The Day After…

Dr Zhang, Ashley’s neurosurgeon, says that the surgery to remove the large and bleeding tumor from Ashley’s brain went very well. All early signs are good: her left side is responding normally, and her vision appears to be unimpaired; in other words, they got the tumor without significant damage to surrounding brain tissue. Ashley is currently in the Neuro ICU, suffering from nausea and a bad headache, but conscious and glad to be here. She’ll stay in ICU for the next day or two, most likely.

There are other tumors in her head, though much smaller and not bleeding. She’ll soon get radiation and start Yervoy infusions and, we hope, that will prevent these tumors from growing any more.

Josh spent the night in the ICU with Ashley, Lillian stayed with her grandpa, and Nancy got a bit of sleep. We’ve rotated in the morning: Josh has gone home to get some sleep, Nancy has the wild child, and Lillian’s grandpa is sitting with Ashley in the ICU. We’re trying to keep Lillian on as even a keel as we can; her aunt Michelle has been a big help with Lillian whenever needed.

Lillian got to see and talk to her mom via FaceTime before her mom went in to surgery yesterday. She tried to share her bean and cheese burrito (made for her by her grandma Peggy) through the iPhone. I don’t know if Ashley got any, but I’m still picking bits of bean off the iPhone.

Neurosurgery Eve

Lillian and her grandma Nancy visiting Ashley

Ashley’s neurosurgery to remove her latest brain tumor is set for 11:30 am tomorrow, Tuesday, 10/30. (Ashley is happy they did not schedule it for Hallowe’en). She went down for a STEALTH MRI this morning — this is a technique that combines a ct scan and MRI and provides a detailed 3-D image that the surgeons use to plan their approach to the tumor. Her doctors expect the surgery to take about two hours.

We’re not sure how long afterward she will remain in the hospital; it’s possible that she will remain for her next radiation procedure; it’s also possible she’ll be released and do radiation as an outpatient. In either case, her first infusion of her new drug (Yervoy) will be four days after radiation.

We’ve had lots of support from friends and family, and from the great people at the Methodist Hospital here in the Texas Medical Center. Houston may not be America’s most beautiful city, but, if you decide to be sick, it is a great place to be.

With Grandpa Keith and Grandma Peggy Denby

Lillian in her Olivia costume (minus the ears) at the St. Thomas’ fall fair. She had a blast hanging out with her dad and grandparents.

Denbys Together

Lillian went out to a fall fair with her dad Josh and his wonderful folks, Peggy and Keith Denby, who are down this weekend from Huntington. She likes pumpkins.

Self Study

Lillian visited her mom at the hospital yesterday. While Nancy helped Ashley take a shower, Lillian studied herself in the mirror.

Just visiting

When you are stuck in the hospital, have a 2-year old come visit. It will cheer you up (as long as she doesn’t pull your IVs out).

Ashley’s latest hospital visit began with another seizure late Monday afternoon. Josh called the paramedics, and they took her to the Methodist Hospital ER. Although the ER was very busy (lots of patients waiting on stretchers in the halls), Ashley got right into a room. The ER doctor discovered that her anti-seizure medicine (dilantin) levels were low, and saw on a CT scan that there was some swelling and bleeding at the site of the one brain tumor that remained after whole brain radiation. They admitted Ashley to the hospital for further tests and observation.

Today, her radio-oncologist, Dr Teh, visited and confirmed that that tumor (which he earlier hoped was dying) was still active. He will treat it with finely focused stereotactic radiation (sometimes called the gamma knife). The current plan is to build the mask that will hold Ashley’s head in place for the radiation treatment tomorrow, and begin the actual radiation fairly quickly after that. She is still waiting on an MRI (nausea and a broken machine have caused some delays) that will give Dr Teh more info: he may be able to get the tumor in one treatment, or it may take up to five.

In the evening, Ashley’s oncologist, Dr Darcourt, visited, and told her that they are planning to begin a new therapy in two to three weeks that they hope will combat the cancer in the brain. It’s another new cancer drug called Yervoy (ipilimumab) which is delivered by infusion. We don’t know a lot of details yet, but hope this will prove effective.

