366 Days with Leukemia

Shuffling along towards the finish line

Tag: cancer

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 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 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 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.

 

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 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 . . .?

October 31, 2011: Interim Maintenance #1

Interim Maintenance #1 is turning out to be just as boring as it sounds. And boring is good. This past week’s clinic visit was a breeze and a welcome distraction from the crazy snowpocalypse that has totally devastated the state. We were without power for five days, but thanks to Grampy and Nona (and their generator and wood stove!), we were none the wiser. Warm, well-fed, cozy.

Like I said, no complaints about clinic this week. There was warm coffee, heat and our usual friendly faces. Plus, the new clinic opened this past Monday, so we got to be part of the inaugural group of patients getting chemo in what must be the world’s fanciest pediatric oncology clinic. Seriously, we’ve got wall to wall windows, TV’s and play stations in every room, a choo-choo train that runs on a track along the ceiling, heated massage chairs for getting chemo (I know!), fancy coffee makers, a family kitchen . . . the list goes on!

I don’t know how it is Day 107 already. Just 805 days left. Wow. That’s not even worth looking at. Let’s just say we have 107 days under our belt and that is something that can make us feel proud and accomplished.

For lack of better, more interesting words, let’s just get on with the pictures!

10/31/11

Getting chemo is easy in my heated massage chair! Chocolate ice cream on my face helps too.

All set with my mom and my trusty pump.

October 24, 2011: Salvage, we did.

We salvaged that day. And the next. Somehow a week went by and then a weekend. Times two. We salvaged those as well. Another clinic day, in fact. More poisonous medications. Less cancer. Incredible how time moves forward no matter what. How did another autumn sneak in with sweaters and hats and icy cold toddler fingers?

Day 100 is sneaking up on us and I still feel like this is all very new. She was just diagnosed yesterday. I just laid her down on the operating table, perfect and whole. Beautiful hair and slim cheeks. Left chest wall flat and her internal jugular vein peacefully shuttling blood back to her heart, unaware that it will soon be full of plastic . . . or silicone. . . or whatever.

This can’t possibly have been going on for nearly 100 days already.

We’ve filled our days though. Playdates with Nona and Grampy. Visits with Grammy and Dwamps. Playdates with our friends. Endless hours of torment for the dog. Mom even got the house vacuumed and the sinks cleaned. That’s a pretty big deal around these parts. We’ve only had one more episode of hysteria/pain and I was ready for it this time. Bee-lined out the door, across the parking lot. Waited, waited while the morphine kicked in.

I have a problem giving my 19 month old morphine. It’s gets me down. Will write more about that when I’m not nearing the tail-end of a nap – she’s shuffling and sniffling around in her bed already.

I know we’ve had some inquiries and I just wanted to say that “Yes, Things are better,” and “Yes, we are OK.”

And now, for proof:

Out for a fall hike. (notice: dog off leash. mom on leash).

October 11, 2011: Rough Start

We’ve had a rough start to Interim Maintenance 1 (our next phase of treatment). I hesitate to post when I’m not in the mood to write, but tonight I just want to jot a few things down – in the mood or not.

5 and a half hours at clinic felt like 12.

We need a new descriptive word for the effects of vincristine on our poor little one’s body. “Crying” and “pain” are simply inadequate. I hesitate to even talk about this here because I know that everyone likes to hear “Everything is great! Leukemia is just a walk in the park.” I know, everyone wants to feel good about this, and sometimes we all can. The past two weeks have truly been wonderful, but we are back on the chemo train for a spell and I can’t pretend everything is flowers and rainbows. I’m sorry if this post is not what people want to hear – if I don’t write though, I lose my mind. Fair warning given. Tonight is not a flowers and rainbows kind of night.

Tonight I don’t feel good about this. Tonight Elsa didn’t feel good about this. None of us feel good about this.

Sweating and screaming. Rigid like a board, back arched, toes spread. Eyes wild and fingers pointing at everything and nothing. I have no idea where she hurts and she can’t tell me. Perhaps everywhere? I can barely keep a hold on her as she writhes and stiffens.

Desperately trying to squirt morphine into her mouth during a momentary pause. Choking and sputtering. A lost dose. Useless.

I remember something! A friend once told me that, when her baby was inconsolable, she would take him outside into the fresh air. Even on the coldest winter night, the change of scenery could soothe.

