Tri, Tri, Trial Again

Let me begin with some fun shots from our time together at the lake. For those who haven’t already heard, our family hosts an annual triathlon that totals 1.618 miles (this is the golden ratio for you non-math people) and is therefore called the Nanoman, the complete opposite of an Ironman. Since we have all different ages and ability levels, we are given the course last minute and have to guess how long it will take to complete. The person who has the closest actual time to their guess wins and gets a much-coveted Stanley Cup style “trophy.”

Winners of women’s, men’s, and kids’ divisions.

We also had the annual neighborhood party/boat race and Gwen’s birthday this past weekend. We had 19 people from our family in attendance for all of these events. Of course, we did not get a shot of us all because we attempted to stay sane by not being all together in the same place for any length of time. And despite what it may look like, Gwen was going through some withdrawal from her last medicine and was experiencing some pain, headaches, etc. throughout the festivities.

McLaughlin grandkids

But I digress. Gwen and Justin made it to Boston Sunday, and thanks to the generosity of one of the families here at the lake, they had a place to stay for a few days. Callie got to remain at the lake with us instead of spending time at a boring hospital!

Callie rock jumping

Monday, Gwen had an eye appointment as part of the protocol for the trial. Tuesday, she spent 9 (nine) hours at Mass Gen as she was administered the first dose of the new medication (I don’t know what the medicine is) and had to be under observation for the day. She was excited to report that she started to feel better pretty quickly! Today, she was back at the hospital for a second dose and hopes to feel even better.

Mom and Dad then met Gwen and Justin in Albany to hand off Callie as they will now make their way back to NC just to turn around and come back to Boston mid-month.

Bye, bye summer.

Racing and Traveling

Updates are few and far between these days, which is a good thing! We’ll start back in September with the LUNGe Forward event that was held at the NC Art Museum this year. It was a great venue, and this year was a walk as opposed to a run which was really disappointing to people like myself who love to run so, so much. So, no medal winners to report on this year, but a lovely time was had by all.

#GwenStrong

Most recently, Gwen has had some scans, traveled to Boston for a report, and grabbed a new stash of medication while there. I was fortunate to be able to travel with her for this trip. I was worried about Boston in November, but thanks to climate change it was an amazing 68 degrees and sunny! We had a great day, other than Gwen’s airplane TVs not working on both flights.

Way too early in the morning on the first flight.

Boston Common

In June, her scans showed a mess of white spots in her lungs, and when we saw the comparison to this month, the improvement was obvious and measurable, even to our untrained eyes. There is also evidence of healing in her bones as scar tissue is present there. I don’t know much else as I was in the bathroom when the doctor showed up.

We have many things to be thankful for this year, and hope you all do as well. The next Boston trip is in 12 weeks, so we will touch base again then if I remember.

Happy holidays to you all!

They were decorating everything – Quincy Market

Let’s Try Something New!

Thank you to everyone who has asked about Gwen. We all appreciate your support and prayers so much!

This spring, Gwen received a white ribbon – part of the White Ribbon Project . She was super excited to receive this and help support this project which aims to reduce the stigma of lung cancer.

• 

Gwen, Justin, and Callie have been traveling and making their way up north with an ultimate goal of reaching Boston. And now they are stuck with us at camp.

• 

• 

• 

• 

As mentioned in the previous post, Gwen has been approved for a single-patient clinical trial of Repotrectinib which is the first drug targeted to the ROS-1 and G2032R mutations. We are all very excited that she has been approved to try this treatment, and she received her first dose on July 9th!

Gwen had been feeling some soreness in her hips but has already begun feeling less sore since starting Repotrectinib. Unfortunately she is feeling some fatigue and has experienced some change in her sense of taste- especially with sweets. She said the bite of ice cream she had tonight was “gross” which is practically unfathomable to this family! Needless to say, she is pretty bummed out about that.

• 

Before ice cream was gross.

Gwen will return to Boston on July 23rd for more blood work and to get more medication. The plan will be to increase the dose from one a day to two a day. She will get scans again in late August.

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.

• 

• 

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.

• 

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.

Gwen’s Speech

If you read our last update, you read that Gwen gave a speech at NC Lung Initiative’s Annual Meeting. If you want to see it, it is now posted on YouTube!

Gwen is (Locally) “Famous!”

If you are in the greater Raleigh viewing area, please set your DVRs to record or tune in to ABC 11 on Sunday, January 19, 2020 to see Gwen on the 5:00 pm news! She and her doctor were interviewed for a story on lung cancer and the advances in treatment options.

If you can’t tune in, you should be able to watch the story here after it airs.

 

Gwen – 2019

It seems that the past few times I have updated the blog, I have begun with “It has been a while since I have updated the blog…” and this is no exception. I personally have not had the best year health-wise and thus have been a bit of a slacker when it comes to updates, but as they say, “no news is good news!”

Back in March, I was able to travel with Gwen to Boston.

We had a great trip and had awesome weather for Boston in March. Gwen and I went to her appointment and then spent the day speed-walking the Freedom Trail.

Dr. Shaw was pleased with Gwen’s scans. As with previous reports, brain and abdomen were clear. Both of her lungs have several immeasurable spots that have been stable in size for several months. Since the scans have been stable, Dr. Shaw remains pleased with the current targeted treatment plan (Lorlatinib).

 

This past week, Gwen had another appointment in Boston. Gwen, Justin, and Callie took their time meandering up to Boston.

Again, the report was good – brain and abdomen were clear and those minuscule spots were still present but stable.

They will now be working their way on up to Maine to see the sights before heading back to NY for a few weeks.

Thank you for being such great supporters throughout Gwen’s journey (and for being patient with her slacker blogger).

Christmas Blessings

Another year in the books! And it has certainly been a year of ups and downs for many of us. I hope that you all are experiencing a renewed feeling of hope this holiday season.

Gwen had another scheduled appointment in Boston at the end of December so decided to coordinate that appointment with a trip to Central New York to visit family (hers and Justin’s) for Christmas.

Her appointment was the Thursday before Christmas. She received the gift of clear scans! The “pesky” brain spot that previously was only noticeable to the doctors because they knew to look for it is now gone! They looked for it and cannot find it.

So they have enjoyed the rest of the Christmas week in single digit temperatures (and some below zero temps) here in NY.

Merry Christmas! Stay warm!

Many blessings to all in 2018!

 

She’s Been All Over – Why Not Boston?

So, as many of you know, Gwen, Justin, and Callie have spent the summer travelling all over the country. They finally made it home to Raleigh and then promptly all flew to Boston for Gwen’s latest appointment. From there, they are then spending a couple of days in Lake George before heading back to NC.

Their summer travels went well, for the most part. Although I think Callie would be fine to not see another National Park for awhile. We met up with them in Oregon for our cousin’s wedding (along with our parents, sister Kristen and family, and aunt Jeri) and tagged along for a couple days in Yellowstone. T’was fun! (And we found out that Kenlee is a restless sleeper as she kept the camper shifting around every time she rolled over).

Anyway, on to Boston: lungs and brain were CLEAR. That’s right folks, CLEAR. They see no signs of anything going on in there. 🙂

There was not a bone scan done, so we don’t know the status of the spots she has had on her hip, etc. Nor do I have an update on her eye. But this is pretty darn amazing news! (Kevin and I wish we had her in Vegas with us right now, actually…) Keep all those prayers coming!