Happy Thanksgiving!

I hope everyone is doing well. Gwen has recently met with her doctors here in Raleigh to discuss the treatment plan moving forward. Not being present at the appointments, I am not exactly clear on all the details, but from what I am getting from my mom and Gwen is that they are going to put off chemo for now.

At present, Dr. G. does NOT recommend weakening Gwen’s immune system unless absolutely necessary, especially with COVID numbers on the rise. The plan is to wait and reassess after she gets scanned again in a few months. In the meantime, she is strengthening her dose of current medication. Gwen feels good about this plan.

And for some fun news, the Lung Cancer Initiative gave Gwen’s name to the Carolina Hurricanes for their “Hockey Fights Cancer” month festivities and as such, Gwen was surprised with a visit from Stormy this morning. This also meant that Callie’s class got to see Stormy remotely as she was in the middle of online learning at the time! The visit included a lovely gift basket that contained items she might share with her Canes obsessed niece Kenlee, and a message of support from the Hurricanes.

Go Canes!

Kenlee ❤ Gwen

I hope you all have a wonderful Thanksgiving and please stay healthy and safe!

Gwen Takes the Stage

About a month after Gwen’s big, local ABC11 TV appearance, she had the opportunity to speak at the Lung Cancer Initiative’s Annual Meeting as their “Survivor Speaker.”

She’s on the program cover!

I felt I was tricked into attending an ANNUAL MEETING, but we got to hear a bunch of cool updates about what projects local doctors and grad students are using their grant monies to fund. It is exciting to think about the advancements that may be coming in the future! The dinner was delicious, and Gwen did a great job sharing her story. The event took place on our Mom’s birthday, so it was nice we didn’t have to make her dinner. We are super thankful for all that these doctors, researchers, and volunteers are doing for lung cancer survivors and lung cancer research.

She has recently been scanned and had a trip to Boston – all news was that she is “stable.” She continues to have minuscule spots in her lungs and a spot on her femur.

 

Just yesterday, she ran 4 miles outside – no small feat as the pollen has started here in NC! We are now off school for at least 2 weeks whilst we practice the art of social distancing. Please keep your immuno-compromised and elderly friends, family, and neighbors in your thoughts and prayers! Stay safe everyone!

It’s Lung Cancer Awareness Month!

It’s that time of year again! Are you aware, according to the American Cancer Society, it is projected that there will be over 234,000 new cases of lung and bronchus cancers in 2018 alone??? About 8,500 of them are expected to be in NC. Of the men and women with lung cancer, about 17.9% have never smoked.

For those of you not on Facebook and haven’t already seen, Gwen would love to help raise money for research on her specific type of lung cancer (ROS-1). Here is a link to her fundraising  page: Gwen Strong – The ROS1ders .

I know it has been forever since I have written. Life has been busy and Gwen has been fairly healthy so there hasn’t been much to report! She ran in the annual LUNGe Forward 5K sponsored by the Lung Cancer Initiative of NC.

Gwen was the first female survivor to finish AND got first place for female in her age group! Justin won in his age group as well.

Here’s a shot of all the GwenStrong winners. We were well represented on “the podium.”

She had an eye appointment recently and things continue to look good there. Last week was “scan week.” I had the opportunity to travel with her to Boston. There are a few tiny nodules that are showing in her right lung. These apparently have been present on the past couple of scans, however they are so small that they were not noticed until an observant technician saw them last week and then the previous scans were pulled up to compare. However, these nodules were NOT present a year ago. Both Dr. Garst here in Raleigh and Dr. Shaw in Boston are not concerned at this time as these nodules could simply be a sign of some kind of normal inflammation that we would all occasionally get and never notice, but they will certainly be keeping a close watch on these spots over the coming months.

Other than that, the rest of her body scans were free and clear. Her brain continues to be clear of all the tumors that were present before, and Gwen is not reporting much in terms of side effects.

