Cancer Fighting

Grandpa John, Mom, Grandma Nancy, Me, Aunt Holly: kickin' cancer's butt!

Ashley visited her oncologist, Dr Jorge Darcourt, today with her support team: her mom, her Aunt Holly and Marissa. She went to get the results of an MRI done on her head last Friday and of a PET scan of her whole body done on Monday. She’s taking the new drug Zelboraf, which targets the particular mutation (the BRAF mutation) of melanoma that Ashley is fighting, and the purpose of the scans was to see if the drug has caused the tumors to stop growing or to shrink.

Dr Darcourt’s news was the best possible: there are no new tumors and all of the tumors that showed on the scans in December and in January have shrunk: in fact, they aren’t currently visible on the scans! Zelboraf is effective in about 48% of the patients who use it; only about 2% get the great result Ashley got today.

This doesn’t mean that the cancer is gone; it’s not. But Zelboraf is the current best drug for retarding the growth of this particular cancer, and (we pray) will be effective for a number of years in Ashley’s case. She’ll get scans every three months or so to check that the drug continues to work its magic.

She still has the unpleasant side effects of the drug, but knowing that Zelboraf is working makes them a bit more bearable. Dr Darcourt also prescribed that she go out and have a margarita for lunch, a prescription she is happily filling.

We are deeply thankful.

Ashley Update: Thursday, 11/17

Ashley continues to recuperate at home. She’s still fighting nausea, but decided to stop taking the narcotic pain pills and switch to Aleve for pain. She thinks some of her nausea is a side effect of the pain pills, and (other than easing pain) she hated the way the pain pills made her feel. So far, pain is bearable, and she feels less doped up.

Next week will be a down week in terms of therapy, and then, beginning the Monday after Thanksgiving, she’ll start a new round of treatments: off to her oncologist on Monday, another, different MRI preparing for radiology on Tuesday, then a meeting with her radiologist and final preparations for radiology treatment on Thursday. We don’t know yet when the actual treatment will begin.

We’ve been overwhelmed by the kindness and thoughtfulness of bosses, colleagues, friends, family and strangers as we’ve gone through this ordeal; now that the immediate crisis is past, it’s all starting to sink in and we all want to say “thank you” to each of you. Ashley’s got a long and difficult struggle still ahead of her, and your prayers and support are a big part of what’s kept her — and us — going. So, thank you!

Ashley Update: Monday

From Ashley:

It’s so nice to have some toes back in the land of the living. I have to thank everyone for all the support and prayers as they meant so much during a truly terrifying time.

Ashley had her full body CT scan today and will discuss with her oncologist, Dr Darcourt, tomorrow. Both Dr Darcourt and Ashley’s neurosurgeon, Dr Zhang, were pleased with what the MRI done yesterday showed — or didn’t show. She’s feeling a bit queasy from all of the contrast liquid for the MRI and CT scans, but her pain is a bit less each day.

Otherwise, she’s learning that life in a big city hospital resembles army life: it’s hurry up and wait pretty much all the time. She misses Lillian a lot (and Lillian misses her); but we’re sending her pictures and videos, and we hope Ashley will be able to go home in a day or two.

Our deepest 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.”

 

Lillian Grace Denby Update: 12/06/2010

New clothes

Lillian Grace is 119 days — 17 weeks — old today.

Lillian’s Weekly Stats:

• Height: 52.5 cm (2 cm gain) 20.66 in
• Weight: 3912 gm (224 gm gain) 8 lb 10.8 oz
• Head Circumference: 34.5 cm (.5 cm gain) 13.58 in
• Milk Volume: 75 mL/3 hours (5 mL gain) 2.53 fl oz

Lillian started the morning with another delicious meal from mom, and for the next hour burped and gazed at her surroundings, spending some time on a study of the 35 week old boy across the room who was born with his baby teeth already in (nursing moms don’t even like to think about that) and had to have one of them pulled today — but that’s a story for someone else’s blog.

Going for my MRI

At 10, one of the nurses and the respiratory team moved Lillian into one of the transport isolettes, complete with its own oxygen supply, and wheeled her to the elevators, then took her down to the first floor and over to the radiology department for an MRI of her brain. For very early, low birth weight babies (as Lillian was), one of the big risks is brain injury or abnormality; Lillian has had several ultra-sounds of her brain already, with encouraging results. Now that she has passed her due date, the team ordered an MRI: it gives them a more detailed look at her brain, and will be used both to diagnose anything the ultrasound might have missed (we should hear results in a day or two) and to establish a base-line for use as her doctors monitor her development over the next two years or so — the time frame in which brain-related developmental issues usually appear.

Lillian behaved well for the MRI team. At one time, the standard practice was to sedate squirmy babies for the MRI. Now, this is only done if absolutely necessary. Instead, they give the baby some sugar solution (Sweet-Ease), which triggers pain-killing chemicals in baby’s brain; it’s very effective at calming babies; they’ve used it several times when performing procedures that they thought might upset or hurt Lillian — they’ll probably use some more tomorrow when Lillian gets her 4 month vaccinations.

My hands

For a couple of days, the NICU team has been discussing Lillian’s respiratory progress: she’s now at 3 Liter flow and 30-32% oxygen mixture on the Thermo-vent high-flow nasal cannula. She’s been very stable, so the team plans to switch her to low-flow nasal cannula this week (a week earlier than originally planned), probably a day or two after she gets her vaccinations. It’ll be another step closer to going home — if she tolerates it. We don’t know yet whether this might mean she could come home a week or two earlier than we thought a few days ago — or not. Christmas, maybe? We aren’t getting our hopes up, but…

Thanks for your prayers and support!