Another Eye Update

‘Tis been a long time since we’ve updated the good people who follow Gwen’s progress, and actually, Gwen failed to even update me after her last appointment! She has become so accustomed to good news that she kept forgetting to tell me about her last trip to the eye doctor. This was after we even spent three days together on a little Spring Break trip! How great is that??

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Look at all that hair!

So she and I have finally spoken about her eyes. Her appointment was back on March 22nd. She was scheduled to see one doctor, but then her main guy, Dr. M. came in. It turns out that he is leaving Duke and will be going to Stanford. He wanted to come see Gwen and say his goodbyes. They currently don’t have a replacement for him, but the current team will take good care of Gwen and keep Dr. M. informed of her case. He is rather pleased with how well her eye tumor has responded to the Xalkori, seeing as how many of these types of medications are not known to cross the blood-brain barrier and her tumor has quite obviously responded. (If you recall, there was talk really early on about possible radiation of the eye if the tumor didn’t respond). So apparently, “they” are reporting “their” findings about how her tumor has responded to the medication and her case is being used in medical land.

As we mentioned last time we reported on the tumor, it is still there, smaller than last time, and remnants of it likely will always be present. The analogy was made to Gwen that it was like a building that was knocked down – the pile of rubble is still there but there is no structure to it any more.

And here is the biggest shocker – no more eye checkups for 6 months!! Well, about 5 months from this blog update…

Thank you for continuing to keep Gwen in your thoughts and prayers – and I know you do because people ask me about her all the time (even my own Rheumatologist as well as my dentist and my dental hygienist who only see me twice a year). People are good and kind.

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God is good.

 

When It Rains, It Pours

You may be asking yourself, “Self, will Allisen please stop with the posts this week? She hasn’t posted in weeks and weeks, and now she won’t shut up!” The updates just keep pouring in, and also we have gotten a whole lot of rain, so literally it has been pouring here. 

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Here’s Gwen and Friend Kristen running in the rain, but doesn’t Friend Kristen look jubilant anyway? (And they appear to be running in sync.) Photo cred: Lydia Lea

On Monday, two days post-5K, Gwen had her next round of scans. Today, Veteran’s day, Gwen, Justin, Mom, and I piled in to the doctor’s office and awaited the results. And I mean we really a-waited… for hours. Apparently Veteran’s day is a popular day for oncology visits.

Once again, the news was good! Scans were clear. We looked at side-by-side images from August and November. The technician’s report indicated that there seems to have been some things that had cleared up since August – signs that perhaps Gwen had a touch of pneumonia or bronchitis back in August? She had felt fine, and those spots were obviously not anything that stood out to the doctor or the CT technicians in August – just that things are more clear now.

Gwen talked about a couple of things with the doctor – like “chemo-brain” effect – that happens about once a month or so (which is basically trouble thinking about complex things more than usual) and it is likely that it is a side effect of the medications she is taking. Her MRI indicated that everything with her brain was good. She has had a couple of other minor issues that she will monitor and report if things seem to change, but nothing that is of concern to the doctors at this time.

And in case you were wondering, this is what it looks like when Gwen asks questions:

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Don’t you feel like you were there with us?

Gwen got the good news that at this point in her treatment, research indicates that it is fine to only have the Xgeva shot (for her bones) once every THREE months – she was having that one monthly. So, she got it today and is now good to go until February, which is when she will have her next scans as well.

At the end of the appointment, Dr. G ended with a “Merry Christmas! Now I have to go see sick patients; you are not one of them!”

And by the way, today it was sunny all day long!

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See how sunny it was? And not a cloud in the sky!

Another One of Those Non-Update Updates

Hello People! It has been about a month since our last post. I know our awesome followers get a little anxious when I haven’t posted in awhile – and it is because you are all so caring! For that we thank you a ton. Your support means more than we can express in words.

With that said, we really have nothing much to report. Gwen is doing well. School is in full swing – we are coming to the end of week 3. Gwen thinks I have been avoiding and/or ignoring her when really things have been overly busy. But see, Gwen? I’m thinking of you right now when I should be sleeping!

