366 Days with Leukemia

Shuffling along towards the finish line

The 366 project has officially moved from the backseat to the trunk, clanking around with the half-empty bottle of oil and spare tire. Sorry project. It’s OK though when actual life gets in the way of internet life. Arguably, this is preferable.

April heard me say, “I love three! This is the best age!” and April heard me say, “They were right! It is the terrible-threes! This is awful.” So grown-up she is and, for a few weeks in April, so defiant and grouchy and tantrum-prone, was she. I can remember it felt like our family was falling apart for a few weeks, destroyed by the hands of a tyrannical beast-of-three. Now, I can’t even remember what all the fuss was about. May smoothed it out. May brought flowers.

April was all, “Here, let me take something awesome like a bike ride and ice cream and instead of enjoying it, let me express my displeasure.”

Then May came along and said, “Forget about it. Here’s a sun hat and a million tulips.”

May went on to say, “Here, I’ll throw in a trip to Nashville (first time on an airplane post-cancer and all went well!), a surprise wedding, mini golf, visiting some friends you haven’t seen in years, AND a bounce house. Take that April.”

Airplane travel is exhausting:

E’s favorite part of the surprise wedding was the juice boxes and getting to wear a Derby hat:

May even threw in a clinic visit who’s most traumatic moment was when the bacon ran out.

Then May 31st said, “Only 4 months and 10 days left of treatment. Two more big chemos and one port removal surgery and you, my friends, are finished.”

Thanks May.

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April 14, 2013

April 14, 2013: March happenings

Since I missed out posting for the whole month, here’s a brief re-cap. Like I said in my last post, we’re happy to keep leukemia in the back seat these days. March brought us . . .

A trip to the casino for the State Finals Basketball Championship:

Hours spent dressing up the world’s most humiliated dog:

A fever that quickly went away and only cost us a few hours at clinic and a dose of IV antibiotics:

Newfound drawing skills. Titled “Mommy and Baby.”:

I’m in no rush, but she’s slowly, slowly, slowly weaning:

Pure and simple, happy girl:

“Organe Juice Please.”

The girl. She climbs!

Easter egg hunting:

Bobo’s easter egg hunt motto: It’s not a real easter egg hunt, if there’s no danger involved.”

Finally, flashback to January 13, 2011:

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April 14, 2013

April 13, 2013: Maintenance Cycle V

Oh how I have fallen! From a picture every day, to barely one/month, to losing the whole month of March! I started this post back in March, but we’re halfway through April now and it’s just languished here, unfinished. Mostly, we are just busy with life. Cancer takes a backseat now in a way I could have never imagined. Honestly, there are days that I almost forget we are doing this up until 11PM when J drags himself from the couch to mix nightly chemo. I sometimes even forget to carry Purell now. GASP. I know. We’ve grown a bit lax with our sanitizing efforts as E’s counts have continued to remain stable and as her oncologist assures us that we’re doing just fine. A little bit of exposure to the various coughs, sneezes, and runny noses of childhood isn’t a potential death sentence now – though it takes a lot of blind faith to just trust that she’ll be OK.

For awhile, I was planning on taking the blog down. It’s just too much of our life out there and the internet is too sinister a place for us (mostly, for E). However, lately, I’ve been getting quite a few emails from families saying, “Thank you for writing all this!” So I continue onward, cautiously. It would be a shame not to have this place to document this upcoming October (!!!) when this part of our life becomes just another part of family lore. “Hey, remember that time our kid had cancer?”

IV vincristine, spinal Methotrexate, a 4 hour IVIG infusion, and 5 days of steroids are always a reminder that we are still doing this, though. Maintenance Cycle 5 got off without a hitch. Good counts, an easy port access, a complication-free spinal tap followed by a well-deserved breakfast, and approximately 500 episodes of Curious George. Elsa was Brave with a capital B at clinic, which she now proudly announces. Treatment is very different now than it was two years ago. She’s a kid getting chemo instead of a baby and the whole transition has been pretty wild. It wasn’t easy managing a baby with cancer, but I have to say that I’m glad the majority of the experience is behind her and happened before she could talk. As she gets older and as our conversations grow more complex, it’s pretty draining to hear her fret over how tubey is going to hurt or how she’s sick and needs to go to the HOPsital. She worries now.

If there were one picture that could sum up steroid week, it would be this:

Despondent to the max. And if I couldn’t use that picture, it would be this:

A constant buffet of choice snacks and the glazed-over look of a kid who has been watching TV for HOURS.

