366 Days with Leukemia

Shuffling along towards the finish line

Tag: interim maintenance II

99/366: Easter

We had two Easter celebrations today. First, some nail painting with Nona:

Day 99 nona

And then some “1 -2 -3 – GO!” with Grammy and Cardeents:

Day 99


Usually when I miss a photo, it’s a sob fest about how the day was too crappy to document anyway. Today, I missed my photo because we were having too GOOD of a day. Movie date in the morning, lunch with friends, Elsa took a long nap, two dogs ran each other ragged, looked a house that we love [but will not buy], and pizza/wine dinner with our respective brother/sister. I was having too nice a day to remember to pull out my phone – and that just seems like a fine excuse.

97/366: two girls, one cat

Our first Passover seder was totally trumped by the presence of a friend with long hair who was willing to play the part of a human cat toy. Hysterics ensued.

96/366: nursing her kitty


95/366: doggy chaos


94/366: so many medications for such a wee one


There are a few constants in our life that will probably make their appearances again and again in this project. Taking medicine. Nursing. Playing outside. This is just what we do, day in, day out. It’s fun to look back and see how, our activities stay the same, but my-oh-my, how she has changed!

*For anyone new to this project, the chubby face back in January/February was from steroids. That chub may reappear soon as we start another course of ‘roids next week.

April 2, 2012: just the facts

I have sat down to write a blog post almost every day this week. I have the drafts to prove it, sitting on my computer, languishing. I’m not sure what the hold up is here. Even now, I keep glancing at my phone, checking Facebook, recording calories in my calorie counter (lame, I know), playing online pictionary. I’m doing everything possible to avoid writing – an activity which usually brings me such peace and a sense of accomplishment. My brain is humming with activity, but, like my blog posts, I feel a bit like I’m languishing. Languish: To fail to make progress or be successful.

I’ll start with facts and if that’s all I can muster, then at least the facts are there. We were discharged a week ago after five days inpatient. It was actually a pretty painless admission – as painless as spending five days cooped up in the hospital with a two-year-old can be. Since we’ve been home, Elsa has emerged again from the fog of this last chemo cycle (Interim Maintenance II) and she has been delightful. That’s the word I always use to describe her when the chemo has finally leached out of her body – and it’s totally accurate. Once again, she let’s us know that there is a sweet, funny, smart little girl in there – stifled by eight months of chemo and clinic and pain. She’s still my Elsa, so she will always be a bit on the ornery side. And she’s still TWO years old – so pack a little more ornery in there. But, delightful? Delightful is totally accurate.

See? Proof:


Oh! And another fact: We got some really great news on our clinic visit before last. I can’t believe it’s taken me so long to share this! Originally, I had always thought that the Maintenance phase of treatment would last two years from the day we started maintenance. I had calculated that we would be done April 2, 2014. Well, while Dr. Parikh was busying himself with spinal needles and sterile gloves and Jeannie was busy charting and double-checking chemo dosages, I mentioned that April 2014 off-treatment date. They both stopped for a moment and said, “No, No. She’s finished with treatment 2 years after the start of Interim Maintenance I. Didn’t we give you your off-treatment date?” Um. No!! Jeannie glanced at Elsa’s chart and handed us a little slip of paper:

October 10, 2013

October 10, 2013!!!!

October 10, 2013!!!!

That may seem like it’s still a long time away but it is seven months shorter than I had previously thought. Two fewer spinal taps. Seven fewer IV chemos. Approximately 238 fewer chemo pills at home. This is a BIG deal! Our life (really, MY life, in particular), is very much on hold until Elsa finishes all this nonsense. Every time I try to think of anything happening in my future, whether it be a career move, going back to school, having another baby (what!?), I stop myself. Just the thought of another inpatient admission (surely, we will have another one before treatment is finished) and all my personal dreams go out the window. I can’t hold a steady job when I’m needed 24 hours a day to push an IV pole. It doesn’t make sense to spend money on the grad school that I so desperately crave. Can you imagine having a tiny infant to take care of (not to mention TWO children to breastfeed) while living on the 8th floor of our hospital?

