Late Summer in Houston: Lumbar Punctures and Swimming

I’m actually having a good time. My cousin Nathan took this picture.

Ashley went with her mom to Methodist Hospital today so they could extract some spinal fluid to test for the presence of cancer in her spine. Last week, she had a full MRI of her spine: her oncologist will examine the results of both tests together with other specialists, and then meet with Ashley (in a week or so, we hope) to let her know what the tests showed, and whether they believe there should be any changes in therapeutic strategies.

The lumbar puncture procedure took about an hour: 45 minutes of preparation, and about 10 minutes for the actual procedure. Then Ashley spent a couple of hours in recovery for observation and will spend the next couple of days pretty much lying down and doing nothing strenuous — which can actually be pretty strenuous itself.

Lillian got to spend the afternoon first getting muddy, then visiting with her cousin uncle Chris and aunt Jenn, and finally, she got to visit her uncle David’s and aunt Michelle’s and splash and float in their cool new pool. This is all part of the “wear Lili out” strategy, aimed at getting her mom and dad more sleep.

Bare Butts: Hippie Summer

Bare butts are very comfortable

Lillian’s Aunt Elli, Uncle Josh and Cousin Kaitlyn gave her some 1960’s style fringed shirts for her birthday. Lili took to them immediately and now fancies herself a hippie: today in the backyard with her mom she started cramming mud in her diaper, then removed pants and diaper and had a grand time running around butt-naked.

Lillian Grace: Miracle

Reading with my Mom

Today, Lillian Grace went to see her pediatrician, Dr Lisa Rowland, for her two-year well child checkup. She weighs 25.4 pounds (that’s in the 33rd percentile on the growth charts) and she is 34.5 inches tall (in the 66th percentile!). Developmentally, she is performing right where she should be for her chronological age — that is, she shows no signs of her very (23 weeks) premature birth. (She weighed 1.5 pounds and was just 11 inches tall at birth.)

Dr. Rowland thinks Lillian is remarkable — she said that she doesn’t believe she has ever before seen a baby born that early who did not have any major developmental or physical problems at age 2. She said she thinks Lillian is a true miracle child. (I mention this because there are those of my acquaintance who have heard me go on at some length about my miraculous grand-daughter. Dr. Rowland provides hard, scientific testimony that, 1), she is, indeed, a miracle, and that, 2), her grandfather is not always a boring blow-hard — well, at least not always a blow-hard.)

Ashley Radiation Update

I’m in the kids’ waiting room at Methodist Radiation Oncology, waiting to cheer my mom up…

Today Ashley finished a 10-day round of whole brain radiation at The Methodist Hospital. Two weeks ago, a finely sliced MRI of her head showed many small lesions in her brain: too many to treat with stereotactic focused radiation. She continues to take the gene therapy drug Zelboraf and, in the rest of her body, it is doing a very good job of suppressing the growth of tumors. Her doctors believed that since she had had neurosurgery and radiation to treat brain tumors last year, Zelboraf would be able to penetrate the blood-brain barrier, and suppress tumors in her brain as well. This did not turn out to be the case.

Brain scans taken today show that the tumors are breaking up; she’ll go back to the radiation oncologists in a month for further assessment of the success of this round of therapy. In the meantime, she’ll have an MRI of her spine, followed by a lumbar puncture to get a sample of spinal fluid: her doctors want to be sure there is no cancer in the spine before deciding on future treatment plans. She will most likely continue taking Zelboraf, and add a therapy to help suppress brain tumors; her doctors are considering several options.

In the middle of all this, her oncologist, Dr Jorge Darcourt, changed practices; he’s now with Methodist Oncology, so all Ashley’s treatments will now be within the Methodist Hospital system. She’s been very happy with Dr Darcourt and with the quality of care he provides.

Ashley thought she was going to make it through radiation without losing her hair again, but last night after she showered, she found it was mostly gone; Josh trimmed away the wispy remains today. She’s been taking large doses of steroids to combat inflammation in her brain from the radiation, and her face is very swollen as a result; now that the radiation is complete, she’ll taper off of these over the next 15 days. Her radiologist warned her that in a day or two, she’ll likely experience a radiation crash: severe headaches and overall weakness. And, she can expect the skin on her face and scalp to peel as if from a bad sunburn.

With all this said, she is thankful to be here, and deeply grateful to her family and many friends who have shown her so much support and kindness.

Birthday Balloons

I love balloons.

My Birthday — By Lillian

We threw a big bash for Lillian’s 2nd birthday, featuring grilled hot dogs (including veggie dogs for the vegetarians) by Chris and Matt Graves, Grandma Peggy’s fabulous potato salad, and dinosaur cupcakes by the Texas Cupcake Queen, Lauren Massey. In addition to a slew of Houston great-grandparents, grandparents, aunts, uncles, cousins, friends (and some dogs), Lili’s cousin Kaitlyn came down from East Texas with her mom and dad, aunts and grandparents, and Lili’s friend Josie came with her mom. The girls were dressed for getting wet; a number of the grown-ups weren’t, but got wet anyway. (There was some grumbling at Texas girls who decide to have their birthdays in August rather than just about any other not-quite-so-hot month).

Lillian presents this little video with subtitled commentary (with an assist from ace photographer grandma Peggy).

Now We Are Two: A Video

Lillian Grace turns two years old today. In this video, she bangs on her new drum while hamming for her dad as he takes pics and she climbs at the park. Happy birthday, kiddo!