Well...we had one night at home, and back to childrens. Ella had horrible vomiting and a cough. Things have improved slightly, so we will see. This was a very harsh round of chemo, and they expect her blood counts to be low for quite some time. She has a borderline fever, but if she can keep away from true fever, we could possibly leave tomorrow. So IF we would get to be home, we would keep her pretty isolated until her counts come back up. One day at a time around here. Ellas birthday is Tuesday, it would be so nice for her to be at home. Our plan is to head back to New York the first or second week of April for low dose chemotherapy along with radiation. After that, she has to start antibody therapy again. I anticipate that we will be gone about 1 month, which stinks. But hopefully during that time she will feel pretty good (the low dose chemotherapy and radiation shouldnt make her feel too bad). I have been doing a lot of research on this gene Ella has, called the ALK gene..it is possibly hereditary, but most likely not (we are also going for genetic counseling once we get to New York). Of course, this gene is one of the worst genes to have for neuroblastoma (I am actually getting used to hearing this crap!) but just so happens that there is a new breakthrough drug that got pushed thru the FDA quickly because of the incredibly promising results it has. They are getting ready to trial it at Sloan..in just a couple of weeks. Maybe it is the answers to our prayers. This ALK gene is rare in neuroblastoma, especially in the original tumor. Just so happens Ella has it. But the research seems to think that turning off this gene, will turn off the bodys ability to make neuroblastoma. They have been using a different drug with some success for this, but Ellas gene is resistant to it. So Novartis, the pharmaceutical company, designed this new drug to combat this gene. This gene is also found in some other cancers, especially in small cell lung cancer. It seems very promising, the researchers seem ecstatic about it. All in Gods timing, we can only hope and pray.i dont know if Ella will get to do it just yet, but the drs said they are keeping it in their back pocket for her. They want to see how well it is tolerated first. An extra treatment option is always a good thing. We thank you so much for your love and support!!
Posted on: Sun, 16 Mar 2014 16:12:05 +0000
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