Charlie Ann the Brave

12/20/2025

Day 19/85 Maintenance Cycle 4/6
Hospital admit day 9 for Flu and neutropenia

12/20/2025

Day 18/85 Maintenance Cycle 4/6
Hospital admit day 8 for Flu and neutropenia
Today was a good day! Her sister, MAW and PAW got to come visit! She played so hard with her sister. They had to take her off the monitor because her pulse ox sensor could not keep up.
Last night there were a couple interruptions when trying to get her to go to sleep and the third time she fell asleep her oxygen level dropped to 85 so the nurse put on her oxygen. Around 2 AM she turned it off and she did not need oxygen the rest of the night! She didn’t need it during today or even during nap. If she is able to sleep through tonight without needing it then she can go home tomorrow! 

Please pray that her oxygen level stays up tonight and they get some sleep! Maw makes everything better ❤️

12/17/2025

Day 16/85 Maintenance Cycle 4/6
Hospital admit day 6 for Flu and neutropenia
We are still here… she still needed oxygen last night but actually rested pretty good. Woke up this morning around seven and was ready to play! She didn’t need any oxygen from the time she woke up until nap time. She feels really good today and has been really active. Still no fevers, labs are great, just need more time. They consulted ENT and they do not believe her needing oxygen has anything to do with her sleep apnea which is good. They were able to switch her from IV antibiotics to oral.  Since her labs are good, they are trying to decide when to start her chemo back. Her daddy is coming to stay tonight to give me a break! That’s a good thing because I ran out of clean clothes and found some maternity pants in our emergency go bag. Lol. I guess I packed them when she was first diagnosed and Olivia was a baby.
I know this isn’t where we want to be but I am so thankful that needing a little oxygen is all we are dealing with. We are surrounded with kids that are way sicker than she is. The staff here is always amazing. We have a huge support system that most people don’t. We are truely blessed!

Please continue to pray for rest, improvement of her breathing and guidance for her medical team.

Hopefully we will be home this weekend.

12/16/2025

Day 15/85 Maintenance Cycle 4/6
Hospital admit day 5 for Flu and neutropenia
Last night was the hardest night so far. We kept waiting for respiratory to come but, it was almost 10 before they made it. We were both really tired (one of us was grumpy, but I won’t say which one). She fell asleep right after using the Vest and immediately needed oxygen. Usually, she is usually able to go several hours before her levels drop. After getting her to keep her oxygen on, we finally got to sleep about one, but then had labs at four and antibiotics at five. She was super restless and would wake up fighting and sign “stop.” I’m pretty sure she was having nightmares of us having to hold her down to suction her and put on her oxygen. Nights are hard between the monitor beeping from low oxygen levels and trying to keep her oxygen on her. She was really congested this morning when she woke up and was coughing a lot. More nasal suctioning and the CPT Vest helped. She hasn’t needed any Tylenol for 24 hours and her labs continue to improve, which is great! But, she still can’t go home as long as she’s requiring oxygen. The providers said if she continues to need oxygen, especially at night, they will consult her ENT and pulmonology to see if it’s related to her sleep apnea.

The new dentist came by and we have a new plan. We will follow up after she is discharged. 

We did get a much-needed visit from her dad and sister! The girls sure miss each other. Olivia loves to come play with the toys here and eat all of Charlie Ann’s yummy snacks. Lol. 

Thank you for the continued prayers!

12/15/2025

Day 14/85 Maintenance Cycle 4/6
Hospital admit day 4 for Flu and neutropenia
She had a setback last night. Around 3am her oxygen got too low and her temp started to Increase. They had to suction her nose, apply oxygen and give her some Tylenol. She finally was able to settle back down and fall to sleep around 430am. When she woke up, she was pretty congested and required more suctioning. She had a deep productive cough. Hopefully it’s all starting to break up in her chest so she can get better. She was able to come off the oxygen this morning and has been feeding good! She’s eating and drinking too. There were whispers of her even getting to go home tomorrow until naptime… her temp went back up and her oxygen went back down as soon as she fell asleep. More suctioning (which she hates), oxygen back on and more Tylenol. She’s laying in bed now waving at me saying “momma, momma, hiiii.” Labs continue Improve but she earned herself at least 1 more night stay if not 2.

One blessing in the midst of this, we may have found a new dentist! We had to cancel all of her appointments for this week, including a dental appointment that took us a while to get. The Chief Of Dentistry here Plano called me today and is going to have someone come by and see her tomorrow. His office is closer too! 