Please, please, don’t interpret this as my ignorance to the fact that I am L-U-C-K-Y beyond measure to be able to stay home with Elsa. I know, every day, that I’m lucky to spend this time with her. That being said, I’ve got some ants in my pants (who says that?) to make a life plan that includes just a little bit more for me and my soul.


I wrote most of all this yesterday (Sunday) but now it is Monday and I’ve got more news, however tedious it may be to hear about blood counts. We were scheduled to start maintenance today but Elsa’s counts were way too low. They sent us home to enjoy another week of chemo vacation. Thankfully, this doesn’t affect our OCTOBER 10, 2013 end date (every time I say that date in my head, it’s like I’m screaming). Just less chemo overall, and I’m pretty sure Elsa’s body is down with that plan. Her ANC is only 264, so we are back on house arrest. She needs to hit 750 before we can even think about maintenance. We spoke with another family at clinic whose little girl is now done with treatment and they confirmed that their daughter’s counts took three weeks of chemo vacation to recover enough to start maintenance. Dr. Parikh told me, “Nothing to worry about,” – so as much as I’d love to worry my ass off about it, I’m going to put some blinders on and take his advice.

There we go. Blog post done. Just a little less languishing on my part.

91/366: tug of war with her favorite uncle


90/366: same old forest, same old friends

I’m sure I have, at least, 100 photos of us in these same woods. We couldn’t live without them or the friends who trudge through them with us.


(Note: Look how deranged Stella looks in the bottom corner!) (Second note: No, Elsa is not THAT pale – just bad lighting. No need to run for a blood transfusion today!)


88/36: two hundred fifty first day of treatment

. . . It was a great day!

Sitting on the bench outside my high school.

Cooking with grandparents is the best kind of cooking

87/366: breaking the rules

I love rules. I love schedules and structure and advance planning and charts! I love charts! So when I started this project, I wanted to strictly abide by the rule that, each day, I would post ONE picture with a ONE WORD title. Now, by Day 87 of the year, that plan has fallen by the wayside. As I spend more time as a parent though, I’m learning some major lessons in forced surrender, flexibility, endurance, and self-forgiveness – however uncomfortable it may feel. Long way of saying that I couldn’t choose just one photo today (or just one word – obviously).

Friends working together to dig a hole:

We have a new “fun activity” to pass our time under house arrest (Elsa’s counts are really too low to go out anywhere where there are a lot of people). She loves to just sit in the car (which is off, of course!) and travel between the front seat and the backseat, opening the dash, and jiggling the various knobs and buttons. Sometimes I sit in the car with her and sometimes, she wants me to stand outside the car so she can feel very grown-up. The view from outside the car:

86/366: back again

Only took one picture today. Wasn’t feeling much like taking pictures (or doing anything for that matter). I think I’m having a little post-hospitalization let-down where all I want to do is crawl in a hole and be left alone.

Had to take Elsa back to clinic because I was nervous the ear infection was still raging and we were going to end up with another fever/another admission. Couldn’t even stay away for 24 hours! Glad I took her back – ears are not yet cleared up, so they put us on antibiotics at home. The amount of medicine she is taking every morning/evening is absurd (and only about to increase as we start maintenance!).

Couldn’t even be bothered to get a focused picture. At least I got one, at all, I suppose. Here she is, in her usual spot – at clinic – getting her vitals checked. I’m always amazed at the activities that are so “normal” for this kid.


85/366: set free! (and then a carwash)

After 5 days inpatient, they set us free! We always need a wagon to move out because somehow, we accumulate absurd amounts of stuff in our hospital room.


So what to do with our first free afternoon? Wash the cars, of course!


84/366: 16 laps to the mile


During our very first week in the hospital, back in July, she would wake up grouchy, at best, and usually just hysterical. We would put her in the Ergo (that red baby carrier we are always wearing on hikes) or in the stroller and just start walking laps of the 8th floor.

