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May 12-18

This Week

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This week Mais begins Maintenance, Tuesday she goes in to get her counts and if she makes counts will go back Wed for a spinal tap with Chemo under anesthesia. 

We’ll also begin at home Chemo every day for the rest of treatment which is estimated for Nov 2024. They will give her the max dose of Chemo for her weight and then based on how she handles it will need to tweak her dose. Once a month she’ll have port Chemo at clinic and spinal taps with Chemo throughout this time. The timing to get her at home Chemo dosage right is typically 6 months so during that time she will have symptoms again like mouth sores, fatigue, pain in her nervous system and cuts that don’t heal plus the nausea/vomiting. We also will have to do steroids one week a month throughout this.

We had been pretty lucky up until the last month with the vomiting but she recently has started to vomit from the side effects. Other than that she has had more energy lately and has been able to get out more.

Recently we were able to attend Rady’s Childrens Celebration of Champions and met a couple of the Padres. It was an emotional event that celebrated all the kids that are currently fighting and the ones that have lost their fight. It was the first time all four of us spent time together outside of the house other than small family gatherings since we were diagnosed in September 2022. It hadn’t occurred until then just how much I was missing time together experiencing life.

Today we celebrated her 3rd birthday with family and some good clean fun with a foam pit. She has officially entered the terrible three’s which keeps us on our toes. 

Her hair and eyelashes that all fell out in Delayed Intensification have started to grow back and she continues to show us just how mighty she is. Sometimes too mighty (toddler style). 

We’re so grateful for all the continued prayers and check ins and the best friends anyone could ask for who continue to walk this path with us despite the rough patches.

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