Doing what we do. And looking like we got up at 3:30 am just to sit in traffic…

The FDA is getting ready to approve the drug that she is getting in Boston, which is cool, but it will likely only be approved for patients with ALK lung cancer even though the drug is clearly also working for patients with ROS-1 so the FDA should stop being stingy with their approvals. At any rate, Gwen would like to stay on the trial to continue helping ROS-1 research, so she will still have to travel up to Boston but may be able to go less frequently in the not-so-distant future.

It was a lovely day in Boston and we actually got to walk around some. The picture on the left is the view from the hallway outside the drs office and the pic on the right is said hallway. Gwen and I both just really like that hallway. It looks cool.

And She Just Ran…

Hello again all! I have been a bit negligent in my updates, but as they say, no news is good news, right? If you are on facebook, then you have likely been keeping up with the goings on with Gwen. But if not… then here you go:

We have hit the road running with another school year after a full and amazing summer. Gwen spent time training for the annual Lung Cancer Initiative of NC LUNGe Forward 5K here in Raleigh. Her goals (other than, you know, fundraising to help the fight against lung cancer) were to A) run the whole time and B) to finish the 5K in under 35 minutes.

I am happy to report on Gwen’s behalf that she completed both goals AND that her fundraising team (#GwenStrong) was one of the top 10 fundraising teams! Thank you to all of you who supported her team from near and far. GwenStrong had a good showing in the medals as well with Gwen being the first female survivor finisher and Justin, Mom, and Dad all medaling in their respective age groups.

Just a couple of short weeks later, Gwen participated in another 5K! This one was a fundraiser at her school. Due to some favorable conditions, she was able to shatter her personal best time by about 4 minutes!

This week was a trip-to-Boston-week. She had scans in Raleigh on Monday and a check up with Dr. Shaw in Boston on Thursday. When we last got a scan report, we were told that she spot(s) in the brain scan were only noticeable to the drs. because they knew where to look (that’s how tiny they had become). This week, the scans were reported as being CLEAR. Nothing in the brain (I don’t think I will ever not feel tempted to make a joke here – sorry Gwen), and nothing in the lungs. No more lung cloud, no more pin prick tumors in the brain. Simply remarkable. The Boston skies were as beautiful as her scans.

Gwen feels very blessed. Thank you for praying for her, asking about her, thinking about her.

Science!

Hello all y’all! Lots of things have been going on over the past several weeks. Gwen is still traveling to and fro due to her participation in the drug trial in Boston. She gets her scans done here in Raleigh and meets with Dr. G. here, too, but goes to Boston to get her meds and have her blood drawn.

After her latest scans, Dr. G. was so excited she called Gwen at home to talk to her about it!

February 2016 – Gwen’s lung “cloud” first appeared.

May 2017 – Gwen’s lung “cloud” has disappeared!

Additionally, of the more than a dozen brain spots (aka “mets”), only 2 are visible in the scans!

Holla! Praise!

Her latest trip to Boston was made a little extra special when she was met at the airport by 2 of her good college friends, Kristen and Rhonda. Her friends accompanied her to the appointment where they took waiting room selfies, and it sounds like they did a bit of shopping, eating, and enjoyed their time together.

Gwen was given permission to go a whopping 9 weeks in between appointments this summer – quite a change from the usual 3. So, if you are keeping track at home, her next scans will be mid-August.

Today, we were able to celebrate Callie’s birthday with Mom and Dad who came back down from NY, Justin’s parents on their way up to NY,  and several family members from VA. (According to Callie, it was the best birthday party ever).

This is Gwen and me with Uncle Kip.

Tonight was the annual NC Lung Cancer Initiative’s survivors event (the past couple of years was a breakfast, this year was an evening affair). Gwen is shown here with other survivors and also placing her handprint on the survivors’ tree.

Thank you all for your continued support, prayers, and well-wishes! They are working! We love you!

Off to Bean Town

Thanks to the many folks who have asked about Gwen (and the family). She is doing fine! As has been the case through much of this two year process, she feels great.

