Tomorrow is supposed to be day one of consolation. Ava’s appointment is set for 8 am. If her ANC and platelet numbers are at or higher that what is required she will begin her infusion around 8:30. At 3 pm she will have her LP. If her counts are not where they need to be the team will make a guess on when we should return. For so many reasons I’m scared of this phase of treatment. First and foremost we have a lot riding on it. At the end of these 8 weeks is her next BMA. Hopefully it’s when we’ll hear she’s leukemia free. If not we move on to other options. This phases also consists of a drug called ARAC that brings a potential side effect of fevers. If she gets any fevers she will be admitted until she is fever free for 48 hours. Finally, she’s been doing so well the last few days I’m so scared to see her lose all the strength she’s gained. Kevin and I have really enjoyed having our girl back.
Fevers are problematic because no one likes to be admitted for days on end. Also, MCPS teachers return to work this week and our school year begins next Tuesday. If she gets a fever next week I won’t be able to stay with her. That’s probably my biggest fear. Kevin is amazing and Ava is so understanding so I know they’ll be fine without me. My bigger concern is will I be fine not being with her.
She has had such a great weekend. It’s been a good reminder for her and for us of how it use to be. Her visit tot the Washington Spirit game was amazing. She invited her good friend Annie and was able to enjoy being a normal 14 year old girl for a while. It was so comforting to hear them chatting amongst themselves. She loved the experience of being in the box and enjoying a sport she loves up close. Mr. Baldwin, the owner, was so kind and spent time talking with her. She loved the sweet Bark Box they had for Wesley. Of course the highlight of her night was celebrating the Spirits win and chatting with Rose. Since it was her second time meeting her she was able talk a bit more. We are so blessed she got this opportunity before beginning the next phase of treatment.
Today was the first day since she was diagnosed that she was able to shower independently. Now that she has her port we don’t have to hover as closely or rush her out for fear of getting her PICC wet. Ava’s has always been a long shower girl so being able to be to take as long as she wanted was huge for her. We also finally made it to my in-laws for Sunday dinner. Another thing she hadn’t been able to do since her diagnosis.
Most of all these two weeks free of chemo and without prednisone have really allowed her personality to come back. She’s chatting and joking so much more. She’s able to laugh at herself and is back to teasing Kohen and Ellie. I’ve missed that. Hard to believe, but I have. She’s also been texting her school friends a bit more. She’s even started texting Jade and is asking about her little friend Zoey more.
It’s obvious we all needed the chemo break and that even though she was inpatient for a week of it she made the most of the time she had. For this next round we just pray that she be able to keep this in mind and remember that is does get better. We’d love it if you keep her in your prayers and ask the Lord to please keep the fevers away.