Rebekah has been feeling better with her treatment, she still doesn't eat much but she has a feeding tube and we are able to use that to get in most of her calories at night. She had a couple rounds of chemo that were just awful for her and she lost weight we are still working on putting that back on. The nutritionist says she is pretty happy with the weight gains Rebekah has had and just wants us to keep up the good job we have been doing. This doesn't quite feel like enough but it's the best we can do. We are mostly trying to keep her chemo on track so that we can keep beating up that stupid tumor and I am praying it won't come back. I unfortunately read about some kids locally who were in treatment for ERMS and their tumors came back or got bigger during treatment, they didn't fall into the "ideal" age range as Rebekah does but their tumors were found before they got to stage 4. So I have been having days where I am less optimistic then Rebekah's doctors seem to be. We are at the point in the "road map" (treatment schedule) where she has to have inpatient chemo every other week and it goes week 1; 3 days in week 2; 1 day out patient week 3; 5 days in week 4; no chemo and repeated 3 times then we have another evaluation of her tumor. The reason they do these chemos inpatient is so they can give other drugs to help mitigate some of the side effects like bladder damage and heart damage. They give mesna and run a lot of fluids checking her every 2 hours to be sure she is peeing all night and they give her a medicine that is supposed to protect her heart but some doctors don't give it in other countries because they say there is no evidence that it works to do so. The extra fluids are supposed to also help with the damage that can be caused to her reproductive organs but that is anyone's guess as to whether that actually will help at all. Her ANC drops after each week of inpatient chemo and so to get her numbers back up quickly we have to give her daily shots of neupogen, these cause her to have pain in her bones because we are forcing them to make more white blood cells then they would otherwise. I just keep think; why the heck is this really poisonous stuff with all these side effects her "best" option.
The week before this when her ANC dropped she got a fever; her hemoglobin dropped too and she needed a blood transfusion again. While we were they they assessed her blood clot and concluded that she could be taken off the lovenox injections. We did a happy dance and Rebekah cried tears of joy.
This last week was week 1 in the second set of these chemo drugs. While we were there she got a urinary tract infection and was complaining of her back hurting, they gave her antibiotics to start kicking the UTI, ran a culture to see what to kill it with when she went home and did and ultrasound to make sure her stent was still in a good place and draining the kidney properly. The radiologist who came in was the same one who found the mass.... I began to cry when I saw him before I even knew it was him. That was one of the worst days of my life. Also later that day Rebekah got casts of her lower legs done for splints she will need to wear at night to stretch her achilles tendons. Vincristine causes foot drop and Rebekah came into this with a shortened achilles from toe-walking so we are trying to keep it from getting worse and having her need surgery for that. (She still has a lot more Vincristine left in her treatment.)
This summer is going to be crazy with the inpatient chemo and the fevers from low ANC, which they treat as if it was an infection whether it is or not just because if it is these kids can die so fast. That means we have to stay while they grow a culture they collect from her port (24-48 hours).
