There’s our tiny, tiny bunny!” Tire quickly of these paintings. Check out what the other kids are doing in the exam rooms and see if anyone will invite us in for a visit. Head back to the waiting room and play with a few boxes of plastic figurines. Find all the plastic dogs and line them up. Now, knock them down. Say they are going “nigh nigh” and put “blankies” (little ripped bits of paper towels) on them. Wake up the doggies and exclaim enthusiastically, “Good morning doggies!” Knock them down again. Repeat until bored. Head to the DVD cabinet and remove, at least, 20 DVDS and then put them back. Walk down the hallway past the infusion rooms and see if anyone wants to invite us in for a play date. Return to our room and read books on the bed. Watch 10 minutes of a DVD of nursery rhymes with totally horrifying animation. The only movie that holds her attention is, of course, the most intolerable one for me. Watch until bored. Take off clothes (Elsa’s clothes, not mine!), sit on the counter next to the sink and fill the sink with no less than 37 paper towels, saturated in hand soap. Wait until Elsa’s feet are shriveled little prunes and she is ready to get down (which can take up to 45 minutes – Score!) Diaper change. Clothing change. Go visit the receptionists Amy, Ruby, and Karen . . . . .

After the third repeat of this cycle, it is just about as mind-numbing as it sounds. Then again, some of our leukemia acquaintances are currently experiencing some really tragic stuff. Awful, awful. We are acutely aware that mind-numbing boredom during a 13 hour clinic day . . . we’ll take it with a smile and a nod and a thank-you. We’ll take it and ask for more please. Boredom is good.

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Photos from our 13 hour clinic day on January 9th, 2012

Our trusty pump:

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Our trusty paper towel dispenser:

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Our trusty soap dispenser:

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A highly coveted nap!

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Getting ready for her 9th spinal tap – she’s an old pro now:

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One dose of ketamine and one dose of versed later and you have this: (* I love how it looks like her doctor is performing a magic trick behind her. . . or conducting an orchestra?)

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Sweet little back, recovering:

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January 7, 2012: A happy toddler

Not much to report, which is great! We went to clinic this past Monday to start the second half of delayed intensification, but Elsa’s counts were way too low (ANC 400), so we got to go home and take the week off (she needs to be 750 to get chemo). While I, initially, felt a twinge of disappointment that we would not be getting this next phase underway, I mostly feel relief that Elsa’s body gets another week to rest before the onslaught.

She is so clearly renewed and rejuvenated. For the past few months, part of me had shamefully started to believe that, perhaps, John and I had given birth to a rotten egg. That’s an awful thing for a mother to think, I know. [I think moms need to think awful thoughts sometimes, say them out loud to a room full of people, and then let themselves off the hook.] It’s hard for me to step back sometimes (probably because we are attached to one another 24/7) and see that, of course, she is irritable because of treatment. I get mired down with this conviction that she has some sort of inborn error in her personality. She has been so incredibly irritable and clingy for the past few months; I had forgotten who my child really is.

It has been nearly three weeks since her last chemo and I am in absolute awe of the child who has returned to our house. She is delightful! We have a delightful child! She goes to bed at a semi-reasonable hour (albeit with an hours worth of fanfare). She sleeps [almost] through the night. She wakes up and doesn’t immediately start screaming. I had started to think that immediate hysteria, upon waking, was just a normal part of being a kid. Turns out that kids who feel good? Yeah, apparently they don’t need to always wake up screaming. Also, for months now, she has been totally incapable of amusing herself for even 60 seconds. She needs to be CONSTANTLY engaged with someone (usually me) and whines incessantly if left to her own devices.

The other night, John and I sat in the living room for an hour while Elsa toddled around the house, playing with her various toys, occasionally bringing them to us and shoving them in our face for us to “eat.” She was happy to just play. No screaming for “na na” (nursing), no whining while clinging to my legs, no wild demands for a schmorgesbord of salty snacks. We were just hanging out together, as a family. The adults doing their own thing, mama feeling free and disentangled, the baby doing her own thing, and the occasional happy collisions of family members: J and I chatting. Me eating Elsa’s play food. J tickling her belly. I said to J, “I think this is what it is supposed to be like to have a kid . . .” and we both just sat, stunned.