Gwen is continuing to train for the Lung Cancer Initiative’s LUNGe Forward 5K and is up to 2 consecutive miles! Her non-running sister is also attempting to train and is also up to 2 consecutive miles as long as it is not too sunny and it is completely flat and the temperature outside is a perfect 75 degrees else she completely overheats and turns purple, but that is neither here nor there. The Lung Cancer Initiative’s LUNGe Forward 5K is on November 7th in Raleigh. You, too, can run with us, or you can be with us in spirit. Please consider joining her team or donating via the link. Some of us haven’t registered yet either even though we should have… Justin, Allisen, Kevin…

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In other news, we will be celebrating the life of this lady this weekend:

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It is thanks to her that we are able to spend our summers in Lake George. We are thankful she is now with Grandpa, where she has wanted to be for a long time as she has missed him greatly! Incidentally, Grandpa died from Lung Cancer in 1997. Here they are looking so adorable, and this is how I envision they are once again:

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And now, please enjoy this lovely photo I took of Gwen when she wasn’t expecting it:

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And then this one she was expecting, obviously:

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Now, the purpose of my photo shoot, one so you guys could see how much her hair has grown – look how wavy it is! I am still disappointed it didn’t grow in a different color:

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And finally, one of Callie, just because.

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Summertime Blues (sort of)

Hello again, friends! We are back in NC – Gwen and Justin start school on Friday (hence we are feeling blue). I had every intention to update once more before our summer’s end but, alas, I did not. So, quickly, I’ll update you on a couple fun things that would have been in said post.

  1. They cruised. Gwen was allowed on the ship despite being in the ER two days prior (phew). They had fun. Gwen gambled $20 over 8 days and won $300…On slot machines. There was some parasailing, ziplining, beaching, quizzing, dining… Callie survived and so did her caregivers. All 8 of them.

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Zip line on cruise excursion
Zip line on cruise excursion

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2. Gwen had birthday funtivities. As always. For a week. There were ice cream outings, mini golf, boativities, waterfall hikes, etc. Everyone loved it and no one was upset ever because it was Gwensday.

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3. Justin also had a birthday. Will was really excited about it…

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/post-that-never-was.

Now for the really fun part! After getting back into town Saturday, Gwen spent Monday, Tuesday (Justinsday), and Wednesday at various doctor’s appointments getting scans and results of scans and whatnot.

Monday: Scan day – CT scan, brain scan, bone scan… Basically radioactive day.

Tuesday: Met with ocular oncologist (Dr. M) to check on the eye mass. Good news: it is continuing to shrink! Also, Gwen’s vision is only bothered by it when she blinks and is looking for it. She has trouble seeing at night, however.

Wednesday: Met with Dr. G. to go over all the other scans. Gwen had never had a bone scan before. The main concern from the start was with the lung. Anything else was secondary, so now that the lung stuff is under control, I guess they decided it was a good time to scan her bones, but this made Gwen the most nervous because she wasn’t sure what might be found in other places.

Results? CT scan of the bones show no change in the spots originally identified on hip and spine, however, on the bone scan these spots did not light up as they would if they were cancerous. Therefore, it is believed that there is not a correlation between these spots and cancer, however they cannot be 100% positive about that. At any rate, this was rather good news!

Now onto the lungs. Once again, we are told the Gwen’s lungs look EVEN BETTER than last time! “But wait, how can this be?” you ask cautiously. “Weren’t they clear last time?” Why yes, friends, they were…

After hearing this twice now, Gwen did ask for an explanation. The doctor explained that there’s this little nodule that keeps shrinking. If someone unfamiliar with Gwen’s case were to look at her scans from last time, they would likely not even notice said nodule. If they saw her scans from this week, they wouldn’t notice the nodule at all. Her lungs look like a healthy person’s lungs! The doctor continues to be so excited every time she meets with Gwen. Part of that is the crazy awesome response to the medication, and part is the fact that she doesn’t have patients with this mutation, so I am sure she enjoys the learning aspect of Gwen’s case.

Gwen also reported that the brain scan “showed nothing.” (That one was too easy. I let it go).

At this appointment, Gwen also got her bone strengthening shot and a pneumonia vaccination. Someone told me, repeatedly, the pneumonia one hurts later on. A lot. The vaccine lasts 10 years! Hopefully the pain doesn’t.

So, overall, another excellent report! Nothing has metastasized to places previously unchecked. Lungs look like those of a person without cancer. Hence, the next check up will be in THREE months instead of the normal two!

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In the meantime, please continue to send up prayers of thanksgiving for the healing that has taken place, the advances in science that have allowed this to happen, and the awesome doctors that have been placed in Gwen’s path, and please pray that she will continue to tolerate this course of treatment.

Thank you to all of you who have been following along and asking about her and praying for her! It is working!!