Walking laps is different now. There is less desperation. Less sadness. Less crying. Less fear. We happily did 10 laps of the floor this morning. 10 “hello!’s” to the nurses at the nursing station. 10 “LELLO!’s” at the yellow spot on the floor outside our room. Today may have been our best day in the hospital yet: mostly calm, a lot boring, a lot uneventful, a decent amount of toddler fun. For our fourth day spent on the pediatric oncology floor, we’ll take it!

March 23, 2012: less charming this time around

The first time I wrote about getting a pedicure while my cancer kid was in the hospital, everyone celebrated. You go cancer mom! Take care of yourself! Don’t feel guilty, just enjoy! Now? The second time around, I’m pretty sure it’s stopped being cute. I mean, who does this?! After a long two nights in the hospital, I just couldn’t think of a better way to spend my break time while J covers a shift at the hospital.

We are still inpatient. The big let down of the day was that we were sure we would be leaving today. Yesterday, her ANC struggled it’s way over 200 so we were just waiting for her to go 24 hours without a fever. This morning, she was happily still feverless when thy came to tell us that her ANC gave up its valiant effort and dropped back down to 106. Ugh. At this point in the cancer parenting game, I should know better than to get my hopes up over something as fickle as an ANC – but I did. So now we are stuck in our 8th floor sanctuary and she is scarily immunocompromised, but at least we’ve done this before. Goal of the rest of the admission: not to acquire any of the scary hospital bugs that are my invisible, constant tormentors.Stay away Staph. F-you Pseudomonas. Don’t even think of it C-diff!

This is what our room looks like to normal people:


This is what our room, horrifyingly, looks like to me. Each yellow tag is a killer infection just waiting to jump from someone’s hands to Elsa’s port.


Needless to say, it will be such a relief to get back into our own space with our own safe, benign germies.

J and I don’t even have to discuss it anymore- its just a given that we will handle her care in shifts. I do overnights and mornings (and sometimes afternoons since its a weekday and he has to work). J does afternoons and evenings while I go and do absurd things like have my feet fondled.

*Pedicure interlude: my Korean friend just happily informed me that my feet are too rough and he did “the best he could.” I told him that I don’t need to look fancy and his best is good enough.

Thank you to everyone who has checked in with us recently. I usually try to keep up with comments on the blog and reply to them but the wireless at the hospital is unreliable and makes WordPress impossible to use. Please know that we read them all and they are all little moments of joy in our otherwise somewhat tedious hospital life.

One fun tidbit of Elsa news: her speech has taken some sort of radical turn and she is chatting with us up a storm! I don’t think I’ve mentioned it often here but Elsa’s speech has been delayed- probably a combo of the whole cancer thing and two parents who always just gave her everything she wanted without making her actually ask. She has had early childhood intervention through our state with a therapist who comes and works with us every week on getting her talking. Just this hospital admission, she has started to string words together! Her first sentence? As screamed in my face during one of her many arduous, clumsy trips to the bathroom with me since I can’t leave her alone when she is attached to her IV pole:

“Mama! Pee pee lellow! Lellow pee pee mama! LELLO!”

Yes sweet pea. Yes, the pee pee is yellow. Very accurate. Thank you.

83/366: the freeze pop chronicles


Elsa lives a somewhat deprived life, in that it doesn’t dawn on me to expose her to a lot of the normal “american kid stuff.” Case in point: One of our buddies at the hospital (the dad of another girl with cancer) gave Elsa a freeze pop today! How have I never given her freeze pops before!? She went through a lot of complex emotions, but in the end, it was like a revolution in her soul. Clearly.

82/366: look who learned to carry her own IV tubing!


March 22, 2012: Back on the 8th floor

I intended to write a post today about all of my parenting insecurities in the context of having a cancer kid (so many insecurities!), but lucky for you, we are at clinic instead!


On Monday, Dr. Parikh told us that Elsa has a double ear infection but that it looked like it was resolving. Guess not. We came in with a fever of 102.3 to have her ANC checked. If it’s under 500, we’ll be admitted. Thankfully though, it is still the ear infection! He says her ears look awful, so at least we know the source of the infection. Most admissions, there is some question in the back of my mind that maybe, just maybe, it’s a port infection (one of the worst possible things). We’ll take double ear infections any day!