I have a problem with my inner monologue (hence, the need for writing). My inner monologue is repetitious – I think J, with all his psychiatric wisdom, would say I am very perseverative. I have phrases that run through my head all day (and night) – they are particularly intense when I’m driving. Many of them are directed at Elsa and one, in particular is, “My god. What have they done to you?” These past few days, I’ve felt this phrase so acutely as she blossoms into a happy little girl. My god. What have they done to you? How could we have lost you for so long, that I had started to believe that you never existed?

All that and I could have just said, “We are having a great week!”

December 31, 2011: Getting the angry out before 2012

Sorry, had a little too much fun with the collage feature on Picnik. Those photos are a pretty accurate representation of what Elsa looked like, most hours of the day, for the last week of steroids. Sorry, it’s sad. I know.

Of all the parts of this treatment, it’s not a secret that steroids are THE WORST part for us. I hesitate to use superlatives for fear that my future self will read them and say, “Ha. You had no idea what the WORST part of treatment was going to be. . .” All I have is the present though, and up until today, steroids are just the WORST. So bad, that I must annoyingly use ALL CAPS. This is actually my second diatribe against the ‘roids – here is the first: August 24, 2011: A Word About Steroids

Feeling Awful.

The world’s most pathetic attempt at a smile.

12/24/11: christmas eve

Not even a good Stella-snuggle can coax a smile.

So that’s that. Visual proof: steroids can suck my butt.

Now, I’ve had this scrap of paper sitting on my desk, with a record of what Elsa ate on Day 28 of induction. I keep meaning to record it here on the blog so that I can have it for our records and, perhaps, it will offer comfort to another family with a ravenous, angry, fat, tyrannical steroided-out child. I can’t even differentiate the list into discernible “meals” because she literally ate non-stop, all day. Also, before reading the list, just envision that Elsa, prior to starting treatment, was a long and lean 17 month old, weighing 25 pounds.

So here we go: Day 28 “Diet”:

2 scrambled eggs
1 serving Veggie Sticks
3/4 bagel with cream cheese
2nd serving Veggie Sticks
3 slices turkey
1 mozzarella stick
1 serving lasagna
1 cup cheerios
3 more slices turkey
1/2 avocado
1/2 bagel with cream cheese
1/2 cup potatoes
1 bowl cottage cheese
2 slices american cheese
1 turkey burger patty
15 potato chips
2nd mozzarella stick.
1 cup watermelon.
15-30 nursing sessions (Yes, that’s right. If she wasn’t eating, she was nursing).

I’m not sure that list will really elicit the “Holy Crap That’s A lot of Food” that I am looking for, but perhaps you parents with toddlers will understand just how much food that is for a 30 pound child. I mean, she gained 8 pounds in 29 days! That would be equivalent to me gaining ALL my pregnancy weight (50 pounds, ugh!) in one month instead of nine. Oh it was awful.

Like I wrote a couple of days ago, this past round of steroids (one week on, one week off, another week on) was just awful. The first week, she managed to hold it together, but they hadn’t yet left her system a week later and the second week saw the cumulative effects very quickly. She was sleepless, angry, violent, and hungry the entire second week and it has taken until today (5 days after stopping them) for her to return to semi-normal. Even when semi-normal, she is still waking up in the middle of the night, screaming and irrational, demanding massive quantities of guacamole, so life is not yet actually-normal.