The Gwen Effect

A couple of things to share this week. The first is an update on all the migraines Gwen was having. For those who don’t know, and I am not sure how much I mentioned about this in any earlier posts, but starting in April 2014, Gwen was having migraines about once a week. She had never had one before. These finally got on her nerves enough that she scheduled her appointment with the neurologist and went for that fateful visit to the eye doctor – you know, the one who found the tumor?

Anyhoo, it was determined that there was no medical reason for these migraines – they were likely genetic. Mom has them occasionally, and her two stunningly gorgeous sisters have also been known to get migraines. They were not related to the cancer. But guess what? Ever since January, when we got the official diagnosis, she has not had a single one. Not. One. And remember, friends, how she had no external signs of lung cancer when this was found? Gwen believes these migraines were certainly her sign from God.

Look! She's got hair!
Look! She’s got hair!

Second awesome story to share is one that Gwen shared at church today. She was riding on the track bus when two of the athletes were having a conversation in the row behind her. One of them told the other that she never really believed in God until Gwen got sick and then got better. Now she believes. It’s the Gwen Effect.

She is moved by how her experience has effected others, and we hope that others will continue to be moved by her story!

Please keep spreading the word!

http://www.lungcancerinitiativenc.org

Aunt Gwen

I’ve learned my lesson. People enjoy updates, even if there aren’t really any updates! Gwen is doing well. She is busy getting her Calculus class ready for their exam on Tuesday. The biggest news of all is that her hair is growing back! I have heard her challenge a couple people to a hair growing contest.

Last weekend, Gwen, Callie, and I went to a strawberry festival. It was lovely. Callie got to see some camels (we also find that odd for a strawberry festival), jump in a bounce house, and ride on a pony! And I think there were only 3 small booths of strawberry vendors, which I also found odd, but whatever.

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We also celebrated Hannah’s birthday last weekend, and one of the things Hannah wanted to do was test out our zipline. Everyone took a zip, even Mom and Gwen!

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Later in the week, Justin, Gwen, and Callie came to one of Will’s baseball games. After the game, Lachlen challenged her to a footrace. Gwen won…kind of. Lachlen changed the finish line to a different location when he saw he was going to lose. She also ran around the playground to go down the slides with Lachlen and Callie.

This was the most display of energy I have seen from her in a  l o n g  time! Afterwards, she did say she was a bit tired… but she was the only grownup running around. We give her permission to be a little tired.

I must say, it has been nice to have Aunt Gwen back.

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Whachyou Talkin’ ’bout, Dr G?

Today was “Scan Results Day.” We were all a bit anxious going into the appointment. Following last week’s positive eye results, I think we were all hopeful for good news but rather nervous about being hopeful for fear of having those hopes dashed.

Mom and Gwen fixing other people's puzzle mistakes. C'mon people!
Mom and Gwen fixing other people’s puzzle mistakes. C’mon people!

Gwen’s guidance counselor, Helen-who’s-name-is-not-really-Helen, came in and said the scans looked good! Ok, last time we heard this sort of news, we weren’t impressed and we switched treatments, so I was still skeptical… But through Helen’s questions, I did find out that Gwen is feeling better now that chemo is out of her system – less tired than before but still tired, especially by the end of the week. But as Gwen said, she’s “really good at sleeping.”

About 1.5 hours after the appointment start time, we finally saw Dr. G. I don’t even know what to write… I think pictures will do the talking here.

20150420_17293520150420_173019What. Gwen, our unique patient, has proven unique in the most important of ways. She has had a “remarkable response” to the Xalkori. She has little to NO signs of cancer in the lungs. WHAT??? Even the doctor was surprised. Remember that mass they thought would need radiating? Gone. WHAT? Doc G said Gwen was a “miracle case.”

rəˈmiSH(ə)n

a diminution of the seriousness or intensity of disease or pain; a temporary recovery.

Yes, folks, Gwendo is officially in remission. We are hesitant. We were hopeful and nervous. We still are. Can this be happening??

Left is today, right is January. See a doctor for interpretation. It's good. In Dr G we trust!
Left is today, right is January. See a doctor for interpretation. It’s good. In Dr G we trust!

She will continue taking Xalkori until her body resists it. She will get scans every 2 months. She will continue to get a wicked expensive bone shot once a month. We are going to keep praying that she is unique and will tolerate this drug as long as possible!

Thank you to all who keep her in your prayers! They are working, and we cannot thank God, nor you all, enough!