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.

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!

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.

This year’s Christmas is pretty overshadowed by steroids. Ah well.

(She had just grown back some hair too. Time to say ‘goodbye’ to that):

Nap for Elsa. Coffee for mom.

*Probably my most favorite picture, ever.

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).

Yesterday lasted years but I think we’re going to salvage today. A dog walk. A playdate. We’ll be Ok.

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.

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!

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.

Long story short, it took me a month to finally get an iphone, so there you’ll notice there is a long photo hiatus.

The library plays a huge role in our normal, day-to-day life. We visit a couple of our local libraries numerous times per week – both to pick up books and just to play in the kids section and scope out potential playmates (that makes me sound so creepy!). When Elsa was diagnosed, we had to avoid germy places so the library was quickly struck from our list of options (along with almost everything else). After a month and a half on semi house arrest, this was our first trip back to the library.

That mask stays on for approximately 0.03 seconds. And the glove? The glove is just for fashion.

Here she is having the needle placed. Her port lies just under the skin on her left chest wall. Notice her total apathy and boredom. Seeing this picture, I realize that I should be wearing a mask too! I’m breathing down her neck, all over her sterile field – oy. Bad nurse mom. Bad, bad nurse mom. Sheesh.

Needle in my chest? Ho hum.

Once the needle is in, they tape it down and leave it there for the rest of our visit. This way, they can draw blood, give her fluid/transfusions/medications if needed, and give her chemo. When this whole thing started, I was terrified she would pull at the needle, but once it is in there, she forgets it exists. Another great thing about toddler brain: Out of sight, out of mind. Her port is a little positional – they say that the tube inside might get a little kinked on her collar-bone – so we have to move her arm around a bit when she gets her blood drawn. She finds all this arm flapping pretty amusing. Plus, you can’t hear it, but Mary, her nurse, is singing, “Where is Tubey? Where is Tubey? Here I am! Here I am!” (to the tune of “Where is Thumbkin?”) “Tubey,” is what the nurses call the kids’ port access devices. P.S. If I could take Mary home with me, I would. Immediately. Elsa loves her, to the max.

Getting blood drawn? Nothing to it!

Now, we spend two hours waiting around for her blood test results. We are mainly interested in her ANC (Absolute Neutrophil Count), which is a measure of her immune system’s strength. They are also looking to make sure her hemoglobin, hematocrit, and platelets are up to snuff. Plus, they are always watching her liver and kidneys to make sure the chemo isn’t getting too toxic. We spend this waiting time: running around the 2nd floor of the hospital, visiting the GI clinic (which is right across the hall), riding the elevators up to the 8th floor and back down to the basement, checking in on the Surgery clinic waiting room (where they have some neat toys), stealing the nurses’ keys so we can go try to open various locked cabinets, and playing with the Child Life staff in the oncology waiting area. I was too busy chasing her, so no pictures of all that fun stuff. Grammy came with us on this last visit, so here, Elsa gets her blood pressure checked while washing Grammy’s arm.

Multitasking.

Once her blood results are back and we have waited the requisite 6 hours without eating/drinking, Elsa is ready for the procedure room. There, she gets a lumbar puncture (spinal tap) and the intrathecal methotrexate (chemo in her spine). Thank goodness it is 2011 and kids get sedated for these procedures. Mary was telling us that, when she first started doing pediatric oncology, they didn’t sedate the kids for anything – not even the bone marrow biopsies. She said that, you would have to pry children off the door frame, kicking and screaming, to get them manhandled down on the table.

Elsa, on the other hand, waltzes into the room, climbs up on the table and sits happily while they give her Versed (medicine for sedation) to make her silly and floppy. Sometimes, she even does a little hip wiggling dance that makes everyone in the room smile. Once she is lying on the table, they give her Ketamine (both for pain control and sedation), and, though her eyes are open throughout the whole procedure, she lies still and quiet. The first couple of times she needed procedures, I sobbed quietly through the whole thing, holding on to her face and whispering in my head, “I’m so sorry. I’m so sorry.” I’m happy to say that, for the last two spinal taps, I have made it through without a tear – funny the things you can get used to.

Getting some versed - about to get real silly!

Versed + light-up toys = genius

Feeling good. . . .

Needles in my back? No sweat.

The actual spinal tap/spinal chemo, thankfully, only takes about 5 minutes. They watch her pulse and oxygen saturation through the whole thing and, so far, she has done exceptionally well for all her procedures.

Just a little post-sedation hallucination.

That hardest part is keeping her lying flat for 30 minutes after the procedure, but I have mastered how to climb up on the table and nurse her lying down. Reason #57 I am happy she is still nursing.

And now for my official, favorite picture of all time:

Hey mom! Hey dad! That was fun!

With a look of deep concern, people often ask me, “Is it just terrible having all these clinic visits?” As you can see, we generally have a great time at clinic. There will be some phases of treatment in our future where we might have less fun, but for now, we are trying to enjoy ourselves as much as possible.

Such a stinker!

Playing in the waiting room at our old clinic – before the big, fancy renovated clinic opened.

Bruising finally faded

Getting weighed – all 36 pounds of her!

Practicing doing “tubey” on one of the medical teaching dolls.

Choosing her prize for being so good during port access (though she would have gotten one even if she’d screamed her head off).

Counts were too low to start the next phase so we got a few more days off! Around this time, I think we started calling these count-related delays “Chemo Vacations.”

We had a two and a half week break from chemo after Induction ended. As you can see, breaks from chemo are exponentially better than life on chemo.