We run out of the house, barefoot. Curious now, her screams diminish to low moans. From my arms, tear-stained, she glances around the parking lot. Almost against her will, she shows mild interest that now, we are outside. Perhaps, we have left some pain on the doorstep. In the most theatrical voice I can muster, I exclaim, “Look! The beautiful sky! It’s dark blue! We shed a tiny bit of pain down the sewer grate. The trees! They are brown and green and red! Just a little more discomfort melts away into the grass. We jog to the neighbor’s new Halloween lawn abomination. I poke the pumpkin-headed scarecrow and then jump back, howling, “Ow! He got me! Bad pumpkin-head scarecrow!!”

I look like a psychotic, homeless woman at this point. Greasy, matted hair, sweaty, bra-less, cut-off shorts, barefoot, and an equally disheveled toddler slung on my hip. Blue morphine spattered on her bright pink kitty cat jammies. For a split second, I worry what the neighbors think. Then I remember that my kid has cancer and I momentarily debate screaming that to the whole complex . . . just in case.

She’s quiet now. Interested. Distracted. Grinning. We worship our scarecrow deity for the next 10 minutes and the horror of the last 45 minutes slowly fades . . . . .

The energy spent is . . . well, the energy spent is so vast that I no longer have enough energy to describe it further.

She is asleep now. For a few hours. Hopefully we can catch this next round with a dose of morphine before it escalates. Hopefully someone in this house will get more than three hours of sleep tonight. We will talk to her oncologist in the morning about our options. Different medications? Changes in dosage? We will feel better, I know. Flowers and rainbows somewhere just beyond our visible horizon, I hope.

October 5, 2011: Delays. Waiting. Delays.

I’m not even going to try and write anything of any great substance today. Just a quick, boring, factual update is all I can muster.

Elsa was scheduled to start her next phase of treatment yesterday (Interim Maintenance #1), but we have had a series of snafus and, as of today, she still hasn’t started the new phase. Yesterday, when we got to clinic, our nurse realized that there had been some confusion with Elsa’s calendar and we had been scheduled a day early. They drew her blood anyway and we waited the requisite two hours to get results. Then, they sent us home with an appointment for the next day (today) and the assumption that we would get chemo today. When we left clinic yesterday, her ANC (that immune system number that every cancer family lives by) was in the high 800’s.

This morning, we packed up for clinic again and restarted the whole process. They decided to check her blood again (even though she had her blood drawn 16 hours prior . . .in the end, this was a good thing) and we, again, waited the requisite two hours for results. Her ANC was in the 400’s! WHAT? I kept asking her what she was doing overnight to her white blood cells, but she remained silent and continued smearing playdough on her face. Alas. This huge drop in her ANC coupled with her hemoglobin jumping up two points made both her doctor and me raise our eyebrows. Dr Parikh seemed to agree that the results were a little funky so they redrew her blood and sent another set of labs. So we waited . . . another two hours.

I think I am pretty good at telling myself, “Clinic isn’t so bad! Look! We have fun!” and that is really true. We do have fun and the staff there are absolutely endlessly amazing with Elsa. So playful and cheerful – I can’t imagine a better team of nurses and support staff. But it is also exhausting chasing Elsa while she conducts her daily orchestra of destruction and mayhem. Really exhausting. At one point, while we were in the cafeteria, Elsa became irrational for the 30th time that hour and insistent that she MUST drink her yogurt ALL. BY. HERSELF. Of course, seconds later, there was an arc of yogurt hurtling across the room and splattering a number of surfaces in it’s path. I huffed and puffed a bit as I cleaned up and J looked at me and said, “Come on! It’s fine. It’s just yogurt.” I know. I know it’s just yogurt. I explained to him though: It’s not just one spilled yogurt. It’s an entire day of back-to-back, non-stop power struggles and mini disasters. Yogurt all over the place. Whining. Marker on the wall. Screaming. Playdough in my hair. Yelling. Spilled bottle of purell. More screaming. Wiggle worm dance while trying to change a really gross diaper. More whining. All of this is part of the normal routine when you are living with a toddler, yes. For me though, there is a constant low level of stress when we are at the hospital – just being surrounded by sickness and the constant subtle reminder that: No, this is not the life I imagined and Yes, she really is sick. That, compounded with the normal toddler stuff makes for a really exhausted mommy at the end of the day.

Phew! Sorry for the little rant. I promised this would be short and boring and I am failing to deliver on the brevity promise.

