November is my favorite month. The weather here is incredible. I felt the same way when I lived in Orange County–I loved that time of year for weather-related reasons too, even though the weather there is pretty different from the weather here. The heat has died down, the humidity has receded, Daylight Savings ridiculousness is back to normal, breezes are plentiful, the bugs are gone, and the colors are unbelievable. It’s just pleasant.
Julia loves being outside, and she takes advantages of any opportunities we provide for her to escape the confines of our home. With the great weather, I’m actually happy to go out and walk with her more often than usual. It will get cold soon, and earlier darkness will preclude after-work strolls, but it’s great while it lasts. Then, we get to move on to nightly coziness inside with a fire–which is something else Julia has become very fond of.
It’s been a little over two months since the last post about Julia’s LCH. Since that time, many things have happened. To start with, we proceeded on the diagnosis and advice of the local doctors here in Roanoke concerning treatment (those at Johns Hopkins in Maryland didn’t have anything contradictory to say). That meant weekly chemotherapy. Her Broviac central line placement surgery went better than expected, in that the surgeon was able to find a port small enough for her and make it work. A port is preferable to a central line for multiple reasons, so we were thankful for that outcome at the start of her chemo journey.
The chemotherapy itself has been less detrimental than we feared. She doesn’t appear to have any negative reaction whatsoever to the weekly chemo applications, and the only visible side effect is from the Prednisone, which wreaks havoc on her body’s willingness to sleep for extended periods, and increases her appetite. This is tough, but it’s nowhere near as bad as it might have been.
The treatment plan was for six weeks of weekly chemo, then a status check MRI, then six more weeks of chemo depending on the outcome, then another MRI, and then 40 weeks of maintenance at a reduced frequency. The first six-week milestone has come and gone, and Julia made it through the MRI like the experienced trooper she is (outpatient procedure this time, so no hospital stay nightmares). The results were mixed: measurable reductions in all of the skull lesions (yay!), no significant change in the existing spinal lesions, but two new lesions in the spine and one in the sternum (boo!) which were not on the previous MRI. The doctor suspects that those appeared between the previous MRI and the beginning of the chemo, which was a period of about a month. We have only one data point right now, so until the next follow-up MRI a few weeks from now, we can’t know.
Julia, for her part, has done wonderfully. She’s continuing to grow in all of the expected ways. She finally figured out how to scoot on her tummy, then graduated to real crawling on her hands and knees a few weeks later. All of a sudden, she’s mobile! And good grief does she like to move. She’s contained in a play area much of the time, but she needs a close eye on her every other waking moment.
Equally exciting is her developing ability to pull up to a standing position on anything and everything. She can’t stand and balance alone, or walk, but she has become very adept at finding surfaces that give enough grip for her to lift her self with–including cabinet doors and the front of the refrigerator. Unless she’s fascinated with something on the floor, she’s probably either crawling somewhere or standing and looking around, or “cruising” all along her play area fence. It’s only a brief matter of time before she starts walking. Just today, in fact, she was using a dining room chair as a de-facto walker, pushing it around in front of her while she stepped behind it. (It was an accident at first, but then she got all excited and started doing it on purpose after a few seconds.
Her most recent accomplishment has been scaling the stairs up to my office all by herself (with supervision). That’s 15 whole steps! She can manage the whole thing without help most of the time. Only twice has she needed some help to maintain her balance. For being as small as she is, it’s pretty impressive to watch.
She’s also eating plenty of solid food now, especially Cheerios, raisins, peas, and apples. She’ll eat almost any salad ingredient we give her. She insists on feeding herself, but also insists on using her hands for everything, including mashed stuff. Spoons inevitably get pushed away. We’ll have to work on that. At least she’s eating well, though.
In mid-October, we got to take Julia to Colonial Williamsburg for a weekend along with Courtney’s parents. Julia had a bit of a rough time being in an unfamiliar place during the nights, but she thoroughly enjoyed being outside for most of the days, and she loved getting to see some of the animals found there (sheep, horses, and the many dogs that visitors bring). She also had great fun “conducting” the live musical performers at the taverns. She might have accidentally stolen the show on a couple of occasions.
Julia also participated in our recent Halloween festivities as a green-tinted version of Navi, the Kokiri fairy from the Zelda game Ocarina of Time. Courtney went as Link, as seen in the awesome photo at the top of this post. Julia made a great fairy in her adorable costume, though she hasn’t mastered the process of saying “Hey! Listen!” at the most inopportune times. She just…makes baby noises, which I guess is a reasonable substitute at her age.
For now, we’re enjoying her rapid development and working through the weekly unpleasantness of chemo treatments. The next medical milestone will be her second check-up MRI. The next developmental milestone will be either her 11th month, or walking. At this point, we’re not sure which will come first. Either way, life is still exciting for all of us. Only a few more short weeks until her first birthday!