Still Looking For Answers...Day 662

Another update by Polly...

I write this with continued frustration and fear as things don't seem to be improving for our El-Belle.  We stayed the course with the laxatives last week and cleared her out as best as we could.  While she did have some smiles, she also has continued to have a lot of time not feeling good at all.  Unfortunately her vomiting has increased over the last several days to 2-3 times per 24 hour period.  The nausea meds don't seem to make a difference for her.  Thankfully she generally gets a good hour after throwing up where she seems to feel okay, but then she slowly goes back to her stomach hurting and being very uncomfortable.

So far, we've tried the mass laxatives, some of which she is still on and they have now increased the acid reflux medicine to a stronger one, though that isn't helping yet.  I have spoke with the GI doctor everyday this week and finally today she told me they are thinking she might have post viral gastroparesis, which is basically delayed gastric emptying.  The have decided to have her do a gastric acid scintigraphy study on Friday morning over at the adult hospital.  Basically she will eat radioactive meal of eggs and white bread and then they will evaluate how quickly these are moving through her body at 30 minute intervals.  From our understanding, there are no real protocols for this study in children, which is why we have to go over to the adult hospital.  If this is what she has, the doctor warned us that it can take several months to improve.  They will start motility drugs to hopefully help her body start moving food through it.

We go in tomorrow for labs, chemo if she makes counts, and to touch base with her primary oncologist who has not been very involved up to this point.  I have gotten several questions from friends asking if her throwing up could be from the chemo she is on, and none of her doctors think that is the case.  Some chemotherapy is known for causing nausea, however, she had been on these same drugs almost exactly one year when this started to happen.  Also, the nausea meds usually help to control when the nausea is related to chemo and in her case they don't seem to help at all.

So that's where things stand.  Jeff continues to recuperate and work on getting around with his crutches and knee walker which he is already tired of.  We hope to possibly at least have a new plan by Friday afternoon when we meet with her GI doc and get the results of the study.  In the meantime if you could please pray for our little Ellie, that her body can have a break from all of this, and that her counts continue to remain high enough to get her chemotherapy tomorrow.

Polly