Wednesday: Breathing Again

After a scary few days in the ER and hospital, Ashley is back home with her family. As best her doctors can tell right now, the seizures she suffered on Sunday were the result of bleeding and swelling around two tumors remaining after whole-brain radiation a month ago. While we won’t know definitively for another month, it may be that the cells in these tumors are dying, and thus causing the bleeding. (It’s also possible that they are still growing, but her doctors believe the first case obtains).

Ashley says that at the beginning of the seizure she felt as if gravity had been switched off suddenly and that she was starting to float away from the earth. From that point she remembers nothing of the next half-hour, although she was conscious and talking. She thinks what brought her back to full awareness was hearing Lillian cry: those mama instincts are pretty strong.

Ashley has a slew of new drugs, including anti-seizure and steroid drugs. She also has a new and (we hope) effective anti-nausea drug. (Our family is doing its part to support the pharmaceutical industry.)

Once again, we have been overwhelmed with prayers, kindness and offers of help, and we are deeply grateful for all. Often, I’ve learned, it’s what seems like the smallest thing — a kind word from someone you did not know was listening, a pat on the shoulder from a passing friend, a terrible joke at an awkward moment — that moves you most deeply, and that helps you hang on through the worst.

Monday, Monday: Better News

As we reported on Facebook this afternoon, Ashley’s radiation oncologist, Dr Teh, came by to share the results of his review of the MRI done last night; Dr Darcourt, Ashley’s oncologist, wanted to hear Dr Teh’s assessment before settling on a treatment plan: Dr Teh is expert at reading and evaluating medical images, and has been involved in most of Ashley’s radiation treatments.

His evaluation shows some good news: he saw no new lesions — the lesions that likely caused Ashley’s seizure yesterday are the only two that remain after whole brain radiation finished a month ago. The larger of the two is the lesion that most concerned him when they began whole brain radiation. Even with these two there may be some good news: it is possible that what the ER doctor thought was tumor growth is actually inflammation and bleeding around the tumors, not the tumors themselves growing. He said that they can’t actually see the smaller lesion; they know it’s there because of the inflammation and bleeding.

Of course, it is also possible that those two tumors continue to grow; they will redo the scans in a month, and see at that point. If he thinks the lesions are growing, he believes they will be able to do stereotactic radiation on them (that’s a finely focused procedure that delivers radiation only to the tumor site). They cannot do whole brain radiation again: her brain has had all the radiation that it can safely handle.

Dr Teh will discuss his conclusions with Dr Darcourt, and Dr Darcourt will make treatment recommendations to Ashley on Wednesday. We hope Ashley will get to go home tomorrow or Wednesday. They’ve had an electro encephelogram (EEG) running most of the afternoon; Ashley has electrodes all over her bald head; at least, we hope it’s an EEG and not some nefarious scheme to plant an alien intelligence in her body.

Ashley had lots of visitors today: Josh, her husband (and all around great guy and top notch dad), has been there since yesterday; her grandmother Nancy, who spent the night with Lillian, spent the day at the hospital and running errands for Ashley and Josh. Nancy’s sister Holly also spent the day raising spirits and getting stuff done. Josh’s aunt Lori visited, as did Ashley’s brother Richard and cousins Chris and Jenn.

The most welcome visitor was the 2-year old human dynamo known as Lillian Grace. She thought the hospital room was a wonderful playground, and her only real disappointment was that no one would let her pull the wires out of Ashley’s head.

We are all also grateful for all the prayers and kindnesses from family, friends and strangers from around the world. I don’t know how or why, really, but all those prayers work in some way that defies description. Nancy and I were in the hospital cafeteria yesterday afternoon grabbing a quick bite: Nancy told me the whole story of what happened when Ashley had her seizures, and we talked about what the various possible prognoses were. A little while later, another patient, in a wheel chair pushed by her husband, came to our table.

“I couldn’t help overhearing your story,” she said, “I just want you to know we will be praying for your daughter and for you.”

It was a small thing, I suppose, but certain old cynics were glad they had remembered to stuff some Kleenex in their pockets.

Ashley Update

Ashley met with Dr Darcourt, her oncologist, this morning in the hospital. Several of the tumors in her brain are bigger, even though she had radiation treatments on her brain a month ago. The tumors are in inoperable locations and her brain will take no more radiation.

Dr Darcourt will consult with his colleagues and will research alternatives. At this point, she will likely enter a clinical trial, if there is one that looks promising, or undergo some form of intense chemotherapy.

She should get to go home tomorrow or Wednesday on anti seizure medication and back on steroids.

All prayers are welcome.

Sunday: Seizures at Trader Joe’s

On Sunday morning, after attending the early church service, Nancy picked up Ashley and Lillian; Trader Joe’s opened a new store in the old Alabama theater, and they thought they would beat the crowds, check it out and see if Two Buck Chuck was actually drinkable.

They found a parking space right in front of the door, but as they pulled in to it, Ashley said that something was wrong; she took a couple of sips from a bottle of water, but then could not get the bottle back in the cup holder. Nancy took it from her, and Ashley had a seizure: her body went stiff, but her hands and feet shook wildly. That passed, then her eyes rolled back in her head, her back arched, and spittle came from her mouth. Nancy immediately called 911, and they dispatched a Fire Department ambulance and EMT team. The whole seizure episode lasted about 20 seconds, but Nancy said it seemed like an hour.

Lillian, still in her car seat, began to cry: she didn’t know what was happening, but she knew she did not like it. The EMTs arrived very quickly; when one of the EMTs approached the car where Ashley still sat, she let out a loud scream; then Lillian joined in. Nancy helped Ashley calm down, and the EMTs got Ashley on a stretcher and began their assessment. Ashley had regained awareness by this time — she remembers nothing about the 20 minutes or so after telling her mom that something wasn’t right except for Lillian screaming — and could answer their questions.

After the initial evaluation, the EMTs put Ashley in the ambulance, and insisted that Nancy and Lillian ride with them — they thought that would be safer — so they strapped Lillian and her car seat into the ambulance and headed off to the emergency room at The Methodist Hospital in the Medical Center. Several of the people from Trader Joe’s came out to help — the manager offered to drive Nancy’s car over to the hospital, though she decided to leave it there until later — and they impressed Nancy with their thoughtfulness. Nancy says that she was so flustered that her first thought was to tell the manager that she was sorry to hear about the peanut butter recall, but she managed not to do so.

Josh met them at the ER, and they quickly got Ashley into a bed there, and hooked her up to the usual machines, drew immense quantities of blood and sent her off for a CT scan. Meanwhile Lillian thought the ER waiting room was a great playground, and had a fine time jumping off of chairs and getting tickled by the occasional passing nurse. Lillian’s grandfather came down and got Lillian and Nancy; they went and got Nancy’s car. Nancy then went to Ashley and Josh’s apartment to pick up some things — Josh had run out without his wallet — and Lillian’s grand father took her to her Uncle David and Aunt Michelle’s where she spent the rest of the day swimming and playing with her cousins.

The CT scan showed that one or more of the tumors in Ashley’s brain had increased in size, despite the ten sessions of whole brain radiation she underwent a month ago; the doctors admitted her to the hospital, and moved her to a room on the 4th floor of the Main building; that’s where they handle neurological cases.

In the evening, they took her for an MRI of her brain, and, on Monday morning, for an ultrasound of her liver. We hope to know more later today.

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