Thank you for the continued prayers! Maw (my mom) is slowly getting better too. Hopefully everyone will be well and we can all can enjoy Christmas! BTW, Christmas is next week 😳

12/14/2025

Day 13/85 Maintenance Cycle 4/6
Hospital admit day 3 for Flu and neutropenia
She is slowly starting to improve! She hasn’t needed oxygen since 7 AM yesterday. Her labs are slowly starting to go up. She still doesn’t feel very good and is not eating or drinking much. Her temp was 100.2 this morning and she was very clingy so they were giving her some Tylenol. Respiratory therapy is coming in every four hours when she’s awake to use a vest on her to break up the mucus in her chest. OT, ST and PT have been in to work with her as well.  Yesterday the doctor said once her labs start to improve, she doesn’t need oxygen and she’s without fever, she can go home. We have two of the three so hopefully it will only be a couple more days! 

Thank you for all of the prayers, offers to come to the hospital, offers to help with her little sister and of course food! Please continue to pray for Charlie Ann. I hate when she’s in the hospital but I’m also thankful for God using her to reach people that we normally wouldn’t come In contact with. I pray they see Him through her/us!

Please also say a prayer for Charlie Ann’s Maw (my mom). She has been sick for several days and was so weak yesterday that she went to urgent care. She too, was diagnosed with the flu, just a different strain than Charlie Ann’s. We need her to feel better!

12/12/2025

Day 11/85 Maintenance Cycle 4/6
Hospital admit day 1 for Flu and neutropenia
I thought we had avoided a hospital stay, but I was wrong. Her breathing today was shallow and labored so she had to go get checked out. Her oxygen level was low so they had to put oxygen on her. She tested positive for a parainfluenza. Her white blood cell count was low so they started her on IV antibiotics since she was neutropenic. Her liver enzymes were elevated, but they think that was from the increase of her methotrexate this week.  Her temp went up to 101.4 but came down with Tylenol. Her chest x-ray was a little abnormal and couldn’t rule out pneumonia. Could be from the flu. It’s too early to say how long she’ll be in the hospital. Her breathing is better and they have been able to turn her oxygen down a little so hopefully she won’t need it much longer. She has not ate or drink anything today. Please pray that our baby feels better soon!

On a positive note, We have gotten to see a few of our favorite nurses. It’s been 7 months since she’s been admitted to the hospital!

This is what the flu looks like on a child who is immunocompromised…

12/12/2025

12/10/2025

Update on Everleigh 12-9-25…..we still don’t have any answers and she’s gotten even worse today. We did an emergency CT scan and the optometrist came and tested her eyes and both of those tests came back good. She has a sedation scheduled tomorrow for a brain and spine MRI along with a spinal tap to check her CSF fluid and make sure she isn’t relapsing or showing an infection in there. She still has fever even with the antibiotics. We’re asking for everyone to please pray the Lord will not allow her to relapse and that the tests tomorrow will give clear results and direction! We ask for you all to pray as the Lord lays her on your heart ♥️ we are so grateful for you and thank you for your faithfulness to pray 🙏

12/10/2025

Day 8/85 Maintenance Cycle 4/6
I think she is finally starting to feel better! Thank you for your prayers. Steroids are finished. Antibiotics are finished. Back to the routine chemo/meds. No fever. No Tylenol. She even put on a little show for us last night! Next Tuesday she has a full day of appointments - ST, ENT to discuss her sleep apnea and the dentist. Please continue to pray for her teeth/grinding. It’s driving us crazy! She grinds them during the day but not at night. We asked her to stop and she will for a short time but then starts back up. Everyone says there’s nothing we can do. It’s her baby teeth and not to worry, but it’s awful!

12/07/2025

Day 6/85 Maintenance Cycle 4/6
Last dose of steroids this morning! She has been so hungry and grumpy this week. This morning she would not eat or drink and was complaining of a sore throat. Her cough seem worse, but still no fever. After a dose of Tylenol, she still would not eat or drink so we paged the provider on call. Provider said not to bring her to the ER just yet. We are giving her routine Tylenol today to see if it helps. She started eating/drinking about two hours ago but still just wants to be held. She’s down for a nap now, but hopefully will wake up feeling better. If we have to go to the doctor, we would rather go to the clinic tomorrow rather than taking a chance of going to the ER and catching something even worse! Please pray Charlie Ann feels better and does not have to go to the hospital. 

12/04/2025

Day 3/85 Maintenance Cycle 4/6
This week hasn’t gone as smoothly as we wanted. By the time we got to the pharmacy Tuesday before leaving, she broke out in a rash so we had to go back to the clinic for some Benadryl. Within 30 min, it had started to resolve and we were able to go home. The rest of the night she was very fussy and clingy. She wouldn’t eat or drink and just wanted to be held. The last 2 days she had her ups and downs but she definitely is not herself. Not sure if it’s from treatment Tuesday, steroids or the ear infection. She is grinding her teeth nonstop which is awful. Please pray for comfort for our baby girl! It’s heartbreaking to not be able to make her feel better.