Third Winter/First Spring in Boston

Hello all! I realize it has been a while since my last update. Things in Gwenland have been progressing well. She has recently had an eye appointment that gave a positive report on the remnants of the eye tumor. Every scan she has had has been clear.

This Thursday, I had the pleasure of accompanying Gwen on her most recent trip to Boston. It was my first time traveling to see Dr. Shaw and I learned lots of things that I would love to share with you all just in case you were ever curious about what it is like to be Gwen and in a drug trial in Boston.

Our time together started when she picked me up to head to the airport at 4:30 am. I thought it was sure to be a good day because neither of us overslept.

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Apparently, while waiting for boarding, it is a good time to do schoolwork. I personally felt that it was an un-Godly hour for doing work, but said that I was living “a day in the life of Gwen,” so we did school work until we boarded.

Jet Blue is a fairly nice ride. We caught up on our HGTV shows on the flight and got our choice of snacks and drinks. I learned that you can get multiple if you want. Gwen suggested getting juice and then a water for later but I didn’t listen to her.  We also did schoolwork.

Gwen now knows all the ins and outs of getting to the hospital via public transportation. We took the silver line (bus) to the red line (subway) and were in a ton of tunnels and it was rush hour, cold, foggy, and rainy, so it was very crowded. I just followed her like a puppy dog. Our first stop was to a bagel shop down the street from the hospital where we got some delicious breakfast bagels and I purchased a water because I had not gotten one on the plane.

We then headed to the hospital for Gwen’s bloodwork  appointment. Then we sat. And guess what? We did schoolwork.

Dr. Shaw’s appointments were running a bit behind, so I think we were finally seen a little after 11.

Gwen’s scans were clear! Dr. Shaw was super thrilled because of how very clear the scans are. The spots on her bones that have been there since the beginning are showing signs that they are still healing – which is awesome. Gwen has no signs of any side effects to the medication. The medication is hopefully going to be FDA approved some time this summer, which would mean that it would be available locally in the not-so-distant future.

Next, one of the ladies running the drug trial came in and ran an EKG (I think that’s what she was going) on Gwen.

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And then we waited until about 1:00 for the medication. There was some kind of hold up in the pharmacy… so we did more schoolwork.

When all was said and done, we ended up with about 45 minutes to “explore” Boston before needing to head back to the airport. I took a bunch of pics to document the fact that A) we did actually leave the hospital that day and B) it turned into spring while we were there.

After speed walking around Boston Commons where schools like to take field trips and the Public Gardens where they love statues, we headed back to the airport. I was amused by the fact that Gwen was adept enough with the public transportation system to be able to help some other travelers at the airport. Also amusing side note: people smiled at Gwen all day – no matter where we were. Maybe it was her shirt? 

We ate a quick bite at a sandwich shop at the airport and hightailed it to our gate only to find out the flight was going to take off a bit late. After a few other little mishaps (and more schoolwork on the plane), we finally got back to Raleigh about an hour late and caught the end of Lachlen’s first baseball game.

I hope you enjoyed this account of Gwen’s whirlwind Boston trips.

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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.

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Merry Christmas! Stay warm!

Many blessings to all in 2018!

 

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.

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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!

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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.

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

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).

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

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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!

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).

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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!

Frequent Flyer

Happy spring! I hope you all had a joyous Easter! We are just finishing up our Spring Break and got to have a lovely visit with our sister Kristen. Gwen’s friends swung by from NY, too. Gwen, Justin, and Callie went to Florida to visit Justin’s parents (who work at Disney) for the first part of the break. Things have been busy around here… mostly for Gwen.

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When last we updated, she was headed to Boston to see about getting into a drug trial for a different medication. The earliest she could see the doctor was the Tuesday of that week, I believe. They ran some blood tests and her white blood cell count was too low. She was told that the low count could have been a result of her Xalkori still in the bloodstream. Prayers went out for the count to go up. (A little boy a church added Gwen to his family prayers that day).

The prayers worked, because at the time of the next blood draw her counts were just high enough to qualify her for the trial. She began that Friday (one week after stopping Xalkori). The new drug is called Lorlatinib.

She needs to travel to Boston for checkups and to pick up her refills, basically, every three weeks.

At the end of March, she let her Raleigh Dr. know that she was experiencing some dizziness. Tests and scans were ordered right away (this was about a week ahead of when her next scan was scheduled anyway). It was determined that things were looking good and that the dizziness was some sort of lingering motion sickness from the frequent flying. You see, after that first visit to Boston, Gwen’s subsequent trips have just been day trips, like she’s some sort of fancy business lady or something. (You should ask her about the millionaire she sat next to sometime). Anyway, she is still having some trouble with this and hence was told NO spinning rides at Disney! None!

At her latest check up about a week or so ago, her scans were very, very good. Dr. G (here in Raleigh) said that she could not be more pleased with the results. The spots in Gwen’s brain are diminishing! The cloud in her lung is stable.

So this brings us to last week. Gwen and Justin drove back from Florida in time for Gwen to fly straight to Boston on Good Friday to see Dr. Shaw. The folks up north were pleased with what they saw, too.

Gwen is also participating in a second trial. They are using her blood to see if they can develop a blood test to “diagnose,” if you will, ROS-1. So when she goes up north, they take a lot of blood from her. Hopefully they can learn some stuff from this trial!

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Happy Easter!

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!