‘dem Bones, ‘dem Bones

It has been so long I almost forgot my password! It has been quite an eventful spring/summer for Gwen and family.

As you may remember, Gwen had some spots in her brain that her last medication was doing well to control. Well, all good things come to an end. There was some back and forth about radiating the spots, but alas, the tumor board here in NC did not concur on this course of action. Her doctor in Boston was adamant that radiation be done, therefore they took a trip to Boston May 9th and 10th for radiation. The plan was to stay on the current medication as it was doing a decent job on her bones (the spots looked to be healing).

In this time, Gwen has been getting regularly scanned in Raleigh. Her team of doctors has worked well with Gwen and Justin to accommodate their summer travel plans, which include a large chunk of time in NY as always, so the most recent round of scans was moved to Boston, and as long as they were heading East to Boston, might as well throw in a trip to the Cape!

They left NY around July 17 and returned around July 21 (I could ask Gwen the exact dates as she is in the next room right now, but apparently I am too lazy). The latest scans revealed that the medication was no longer working on her bones (In fact, today she mentioned her bones hurting, like the kind of pain you feel if you press on a bruise).

Once again, we are thankful that science is staying one step ahead of this dumb cancer, and Gwen is able to get in on a clinical trial that is in phase 1 (her previous trials have all been in phase 2) and has shown some good results so far. The downside here is that her NY vacay plans will be cut short as she will have to go back to Boston for several days next week to go through all the hoops one needs to go through to start in a clinical trial. Then, it is our understanding, she will need to go to Boston once a week for 3 weeks, then every other week for a couple of months, and then once a month for who knows how long. One of these trips is scheduled for the first day of school, so that’s fun.

In the meantime, Gwen, Justin, and Callie are making the most of the summer and hanging out with us in NY.

Continued prayers are always welcomed! I will try to be better with the updates (but NOT after every single trip to Boston as Justin jokingly suggested I do because there’s just no way I will get my act together to do that).

May in Boston

Gwen had another appointment in Boston yesterday. We took advantage of the appointment to have a girls’ weekend with mom, sister Kristen, Gwen, and I. We had a great time together and the weather was amazing! We crammed in as much walking as I could handle, met up with our cousin Lee on Sunday, and managed not to get lost.

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Some background/timeline information to catch us all up leading into the appointment:

-November 2020: blood biopsy performed with inconclusive results

-February 2021: routine scans showed new growth

-April: repeat blood biopsy showed positive for a mutation

-May: scans showed additional lesions especially on the spinal column, a spot on her shoulder bone that is growing, and that the few spots that were radiated seemed smaller. The non-bone areas were stable (abdomen, lungs, brain).

The blood biopsy revealed what is called a ROS-1 G2032R resistance mutation. Bad news: This basically means the cancer cells are outsmarting the medication. Good news: There is a new medication in phase 2 of clinical trials that is specifically targeted to the ROS-1 G2032R mutation. This is the first ROS-1 specific drug. Bad news: Gwen does not qualify for the trial due to having been on 2 other targeted medications and having had some chemo in the past.

Going into the appointment yesterday, the hope was to find a way to get the medication anyway. We were instructed to cry if necessary. Fortunately, it did not come to that as the doctors in Boston and Raleigh decided that this new medication, Repotrectinib, was still a good option for Gwen.

It will take a few weeks to jump through the paperwork hoops, which left Gwen still feeling anxious, but for now we know her current medication is still doing ok controlling the cancer in the other parts of her body.

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Radiation (again)

So this is a little overdue – partially due to my own forgetfulness. Gwen has met with her Raleigh and Boston doctors and it was determined that it was time to radiate her bone spots. Things were a little bit larger than previously thought, AND a new spot was found on her sacrum. It is ok if you have no idea what this is. I think only a small portion of the population does. So here is a visual for you:

stock photo

Upon closer inspection, a hairline fracture was discovered on the sacrum. The hope is the scar tissue that will remain after radiation will fill in the fracture.

She is actually getting radiation on the sacrum, left ilium (hip bone), and right femur. The spots have progressed to the point that a fracture is a concern. The doctors have told her to limit activity in terms of jumping and told her not to fall. I mean, I am not sure about you guys, but I am pretty confident we are all out here trying not to fall… This is the first time she has been put on any kind of physical restrictions, so that has been a little humbling.

Here is a pre-radiation appointment shot of the femur radiation spot:

Apparently, it isn’t as big as it looks

She had radiation this week and will continue next week. She is doing okay. Meanwhile, we are now fully vaccinated, so that is good and we are excited!!!

It’s Lung Cancer Awareness Month!

I cannot even remember our last update! It has been quite a year for everyone for sure. Like everyone else, we have been hunkered down with Quarantine 2020 and there hadn’t been much need for an update. We were able to spend some time in NY this summer up at the lake – the COVID cases in that area were slim to none, and we pretty much kept to ourselves at the beach. Gwen, Justin, and Callie did a little bit of travelling with their camper on their way north and ultimately rented a campsite for a month near the lake so we could stay physically distant at night and on rainy days. Thankfully, we had wonderful weather this summer!

Lachlen and Callie enjoying the old-school swing set at the campground

Gwen has continued with her routine scans, doctor appointments, and trips to Boston; although she is now driving to Boston instead of flying. One of the scans that Gwen gets is a bone scan. From the very start of this journey, we knew that there were spots on her bones, and Gwen gets a shot every so often to help strengthen her bones to combat the cancer that is hanging out there. Over the past several months, doctors noted that one of the spots on her femur appeared to be growing. Due to the importance of this bone in carrying weight, it was determined that radiating it would be the best course of treatment. About a month ago, Gwen went through 10 daily radiation treatments on this spot. She tolerated the radiation well – only complaining about some pain after sitting for long periods of time which we are doing a lot right now with remote teaching but that is a whole other blog post.

Those lovely black blobs on her bone and in her hip are the cancer

That pretty much brings us up to this past week when she had her next round of scans. Unfortunately, another spot was found on her shoulder. She and Justin are in Boston right now and have met with doctors there about the next course of action. They will meet with Dr. G. here in Raleigh next week to finalize a plan, but as of today, it is looking like IV chemo in addition to the medication she is currently on will be the treatment. This is not what any of us wanted to hear.

For our long-time followers, you may remember that Gwen started on chemo right away, but she never finished that treatment because it was discovered that she had a genetic mutation. Since she never completed this, chemo is still an option for her, but it has always been the goal to seek other medicinal options as much as possible. Gwen REALLY doesn’t want to do this, as you can imagine, as she has been very blessed to have had such a positive response to the other treatment options.

Thank you for keeping her in your prayers as she navigates this new chapter in her fight against this awful disease.