On Being Knocked Over With A Feather.

I'm not sure that I have enough toys...

Shortly before Lillian Grace was discharged from the NICU last December, she underwent an ultrasound that showed that one of her kidneys was substantially smaller than the other, and only minimally functional. The result was that Lillian had high blood pressure; she went in late January for a follow-up with a pediatric nephrologist, who ordered a second ultrasound which confirmed the results of the December ultrasound. Lillian received medicine to control her blood pressure, and faced the likelihood that a few years down the road she’d need the small kidney removed.

In October, Lillian had a follow-up visit at the nephrologist’s; her blood pressure without medicine was fine, and, as she had not had any infections or other symptoms, he theorized that the second smaller kidney had become completely non-functional — good news, since it would then likely not need to be removed. He ordered a sonogram to have a look and confirm, and scheduled a follow-up visit for December.

Ashley and Josh took her for the sonogram today at Texas Children’s. What they saw on the sonogram were two fully functioning kidneys of the same size. A bit later, Lillian’s pediatrician called after reviewing the sonogram and confirmed that what she saw, too, was two full-sized, functioning kidneys. As the old saying goes, you could have knocked us over with a feather — and we feel like you have (it’s not an unpleasant sensation).

Of course, we’re all not going to get too excited yet; we’ll see what the nephrologist says when Lillian sees him on December 12th. But, still: keep hitting us with those feathers…

Thanks for your prayers and support!

Ashley Update: Tuesday, 11/29

Ashley and Josh visited with Dr Darcourt, her oncologist, yesterday and got the final results of her PET scan and the pathology report on the tumor Dr Zhang removed from her brain earlier this month.

Although the initial look at her PET Scan showed no obvious additional cancer, detailed study showed numerous very small tumors in a number of places in her body. The pathology indicates an aggressive mutated form of melanoma.

Just in the last few months, as a result of research in gene therapy, a new drug — Zelboraf — received accelerated approval from the FDA; it combats precisely the kind of cancer Ashley has and offers new hope for success in fighting later stage melanoma. During December, Ashley will receive radiation to complete the work on her brain tumors: the gamma knife to kill the tumor the surgeons did not remove and traditional radiation in the area where they removed the large tumor. Beginning in January, when the radiation is complete, she’ll begin taking the Zelboraf; it’s a pill taken twice a day, with side effects similar to chemo-therapy.

Ashley is in good spirits, and taking one day at a time.

Thank you for your prayers and support!

Thanksgiving: Ashley and Lillian and a World of Friends

About to get staples removed

This Thanksgiving, our family gives thanks for the skill and dedication of all of the doctors, nurses, therapists and other medical professionals who over the last 15 months have provided the care for Ashley and Lillian and Anne and Richard and Imogen; and for each of you, our friends and relatives and blog readers and strangers, who have prayed for us and helped provide for us and, on occasion, wept with us.

With Grandma Nancy and her sister Aunt Bonnie (who thinks I am cute)

Ashley especially gives thanks that Dr Zhang had her staples removed today and gave her permission to wash her hair; she thinks there was enough oil built up to power a small city for a week or two. She’ll rest up with Lillian and Josh this weekend, and work up to the radiation preliminaries next week.

Happy Thanksgiving!

Ashley Update: Tuesday, 11/22

Over the last several days, Ashley’s pain and nausea have diminished, though they haven’t disappeared. In the last couple of days, she’s finally managed to eat real food (and keep it down) in small portions. She’s very weak (she hasn’t really had much to eat that she’s managed to keep down for a month), but she’s getting up and walking around the apartment every hour or so, starting work on getting her strength back. She’s also very happy to be off the heavy pain killers; the world seem less foggy to her.

Tomorrow, she has a follow-up visit with her neurosurgeon (might get the staples out of her head) and preliminaries for radiation treatment begin the Monday after Thanksgiving.

Thanks for your prayers and support.

 

Girl With Rock

I enjoy giving rocks to my friends

Relaxing

Sometimes, you've got to get some liquid refreshment, stretch out and take a break.

A Girl, Her Shark and Her Mom

Protecting mom from a dangerous shark

Ashley Update: Thursday, 11/17

Ashley continues to recuperate at home. She’s still fighting nausea, but decided to stop taking the narcotic pain pills and switch to Aleve for pain. She thinks some of her nausea is a side effect of the pain pills, and (other than easing pain) she hated the way the pain pills made her feel. So far, pain is bearable, and she feels less doped up.

Next week will be a down week in terms of therapy, and then, beginning the Monday after Thanksgiving, she’ll start a new round of treatments: off to her oncologist on Monday, another, different MRI preparing for radiology on Tuesday, then a meeting with her radiologist and final preparations for radiology treatment on Thursday. We don’t know yet when the actual treatment will begin.

We’ve been overwhelmed by the kindness and thoughtfulness of bosses, colleagues, friends, family and strangers as we’ve gone through this ordeal; now that the immediate crisis is past, it’s all starting to sink in and we all want to say “thank you” to each of you. Ashley’s got a long and difficult struggle still ahead of her, and your prayers and support are a big part of what’s kept her — and us — going. So, thank you!

15 Months of Lillian

Girls do get tired sometimes

Lillian’s Dad and grandma Nancy took her in for her 15-month check-up today — a make-up date, since it was originally scheduled last Tuesday, but Lillian’s mom’s trip to the ER forced a change in schedule.

Lillian’s now around the 38th percentile for height, weight and head circumference for her chronological age! She has, in most measurable ways, caught up developmentally to full-term babies born at the same time as she was. She’s 30 and a quarter inches tall, and weighs 20 pounds, 4 ounces. Her vocabulary is quite large for a kid her age (both grandfathers tend to talk a lot; there may be a connection). Lillian Grace is a joy and a blessing (except when hungry and in need of a nap).

Ashley rested quietly at home today, working on building her strength for the next stage in her battle against cancer.

Ashley Is Home

Ashley came home from Methodist Hospital this afternoon. A certain small girl was deliriously happy to see her mom (and mom shed a few tears).

Ashley is very tired and still hurting quite a bit, but happy to be in her own bed with her family all around.

We’ll update as we learn more about her continuing therapies, and ask you to keep Ashley and Josh and Lillian in your prayers.