Long story short: The counts were real. Her ANC really is 426. Though her hemoglobin dropped back two points, so who knows what happened with her labs. I’m glad they double-checked. This round of chemotherapy is “count dependent,” so she must have an ANC of 750 in order to start treatment. Looks like we get another chemo vacation. I’m 80% happy about this because it means another week without morphine, constipation, crankiness, and pain. I’ll take it! I will be happy though when she finally starts Interim Maintenance because it will mean that we are, again, moving along towards our very distant finish line.

I dare not write such a long, boring post without including a cute picture. Since I haven’t dumped the photos from my camera in a couple weeks, you will have to endure yet another picture from the wedding.

Elsa dragging her Bisnonna off on an adventure. 96 years between these two!

September 28, 2011: Thank you

After spending my first night away from E since she was diagnosed:

First off, thank you so much to everyone who dropped by to leave kind words and say “go to that wedding!”

One friend reminded me that Elsa’s journey is not anyone else’s journey. She’s not the little girl with the Ikea pillowcase – she’s just our Elsa. The same friend also volunteered to be my official “googler” – someone to sift through the tomes of cancer websites and pick out only the good stuff. I can’t promise that I will obey the “no more googling” law, but I can try.

My wise cousin – who is many years down the road in her own cancer story – gave me a small glimpse into our own possible future. She is now able to look back on her own early struggles and feel compassion for the weary woman she once was. Weary, I am. She also encouraged me to find some alternate activities that don’t include “wallowing.” John and I watched “Bridesmaids” and it made me vow to watch more funny movies. They really are therapeutic.

Another lovely reader – a woman I have never met, but who follows our story – she encouraged me to go the wedding and dance like Elsa is watching. I liked that. She’s right. It’s really important that we invest in Elsa’s future by maintaining our own sanity and Elsa needs to see her parents having fun. This is a very long road and I’m glad I took the opportunity to get away when I could.

Thank you to everyone who stops by and reads and comments. Your company through all of this is invaluable.

September 23, 2011: Blah

Updates have been slim this week since I have been feeling a bit “blah.” I am happy to report that Elsa is doing well, though. In good spirits, running around, tormenting the dog. The usual.

When we walked into the hospital this past Monday for our weekly clinic visit, my heart sank. I just wanted to scream, “I’m done now! Enough!” During our first week in the hospital, our Leukemia 101 professors kept reminding us that leukemia treatment is a marathon and not a sprint. I think that, for the first time, I’m really starting to feel the weight of that statement. I’m at mile 2 and already my muscles are burning.

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

Took a break. Went grocery shopping. I’d like to be able to say that I’m feeling renewed, but I think I’m feeling worse.

I’m not sure why I did this, but I googled “Leukemia blog.” Why google? Why do I do this to myself? The first two that I clicked on were both written by or about people who have died. The second one was actually about a girl diagnosed at age 22 months and then in remission for 7 years. Mysteriously, she relapsed at age 11. Died. In a lot of her pictures, her head is laying on the same Ikea pillowcase that J and I have on our bed. Were I in a better mood, I would put my blinders on and continue with my day, repeatedly telling myself, “She’ll be fine. She’ll be fine.” Instead, I just feel awful, like that pillowcase was a terrible omen. Today, Elsa feels like a ticking time bomb, wrapped in this happy, smiling, toddler costume.

Children die from this. They spend time in the ICU, hooked up to machines and tubes. I just can’t. Can’t. Can’t. Think about that for Elsa. I can’t. I honestly haven’t felt like this since early in her treatment. Hopeless and afraid and unable to push these awful thoughts out of my head.

I know this will pass. These feelings.

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

Took another break. 24 hours passed. Time spent. Feeling honestly better today. Still sad, but now allowing myself to pursue any more google searches. I’m heading to Philadelphia for the night – for a close friend’s secret wedding reception. I didn’t think I would be able to go, but I’m forcing myself – I would regret staying home. There couldn’t be a better time for me to leave, really. She is tolerating consolidation so well. All of her side effects from the Day 1 dose of vincristine (pain, change in taste resulting in no appetite, constipation) have passed. She is sleeping through the night for the time being.

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

More hours have passed. This is what it is like trying to write a blog post with a 19 month old in the house. On my way to Philly. Nervous, but excited to be fancy free for approximately 22 hours. Putting away whatever dark feelings I have. Telling myself that all will be well while I’m away.

