Brianna’s Lymphatic Malformation Journey

21/02/2025

It’s been awhile since I posted so I thought I would do a quick update. Brianna has been off of Sirolimus for about a year and has been doing amazing without it. She has not needed any other treatments either. She occasionally gets some bruising on and around her chin, and she gets tongue blebs, but nothing major like when she was a baby. I am thankful for the help that the Sirolimus provided, but I am extremely grateful she is off the medication. Here some recent pictures of her. 💕

30/11/2022

Last night was the first time Brianna communicated with us that her LM hurt. She has been responding very well to Sirolimus until this month. A few weeks ago she was irritable and showing signs of infection in her mouth. The doctors gave her an antibiotic which helped her feel better. Now she is beginning to get a cyst on the left side of her face. She referred to it as a boo boo last night and told us that it hurt 💔. She hasn’t had any signs of sickness so I am guessing that she might be going through a growth spurt which is triggering her immune system. Her cyst is not nearly as big as they would get before she was on Sirolimus but it is visible and causing her discomfort 🙁. We’ll keep an eye on it. Hopefully she feels better soon! 💕

10/10/2022

Brianna has been doing well. She has not had a flare up since being back on Sirolimus until about a week ago. I noticed that she had quite a few clear blebs on her tongue. They are red now. I think that they might be bothering her just a little otherwise she’s been pretty happy.

01/08/2022

I was looking over Brianna’s photos and am amazed at how much the Sirolimus has helped her. The couple months before she started on it she would have a bad flare up like the one you see in the pic on the right. I often feel guilty about giving her such a strong medication (even though it is such a low dose) but then when I see how bad her LM can get I am very thankful for the medication.

22/07/2022

We’ve had a busy couple months. Brianna has been back on Sirolimus for the past month. We did a 3 week road trip with various stops along the way. We got back home Sunday and ended up in the ER for a fever on Wednesday. She has acute pneumonia. She was given a round of antibiotics in the hospital and sent home with a amoxicillin prescription. Today (Friday) she is feeling so much better! 💕

10/06/2022

BUMP IN THE ROAD: 10 Days into our 2nd month on Sirolimus and the glass medication bottle got knocked off the counter and shattered all over the floor. Our wonderfully expensive (almost $3000/mo) Humana Insurance will NOT do an exception like other insurance company’s do. So…we get to START ALL OVER in 20 days. 😳

02/06/2022

Just wanted to do a quick update. Brianna has been on Sirolimus for a month now. The swelling on the right side of her face has gone down drastically. Her tongue is looking great as well.

16/05/2022

Yesterday was Lymphatic Malformation Awareness Day. As you may know Brianna is our little Lymphatic Malformation Warrior. I found this 6min video that is pretty good at explaining it. Thought I’d share for anyone who was curious to learn more.

https://youtu.be/QU6XMOo5UOE

Click here to watch Part 1, on what the lymphatic system is, and how it works:https://youtu.be/MfALHzheD-gClick the link to learn about our team of experts a...

13/05/2022

Brianna’s fever is back. The doctor sent us back to the hospital for another round of antibiotics and to check her labs again. She quietly watched the nurse put her IV in. She is handling this trip to the ER like a pro. We will be heading back home soon. 💤

11/05/2022

She is feeling better today. Blood culture came back clean this morning. We learned yesterday during our first trip to the ER, that Brianna is NOT A FAN of the following: catheters, blood pressure cuffs, anything taped to her, hospital wrist bands, IVs, & thermometers in her bum. We also learned that she is very 💪🏼PHYSICALLY STRONG as it took a few of us to hold her in place during many of these tests. 😳🙂

10/05/2022

***UPDATE***
*Chest x-ray didn’t find anything.
*They we’re able to bring her temperature back down to normal with Tylenol.
*Gave her antibiotics through her IV
*UTI: Negative
*Still waiting on a couple test
*Sent home (but was given the option to stay overnight if I wanted to)
*Was told to continue her Sirolimus
*Home at 10:30pm
*Gave her sirolimus
*12:45am: started to get a fever, gave her Tylenol
*1:15am: fever was hitting 101. Thought we were going to need to take her to the E R again. By the time I gathered my things the Tylenol kicked in and brought her fever down.
Thank you for your thoughts and prayers. Good night!!