Ashley Radiation Update

I’m in the kids’ waiting room at Methodist Radiation Oncology, waiting to cheer my mom up…

Today Ashley finished a 10-day round of whole brain radiation at The Methodist Hospital. Two weeks ago, a finely sliced MRI of her head showed many small lesions in her brain: too many to treat with stereotactic focused radiation. She continues to take the gene therapy drug Zelboraf and, in the rest of her body, it is doing a very good job of suppressing the growth of tumors. Her doctors believed that since she had had neurosurgery and radiation to treat brain tumors last year, Zelboraf would be able to penetrate the blood-brain barrier, and suppress tumors in her brain as well. This did not turn out to be the case.

Brain scans taken today show that the tumors are breaking up; she’ll go back to the radiation oncologists in a month for further assessment of the success of this round of therapy. In the meantime, she’ll have an MRI of her spine, followed by a lumbar puncture to get a sample of spinal fluid: her doctors want to be sure there is no cancer in the spine before deciding on future treatment plans. She will most likely continue taking Zelboraf, and add a therapy to help suppress brain tumors; her doctors are considering several options.

In the middle of all this, her oncologist, Dr Jorge Darcourt, changed practices; he’s now with Methodist Oncology, so all Ashley’s treatments will now be within the Methodist Hospital system. She’s been very happy with Dr Darcourt and with the quality of care he provides.

Ashley thought she was going to make it through radiation without losing her hair again, but last night after she showered, she found it was mostly gone; Josh trimmed away the wispy remains today. She’s been taking large doses of steroids to combat inflammation in her brain from the radiation, and her face is very swollen as a result; now that the radiation is complete, she’ll taper off of these over the next 15 days. Her radiologist warned her that in a day or two, she’ll likely experience a radiation crash: severe headaches and overall weakness. And, she can expect the skin on her face and scalp to peel as if from a bad sunburn.

With all this said, she is thankful to be here, and deeply grateful to her family and many friends who have shown her so much support and kindness.

Update on Ashley: New Brain Tumor (7/29)

Ashley

Ashley went in for another PET scan at Oncology Consultants. Her blood tests showed a suspicious protein level that’s often a marker of new tumor outbreaks. The only way to see what’s actually going on is with a scan. Since the drug she is on is a new one, getting the insurance to pay for the scan was a battle — one in which we scored only a partial victory: cancer ain’t cheap, even with insurance!

The first attempt at a scan on Thursday was not successful: Ashley’s got very difficult veins (she’s known as “the girl with no veins”); after 15 attempts to get the IV in to inject the dye, she’d had enough. She went back this morning when the nurse who specializes in difficult sticks was there: she got it in on the first try, and Ashley got her scan.

The scan showed that she has a new, small tumor in her brain, about the size of a finger tip; there are no other tumor outbreaks in her body. She is going to see the radiologist at Methodist Hospital tomorrow or Wednesday, and should have it zapped on Thursday or Friday.

We’d appreciate your prayers!

Ashley Update: Monday, 12/5

Ashley's Radiation Mask

Ashley went to Methodist Hospital’s Radiation Oncology Department today for radiation treatment on the three tumors in her head (one was removed surgically a couple of weeks ago). Dr Arnold Paulino headed the team. The treatment took about two and half hours; Ashley’s head was immobilized in a mask (see picture); they took a break after treating each tumor — the mask was very uncomfortable. Dr Paulino believes the procedures went very well; Ashley will have another MRI and a follow-up with Dr Paulino next month to check the success of the treatment.

She has a headache and is very tired, but is doing well and in good spirits — she’s very happy to have completed this next step in fighting her cancer. She gets to rest for a couple of weeks, then does another PET scan at the end of December, and will start treatment with Zelboraf in January.

Thanks for your prayers and support!

Ashley Update: Thursday, 12/1

Ashley went in today to Methodist Hospital’s Radiation Oncology Department for the preparation for her radiation treatment next week.