It’s now 7:00 and we are snuggled into our new, fancy hotel room here at Chez CCMC. ANC was 160 so we can plan to be here a couple of days, at least. They think her counts will probably drop lower before they rise over the magical 200 that sets us free.

As I sat down to write this, I have to say that I was bizzarely, deliriously happy when we arrived on the floor. The misery of our last hospital admission has taught us to be thankful [very, very thankful] to NOT be on isolation and sick ourselves. I’m not totally sure how we survived that last admission in one piece. Actually, you know what? Those kinds of, “I dont know how we did it” statements are really just bullshit because if cancer teaches you something (well, it teaches you many things), it teaches you that you WILL handle whatever it is that barrels in your direction. Still, our last admission was surely our worst thus far.

Now though, we have a hundred things to be happy about! This last week has been rough because she has been miserable fighting the ear infection and I have been so on edge, just waiting for this admission. I was so tired of obsessively checking her temperature, waiting for the fever. It was almost a relief to see the 102 and know that, finally, I could stop anticipating with dread. Plus, now that we are here, they gave us the biggest, most comfortable room on the floor that has a set of double doors to block out the noise from the nurse’s station. We are not on isolation and are free to roam the halls and use the family kitchen and playroom. Even the IV pole is great! They gave us one that has a little platform attached to it where I can rest my coffee in the morning as we make our morning rounds of the floor. Luxury! This is all so luxurious!

Ah see. . . Perhaps I should not have sat down to write. As I write, familiar feelings are creeping in to visit. Feelings like, “I shouldn’t write that things are going well. That’s such a risky move,” and “Her counts are so low that NOW, she is at risk for a port infection. Tomorrow could bring disaster.” “Don’t write anything down so that your future self doesn’t look back and wonder at your naivete.”

I’m sure I’ve said something like this before, but I sometimes feel like I’m in an empty, padded cell, yelling and batting invisible, threatening shadows. I plead, “I know it could get worse! I know! Please, please, please let THIS be the worst part.” I think I’ve gotten pretty good at snuffing these feelings out – but when I’m least expecting it, and especially when we are inpatient, my mind always wanders to the same place. I see her up in the ICU with a thousand clear tubes shuttling fluids and air in and out of her tiny body. The screaming in my head is deafening. I’m not totally sure how to snuff that out completely.

Oh gosh. Enough! We have an IV pole with a little stand attached and, in the morning, I will rest my coffee there as we walk the halls. Right? Yes.

Our day in the usual 1,000 pictures:

Dark-circled little worrywart:

Worrywart gets examined – though I’m proud to say she is generally pretty easy-going with this stuff as long as we follow a couple of her rules.

If I were to look back in my posts, I think I could find this exact same photo, wearing the exact same jammies!


For a little change of pace, we ventured down the hall to the 8th floor waiting room to eat some goldfish with Baby Dollie (really original name, I know).


Trick of the trade: Whenever admitted to the hospital, BRING PILLOWS! As many as you can stand to carry.



81/366: Ho ho ho

Brief backstory: Elsa yells “ho ho ho!” at any man with bushy hair and/or a beard – she thinks they are ALL Santa. Today, she ho-ho-ho’d at a man in the hospital with a greasy, yellow Jheri-curl and handle-bar mustache. Then, later in the evening, we were flipping through the channels on the TV in our hospital room and she ho-ho-ho’d at this man:


80/366: Baboooos!


The first day of Spring, indeed!

79/366: Last frontline treatment appointment

Wow. We’ve made it to the famed land of Maintenance. Today’s picture is of our very last weekly chemo appointment. From now until October 10th, 2013, we get to go monthly (or possibly even less frequently . . . waiting to hear). And then: NO MO CHEMO! Just 19 months to go. Hurrah!


78/366: Mayupard


Our new family obsession: Dipping roasted potatoes in Mayupard. Ketchup + Mayo + Mustard. Elsa’s really the only one that goes for the mustard. J and I are happy with just Mayup.