We will be back on steroids in the future – but never again for more than 5 days at a time. Depending on where she is randomized in her clinical trial, she could be on them as frequently as once a month or as infrequently as once every three months. I am doing a lot of research right now to see what other treatment standards are out there, across the U.S. and Europe. I plan on having a serious conversation with her oncologist about our treatment options if we are not randomized to the steroids-every-three-months arm of the trial. Up until this point, I have surrendered to the clinical trial that we are on because, honestly, I have been really freaking tired and sad. Now that we are approaching the maintenance phase of treatment, it’s time for me to take a more active role in her treatment decisions. This actually reminds me that, when Elsa was first diagnosed, a cancer-survivor acquaintance of ours told me to remember that our doctors work for us and we are not slaves to their decision-making. We have rights and we have decision-making capacity. At the end of the day, they wouldn’t have a job if our kid didn’t have cancer.

I don’t think it is helpful for me to spend so much time and energy dreading steroids, hating them, and bemoaning their effects. For now, I am going to research our options and try to keep the emotion out of it. I’m going to lay my own steroid rage to rest for the time being and, hopefully, I can stop complaining about it here. I know. It’s getting old. I’ve heard from a couple other families that the rest of Delayed Intensification is a *little* easier, so we are just going to put all our eggs in that easy basket.

Here’s to better days in 2012!

12/31/11

P.S. A big thank-you to one very fine J, who took Elsa out of the house for a few hours this afternoon to leave me in peace. I know he doesn’t get mentioned often enough, since his picture is intentionally kept pretty absent around these parts. But I would like to say: He is great.

December 30, 2011: Let’s stay with it.

I am writing for the sake of writing. Keeping the blog going. CPR. Resume compressions. I think I’ve done this before.

I’ve been meaning to share this photo for ages. Years even. Next to our coffee maker (which is truly, the most important object in my life), I taped a fortune cookie fortune to the wall. It was the best fortune I have ever received and it is the guiding mantra of my days – even before cancer snuck into our house.

I had planned for some grand entrance for my fortune cookie fortune, but this will have to do. I even think of renaming the blog sometimes: “not the end yet. Let’s stay with it.” Perfection.

*******************************************

We are floating in limbo, waiting for the second half of Delayed Intensification to start. Tuesday looms on the horizon with new chemos (Cyclophosphamide, Thioguanine, and Ara-C,) and a spinal tap (Methotrexate). Blech. Drats. Shucks. Darn. Fiddlesticks. Fuck ‘em.

The dark cloud of steroids is slowly lifting, so that is drastically improving the quality of our life. I must say that they did take quite the toll this time around. Elsa is hobbling around the house like a 90 year old man in need of a hip replacement and she has a slight tremor which only furthers the “old man” image she is projecting to the world. She got an x-ray of her right hip this past Tuesday because her gait is so unsteady. Hopefully, she is just sore and achy from the steroids and we won’t have to explore scarier paths like Avascular Necrosis of her hip. See, I’m crossing it out just to teach it a lesson.

Her bottom is fiery red from a diaper rash the hospital so graciously bestowed upon her with antibiotic-related diarrhea. She gained 2.2 pounds in the last week, thanks to the guacamole she mainlined 24 hours/day for the past week. Shiny, puffy cheeks and taught, stretched belly returned to give her that extra “Something is very wrong with me but I’m still cute” look. Plus, all the hair she had grown over the past few months jumped ship. There is something about the hair loss that just screams, “Get us out of here! This body is poisonous!”

Sometimes I just look at her and think, “Really? This is my daughter? My sweet girl?”

Just like she bounced back from those first 29 days, and we enjoyed sporadic moments of normalcy over the last few months, I assume that will happen again. I am learning that these dark days are cyclical and, so far, they have always been followed by relief and release. No reason to assume otherwise at this point.

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Gosh. I think this all sounded more melancholy than I intended. To be truthful, today, I had a great day! I think it is just that it is midnight and I got all caught up in an I-Hate-Steroids frenzy. Today was a good day. I got time to myself. Therapy, even! Elsa played with her Grampy and her Auntie Cardeents. I managed to reply to a few more emails that are months overdue (truly, they are emails from August). Look, I’m writing. Writing always helps.

*******************************************

Elsa and her puffy cheeks at clinic this past Tuesday. No chemo, just blood tests and an x-ray. The light in her eyes hadn’t yet returned, though steroids finished 24 hours prior. Slowly, she’s getting her glow back.