She learned that she has an additional small tumor in her head right underneath the place where the large tumor was removed. This newly discovered lesion also will be treated with radiation. The radiation team reviewed all the possible side-effects with her (the new tumor is near her auditory nerve on the right side and there is some possibility of eventual hearing loss on that side), then fitted her with a radiation mask. The mask will hold her head in place during the treatment, and the radiologists use it to place markings to guide them when doing the actual radiation treatment; this means that not all of what remains of Ashley’s hair will be shaved off, and that the markings won’t be done on her skin. After fitting the mask, Ashley went in for a CT scan, where the team marked her mask.

She will undergo the radiation treatment for all three spots on Monday. The treatment should take about an hour and a half.

Nancy, Lillian and Nancy’s sister Holly went down to the hospital with Ashley. Lillian charmed everyone, and Ashley thought the staff in Radiation Oncology were wonderfully caring and supportive.

Thanks for your prayers and support!

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.

Ashley Update: Tuesday

Good news today: CT scan was clean and did not show any additional areas of concern; and Ashley will go home this afternoon — much to Lillian Grace’s relief! Grandparents are ok, but moms are better, as far as she is concerned.

Once she’s released, she’ll set up a date to begin radiation treatments. Once radiation is complete, she’ll start follow-up therapies. Her oncologist is sending the tumor mass off for analysis, and the results of that may help direct the course of treatment.

Thanks for your prayers and support.

Ashley Update: Sunday

Ashley spent a quiet Sunday in the hospital. Josh has had her up walking around, she’s getting regular doses of pain and anti-nausea meds (her head hurts a lot, though she says it’s a different and more bearable pain than the headaches caused by the tumor), and she is eating solid food.

She had an MRI this morning and is supposed to get a full-body CT scan tomorrow. When she was on her way down for the MRI, a little boy and his mom got in the elevator with them. He stared at the rather impressive stapled incision on the side of Ashley’s head. “Mom,” he asked, “What happened to her?”

“Hush, sweetie, ” she said, “That’s what happens when you don’t wear your bike helmet.”

 

Ashley Update: Saturday

It’s been a quiet day for Ashley. She reports that having your head opened for surgery leads to a bit of pain. Unfortunately, there is a nation wide shortage of the pain killer that induces the least nausea in Ash, so she’s getting anti nausea meds, too.

She’s been up walking the halls a bit, and has eaten the first solid food she’s had in a week. Other than that, she’s slept and visited with family.

Thanks for your prayers and support.

Ashley Update: Friday Evening

Ashley moved to a regular room in Methodist’s neurological unit this afternoon. Various doctors have been in testing her and having her walk around: all physical signs are positive, and she’s able to get up and move around her room a bit, and she’s been able to eat a light lunch and supper.

In the next couple of days, she’ll get a radiological assessment to determine what the best course of treatment will be. She’ll do radiology at Methodist, but it won’t start for at least 7 to 8 days after her surgery.

She’s supposed to receive a CT scan sometime soon, and a full body MRI on Monday. Right now, it looks like she’ll go home Tuesday. Ashley’s husband Josh is holding up well and is rotating staying at the hospital with her with Ashley’s mom, Nancy. Josh’s mom, Peggy, is taking care of Lillian Grace, with an assist from Josh’s sister Cari and friend Sylvia. Lillian enjoys being spoiled.

Ashley thanks everyone for prayers and thoughts. We’re reading all the comments from the blog and Facebook and elsewhere to her; they’ve been a real source of comfort.

Ashley Update: Friday Noon

Happy to be here!

Ashley’s nurses got her out of bed and gave her a bath while she sat in a chair. She will move out of ICU sometime today.

She’s alert and with it, though very tired and in some pain, though it’s a different and more bearable pain than the tumor was causing. She’s getting lots of meds, and hasn’t yet got much of an appetite.

As you can see in the picture, they shaved the right side of her head; she has several other little bald spots where they had electrodes attached to her head. Her right side, around where they put the central line in, looks like a vampire has been nibbling on her. They had to put an IV in her left arm; they did not want to, since earlier this year the lymph nodes on her left side were removed; that IV is out now and she’s getting a cocktail of antibiotics and the staff is monitoring this closely.

But none of this bothers Ashley very much: she is just happy to be here.

Thanks for your prayers and support!