Treatment: day 4

Monday, April 29, 2024

Hi everyone! Rose here. Frank is just finishing up day 4 of treatment, and boy is she a trooper! Frank calls Tyler “the world’s best caretaker” as he’s remained by her side since she was admitted last Tuesday. After holding down the fort as her hospital roomie for the last 6 nights, we did a changing of the guards today, and tonight I’ll take over on the pullout couch. As you can imagine, Frankie is very eager to get out of here and get back home to Austin. She started her 120 continuous hours of treatment Friday afternoon, and it looks like she will be wrapped up by midday Wednesday. We will all stay in Houston for another night, so she can get one more shot to boost her platelets on Thursday before starting the drive home. The doctors say it seems she is responding well to treatment given that her symptoms are improving and her oxygen levels are increasing but of course too early to tell too much! Thank you all for the outpouring of love and support. Our whole family really appreciates it. We are so grateful for Frank’s community showing up for her when she needs it most!

Lots of Tests

Thursday, April 25, 2024

Wrapping up our third day at MD Anderson and wow we’ve been busy. Yesterday Frankie started the day with a CT Scan of her neck and chest at 4am. She had an echo done to make sure her heart was ready for chemotherapy. She had a bone marrow biopsy done, which she said was a “humbling” experience — one of the most painful experiences she’s endured. And then she got her PICC line in so that it’s easy to get infusions directly into her system. She also met with about 30+ MD Anderson staff, everyone from the fertility clinic to a chaplain to the young adult association and more. We have felt so taken care of by everyone here and truly feel in good hands. By the end of yesterday, Frankie was pretty wiped out but felt hopeful that we had completed most of the remaining tests.

Today, the 25th, was primarily focused on finalizing the diagnosis and getting everything in order for treatment to begin. The slides from her biopsy in San Antonio were read by the pathologist here at MD Anderson and the rare diagnosis of primary mediastinal b-cell lymphoma was confirmed. Though we were hoping it would be something more common, we feel that the doctors have a great plan in place. Tomorrow morning she will start the first round of chemotherapy. The first round will be R-EPOCH which is a combination of immunotherapy and chemo. She will have 5 days straight of infusions as part of this first round, or 120 continuous hours. The day after the first round is complete she will receive a shot to help boost her platelets. After that shot, she will finally be able to return to Austin for a few weeks before the next round. The plan is to connect with a local oncologist in Austin to help with ongoing bloodwork but will return to Houston for infusions. After this initial round, Frankie will likely join a clinical trial that has shown great success with this kind of lymphoma and will run its course over the next 5-8 months on a 21 day cycle.

As you can imagine, Frankie is feeling a lot of emotions as she begins chemo. Definitely some anxiety but also knows it’s an important first step on the long road to recovery.

Please continue sending her love and light — she feels it and appreciates it ❤️

First Update From MD Anderson

April 23, 2024

Hi family and friends,

It feels so surreal to be sitting here writing this post. Unfortunately, Frankie has been dealing with a lot of complex, unexplained health issues for many months and battling some pretty intense pain and discomfort. She has done her best to not let it slow her down. After many tests, scans, doctor visits, and diagnoses, she got a bronchoscopy done in San Antonio in early April. After anxiously awaiting results, we received the call we never wanted to receive — the biopsy showed that Frankie has a rare b-cell non-Hodgkin lymphoma. This initial diagnosis made us jump into action and got us set up with an appointment at the world-class cancer facility, MD Anderson in Houston.

We will use this site to keep you all updated as we navigate this challenging journey.

We had our first appointment at MD Anderson today. We met our incredible care team, led by Dr. Nair, and feel in really good hands. Unfortunately, they want to keep Frankie in the hospital at MD Anderson for a few days to streamline the remaining tests. Over the next (hopefully only) 72 hours, she will get a bone marrow biopsy, another CT Scan, an echocardiogram, and a consult with an OBGYN. Dr. Nair believes he will be able to confirm the diagnosis, determine the stage, and finalize the treatment plan. We will discuss the details of treatment with him once we get that confirmed diagnosis, but he did give us some insight. We will likely start with chemotherapy right away (ideally as early as the beginning of next week) and then hopefully have Frankie join a clinical trial where immunotherapy will also be included in the treatment.

We will report back once we have the confirmed diagnosis and a clearer treatment plan in place. Thank you to everyone for sending love and positivity our way. It means more than we can say.

Xoxo Frankie and Tyler