77/366: the public library

There is almost nowhere I’d rather be than settled into a library carrel. When I fantasize about my old life [the freedom I squandered!], I often think of college and my walk along Middle Path, on my way to a library carrel. Everything about the library makes my senses tingle.

A workout, solo lunch, and the library. Today, I spend the day alone and it is glorious.

*Thank you dear husband.*

76/366: layers


Elsa has taken to choosing her own outfits, hence the multi-layered look.

75/366: three generations + one dog


My sister exclaimed, “There’s so many of you on that couch!” and snapped this one.

74/366: she has no idea


Much like most of this journey, Elsa is oblivious while my heart aches.

We had a play date at this park near our house today, and it didn’t hit me until we were right there on the splash pad:This is the place. The second to last stop on our old train. The second to last place we visited before we heard, “I’m so sorry, but your daughter is very, very sick. You need to bring her to the hospital immediately.” I never even heard that sentence since J fielded that call from the pediatrician. But now, 8 months later, I still hear it echoing in my head. I can’t even write it down without feeling like I’m standing at the edge of the Grand Canyon, my toes near the edge, tiny pebbles launching forward, then downwards, silent. I’ve never been to the Grand Canyon and I never heard that phone call.

You were sick and I had no idea. I was just a mom to a healthy little girl. I had never held you down to be tortured. You had never felt pain except maybe a bump or a bruise. The poison! Your body had never tasted such poison. We had started to venture our separate ways. You needed me less as you explored the world, turning into a little girl. I was just uncovering my new, improved self from amid the rubble of new motherhood’s explosion in my life. Our days were effortless and I was so sure of everything.

73/366: a brief respite


This round of chemo is catching up with her, but you can’t tell in this picture. A more accurate photo of our day might have shown what felt like a marathon 24 hour nursing session. Or perhaps a photo of a mom hanging her head in her hands with a screaming toddler at her feet. We did make it to the playground though. Again, if we are going to spend the day miserable, we might as well do it outside where there is some distraction. We’ve had worse days and we’ve had better.

72/366: rough day at the beach


We clawed and scraped our way down to the beach for the day – despite crankiness and viruses and runny noses and chemo yuckiness. Having a toddler on chemo is tough because there is something hard-wired into the toddler brain that makes it impossible for them to just relax on the couch. Though she is feeling awful, she just won’t lay down and rest. I figured, if she was going to spend the day in my arms, we might as well spend that day at the beach. It was a good decision.

March 11, 2012: Relatively smooth sailing

Our clinic visit on Thursday went well. I hesitate to say it, but I think Elsa has turned some sort of developmental corner where she actually understands now that she can’t eat or drink and this understanding has brought us both peace. When we started this whole crazy ride, spinal tap days were absolute hell. Telling an 18 month old on steroids that she can’t consume large quantities of food for 6 hours is a totally heartless, miserable task. The day was spent weathering storm after tantrum after miserable breakdown. At the end of the day, I would feel like I had been in a rock tumbler for hours. Now, Elsa asks to “eeeeeat” or do “nana” and I simply say, “We can’t eat or drink until after Dr. Parikh puts the medicine in your back,” and she just shrugs and moves on to something else. Sometimes she asks to eat and I say, “Not until Dr. Parikh does what?” and she smiles and points to her back. Amazing! Granted, she asks to eat 15-30 times during the waiting period, but each time, when I explain to her that we have to wait, she quietly accepts her situation. I know this sounds painfully simplistic, but life with a two-year-old is all about these seemingly tiny, incremental shifts in their being that usher them forward out of their baby-ness and into being a kid. In the daily grind of our mom/daughter life, these shifts bring about little earthquakes that shake up our whole routine. This time, the change is for the better.

So Thursday was relatively easy, but, unfortunately, Saturday morning, at about 3AM, gifted us a fever of 102.2 and a trip to the ER. As an ER nurse myself, I find it especially difficult to bring my kid in for just a fever. I have seen hundreds of patients who bring their kids to the ER for a simple fever and the question [that I only ask in my own head] is, “WHY!?” “Why on earth would you bring your kid in for just a fever!? Keep them home. Tylenol. Hydrate. Snuggles. Done!” But to the ER we go, anytime her temperature is above 100.4. Doctor’s orders.

