Day 1 of Cycle Four in Maintenance
Day 1 of Cycle Four in Maintenance! We had a pretty good month since our last hospital visit.
First big news, Sofia went back to school for the first time since September! Sofia had only been to school two days in the past so she didn't really remember what she was missing. Given that she missed basically the whole year I told her to just go and have fun and not worry if kids could do things she couldn't do. Well, she jumped right in as if she never missed a day. She loved to do school work and she and I work on it a lot at home so she was happy that she was "really good at school". So while Sofia was at school I went for a workout and put Noni in childcare for the first time ever. He did great, too!
Now, when you leave your house, you get exposed to germs. The stomach flu hit our house, hard! Luckily it was only a 24 bug so we all got it and were over it within a week.
Sofia thought we were all wimps with our reactions to throwing up. She literally woke up, threw up and went back to bed. Mike and I were lying on the bathroom floor, crying like babies. It was pretty funny when we thought about it after the fact.
We had a beautiful Easter, some fun neighborhood play dates and a couple of Birthday parties. It was a good month!
Today Sofia went in for a lumbar puncture with triple chemo in her spine and one in her port. Each cycle in Maintenance is 3 months. For our first four cycles we have to get 2 lumbar punctures in every 3 month cycle. So today is our first and next month will be our second LP in this cycle. The good news is that after this cycle we move to only getting 1 lumbar puncture every 3 months. This means we only have 4 LP's left!!!!
Sofia's counts were great today so they decided to bump her nightly chemo up to 65%. We are praying this doesn't take a huge toll on her ANC so we will check counts again in 2 weeks.
Though it was a long morning Sofia was actually excited to go to the hospital today because her friend has been in-patient with fevers for the past 6 days. We visited her over the weekend and Sofia really remembered what it feels like to have to sleep there every night. Though she didn't get to spend time with her today, it made her feel better knowing that they were both there. On the way out she said "other kids don't really know about hospitals, like we do." There is a lot of thoughts going on that little head of hers. She really does inspire me every single day.
When we came home I told her it was a take it easy, jammy day. So she put on her finest princess Jammies with every piece of jewelry she owns and a tiara. Than she just relaxed on the couch. Just a normal Monday!
We are so blessed with our support system, our families and friends.
Thank you all for your prayers thus far and please continue to pray for Sofia and all the other kids fighting for their lives.
Love #teamsofia[...]
