Gwen is still the same today. She is alert; she doesn’t seem to be fighting as much today. They have her scheduled for a Cat Scan tomorrow and we should know more after that. Until then she is just resting and we just watch her and let her know how loved she is. She knows we’re there she will hold our finger. She also gave the nurses a thumbs down. 😂 Please keep praying for our super stubborn perfect Princess Gwen our Little Bean. 💕

Gwen is just sedated today; she is a fighter. She hates the breathing tube and she wants to talk. She recognizes us so her heart rate goes up when she sees us. She saw me taking a picture of her and she shook her head no. She only poses and lets me take pics when it’s her idea. She is responsive, knows us and is fighting. She is supposed to be resting however which is the best thing for her. We’re all feeling pretty helpless because we can’t calm her down when she gets upset because when she see people she recognizes she gets more upset. Please keep praying for her to stay calm and to be able to have everything removed on Monday. Radiation is on the back burner. Neuro is the top priority right now. Please pray for her parents they have been through so much. We love our perfect Princess Gwen our Little Bean! 💕

Gwen update: I was really unaware of how many worst days of your life you can really have in such a short period of time…. Gwen had another set back yesterday. At 4:00am in the morning on Friday we noticed her left eye was closed more than it had been. Around 6:00 am we noticed even more swelling. We had her up and outside wheeling her around so she was upright trying to let gravity help. It didn’t help. The swelling continued. Yesterday afternoon several doctors consulted and one neuro doctor asked if her hair was wet and we hadn’t thought about it but she had had a shower the night before. Later when I picked her up I checked and her hair was wet. It was wet where she had staples from the biopsy CF fluid was leaking out. They did a CT scan and found there was a blood clot from the original surgery where they went in to create a drain for the fluid and the fluid started building up and leaking out the easiest way to get out which was where her staples were form her second surgery. The doctors made the decision to send her back to ICU intubate her and put a drain in her head. They also put stitches where the staples were so there shouldn’t be anymore leakage there. They will keep her intubated and reevaluate her today but may keep her intubated for a couple of days. They may also still need to add a shunt to drain the fluid. It took a while to get her temperature down and her heart rate up because of all the medications she is on after the surgery last night but she is doing good today. I’m sorry it was just all too much yesterday and overwhelming. She just doesn’t deserve any of this and wants to go home so badly.  I will update you all later of any changes. Please pray she doesn’t have anymore setbacks. We love our perfect Princess Gwen our Little Bean! 💕

Gwen is doing her best today. She’s had a few side effects from her biopsy they say are normal. Just a little swelling. She has eaten a lot today. She went outside to enjoy the sunshine ☀️ several times. We’re just hanging out and doing whatever she tells us to do. We will be here until at least Monday. They will send her to UT Southwestern Monday by ambulance to get fitted for her radiation mask and cat scan. They will let us know when radiation starts soon after that. (If you do not agree with this or have questions PM me do not comment on this post). We love our perfect Princess Gwen our Little Bean! 💕

Gwen has been sleeping a lot today. She has been dizzy but we think it’s because of pain meds. They are switching her to something not as strong so hopefully she will be more herself tomorrow. She has been eating ok and drinking today.  She’s tired of being here. Radiology came in and they will let us know more in the next few days. She will start radiation within a few days of getting out of the hospital.

I love my perfect Princess Gwen, our Little Bean. 💕

Gwen had 2 surgeries today. She had a PICC line put in so they won’t have to keep giving her IVs or stick her to draw blood. It’s stays in place and can be used much longer than a regular IV. She also had a biopsy done today. She was in surgery for 4 hours and she came out asking for her chocolate chip cookie 🍪 and her wheelchair. She fell asleep with her cookie in her hand. She’s doing good. Just a little mad because she can’t get out of bed because she’s still groggy. She’s absolutely beautiful though and I just can’t thank God enough for giving her to us. I have never seen someone more full of sass, ready to take the whole world on. 💕

Dr. Gwen is giving mom a shot today. She’s sitting on the couch with mom and dad. She has eaten a lot of pizza today. She still hates arm hugs (blood pressure). She’s being such a brave girl though. She will have her biopsy tomorrow please say lots of prayers for her and all the doctors who will be working on her. There’s nothing more she wants than to leave this hotel.  Please pray for our perfect Princess Gwen! 💕

Gwen is doing good today. She has been to the play room. She has been painting, playing, and coloring her scrunchies. She got her tangles brushed out of her hair today and feels much better today about her hair. In the pictures she is giving you the blink she says. Please keep praying for our perfect little bean. 💕

Update on Gwen: The type of cancer she has is a DIPG tumor. It’s in the pons which is in the brain stem. They are talking about doing a biopsy next week. She doesn’t have anything scheduled this weekend. She went for a ride today all around the hospital. She wanted to go to the playroom today and painted a unicorn piggy bank. She walked a little and did really good. She’s still attached to a lot of cords and an IV. She also saw herself for the first time today which was heartbreaking. It was by accident in the play room. She doesn’t think it’s beautiful. 😭 She’s wrong though she’s absolutely perfect and beautiful in every way! Please keep praying for her! ❤️

Gwen is doing good. She had fluid built up on her brain due to the mass blocking the natural flow for it to drain. They did surgery yesterday afternoon to create a new pathway and release the pressure and drain the fluid. It should now be able to drain like it’s supposed to. She went for a swallow study at 1:00 just as a precautionary measure. She has been up playing and more alert today.