December 25, 2011: Christmas morning nap

12/25/11: Christmas

December 20, 2011: Time moving forward.

Hello, hello.

At a time when my mind is absolutely whirling with a thousand thoughts, it seems like an odd time for writer’s block. The hospital has re-wired my brain though. Somewhere between my thoughts and my typing fingers, there is a giant, sleepy dragon. Lazy, but ferocious when pestered, it does not allow trespassing. I’ve tried to write over the past few nights and, each time, I quickly give up and just lay down next to Elsa, in our mechanical hospital bed. I don’t have a heck of a lot of energy for dragon fighting.

Perhaps I feel like I don’t have enough reason to write. I’m always trying to argue that she’s not that sick. It could be worse. I know. Other kids are sicker. We don’t have reason to complain . . . My therapist often helpfully responds with, “Um. Your daughter has cancer. You can complain a little. Please let yourself complain a little.”

Or perhaps, I think that if I write down my fears, they will become prophesy. There are just so many “might happens.” So many scary demons lurking just out of sight. When we were admitted last Thursday, I had a hard time swallowing the fear that, “Perhaps today is the last day . . . Maybe today is the last day our life will be normal.” We’ve already experienced that once: that last day of normal life back in July, back when I bought a sun hat. I am constantly aware that we could have another day like that. She could be on a ventilator a week from now and I will look back and snap my fingers and say, “Damnit, THAT was our last day. THAT was the day. Why didn’t I know!? THAT was our last day of normal life.” I told this to our appropriately horrified nurse, Jeannie, and she sympathetically told me that I know too much. Ah the scourge of being a mom and a nurse.

Our hospital stay has been as uneventful as a leukemia hospital stay can be. She has been fever free since Friday and we have just been waiting for her neutrophils to get their act together. Stupid neutrophils.

We were admitted Thursday night and each day is exactly the same:

Grumpy eye opening. Morning breakfast tray. Scrambled eggs for Elsa. French toast sticks for Mama. Tidy the room. Pace the 8th floor, Elsa in one arm, IV pole in the other. Make coffee in the family kitchen. Drink coffee in gulps while trying unsuccessfully to involve Elsa in something that is not sitting in my arms. Morning medication. Morning vital signs. Morning news that NO, her ANC has not started moving upwards. . . until this morning! This morning we got a 180 (up from 134 yesterday!) I am insisting on a re-draw this afternoon to see if we can hit 200 before this evening. 200 and we go home. 200 and we go home. 200 and we go home.

In one sense, this hospital stay has been good for us. . . or good for me. I was getting so antsy and grumpy, home with Elsa for the past few weeks. I was complaining, “Oh, boo hoo, I have to sleep with Elsa. I don’ t have any time to myself.” Whine, whine, whine. Well, the thought of bringing Elsa to bed tonight, in our cozy house, in our QUEEN SIZE BED, detached from her IV pump, needle-free chest, no nurses hovering over us at midnight and at 4AM . . . gosh, even just typing that makes me teary. It will be the BEST. I assure you: The Best.

I hesitate to ever say, “Next time, I will write about such and such.” Such a recipe for failure. I very rarely state my goals out loud. I know myself and I have a hard time with follow-through. BUT, I do have some ideas for future posts, so I might as well say it now and hope for the best. One good thing about having a kid with cancer? I no longer fear little things like, “I might fail at this writing project.” If I fail, then I fail. I will be too tired to hang my head very low. Or rather, I can’t fall much further than the floor I am already laying on.

So here are the topics I need to cover: The difference between Elsa at 17 months, in the hospital and now, at 22 months (she is so different! so old!). The act of Hospital Surrender (a necessary skill if you are going to be the parent of a hospitalized 2 year old). Cancer Kids on Display. Tips and Tricks for Surviving Inpatient Life. The language of pediatric cancer: Fighters, Strength, God, Etc.

