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  • Lindsey Matthews

Here's the thing, Ewing's Sarcoma is hard to shake

Brynn completed the initial protocol (VDC/IE with radiation) on May 4th, 2020. We celebrated with a Jeep parade! Shout out to DFW Birthday Parades for making an exception to their original intent.


She was able to enjoy a bit of May before going into another surgery for a biopsy on spot still showing in her lungs. LUNG SURGERY! Y'all, lung surgery is no joke! It. Is. Painful. However, this spot came back negative! Praise!!



However, with some time and discussion, her surgeon and oncologist felt it would be best to remove this spot completely. This spot happened to place itself near a main artery. If there was an opportunity for growth, it would grow right into the artery causing more drama than it's worth.


At the end of September 2020, she went in for a lobectomy of her left lower lobe. This time, with the removal of the lower-left lung lobe, they were able to examine the spot better. Unfortunately, it came back MOSTLY dead. However, there were signs of cancerous cells. Back to treatment, she goes.


The recurrence treatment started with Irinotecan and Temozolomide in October 2020. She completed two rounds of this course of treatment. This combination made her pretty miserable! With a little research (on the part of mom), I requested we try Gemcitabine and Docetaxel. With this transition, she started the required 6 rounds all over again. She completed the 6 rounds of this protocol around April of 2021 and we thought we were good to go...until she started having headaches.


May 2021, Brynn started getting headaches where the pain mimicked her original tumor. She started taking Tylenol and Advil and it would just numb the pain. She said, "it's weird because I know it's still there but it doesn't hurt." The pain medication wouldn't only last so long before the headache would return. For two weeks, the pain would increase and we would try everything to get it to go away. When you're badass daughter gets to the point where she's screaming crying on the floor saying she can do it anymore, you get her to the ER fast.


Brynn's oncologist called the ER and they were ready as soon as we drove up. They did their imaging and the next thing we know, we're looking her oncologist in the face. She and I both looked at one another because we knew exactly what was going on. DAMN IT!!! Not again. Like, seriously. Just go away cancer! Even her oncologist couldn't hide his emotions and his frustrations with this relentless beast. She had 2 brain tumors. One with a 6 x 4.9 x. 4 cm cyst surrounding it. Y'all...look into that! Your skull surrounds your brain to protect it. The skull is just big enough to fit your brain. Now, let's add in this ridiculous tumor with its cyst. Tell me her head wasn't hurting!


For the tumor with the cyst, she had to undergo a craniotomy. Fortunately, we were blessed with another amazing surgeon! Her oncologist truly watches out for her and his patients when he has to call in these types of things.



With the removal of one tumor, she still had a very small tumor on the other side in need of attention. The only way to get ahold of this tumor in her brain was radiation. She completed 5 proton radiation treatments to both tumor locations in June 2021.


But wait...there's more! With this going into her brain, they have to figure out if these cancer cells traveled through her spine. So you know...MOM WAS NOT READY! Her oncologist performed a lumbar puncture and I am in tears. There are moms who go through this several times with their babies. Oh. Em. Gee. Like...what?! I am out on the lumbar punctures, you guys. No. Thank you.


She goes through ALL of this while completing two physical therapy appointments a week and keeping up with school. #onedayatatime




Here we are in October 2021 getting another round of PET scans and a brain MRI. ANNNDDDD, she has more recurrence. There are 4 lesions in her brain, one in her left upper lung lobe (the only lobe left on this side), one on her right upper pelvic bone, and one in her knee.


She's back to a routine of chemo and radiation. This time she's doing a combination of Topotecan and Cytoxan. This is a one-week-on with two weeks off regimen. She will have 10 rounds of whole brain radiation and one radiation to her knee. Around the end of November 2021, we'll see how this new combination is working.


Defeating cancer is never easy. This girl just happened to get one that is super aggressive. I'm just wondering if it knew how stubborn SHE was when it decided on its host.


To be continued...


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