I was thankful that I didn’t see this fever coming though. Some nights, she feels warm to me before bed, so I spend the entire night tossing and turning, repeatedly checking her temperature and trying to refocus on some meditative tricks I have that distract me from my anxiety. I go through the alphabet from A-Z, thinking of words in Spanish. I go through the alphabet A-Z, naming animals. The anxiety I have about the possibility of an ER trip is killer. The actual ER trip, itself, is usually not as bad as the anticipatory anxiety.

Now for some other things for which we are thankful. Throughout this whole BS cancer thing, J and I have found it immensely helpful to constantly – and outloud – acknowledge the things that make us lucky. See, I even made a chart about it: Great Stuff/Awful Stuff So first off, whenever we have to go to the ER, we call the on-call oncologist and they make sure that the ER knows we are coming. The minute we walk in the door, they see Elsa’s little bald head and we get VIP treatment: ushered straight to a room, avoiding all the other kids and their germs. A nurse is in our room within minutes and Elsa’s blood is sent to the lab within 10 minutes of our arrival. So far, Elsa has never made a peep about being accessed in the ER – even though it is not her beloved Jeannie down in the ER.

Since CT Children’s Medical is a pediatric hospital, we don’t have to worry about all that scary stuff that goes along with a regular ER: drunks, trauma, cardiac arrests, etc. As an ER nurse myself, when I see a pediatric patient coming in, I run for the hills, hoping another nurse will get the patient. I am terrified of pediatrics. My tagline at work is always, “I’ll deal with all your drunks and change all your adult diapers if you will take my one pediatric patient.” Their tiny bodies, tiny medication doses, and terrified parents have always intimidated the hell out of me. Granted, since Elsa got sick, my feelings about pediatrics have been changing, but historically, I avoid sick kids. At CCMC, we never have to worry about getting a nurse or doctor who secretly hates pediatrics (like me!). Everyone there specializes in the wee ones and that makes a WORLD of difference. They actually like being around sick kids – go figure.

So this particular trip, we were there for about 4 hours total for a blood draw, a dose of IV antibiotics, and instructions to come back in 24 hours if she is still febrile. Her ANC was 1900 (it is elevated because she is clearly fighting off something) and we don’t have to stay unless she is febrile with an ANC less than 500. So far, we have managed to stay home and she does seem to be feeling better.

And now for the requisite pictures from our Thursday clinic visit:

Hiding in the curtains:

Getting blood drawn is so much fun!

Playing in the sink is serious business:

71/366: by the fire pit with Grammy


I think I’ve given up on trying to follow any photo prompts. Just going to keep plugging along with daily photos.

69/366: red


68/366: where cancer cells hide


Todays prompt was “window,” but I decided I liked this picture the best today. And I’m sure I could stretch the window analogy far enough to fit. Tiny needles opening miniature windows into a usually dark space . . . I won’t try to stretch that far though.

I’ve helped with hundreds of spinal taps at my work. “Round your back just like a cat.” “Just breath.” “Relax. It’s Ok. Squeeze my hand as hard as you need to.” “Just a pinch and a burn. Breath.”

I never thought it would be something I would be accustomed to seeing on my child. Alas, here we are anyway. And it does not escape me how incredibly lucky we are to have access to these medications: Versed for peace and forgetfulness. Ketamine for sleep and comfort. Methotrexate for the killing. When I close my eyes, I see the yellow poison, gently mixing with clear spinal fluid like the lava lamp from my teenage bedroom. Poisoning. Hopefully healing.

March 8, 2012: tiresome

Just revving myself up for a long, long day of clinic tomorrow. 9:00 blood draw followed by interminable waiting to hear if we have “made counts” in order to get chemo. I’m curious to see if our recent bout with the family stomach bug has plummeted her immune system or if we are in the clear. Then, more interminable waiting while pharmacy makes her chemo and then [thankfully] triple and quadruple checks it to make sure there are no medication errors. I can already hear myself saying hundreds of times, “No sweetie. You can’t eat until Dr. Parikh gives you the medicine in your back. Sorry. No water. Sorry. No.” Then, 1:00 spinal tap.

