So much great news to share!
Clara's bone marrow from 2 weeks ago has come back, and the results are negative for leukemia! Of course, this is fabulous news, but it was also news we have come to expect. Perhaps we take it for granted, but we are truly enjoying looking forward - not living in fear.
With a negative MRD (minimal residual disease) at the 6 month mark after transplant, the doctors can feel assured that Clara will not need further IV therapy (big stuff like chemo). So then comes the big question from Alan and I: Can we remove the Hickman central IV line? Answer: YES! The doctor is filing the paperwork today so that the schedulers can get her an appointment in the OR. We haven't heard a timeframe for when this will be scheduled but we are hoping for this week or the next.
We shared with you that Clara's white blood cell count had dropped just before my parents' visit in July, but I don't think that I mentioned it happened again. We've been watching it for a couple of weeks and it is finally back up. She's had a runny nose for a couple of weeks, too. So, knowing that her white count is back up even though the runny nose continues makes me feel a little bit more comfortable. Perhaps the runny nose really is just seasonal allergies- poor kiddo.
So, now, the only "struggle" left is that we don't need an NG tube for feedings! Clara has been eating like a champ for the past 2 weeks and is increasing her solid and fluid intake daily. We are sooo proud of her. She was 7.9kg before the NG tube wean, dropped to 7.55kg, was 7.75kg on Tuesday last week and then astonishingly dropped to 7.6kg today (she looks and feels so much bigger!). So why is this a struggle? She is going to be getting a significant number of meds through the end of the year (although fewer and fewer as time goes on),so we now have to figure out how to get her to take her meds by mouth. It has been a benefit of the NG tube and with the number of meds she is taking right now it has been a really good reason to leave the tube in. But we are really ready to be done with it. Making the decision to torture her with 22 meds over the course of a day is a difficult one to make. And I would think that if she had a choice between meds and the tube that she would pick the meds...I think. We are going to try a myriad of ways to give her her meds and will keep you updated on that front. Pray she really likes the taste of them! Some of them smell good, but whether or not she will consistently take those good tasting ones still remains to be seen.
1 comment:
Funny how those of us who don't see her don't remember stuff like a Hickman, but get eager to see just the NG tube removed, and it's a lot less invasive and dangerous. I'm so glad to hear the Hickman is coming out - for all sorts of reasons you know well. I just remembered another favorite of our grandkids - cucumbers in vinegar! Not the most nourishing thing in the world, but a new taste sensation for sure. I use balsamic vinegar and dilute it a bit with water, and add a slice of onion to the liquid, plus salt and pepper. I know you think I'm a big cook - but I'm really just a big eater! And that's the kind of advice I'm sending you - that of someone who loves the taste of food. Give her a big hug from me.
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