September 12, 2011: Consolidation Underway

I know life is getting a little more “normal” because I am back to my old procrastinating ways! I have about 8 unfinished posts to tackle, a slew of “thank-you” cards to write, a number of house organizing projects, wedding photos to edit (that is the subject of another post!) and a handful of undone errands. I’m happy to say that, for the time being, “wallowing” has been taken off my list. My handy little kitchen chalkboard has even awoken from it’s dormancy to tell me what to do every morning. I can barely contain my enthusiasm for having a looming “To-Do” list again that does not include, “Stop all other activities and be miserable about Elsa’s cancer.”

Notice: No wallowing.

Now for some treatment information since I know that is why most people are here reading.

We are on Day 53 of her cancer treatment.

We had a 9 day delay in starting the next phase of treatment. These delays are normal, but frustrating when all you want to do is get this crap over with. Elsa’s bone marrow was pretty severely depressed after 29 days of the Induction onslaught so it took her awhile to “make counts” in order to start the next phase. Whenever I talk about “making counts,” it means that we are waiting for her ANC (the # that tells us the strength of her immune system) to reach a certain level where it is high enough for the next onslaught. In this case, they wanted her to be above 750 in order to start Consolidation. We had two visits where we went in, prepared for chemo, but they sent us home with a “Sorry, no chemo today.” We called it our “Chemo Vacation,” and you’ve got to love a chemo vacation, even if it is unplanned. Finally, she made counts on Tuesday, September 6th.

We are now on Day 7 of the 2nd phase of treatment called “Consolidation.”

Consolidation is considered one of the easiest phases throughout treatment and is certainly the easiest phase for the next few months. Thus, we are trying to enjoy ourselves heartily before things get ugly again. Here is what the Consolidation schedule looks like:

-Vinchristine IV (into her port) on Day 1
-Methotrexate IT (into her spine) on Days 1, 8, and 15
-Mercaptopurine (oral chemo – also called “6-MP”) by mouth every night for 29 days.

Easy, right!? I know it sounds nuts, but by chemo standards, it really is a breeze. Two of those drugs are known enemies to us (the Vinchristine and Methotrexate) so we are already pretty experienced in dealing with their side effects. She gets sedatives during the spinal taps so those go pretty smoothly now. So far, the 6-MP hasn’t been giving us too many issues except for a pretty marked decrease in her appetite. All in all, except for the baldy head, she doesn’t really look or act sick for the time being.

Working on another post: Consolidation In Pictures. Coming soon!

For now, I leave you with this blurry, but aggressive dose of cuteness:

Just hanging at the Stevensons.

August 2, 2011: Wild Geese

A little girl’s body dredged from a pond. An autopsy. That would be worse.

A young boy who needs another surgery. On his other lung, his good lung. His parents trying to decide when to tell him that he will need to go under the knife. For the 11th time. That would be worse.

A little girl whose parents divorced four months before her diagnosis. Whose father says cancer has been a “blessing,” because now he gets to actually see his little girl. Her parents sit in the playroom, occasionally managing to break their stony silence with tired half-smiles for their daughter. That would be worse.

A little black baby with hearing aids and thinning hair. Moon face and pot belly that give us a glimpse of what steroids will do to you. What steroids are doing to you already. A little black baby who doesn’t have anyone who loves him enough to sacrifice and stay with him. Whose mother is perhaps too young? A child herself? A little black baby dropped off at the hospital for his chemo and left for days. Held and bounced by young white nurses. His diaper changed by young white nurses as they chat about the party they went to last night, the wedding they are planning, the new car they might buy. That would be worse.

Twice now,  we have gone to the river with you. Twice since our “new” life started. While walking, we look out over the bridge at the Farmington River I grew up on.  Each time, I’ve been surprised: The river, it’s still there. And the trees. The current pulls and there are spiders in the branches. Ducks paddling with tiny ducks trailing behind.

Our life has shifted forever. Our baby is sick. I am so incredibly tired. Walking along the river, I feel like I am engulfed in a dark poisonous bubble, sharply demarcated from the world around me. A world which is, amazingly, exactly the same. The river seems not to have noticed the change in our life.

I found this Mary Oliver poem. I couldn’t believe it existed and that I would stumble upon it just now. Just more proof that our life is not so special.  That what I’m feeling is universal. That the river and the trees do not take note of sick children.

Wild Geese

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting–
over and over announcing your place
in the family of things.

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