April 13, 2013: Maintenance Cycle V

by Georgia

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.