This morning's check up was good; Madeleine's ANC count is holding steady for the most part and the platelets she received last Friday are hanging on at 95. All of these are good indications that she can remain at home still during her last cycle recovery. Next Thursday is her MRI, and we'll have an appointment with Dr Davidson Friday morning to read and understand the MRI results and talk about what's on the horizon thereafter. Her spinal tap will be the following week to again test the spinal fluid to ensure there are no cancer cells, and the belly ultrasound in the coming weeks. At this point, we don't expect to find anything but we definitely have to be sure. These tests will also serve as the new baseline that will be used to compare every scan from here on out as we closely watch Madeleine for any new growths. Remember, her rhabdoid tumor predisposition has the potential to rear its ugly head again, so we continue to ask for diligent prayers that God's mercy spares Madeleine from another incident. Every ATRT child is different, making it both easier and harder to focus on her individuality.
Before we left the hospital, Madeleine underwent a physical therapy assessment that has indicated that she is below average in her development for her age, which we totally expected, but not detrimental, & that they think a few months at home, especially with sister to help her along, that she could very well catch up to age-appropriate developmental milestones, if not surpass them. This is huge!! What an achievement for Madeleine! We will likely still seek an additional assessment and begin some physical therapy in the coming months when her immune system has recovered. She is however doing very, very well.
Madeleine is finally settling in at home. The first few nights were AWFUL because this kid would not sleep longer than about 40 minutes at a time. It was likely a combination of things such as her teething (the first two teeth FINALLY broke the skin!!) how warm it was in the house, and/or the white noise from finally running the AC. Whatever it was, Daddy and I were so happy to finally get some sleep, and we've been taking turns catching up every day. Tonight we watched her flip from her back to her sides, rock from side to side on her back, and lay content glancing at the TV just relaxing on the floor. It seems silly and incredibly ordinary; but she has spent so much time in a hospital bed with IV tubes that made it nearly impossible for her to have her "down time" that it's a kind of relief I don't adequately describe.
Tomorrow afternoon I'm finally getting my hair cut. My hair has been longer than average for most of my life and I haven't had a haircut since probably finding out I was pregnant with Madeleine, I would say over a year ago. I know, gross, right? A good friend of mine has rarely had long hair and really loves it; she came to me a few months ago and mentioned she wanted to cut it and donate in Madeleine's name to the Locks of Love organization. Since she would do it in Madeleine's name, I told my friend Jacy I would also cut mine and donate in her daughter Talli's name, since she too has been undergoing chemo for an Ewing saracoma thigh tumor and has also lost all of her hair. Funny enough Talli had made a comment how one day she might want to have black, curly hair. So tomorrow, for Tallia Davis, I will be cutting about 12-14 inches. In this community of Little Heroes, I find it so important to mean what you say, and do what you promise. So curly black hair it is for Talli!! I'll post pictures :)
Tomorrow afternoon I'm finally getting my hair cut. My hair has been longer than average for most of my life and I haven't had a haircut since probably finding out I was pregnant with Madeleine, I would say over a year ago. I know, gross, right? A good friend of mine has rarely had long hair and really loves it; she came to me a few months ago and mentioned she wanted to cut it and donate in Madeleine's name to the Locks of Love organization. Since she would do it in Madeleine's name, I told my friend Jacy I would also cut mine and donate in her daughter Talli's name, since she too has been undergoing chemo for an Ewing saracoma thigh tumor and has also lost all of her hair. Funny enough Talli had made a comment how one day she might want to have black, curly hair. So tomorrow, for Tallia Davis, I will be cutting about 12-14 inches. In this community of Little Heroes, I find it so important to mean what you say, and do what you promise. So curly black hair it is for Talli!! I'll post pictures :)
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