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).
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.
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!
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!
It’s been a busy week in Gwen Land. She had a spinal tap yesterday and is having some residual lower back pain and headache from that today. I went with her to Duke today so Justin could work (according to the local news, we teachers are absent too much…).
So here’s what we did while we were waiting:
Anyway, the first appointment at Duke this morning was literally with a Brain Surgeon. We later met with another specialist for a consultation. Being that we were at Duke, we also met with their respective interns. Between all four of those intelligent people, we heard the same thing over and over, “We don’t know what’s in your brain.” I will fight the urge to make jokes here.
Since I was not present at the appointment on Tuesday, I learned some things today. Such as: in August, Gwen’s brain scan had some spots and no one mentioned anything. Apparently, if any of us got our brains scanned right now, we could have spots show up, too. This week, what alarmed the doctors was that there were about a dozen spots and some were in the same exact location as before AND had shown growth. However, if these were indeed cancerous, the expectation would be that they would react to the contrast in the MRI, and they didn’t.
It was the opinion of all four of the people we saw today that Gwen should wait 4-6 weeks, get scanned again, and then reevaluate. Treatment options for “If these are metastases…” were discussed (biopsy/radiation, etc). Also, the brain fluids from the spinal tap will be tested for everything under the sun to try to explain the spots. They said that the spots could turn out to be nothing…
Meanwhile, in between appointments today, Gwen received a call from Dr. G’s nurse (Duke-Raleigh) who had been in contact with Dr. Shaw in Boston. (Recall, she is a ROS-1 specialist). Dr. Shaw wants to see Gwen in Boston NEXT WEEK. (See previous note about teachers and “multiple absences” and you will understand that this gave Gwen a bit of a momentary panic attack).
Gwen was able to talk to Dr. G. tonight on the phone to discuss the Duke appointments as well as the idea of going to Boston. Dr. G. and Dr. Shaw DO NOT want to wait 4-6 weeks. According to Dr. Shaw, spots in the brain that do not react to contrast is something that she sees frequently with the ROS-1 patients (this is actually a question that Gwen tried to ask the doctors at Duke – could this be a different kind of reaction because of her type of cancer. They didn’t think so, but it seems that Dr. Shaw does, and she’s the ROS-1 expert). Dr. G. REALLY wants to get Gwen up there ASAP – she doesn’t want to take chances with Gwen’s brain. Apparently, Dr. Shaw does think that these spots are concerning.
There is a drug that Dr. Shaw can get Gwen hooked up with. Gwen really doesn’t want to leave Xalkori due to the fact that her body hasn’t resisted it yet (it is still working for her lungs), but this other drug has been shown to break through the blood-brain barrier. This course of treatment would also likely mean multiple trips to Boston.
We left the appointments today thinking we had one game plan, and then within a matter of hours, it was thrown out the window!
Gwen knows that, obviously, her health is the most important thing, but we teachers are a warped breed. Sometimes our first thought isn’t “I have to take care of me,” it’s “Oh, how am I going to be absent that much and make all those sub plans and grade all those papers and how will the kids ever be ready for the State Exam??” It is irrational, exhausting, and very, very stressful.
If you are the praying type, please pray for her to find peace with her chosen course of treatment, which ever that may be, and to find peace with putting her health first! And of course pray for her health and the wisdom of her doctors. 🙂
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.
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.
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!