I don’t cry during spinal taps anymore (you’d think I’m the one getting a needle in my back!). In fact, according to my records (I love, love having records – in fact, it’s becoming an obsession), I stopped crying sometime back in September. Again, according to my voluminous records, this is her 11th spinal tap.

Hopefully, by 3:00 tomorrow, I will be able to partially relax some of the muscles in my back and shoulders and can slowly start to begin the mental decompression process. I want a decompression chamber like the deep-sea divers get when they surface too quickly. Somebody immediately start a non-profit, “Decompression Chambers for Cancer Moms.” Find me tomorrow by 5pm. Bring a masseuse. Also, for a girl who wears jeans and a white t-shirt ever day, I’m weirdly partial to pedicures. And margaritas. . .

I felt like, perhaps, I had more to say about all of this. I’m sorry the blog has been running pretty dry these days. This whole cancer thing is getting tiresome for all parties involved.


67/366: warmed up winter at the beach

Today’s prompt: “Something You Wore.”


I wear virtually the same thing every day. I have 6 white t-shirts in a rotation and 2 pairs of jeans. Also, the plaid shirt seen here and a handful of sweatshirts. I figured if I could just get myself in a photo, that would fulfill the “what I wore” prompt for the next couple of months until I break out the jean cut-offs and flip flops.

64/366: bedside

Taken from my bedside. Part of the nightly routine.


63/366: stomach bug induced fail

Remember that photo challenge I am doing this month? Today’s picture was supposed to be “Your neighborhood.” With the stomach bug running rampant through John’s and my insides, it’s a wonder I took any photos at all. I snapped a photo of Elsa, right before bed, having stuffed a hot water bottle into her shirt. I like to think the poor quality of the photo is a reflection on the poor quality of the day . . .


62/366: another picture lost!

Yargh. Another day without a picture. Though, if it is any consolation to myself, it was a well-enjoyed day (up until the stomach bug hit our house at about 11pm).

I did manage to take a quick video though. I acknowledge that this is one of the world’s worst quality, most boring videos of all time. I also acknowledge that, to the untrained ear, all of her words sound exactly alike. But to this mom, it’s Academy Award worthy, of course. And her prose is like a Shakespearian sonnet. Yeah, somehow I turned out to be THAT mom.

**Note: Amy is her speech/developmental therapy lady and Jeannie is our clinic nurse. They are both beloved figures in Elsa’s life.

61/366: up

After 60 days of taking daily photos (59, if you count my missed day), I’ve gotten a little bit stumped as to what to take pictures of each day. I decided to join up for a March Photo A Day challenge, where you take a photo based on a theme/word each day. Here is the challenge and the link to the originator’s blog:

So here is my first March Photo a Day challenge photo. It’s also a nice “nursing at 2″ photo.
Day 61

60/366: snowy leap day

After almost an entire winter left snow-less (so weird in New England!), leap day brought us snow.

Day 60

February 28, 2012: A better kind of busy

Usually, I would beat myself up a little for updating so infrequently, but I must say that the reasons for my writing absence are all great.

1. We are busy! Elsa’s ANC has been high enough that we are exploring the world with very few restrictions right now. Aside from having clinic/chemo every 10 days this cycle, and going through 12 bottles of purell each week, we are living a normal, fun life.

2. I am busy Losing to Win! I joined a totally absurd (in a good way) weight loss program at the YMCA (Lose to Win!) with weekly personal training / weigh-ins and it has been just enough motivation to kick my butt into a healthier gear. I’m spending a lot more time thinking about/planning the foods that we eat and I’m making time for work-outs, even if it means peeling off some of the velcro that sticks Elsa to my body most of the time. Elsa hasn’t had much of a problem with the de-sticking process; the better she feels, the less she needs me so physically. Everyone involved feels better, I think. I’m packing in as much self-care as I can, while the waters in our life are calm. J, too, is trying to get to the YMCA more frequently and we are taking turns taking alone time for ourselves. Next phase of the re-building process should probably be that J and I take time for ourselves, as a couple. Slowly, slowly, we’re working on it.

