Tag Archives: Delayed Intensification

ER update

Posted on January 21, 2012 | 7 Comments

Earlier tonight, we thought Elsa had a fever but it turned out John’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, John 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.

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Day 179: Clinic Roundup

Posted on January 18, 2012 | 13 Comments

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). The 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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Day 169: A happy toddler

Posted on January 7, 2012 | 11 Comments

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

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Day 163: Getting the angry out before 2012

Posted on December 31, 2011 | 8 Comments



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.

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