Now for a glimpse of our past week:

I call this picture, “Find the cheerio.” (It may or may not be in my child’s nostril)

Very busy “painting” during arts and crafts hour.

Enjoying a ride in her chariot.

12/16/11: inpatient

Thank goodness for naps.

Where Elsa and I rest our heads each evening. Ugh.

12/18/11: inpatient

Not a bad view.

12/18/11: inpatient

Our trusty pole, in technicolor!

A visit from Auntie Cardeents.

12/18/11: inpatient

Inpatient supplies, organized by Type A mom. LOVE those pink buckets.

Another day, another chariot, another cute face.

12/20/11: inpatient

More blessed napping.

12/18/11

Al Bundy? (Click the picture and you will see!)

One lap of the floor is 1/16th of a mile. We have walked miles over the past 5 days.

Thanks for stopping by. This blog and the comments we receive, from both friends and strangers, have oddly become an integral part of this whole experience. A good part.

December 16, 2011: Inpatient. Darn.

Again, I post from my iPhone and will keep it brief as I just can’t stand this tiny, tiny keyboard. Also, if anything doesn’t make sense, blame autocorrect.

Alas, we did not escape the dreaded “neutropenic fever admission.” Elsa’s fever persisted and when we had her counts re-checked at clinic, she had dropped her ANC from 1300 to 500. Up to the 8th floor we went. I would love to write a whole novel about my feelings being back up here but, again, such a tiny keyboard! I’ll leave it glossy and light for now and say, “It’s just fine.” Time can only move in a forward direction, thank goodness.

I have finally gotten her to sleep next to me in bed. She will get antibiotics every 8 hours IV and we will watch and wait. Captive here on MS8 for the near future. They are optimistic we will be home for Christmas but telling us to expect to be here awhile since her counts are on the down slope.

Elsa is doing well though- she really puts on the charm when we are here and manages to have fun in a way that only a two-year old could manage. Lots of climbing, running, and general mayhem-making.

I know it is not necessary, but I just wanted to lament that I have not been able to reply to all (or even some) of the lovely emails and comments we have received recently. I know that no one leaves us messages expecting a prompt reply but I would like to be able to send, at least, belated replies. I read every comment and email that comes our way and they are a very bright light upon our path – thank you!

And now for your regularly scheduled dose of cute pictures.

Post-Tylenol euphoria:

20111215-231953.jpg

Getting checked in to her new digs:

20111215-232006.jpg

Checking out her new ride. . . at 10 p.m.
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December 15, 2011 I got fever all through the night

I’m typing on my iphone, so this is just the facts. Made it through our first visit to the ER. That’s got to be some sort of cancer family milestone. Elsa ran a fever of 101.3 last night so we packed up and headed to CCMC prepared for an admission. Thankfully, her ANC was above 1000 so they sent us home to watch and wait. She was great for all the procedures and spent most of the time looking wiped out on the stretcher. Fingers crossed that her blood cultures don’t grow anything and we are fever free as the day goes on.

20111215-062428.jpg

December 12, 2011: Time Off

I was pretty down in the dumps this week, wallowing deep in the “my kid has cancer” ditch that constantly threatens me, as we chug along. There is one pretty simple solution that helps me to avoid this pothole. It’s so simple, it’s laughable:

Steal some hours for myself!

Elsa? I’m sorry. Perhaps you will read this one day, as a teenager, and feel angry and hurt that I needed time away from you in your hour of need. And perhaps, you will read this as an adult, a mother of a two-year-old yourself, and say, “Of course my mom needed some time away! Bless her little heart for all she did!” (I don’t know why, in my daydream, you talk like a southern belle).

Last Thursday, at clinic, I had to sign another one of the hundred forms I have signed for you. Yes, I give permission for you to cut open my child’s body and Yes, I understand she could die. Yes, I give permission for you to put a needle in my child’s spine and Yes, I understand she could die. Yes, I give permission for you to fill her up with poisons, in some paradoxical effort to fix her and Yes, I understand she could die. Each time, I sign these forms and indicate that I am signing on behalf of another. I am the Mother. The Guardian. The Decision-Maker. The Permission-Granter. I am the one that understands you could die and signs at the ‘x’ anyway.