Many have wanted to know what the next step is (and when). Gwen called and left a message with Dr. Shaw’s office last Friday. Their office was closed Monday due to President’s Day which means she didn’t speak to someone ’til Tuesday. She has an appointment for the 28th. The person she spoke to told her that this would be to merely talk about the drug trial. Gwen was not satisfied by this notion as she really wanted some action to take place if she was going to fly up to Boston!

She finally heard back from Dr. Shaw this afternoon. The plan is to go through consultation Tuesday and some screenings maybe Tuesday or Wednesday. If she “passes,” the earliest she can begin the new drug would be next Friday afternoon as her body needs to be rid of her current meds for one weeks before beginning the new one.

The doctors running the trial will be notified that she’s coming, so hopefully things will be good to go and she’ll be able to return back home next Friday evening.

Many thanks to the organizations and individuals who have offered assistance with travel expenses. The offers and prayers are much appreciated and very touching!

Thanksgiving 2016

Gwen had her latest scans yesterday. Much to the surprise of everyone, the scans came back showing no change! Gwen and Dr. Garst were both expecting to see growth in the lung cloud. The doctor said it was quite surprising, actually, that there had not been any change. Gwen had been preparing herself emotionally for a tumor to be forming and for the eventual change in medications. So, this is good news, for now. She will continue the current course of treatment (Xalkori). The rest of the scans looked good.

We were fortunate to spend Thanksgiving with our parents, my in-laws, and Gwen’s in-laws. Lots of good food and great desserts!

Our family has a tradition of going around the table (before we eat), and each person states what they are thankful for this year. Some of our “thankfuls” from the dinner table this afternoon, just to name a few:

• That Gwen had a good appointment
• That Gwen has such a large support system
• Modern medicine
• Turkey (Callie)
• Family
• Teachers

Then we all ate like crazy. Another tradition is to go on a walk in a feeble attempt to make room for more food.

So we walked and then came home to eat some dessert!

We thank all of you for the support and prayers that you have given to Gwen. We hope that you all have had a fabulous Thanksgiving and may God bless all of you!

 

We Came, We Saw, We LUNGed

Today was the big day; the day of the LUNGe Forward 5K. Thank you one and all for your kind support and donations large and small. Team GwenStrong was recognized as the fourth largest as well as the 8th in donations. With your kindness and generosity, Gwen’s team surpassed her goal of $3000 by $1610!

And some of our runners took home medals again this year… Gwen (survivor racer), Justin (#1 in age group), Austin (#1 in age group), and Gennilee (#2 in age group). Callie and Lachlen got medals in the kids dash, too.  Way to represent!

Here’s a mess of pics from the day. First was the introduction of the survivors. Gwen led the moment of silence. She is the one with the microphone.

Next was the mile run. We sent Lachlen off by himself and then got worried when people were finishing and he wasn’t showing up, so Kevin went and met up with him. It turned out he was right around the corner and said that “it worked out great” that we sent him alone because he made a buddy. (Some older guy).

 

And then they were off!

Stroller brigade: Penny and Emma, Mom and Dad with Callie

Dr. Garst on the right

And just a quick 22ish minutes later, Justin and Austin were back. Following not too far behind was one of our pastors, Bruce.

Justin overtaking this hand-holding couple at the finish.

Pastor Bruce praising the Lord he made it to the end!

Here is Gwen and Friend Kristen (not to be confused with Sister Kristen). In the first pic Gwen is waving to us.

Next came Will, Kenlee, Kevin, my parents, and a whole bunch of others whom I did not photograph (my apologies).

The last race of the day was a kids’ dash in which Callie and Lachlen participated.

Lastly, the awards assembly!

Again, many thanks for your support! The Lung Cancer Initiative of NC LUNGe Forward has raised $149266 as of this publishing.

 

 

Gwen Goes To Boston

Remember in my last post when I mentioned the ROS-1 specialist in Boston, Dr. Shaw? Well, Gwen got herself an appointment with her and went up to Boston. We just so happen to have a cousin up there (shout out to Liza!), so Gwen had free lodging and a chauffeur for her trip as well. Mom made the little hop from NY over to Boston to attend the appointment.

