A New Year

One of the advantages of traveling around at Christmas time is that you have multiple opportunities to open presents. Here’s Lillian with Nancy and Josh opening presents from her great-grandmother Anne.

We’ve somehow made it into a new year: Josh and Lillian made the transition from 2012 to 2013 quietly in their home: Lillian very quietly as she slept through the great event.

Josh and Lillian have been organizing their living space (actually, Josh has been arranging, Lillian has been un-arranging and Josh has then been re-arranging). Lillian has out-grown her high-chair, and they are preparing to set up a new table and chairs in their dining area. Josh and grandma Nancy have to go back to work tomorrow, and Lillian for now will spend the days with her great-grandmother Anne and her grandpa John.

We’re all doing okay most of the time, missing Ashley terribly, of course, but keeping busy, and relying on the continued support and kindness of so many friends. Lillian is a great joy: an intense, demanding and exhausting joy, to be sure, who every now and then finds it necessary to remind you that she does indeed know how not to be a joy — I’m sure just so we can be grateful that she usually chooses joy.

The Denby Clan (and its non-Denby groupies) wish you all a very happy new year!

Zoo Safari

Lillian and her cousin Kaitlyn went to the Ellen Trout Zoo in Lufkin on Saturday.

Before they left, Lillian got in the mood by playing with Kaitlyn’s dog: like her mom, Lillian loves most four-legged creatures:

Aunt Elli put a bow in Lillian’s hair, while Lili sat in grandma Peggy’s lap:

At the zoo, Aunt Cari helped her ride a lion. It was almost as much fun as her rocking horse back home, if a little tamer:

Uncle Josh, Kaitlyn, grandpa Keith, aunt Cari and Lillian all enjoyed pointing at the animals. However, Lili’s favorite thing to do at the zoo was to plan escapes and then execute her plans by running away while laughing madly:

Lillian and her dad try to figure out what’s going on. As far as Lillian is concerned, it’s a real head-scratcher:

Boxing with Dad

More from grandma Peggy: This picture is of Josh and Lillian in her favorite “Box car”. She loves sitting on top of, sitting in, and wearing boxes on her head! Too cute!

Literary Discussions with Lili’s Dad: A Video

In the Pool with Dad

My dad’s got me! (Aunt Lori Wenner took the picture)

Lillian and Josh joined Grandma Peggy and Grandpa Keith Denby at a pool party at their Uncle David Wenner’s home in Kingwood. Lillian swam, ate burgers and had a blast hanging out with grandparents, aunts, uncles and cousins.

Ashley Update

Me and my Dad

Ashley went today for her regular check-up at her oncologist (the picture is of Lillian and her dad sending her off to the doctor), and is doing okay. Aside from pretty constant joint pain and occasional nausea, she has been feeling reasonably well (knowing that your cancer drug is working helps!). She’s lost all of her eyebrows and her eyelashes are going fast, but she’s maintaining enough hair on her head for a Marine-style buzz cut.

She visited her dermatologist a few weeks ago and had some suspicious spots removed from her skin. One was a basal cell carcinoma: these are a common side effect of Zelboraf, which slows the growth of melanoma, but can accelerate the growth of basal cell cancers, the other common form of skin cancer. Thus, she makes regular visits to the dermatologist for full-body mapping of skin growths: he removes anything suspicious.

Thanks for your prayers and support!

Ladybug

My ladybug PJs

The chief blogger hasn’t blogged much lately as parental care giving has consumed most of his time.

Lillian is 19 months old and growing like a weed. She’s getting taller: her mom and dad keep moving breakables and bottles to higher and higher shelves. She’s a bundle of energy, in constant motion whether awake or asleep. She’s a talker, babbling mostly, but there are real words mixed in. She’s a walker, and when she has her shoes on, she’s a stomper.

Lillian and her folks drove up to Huntington last weekend for her cousin Katelyn’s third birthday party. Katelyn is enamored of princesses, and so that was the theme of the party. Lillian thinks her cousin is very cool and sophisticated. (Katelyn let Ashley know that Lillian told Katelyn that Lillian wants a princess party for her second birthday in August.) Lillian also loved visiting with grandma Peggy and grandpa Keith, and her aunts Cari and Elli. Ashley and Josh had a great time, too, despite the torrential downpours on the drives up and back.

On the phone

Ashley continues her cancer therapy: she’s back on the full dose and will have a scan in a few weeks that will tell whether the Zelboraf is stopping the growth of her cancers. She’s lost her eyebrows and most of her hair, but she has some fetching hats and scarves to wear when she goes out (MariCarmen Wiedemann knitted several matching caps for Ashley and Lillian). Ashley has to be very careful to limit sun exposure on her skin due to the drugs she is taking: they’ve caused a lot of skin problems. She’s also having joint pain and stiffness; she uses a cane sometimes when her knees and ankles are affected. But despite all that, her spirits remain good most days, and Lillian’s always there to brighten her spirits.

Lillian and Ashley: February 2012

Me and Mom

Ashley began her cancer treatment with the new drug Zelboraf at the beginning of January. She’s spent most of January learning its side effects. She’s had some nausea, but has effective drugs to counter this. She continues to lose hair (she thought it was a bit odd when half of one eyebrow fell off one morning), but she got used to that during last year’s treatment. The worst side effect has been severe joint swelling and pain, similar to the effects of rheumatoid arthritis; she can’t take most of the drugs that would counteract the swelling because they aren’t compatible with Zelboraf. She’s also had a number of skin rashes, acne and rosacea; she now sees a dermatologist regularly; he’s prescribed some effective medicines for the skin issues.

Ashley and Lillian spend most weekdays with Lillian’s grandfather and her great-grandparents. Lillian particularly likes rainy days: it means she can go out in the backyard and get muddy (and occasionally try a mouthful of Houston’s tasty clay soil).

Me and grandma Peggy

Last weekend, Lillian’s grandma Peggy came down for a visit and they got to hang out and play with Lillian’s collection of toys. Her dad, Josh, celebrated his birthday this week and Lillian enjoyed a large portion of ice cream cake: she required a bath to remove a lot of it.

Thanks for your prayers and support!

 

Ashley Update: 1/6

Mom and me: how much longer do I have to sit here?

Ashley and Josh went to see her oncologist, Dr Jorge Darcourt, today to review the results of the full-body PET scan completed last week. The results were encouraging (in stage 4 cancer terms): the various tumor locations have not grown appreciably since her last PET scan in November. Since the brain tumors she had were pretty aggressive this had been a concern. Additionally, the scan showed that there was no new cancer in her brain since those tumors were removed.

Her new gene therapy treatment (Zelboraf) begins next Tuesday; she’ll take two pills a day. She’ll also get a new strong anti-nausea drug (nausea and hair loss are two of the most common side effects). She’ll visit a dermatologist once a month for a mole check: one of the other side effects is a much-increased risk of cutaneous squamous cell carcinomas, another common variety of skin cancer, and she’ll go in for a PET scan every two months.

Ashley thought she’d start the Zelboraf today, so, assuming she’d feel miserable and nauseated, she and Josh stopped at Whataburger for some greasy but delicious breakfast taquitos on the way to the oncologist; but she got a reprieve, so she’ll spend the weekend sampling a few more guilty pleasures while she can still enjoy them.

Thanks for your prayers and support!

 

Lillian the Artist

Happy New Year from Lillian and her family!

I'm an artist like my dad...