This past Thursday, signing another form, the word “Mother” struck me as ridiculous. Rolling “Mother” around in my mouth, I repeated the word. I even said so to Jessie, the Nurse Tech, who brought the form, “Gosh. That’s funny. I’m her mother . . . her mother. I’m still 16 years old inside. Ya know? How could I be someone’s mother?” Jessie smiled, nodded and left the room – a skill I am sure you must perfect in order to work in pediatric oncology.

I spend 24 hours a day with my sick child right now. Now that she has stopped sleeping, unless she is snuggled up against my body (and at least we have found a solution!), I really do spend 24 hours a day with her. Before all of this, I could put her in her bed at 8pm and, though it was only a few hours, I would savor every moment I had while unplugged from her little body. I could go to work and get lost in my patients’ stories, their sickness . . . sickness that, for me, really just meant a series of tasks and a smile. A hand held and then I could send them on their way. I was even thinking of daycare a couple of times per week so that I could plot my next move. Grad school? More shifts at work? I had finally dug out some spaces in my life to just be Georgia, in addition to being a mom.

I have a newborn again, except she is huge and has infinitely more demands than just “Hold me. Feed me. Change me.” And it feels unnatural, because she is not a newborn. She should be out playing with other kids, learning, running, growing. We are stuck in stasis now and, after days and days of NEVER leaving Elsa’s side, inevitably, I find myself deep down in that hole again, convinced I will never, ever, feel happy.

I am a selfish 16 year old somewhere inside. That 16 year old has a hard time wrapping her head around the fact that I have a child with cancer. I want to sit on the couch with my coffee, in peace, and write in my blog. I want to go hiking in Yellowstone. I want to go to work and know that my patients go home and say, “I had this great nurse today.” I want to study for my lactation consultant exam. I want to go back to school.

You know, I’m not really sure where I’m going with all this. And my time here is limited. Gone are the days when I could mull over a post for hours and ensure it made sense with a beginning, middle, and end. These are stream of consciousness days – That’s all I have time for.

J has taken Elsa to clinic – which is a really big deal for me. I’ve relinquished just a little control. I have had to swallow the fact that, Yes, she could die at clinic. I have signed those papers and YES, I understand. But today is a low-risk, “easy” sort of day. Just two different chemos and *hopefully* just a few hours. Plus, he’s not just some stranger off the street – as he said last night, “Georgia. I’m her father.” I know it is OK for me to take some time out for myself. Not just OK, but 110% necessary for the survival of our family. We can’t afford for me to implode. Each hour that I have to myself, I climb higher out of my dark hole. I can see sunlight again!

I’m honored that I get to see Elsa through this and the love that she showers down upon me is stunning. She showers me with a hell of a lot of other, less pleasant nonsense, but I am always shocked that the act of loving her and being loved by her is *enough.* Enough to make parenting worth it. I am also realizing that, I must take time out for myself. Cancer or not. I have to find a way to ask for help and not feel like a failure. I am such a better mother when I have time to NOT be a mother.

Done with 7 days of steroids! Just 7 more weeks of Delayed Intensification. Hurray!

Sweetness on a swing.

 

December 8, 2011: PEG

Pegasparagase is just another one of her cutely named chemos. Each administration carries a risk of severe allergic reaction, so I was especially happy to have this second dose complete. Thankfully, her protocol only calls for her to get this medication twice.

12/8/11: PEG appt.

December 7, 2011: Survival Mode

Sorry this won’t be a very long, interesting or informative post. I have a 3-4 hour window to sleep before she gets up for the night (more on this later), so I just wanted to write something for those of you who I know keep up with our story.

