Day 169: 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: John and I chatting. Me eating Elsa’s play food. John tickling her belly. I said to John, “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 John, 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!” and then showed you a Friday Photo mix!

Happy Break

Day 163: Getting the angry out before 2012



Sorry – I had a little too much fun with the photo effects in Picnik (which is how I edit all my photos). 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: A Word About Steroids

Feeling Awful.





The world's most pathetic attempt at a smile.




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

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!

P.S. A big thank-you to one very fine Mr. John Bonetti 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, but I would like to say: He is great. Here’s proof:


Dad's jokes are the funniest.

Day 161: Let’s stick 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.

Day 152: 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.





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





A visit from Auntie Cardeents.





Another day, another chariot, another cute face.





Our little family in the hall. Glaringly missing? Stella.





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.