Thanks to Ashley’s Doctors, Nurses and PCAs

We in Ashley’s family give our deepest thanks to those who treated and cared for Ashley throughout her illness. I realize now that we should have kept a list of the many, many skilled professionals who helped with her treatment; even if we don’t remember your names, you are in our hearts.

With Ashley from the time she was first diagnosed was her oncologist, Dr. Jorge Darcourt. His skill, compassion and gentle humor helped armor Ashley for her fight and at the end, helped her go in peace. He is a fine physician and a fine man. Ashley also regarded Dr. Bin S. Teh, her radiation oncologist, very highly and benefited from his considerable skill. And Dr. Jonathon Zhang gave her an extra year of life when last year he removed a large and dangerous brain tumor.

Most especially, we thank the many nurses and personal care assistants who work long, hard hours to maximize the comfort and dignity of their patients. Carrie, a PCA in the oncology ward at Methodist, spent many of Ashley’s final hours with us, easing her anxiety and pain — she is representative of many.

Most of Ashley’s in-patient care was at The Methodist Hospital, a very good hospital. At the end, the wonderful people at Houston Hospice assisted with her care.

Thank you all, whether named or unnamed here, for your service to our beloved Ashley.

Difficult News

Ashley’s condition has worsened. We have reached the end of therapies that are likely to prolong her life. We are shifting simply to trying to alleviate her pain.

We thank you for all your prayers.

Some Early Christmasing

On Saturday, Josh’s mom and dad, Peggy and Keith Denby, his sisters Cari Denby and Elli Williams, Elli’s husband Josh and daughter Kaitlyn all drove down from Huntington to celebrate a bit of early Christmas with Lillian and her mom and dad. Lillian got to open a bunch of presents (with the help of her dad and cousin). Her mom got to watch via FaceTime from the hospital. Among other cool gifts, Lillian got a rocking horse and bean bag chair. She rides the horse until she (and it) are exhausted, then sprawls on the bean bag chair until she has recovered enough to start again.

Cari, Elli and the two Joshes (Elli’s and Ashley’s husbands share the same first name) came to the hospital to visit and give Ashley some gifts. One was a digital picture frame which we’ve loaded with pictures of Lillian (there are a lot) and of Ashley and Josh, and put it at her bedside.

Friday at the Hospital

Ashley moved today from the Cardiovascular unit in Methodist’s Dunn Tower to the oncology unit on the 8th floor of the Main building. (Methodist is a very large hospital and finding your way around inside can be challenging). She continues to receive treatment for blood clots, but expects to begin radiation Monday (as with all hospital scheduling that could change anytime) to reduce the tumors in her brain.

She is still very weak and in considerable pain and discomfort, so they’ve engaged the hospital’s Palliative Care Team to assist with her care — they supplement her regular doctors, concentrating on her physical and emotional well-being, and pain relief.

Thank you for your prayers.

Wednesday Evening

Yesterday evening’s echo cardio gram of Ashley’s heart and lungs showed improvement: the blood clots are not as large. She had her second day of physical therapy, and her nausea appears to be under better control — she actually ate well at dinner (we smuggled in some non-hospital food).

She’ll be in the hospital at least until some time next week: her doctors continue to monitor her condition closely, and she’s getting interventions for various unpleasant side-effects of prolonged hospital stays. She’s not sure when she’ll start her next round of radiation.

Thanks for your prayers!

Update on Ashley

Ashley’s doctors successfully inserted the inferior vena cava filter in her leg yesterday; this should stop the blood clots in her leg from moving to her lungs. The site where they inserted it (her groin) is very painful, as is her lower left leg where the blood clots are. They’ve started her on blood thinners (in low doses because they don’t want to cause bleeding in her brain) to break up the clots and bring relief to her leg.

At the moment, they have her nausea and dehydration under control, and she has been able to eat and keep down some solid food, so she is feeling a little bit better.

She is scheduled for radiation on Friday, and will begin Yervoy infusions next week. We aren’t sure yet how much longer she will stay in the hospital.

Thank you for your prayers and support.

Ashley back in Hospital

After a couple of difficult weeks, Ashley’s doctor re-admitted her to the hospital yesterday. She’s had problems with nausea, which defied various attempts to control, and was dehydrated. More concerning is that she has developed blood clots in her left leg — a pretty dangerous condition.

She will receive an inferior vena cava filter today which should prevent blood clots from traveling to places that we don’t want them to go.

She’ll also receive some blood thinners, but in low doses because we don’t want to cause more bleeding in her brain.

She is in quite a bit of pain right now and thoroughly miserable.

Radiation is scheduled for Friday.

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.

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..