Elsa “made counts” for her first day of Delayed Intensification on Monday, meaning her ANC was high enough and her immune system strong enough to start the next phase of chemo. We were really, really hoping that her ANC would be too low and we would get another week off of treatment. No such luck. It was a soul-sucking 8 hour day at clinic which can pretty much be summed up in one word: Waiting. There was endless waiting and delays and unexplained snafus and by the end of the day, we were all pretty crumpled and broken.

I have been dreading this phase since Day 29, when Elsa took her last dose of steroids. I’m expecting the worst, so I was pleasantly surprised that she was only *slightly* more grumpy/demanding/ornery than usual today. Her appetite hasn’t yet ramped up and her episodes of ‘roid rage are still mild.

Perhaps the most difficult part of all of this is that she has totally stopped sleeping. When I say “totally,” I am not really even hyperbolizing. For example, last night, she was awake from 11pm-5am (Yes, you read that correctly. She was up ALL night) and then only slept until 7am before she was up for the day. She is still refusing to nap anywhere but my arms, so, our days are absurdly long. I could probably write a novel about our sleeplessness, but instead, I think I will go to sleep.

Wish us luck. I will try to update as much as possible, but there’s not a lot of emailing/blogging that goes on during survival mode. One friend encouragingly noted that, at least now that Delayed Intensification has started, we can stop dreading it and just count down the days until it is over. 54 more days left . . . though, at this rate, it seems like we will be awake for almost every hour of those days.

December 6, 2011: the daily lifesavers

12/6/11

December 5, 2011: First Day of Delayed Intensification

The dreaded “DI” begins. 8 hour day. Spinal Tap. Echocardiogram to make sure her heart is OK before they give her a medicine, Doxorubicin, which [I am not even kidding] is popularly nicknamed “red death.” Re-commence steroids. It will be a long 8 weeks.

(She had just grown back some hair too. Time to say ‘goodbye’ to that):
12/5/11: DI #1 appt

Nap for Elsa. Coffee for mom.
12/5/11: DI #1 appt

November 28, 2011: rough spell

* I started this post two days ago. Now, two days later, I have gained only 8 more hours of very-interrupted, fitful sleep. We’re falling apart a little over here in leukemia land, and yet, we are very much holding it together.

** This blog post is made possible by a generous contribution from the Raviele Russell Foundation. We thank the foundation for their time, friendship, and kindness. We thank them for our sanity. Mostly, we thank them for entertaining our child and allowing us to lay in bed for a few hours, in peace.

As usual, I have a hundred thoughts to write about and 1/100th the energy I need to make them coherent. This week has been . . . exhausting? I can’t even find an appropriately exhausting word to describe the exhaustion. I feel like a broken record – I am sure I have lamented this before.

Elsa is, overall, in the grand scheme of cancer kids, doing well. My journeys through the deep underbelly of cancer blogs and cancer discussion boards has left me with a healthy [unhealthy?] awareness that our own journey is comparably E-A-S-Y thus far. She’s running around, making loud noises, grinding play-doh into every fabric-covered surface in the house, relentlessly pulling the dog’s various parts, eating, drinking, smiling, living. On the other hand, it takes three hours to put her to bed at night, after which we are so emotionally drained that we, too, pass out. It has been weeks since we have had a peaceful evening, just Georgia and J, to decompress from the day. We dive into bed, minutes after she finally stops fighting her exhaustion, unable to speak to one another, frustrated, angry, tired, sore. Minutes later, it’s 4 AM and she’s awake! Screaming! “MOM! MOM! MOM!” Except that she’s not talking yet, so it is just screaming.

If I may, I would like some moments to complain. Whine, you might even say. Grumble and bellyache. Please ignore the following paragraph. It is boring and self-involved.