This is Gwen and sister Kristen. (A pic with Liza would have been appropriate here, but I didn’t have one with just the two of them.) 

Here are the main takeaways that Mom and Gwen shared: Dr. Shaw is a genius, there are a lot of clinical trials on the horizon, cancer is complicated, Dr. Shaw and Dr. Garst will be collaborating (awesome!), Gwen will stay on the current course of treatment for now (Xalkori).

Okay, now the longer version. Remember that pesky lung cloud? On our last episode, the lung cloud was shrinking much to the excitement of the studio audience and the viewers at home. Well, it is Dr. Shaw’s opinion that the cloud of cells appear to be shrinking because they are really just becoming more concentrated and that their powers combined will become another tumor.

Now, before you get too worked up about this latest news, this is supposed to be not too upsetting… this is weird, I know. It is Dr. Shaw’s belief that Gwen’s body is resisting the Xalkori. She says that this is what happens when the resistance begins; a very slow progression (the cloud has been present since February). If a tumor forms, then it can be biopsied. If it can be biopsied, then they can test it to determine which mutation is present and therefore which medication can be used next.

So, Allisen, why did you say that she is going to stay ON the Xalkori two paragraphs ago? Gwen still feels fine and can breathe fine, so for now, it appears that the only part of her body effected is her lung. I guess we are going to hope for a tumor growth?? so they can biopsy it to help determine the second line treatment… so bizarre. Eventually, if needed, chemo will still be an option since she responded well to that the first time.

In the meantime, please consider joining Gwen’s LUNGe Forward 5K team, GwenStrong, even if you only participate from your couch. She’s harassed many of us on Facebook about it, already… The 5K takes place on September 25!

 

Last year’s GwenStrong team; Dr. G in the blue raincoat.

Summer Scan Time

Greetings all! We have returned from our lovely time up North, which means, sadly, that school is starting this week. We had a very nice summer with a lot of beach days, very little rain, and nice side trips and visits with friends.

We also attended a wedding in Erie, PA.

Oh yes, and Gwen had a birthday.

Upon our return, Gwen had her check-up with Dr. G. complete with brain scan; good news, her brain is still there and the scan showed all is clear. Also, she had a CT scan and a bone scan (it has been a year since her last bone scan).

Prior to discussing scan results with the doctor, Gwen asked Dr. G. about a ROS-1 specialist that some members of her ROS-1 facebook group have mentioned. Dr. G. knew right away about whom Gwen was referring and said that they could certainly set Gwen up with the ROS-1 doctor, Dr. Shaw, (located in Boston). She informed us that Dr. Shaw’s group is the group that discovered ROS-1 and that she would certainly be a valuable resource moving forward.

The CT scan showed IMPROVEMENT in the lung cloud! Gwen just knew it was going to be better. She had a feeling. The cloud has been present since February and got increasingly more dense through June. We compared today’s scan to the ones done in May and June and today’s looked better than both May and June’s scans! The cloud is still there, but it does look a bit less thick, if you will.

We then discussed her bone scan and compared it to the one done last August. (As a reminder, previous scans had shown lesions on her right hip and on her T4 vertebrae). The bone scan today did not show anything on the right hip OR the T4! There was a spot on the back side of her left hip, but Dr. G. wasn’t sure what that was. She continues to get shots every few months for her bones to help strengthen them.

Dr. G. remarked that Gwen was the healthiest looking patient she had seen all day! Such a nice way to wrap up the summer. Her next appointment will be in 3 months. There will be no changes in the course of treatment at this time.

On a separate, but related note, we hope to see some of you at the LUNGe Forward 5K which is being held September 25 this year (as opposed to November; avoiding election season). Gwen is famous because she is on their official publications.

Please consider walking or running with us on the Gwen Strong team! Or you can participate from your couch!

Thank you all for your continued prayers and support!