Thankfully, it’s only a week. One week of TV, sleeplessness, and 24 hour grumps really isn’t so bad compared to the 10 straight months of it that we lived once upon a time. The week passed and, when it was over and behind us, we tried to drink up the idea that we only have two more big chemo days. Maintenance Cycles 6 and 7 and then leukemia is history. Woah.

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March 6, 2013

March 5, 2013: february brought

We are coming up on our big chemo date this coming Monday and it seemed unfair to forget the month of February, even though it was mostly just snow, snow, snow.

We fit in one very uneventful clinic day for E’s IVIG. Counts were good. E’s mood was one of being generally “over it,” but she was cooperative enough. There was much TV watching. What can I say? She’s kind-of a pro at this now (both the cancer AND the TV watching).

February brought us much time spent indoors, mostly in what E now calls “my Hooooouse.” This is a favorite picture of mine – father and daughter, cramped in a tiny, overturned Ikea tent, leaving mama alone:

Once the 3 feet of snow melted a bit, February brought us a few sneak peaks of spring to remind us that there are some desperately-needed, glorious days just around the corner.

February brought us time spent with friends:

And trips to the kid’s museum:

February also brought us a suddenly very picky eater, which we are trying to just ignore and hope it’s a passing phase. Thankfully, she still doesn’t realize that spinach, carrot, apple, mango, avocado Vita-Mix smoothies are “healthy” so we’re drinking them for three meals/day now in an effort to combat the goldfish/hotdog diet she’s trying to promote. Snapped a picture at her friend’s birthday party just as she was perfecting her look of despondency that Goldfish were not on the menu . . .

February even brought J and I two whole nights away! We went skiing with friends while Elsa was living it up at Nona and Bobo’s. The time away was perfect.

Here’s the funny thing about not doing the 366 project anymore. Prior to writing this post, if someone had asked me about February 2013, my knee-jerk reaction would be that it was a 5/10. Maybe even a 4. Now, after sifting through our photos and smiling about E’s ridiculous faces, and all the fun stuff we did, I feel like February was total win! I miss the 366 project for that – every day gave me a moment to reminisce about a nice moment during the day and, cumulatively, it left me with an overwhelming sense of gratitude. Glad to be back on the blog.

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January 29, 2013

January 29, 2013: It’s my Bertday!

Last year’s birthday and today’s birthday were in pretty stark contrast. Last year, on her second birthday, Elsa was just finishing up the awfulness of Delayed Intensification and had been discharged from a really crappy week in hospital isolation just three days prior. She had wasted away a bit from a week of not eating (though still had her chubby steroid cheeks), she was bald from the ARA-C, and had an ANC of <500, so she couldn’t really hang out with other kids. She still didn’t really speak and couldn’t tell us where she hurt or what she wanted. We didn’t want to plan her party ahead of time because there was a good chance it would have to be cancelled anyway for another trip to the hospital. That morning, we decided to have a few people over, got a bucket of wings, and made a cake.

THIS year, there was planning. There were decorations:

Elsa chose the theme which was “Balloons and Bathing Suits.” There was a house absolutely full of family and friends and the very special brand of chaos supplied by 6 kids under 6:

Last year, aside from putting a bucket of wings on the table, I didn’t have much to do besides take copious pictures of Elsa. This year, even if I hadn’t been busy chatting with friends and putting food out enough to feed 26, I wouldn’t have gotten many pictures of the kids anyway. Elsa was much too busy running wild with her gang of friends, destroying her bedroom (and arguably the house), and playing a very complicated game of pretend that involved a lot of jumping on the bed.

Like a lot of our life these days, this birthday was about planning ahead and having a good time, cancer-be-damn. I think we’ve finally gotten to a place where we are just living our almost-normal life and accepting the fact that, if we get derailed again, then we cross that bridge when we get to it.

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January 27, 2013

January 27, 2013: growing up

She’s growing up at warp speed now. I’d say “slow down,” but I know better.

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January 20, 2013

January 20th: the plan

After taking a picture/uploading almost every day of 2012, it has been an incredible relief to just S T O P for a couple of weeks. I turned off the “Take a picture” alarm on my phone that buzzed twice/day at 7:30AM and 7:30PM and I stopped framing moments of our day with the intent to blog later. That being said, I really think that 2012 was such a great year, in part, because of the 366 project. Making the time every day to say, “This moment. This moment is good,” leaves you overwhelmed with the knowledge that you have a heck of a lot of good moments. Also, I think there is a universal feeling among parents when we all periodically exclaim, “Where has the time gone?” I know I’ve mentioned this before, but parenthood has simultaneously put my life into warp speed (I have a three-year old?! HOW!? That seems simply impossible) while some days – especially those days early in the year, in the hospital - well, each one of those days lasted 100 years. The 366 project has been good for tempering those extremes. As the project calmly plodded forward, I could look back and say, there’s where our time went and each day was 24 hours long, each week 7 days.