After her 4AM wake-up scream fest, she’s cranky most of the day. She refuses to sit in her stroller for even 11 seconds (or 1 second, really) thus making any sort of exercise impossible. I try to set her up with snacks, a dolly, a blankie . . . no luck. So now we can check “Exercise” off the list of things I can do to maintain my sanity. She refuses to walk anywhere thus making any kind of extended outdoor adventure impossible. She also refuses to be carried in any of the 6 sling/carriers that I have for her, so we can only adventure as far as my arms and back can stand to carry her 30 pound toddler heft. Most frustrating? She refuses to nap in her crib anymore. I can repeat our nap-time routine 15 times, and 15 times, she will wake up the moment I transfer her from my arms to the crib. Now we can check off “Alone Time” from the list of things I can do to maintain my sanity. Off to the car we march, and she is asleep by the time we get to the mailbox. Captive in the car, I sit for two hours in a variety of local parking lots while she sleeps, resenting every moment that I am not at home, stealing a moment or two to myself. Sometimes, she likes to shake things up a bit and refuses to stay asleep unless the car is in motion. On those days, I get to drive, drive, drive. Hours spent exploring the local back roads, stewing in my ever-increasing resentment and bitterness. Our days have been virtually shut down for the past two weeks, confining us to the house, my in-laws, and the occasional trip to the library which she *amazingly* still tolerates.

It’s been really hard to hash out what is cancer and what is our toddler’s difficult challenging personality. What is pain and discomfort and what is a nearly-two-year-old asserting her independence via tantrums? What is neuropathy and what is a refusal to walk on her own because it’s easier to be carried? What is pain and suffering during the night and what is a little girl who really just hates sleeping anywhere but her mother’s arms and has learned that screaming gets her what she wants? I hate to enter into those “Cancer stole from us . . .” conversations, but cancer has robbed me of any sense of confidence I had in my parenting ability. My child is a scary mystery now and I am helpless to make her feel better. We stumble through the day, hoping her behavior is just normal toddler shenanigans but always suspecting something more sinister.

We are exhausted and broken, but, like I said, we are acutely aware of our good fortune as well. We are home. She is not on a ventilator in an ICU somewhere. We are not preparing for a bone marrow transplant. We are in remission. She *just* has leukemia. It’s the *good* kind . . . It could be worse . . . It could be worse . . . I know. I know!

I still cling to our moments of sweetness throughout the day though. There are times when she grabs my face and rubs my cheeks, pushing her little nose into mine. I think there is a sweet little girl in there somewhere. Surely, there is a girl who doesn’t scream and whine and maliciously crush cheddar bunnies into the carpet at 4:30 in the morning.

If you’ve actually made your way to the end of this rambling nonsense, here is a sweet moment of silliness: [Please direct any questions about "Why would you ask your child to lick her mother's nose and eyeball?" to J. Also, she is covered in blackberries.]

November 21, 2011: LAST Interim Maintenance I appointment!

Alway feels good to get another phase out of the way. It was extra nice to have Auntie Cardeents along today.

11/21/11

11/21/11

11/21/11

November 17, 2011

We’re emerging, again, from a couple of pretty rough days. Mom with limited emotional resources + PMS (lame excuse, I know) + dad working a lot of hours + toddler on higher doses of chemo + toddler getting two-year molars (which I just realized today is probably the source of a lot of her distress!) + sunset at freaking 4:30 PM (really Fall, really?) + dog eating [poison] raisins and having to go to the vet for induced vomiting + dog smelling really foul [like, fouler than your wildest nightmares] after said induced vomiting experience. . . Well, it’s all been a bit much. This may or may not have resulted in my having a temper tantrum over the phone to J which may or may not have resulted in him rescheduling patients and coming home early yesterday.

Today feels better though! It might be the fact that Elsa is off playing with her friends Olivia and Sue. For 4 hours! 4 glorious hours of freedom and relaxation! Plus, the fact that another friend is making a dinner date possible for J and me (thanks Marta and Dan!). Also, I am going to go talk to someone about my feelings (which I am told, I need to do). And did I mention the 4 free hours . . .?

November 14, 2011

11/14/11

11/14/11

11/14/11

November 10, 2011: these days all look the same

For the most part, clinic visits are starting to all look the same. Which is good, I guess. Predictable is good. One more appointment, and we are done with Interim Maintenance Numero Uno.

11/10/11

11/10/11

11/10/11

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