In the meantime, her doctors are working on getting the levels of anti-seizure medicine in her blood where they want them to be. She’s also staying on steroids, as they help minimize swelling in the brain, even though one of the side effects causes your head to swell (and, if you got on a bicycle, would cause the US Anti-Doping Agency to ban you for life).

Ashley is hanging in there and appreciates all of your support and kindness..

Pointing and Naming

While her mom is hanging out at Methodist Hospital, Lillian has been hanging out in city parks. At Meyerland Park, there is a plaque on one of the play structures that has shapes and numbers engraved into it. Lillian loves to point to things and have you say their names to her, though she usually doesn’t say much herself; and she thought this plaque was very interesting. We spent a good long while at the park playing the pointing and naming game with the numbers.

At one point I said to her, “You’re very good at this, you know.”

“I know,” she replied, very distinctly and very smugly.

Two years old and already working on the attitude!

Spell caster

Lillian, Her Dad and a Frog

Lazy Beach Days

On Sunday, we packed the CRV with smartphones, tablets, laptops, some clothes, some beach toys, stuck Lillian in her car seat, crammed her dad and grandma Nancy on either side of her in the back seat, put Ashley in the front seat and drove down to Galveston for a week of not-doing-very-much-at-all. On the way, we stopped at Ruchi’s for a delicious (and cheap) Mexican breakfast. Lillian lasted about five minutes in the car after breakfast and then fell asleep (how did parents get children to sleep before the invention of the motor car?).

Shortly after noon, we arrived at the Maravilla Resort on the west end of the sea wall, where Josh’s Uncle David and Aunt Donna have a 2 bedroom condo called Heron’s Rest. We checked in and sprawled out and started relaxing. Lili thinks it’s a very cool place to be, and particularly likes the balcony, though she can’t quite understand why her more acrophobic parents and grandparents won’t let her climb on the railing.

Sunday weather was brisk, so instead of going in the Gulf, Lillian and her grandpa headed off on an exploration of Galveston public playgrounds. She decided the playground at nearby Crockett Park was the place to be, and climbed and jumped and had a blast. Lots of other kids came and went, and Lili studied their playground moves; particularly interesting to her were two boys who fashioned found sticks and palm fronds into swords and pistols and assorted other weaponry and who proceeded to engage in epic battles across the playground.

Chasing shoes

After a while, a five-year old girl rode up on her bicycle and climbed up next to Lillian. Lillian took one look at the girl’s shoes and immediately forgot about the deadly conflict that raged around her. The girl wore a pair of rainbow-colored, iridescent Skechers, covered in stars and with lights that flashed whenever she moved. Lili could not take her eyes off of those shoes. As the girl stood there, Lillian bent down and undid the Velcro straps holding the shoes on, and tried to remove them. The girl looked down and watched but wisely kept her feet firmly planted on the ground.

“She likes your shoes,” I said.

“I know,” she replied, “Everyone does.”

We managed to get back to the condo without being arrested for attempted shoe theft, and scarfed up homemade tacos and burritos, watched the sun go down and got the rambunctious little one to bed without too much fuss.

Monday’s weather was still a bit brisk for us, and everyone was feeling lazy, so we didn’t do a whole lot. Ashley and her mom did a little shopping and Lillian learned the correct buttons to push to get the elevator going (though no one will let her push the cool button with the bell that has “alarm” written on it). Josh alternated reading John Le Carre and Meister Eckhart with photographing fountain pens, and grandpa watched the Texans beat the Jets on Monday Night Football.

Tuesday was one of those perfect weather days you get occasionally in the spring and autumn in Texas: warm without being hot and perfect for the beach which, since it’s autumn and a school day, was uncrowded. Grandma and grandpa took Lillian down to the beach (only a few minutes from where we are staying). Ashley, who can’t be out in the sun due to the medicines she is taking, stayed in the condo with Josh — fortunately, she can get out on the balcony in the afternoon, when it’s shaded, and in the evening.

Lili thinks the beach is the place to be: water, waves and wet sand to dig in; could a girl ask for more? The water was cool, but she did not seem to mind, and ran, splashed and covered herself with sand. (A side benefit of all that activity is that it wears girls out). She had so much fun in the morning that she got to go again in the afternoon and went to sleep without too much fuss a while later.