Life is great today. I have such a hard time not adding the caveat, “The other shoe could drop any second! She could be sick tomorrow! I know everything can fall apart at any second!” That’s something I’m working on.

Life is great today. There. That’s it. Done.


Wait. Not done yet. Here is a funny little montage of approximately 45seconds in the emotional life of Elsa. If you’re wondering why we are eating hot dogs in the car, it was a little too windy for the picnic I had planned at the park, so we ate in the car instead. Minus the brief meltdown over a stolen goldfish, it was a lovely picnic (I couldn’t figure out how to make it bigger, but if you click on it, a larger version appears):

58/366: clinic, clinic, clinic

Another day that I couldn’t pick just one!

Napping through chemo:

Grammy came for clinic today!

I imagine this is a face she will give me as a teenager:

57/366: camouflage & our path through the woods

Couldn’t chose one today. The first photo was actually awful because of all the shadows and bright light. Made it look a little more fun with a black and white filter.

56/366: woman of many hats

** You may notice a theme: All of our pictures these days are OUTSIDE of our house! Hurray!

55/366: lunch at the Cosmic Omelet

Two days in a row eating out at restauraunts! Living life on the wild side with an ANC over 500!

53/366: friends by the reservoir

Can I just say how good this week has been? There. Said it.


52/366: the grocery store

Contrary to the sullen look on her face, I could not have asked for a better, more pleasant errand companion today. I was simply too lazy to try and catch a smile, so one picture snapped was all I got today.

Often, when I am out and about, without Elsa, I see other people shopping with their docile, cheery-faced children and I wonder, “Why can’t I have one of those?” Generally, our outings are marked with an incredible amount of struggling, groaning, and tantrums (from both of us), plus the amount of sanitizing we have to do (both our hands and any surface Elsa touches) makes errands a dreaded task. Today, though? Today was wonderful, even in the face of one hundred sanitizing wipes. Easy and relaxed: I would like to duplicate today 1,000 times.


Also, We got a request from our one of our super besties for another “Elsa laughing” video. There’s not a lot of belly-laughing, but I think this will suffice:

51/366: at the toy store

Enjoying the toy store:

Enjoying herself less after being told it is time to go:

50/366: grammy!



Wow. I have sat down to write this post everyday for the past 5 days and every time, I manage to get a few more sentences down. The great despair of my blogging is that I’m never able to finish a post in one sitting! I’m a little bit of a perfectionist and I like my writing to have some semblance of “flow.” Unfortunately, my days are not really conducive to any sort of “flow.” Such is life with a two-year old.

This post started out saying, “Everything is great!” and then it segued into, “Everything is great but there is a shortage of cancer drugs, and that is so scary!” and then it turned into, “Looks like the drug shortage will hopefully resolve before it affects us, but thank you for writing your legislators on our behalf!” Now, the post is just a mess.

All in all, we’ve had a couple of great weeks. We’ve had a schedule packed full with play dates, YMCA visits, library story-time, and playing outdoors (thank you 50 degrees in February!!). We even went to the children’s museum last week [i.e. the germ palace] and, so far, we haven’t had to pay for it with a fever. Clinic visits have been long but uneventful and tolerable for all parties involved. Interim Maintenance #2 is treating us well. Even more exciting is that frontline treatment is almost over! We have three more appointments in this cycle (IM#2) and then we will start maintenance. The start of maintenance is a little bittersweet because she will have to contend with five days of steroids, but it’s a pretty big deal that we will be starting the LAST cycle of treatment (ignoring the fact that it is a 2-year cycle).

I have so much more to write! How do professional bloggers with kids find the time to write!? Less sleep? Maybe I should sleep less . . . ? Elsa’s waking up from her nap, so I guess I will just leave it here for now or else deal with yet another unfinished post.


48/366: bobo’s backyard wonderland

Day 211 / 48

47/366: my pump is beeping

Day 210 / 47: Clinic (IM#2, 2nd Appt)


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