366 Days with Leukemia

Shuffling along towards the finish line

Tag: delayed intensification

36/366: taken by dad

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*Fun Fact: Today is our 200th day of treatment. Only (approximately) 730 days left!

35/366: in the locker room?

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Allright. This one requires explanation. First off, I actually forgot to take our “picture of the day” today. So, this evening, after Elsa went to bed, I was bemoaning that I had finally, on Day 34, missed a day. As I scrolled through the photos on my iphone, I realized I had taken one photo. This one. My friend – who is a pretty big Elsa fan – texted me during the day with, “Send me a picture of what Elsa is doing right now.” I was in the locker room at the YMCA when I got her text and I replied with this picture and, “Sorry, this is all you get.”

I’m actually glad this is the picture of the day, though I’m wildly embarrassed by it. I’ve been trying to take better care of myself lately and it’s fitting that the only picture I took that day was of me after a workout and a shower. After six months of living as an empty shell of myself, I’m looking for a little more balance. I think it will be good for everyone in the family.

34/366: painting and a nap, all before 9 AM

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33/366: the dog ate my sausage.

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32/366: missing the pool

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31/366: just us girls, part deux

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30/366: in winter, a hearty little bud

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29/366: this birthday is kind of a big deal.

All kids birthdays are an opportunity for parents to sit back and exclaim, “Where has the time gone? How did this happen? Where did our baby go?”

This birthday, though? It felt a little tenuous. A little too delicate to plan anything in advance. There has been this tiny, but exclamatory “wow,” in my head for the past couple of weeks. Wow, she is two. Wow, she might not have made it to this birthday. Wow, our life is so radically different from what we imagined it would be, one year ago. Wow. We are here. At two.

BUT! A real birthday, it was! As a present, we were handed an absolutely brilliant two-year old for the day. Brilliant to look at. Brilliant to be around. Brilliant and shining and fun. We’ve had a few days since treatment started (like this one: Day 169) where John and I can imagine what Elsa would have been like had she not gotten cancer. Today was one of those days. We lived each hour today so effortlessly. She roamed the house during her birthday party like the toddler I remember from 6 months prior. The toddler who left me breathless as I chased her through the library and who scared me with her independence and fearlessness. She played with her grandparents and two of her bestest (grown-up) friends. We couldn’t have any other kids over because her counts are so low, but she seemed none the wiser. Once everyone had left, I realized that she hadn’t cried out for me once! She was too busy for mama/nana and I couldn’t have been more pleased. Busy is good.

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Goodmorning Two!

Birthday Morning

Party Time!

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29/366

28/366: enjoying life on the outside

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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!

27/366: dad in a tunnel

Tonight, you would not stop pestering me for “na na” during dinner so I yelled at your dad, “Go find some sort of novel activity to keep her busy for five minutes while I *&5*% eat!” I went into your room a few minutes later to find this. That’s dad in a tunnel and you, sitting on his back. I don’t know how many more times I can say it, but home is the best.

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26/366: Set free! Good riddance to you, IV pole.

Discharged on the sixth day!

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25/366: tethered and incarcerated

Fifth day in hospital isolation

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24/366: glitter glue extravaganza

Fourth day in hospital isolation

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23/366: a fever and a nap

Third day in hospital isolation

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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.

22/366: laughing at mom’s cow drawing skills

Second day of hospital isolation

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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.

21/366: hoping it doesn’t rain

First day of hospital isolation

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20/366: x-ray says ‘no pneumonia’

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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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18/366: where’s the snow?

Ready to sweep snow, but where did it go?

Day 18

17/366: the dog, she frolics

We went out to play this morning in the fresh snow. 8 hours at clinic yesterday and a blood transfusion be damned! We broke out the sled and the dog almost lost her mind, running around like a lunatic.

Day 17

16/366: nursing at 23 months

I started this project on the advice of another Georgia, on the far other side of the world. Inspired again by her gorgeous photo of her son nursing.

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15/366: “cooperating”


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This is Elsa’s cooperative response whenever we ask her to do something she doesn’t want to do – which is almost everything.

On another note, I think this is only the second photo ever taken of the birthmark on the back of her head – a birthmark I am very fond of. Here’s the first:

On second look, I realize you can’t actually see her birthmark because she had so much hair! We miss that hair. I haven’t looked at those newborn photos in a while. It’s hard to look at them and know that, somewhere inside that sweet healthy baby, there is a whisper of the sickness yet to come. I wish I could go back and sniff the back of that baby neck. Toddler neck will have to do now – it’s almost as good.

13/366: it’s 30 degrees out and i’m up in this tree



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12/366: birthday cake with the babies



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11/366: just us girls



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10/366: you leave guacamole on the shoulders of all my shirts



Day 10

9/366: 13 hour clinic day

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8/366: the impossibility of a two year old “holding still.”



January 8th

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!”

7/366: the warmest january day



january 7

Dear Elsa,

Today was the warmest January day we’ve ever had here – almost 60 degrees! We went to the park with Stella and she ran her butt off and greeted some other dogs by fluffing up the fur on her back. You mostly emptied your little bottle of Purell into the grass (sorry grass). I did manage to get you walking a bit by singing the marching song about that man who left his wife and 48 children. I can’t wait for days ahead when you have enough energy to run! Marta, Dan and Wallace met us and we took a stroll through the woods. Seeing you feel good + the warmest January day + running dogs + good friends = the best outing we have had in months.

Love,
Mom

6/366: the nightly routine (medicine + snacks)

January 6

5/366: our best friend.



january 5


4/366: a january 4th tree


January 4th


3/366: 166th day of treatment

january 3

2/366: we’ve read this book so many times


January 2


1/366: a walk in the woods

January 1

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.

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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.

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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:

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Getting checked in to her new digs:

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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.

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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 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

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