While I’m sad to see the 366 part of the project end, I’m not abandoning the blog just yet. This story is not done yet – technically it won’t be until we crush up that last dose of 6-mp on October 10th and enter the [terrifying and wonderful] land of Off Treatment. I still can’t wrap my head around the fact that we are now in 2013. 2013 is our last year of treatment. Back in July of 2011, 2013 was unfathomable. Even after October of this year, we’ll continue to visit the 5th floor on a pretty regular basis to monitor blood counts and any after-effects. Once/week posts seems like a reasonable goal for the time being. So, that’s the plan folks.

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January 14, 2013

January 14th: first visit of 2013

Some days, you seem pretty amenable to the whole clinic experience. Increasingly though, you seem tired of the whole routine:

You’re not upset really. You just seem . . . done with it.

(If I only had a real camera and not just an iphone, then that picture could be in focus!)

Thankfully, your case of the grumps turned into a nap.

IVIG went in without a hitch. Counts continue to be a little on the high side, so they increased the methotrexate to see if that will bring her back down into the acceptable range. Counts re-check in 2 weeks to make sure nothing is amiss with the new dosage. Moving forward.

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January 7, 2013

January 7, 2013: recap

I want to write some sort of wrap-up post to the 366 project, but days keep going by and, for whatever reason (mostly lack of energy), I just remain silent. I have a lot of feelings about the project’s end: nostalgia, relief, embarrassment [that I've kept track so diligently], and pride [that I've kept track so diligently]. Perhaps, instead of a grand wrap-up, it will just come out in bits and pieces as 2013 starts to show it’s face. Despite having been one of the three calendar years that our daughter was treated for cancer, 2012 had more good days than bad. See? (Just email me at patientobservations@gmail.com for the video password!)

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December 31, 2012

366/366: family portrait

And just like that, the year and the 366 project came to an end. I didn’t quite get 366 photos out of it, but I keep seeing the farmer in Babe looking at me and saying, “That’ll do pig. That’ll do.” See you in the New Year!

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December 30, 2012

365/366: pseudo-sledding

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December 29, 2012

364/366: first haircut, part two

This was an infinitely better first haircut experience than last time.

For the first minute or two, she wasn’t so sure . . .

But, soon, the firetruck chair, pink electric buzzer, and mention of a post-haircut lollipop all combined to make for a pretty fun time.

For at least the first year after she was diagnosed, there was always this background noise in my head that constantly asked, “What have they done to my child?” The chemo, the hospitalizations, the steroids, the discomfort. She was a fat, bald, uncoordinated, limping, grouchy mess for such a long time and it felt like, in the process of saving her life, they were leaving her broken. I wondered what all this treatment would do to her long-term psyche and how would she process all the bad stuff she had endured.

I know we’re not done yet, but it feels like we’ve come out on the other side. As we drove away from the hair salon, J and I were talking about how proud we are of her (this is something we talk about a lot lately) and the way that she approaches life. She waltzed into the hair salon, briefly felt apprehensive about the new experience, resigned herself to the situation, and spent the rest of the time being goofy and charming. I don’t wonder anymore about what treatment has stolen from her childhood. She’s cautious but brave and confident and while I think some of that is innate, I also think that going through treatment has given her a little extra body armor.

I have a tendency to over share with the whole cancer thing (blog much?) but it’s hard to avoid talking about something like that and pretend it never happened – that it’s not still happening. I realized today, though, that as she moves forward through life, she’s probably not going to even mention the fact that she had cancer. Maybe it will be a fun novelty for parties? Taking a sip of her beer, “Yeah, I had cancer when I was a kid . . .” and the other college kids will look at her and say, “Shit! That’s crazy!”

I wanted to tell the lady who cut her hair today the whole backstory and explain why this hair cut was extra special; I felt compelled. Neither J nor I mentioned anything though except for a vague mention that we had cut her hair before at home once. So, instead, she was just a healthy little girl getting her first big girl hair cut - which is how she saw the whole thing anyway.

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December 27, 2012

362/366: too cold!

This is, quite possibly, my favorite face she has ever made.

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