Clinic Visit

I'm late in posting about our clinic visit on Thursday.  It was fairly uneventful, which we were happy about.  Maggie received an IVIG (antibodies), which ended up being over a 2 hour infusion.  Thankfully it was over naptime and Maggie had been given Benedryl, so it helped her to sleep longer than normal.  

Maggie received her final low dose Methotrexate in this stage of her treatment and will finish up 6-MP, an oral chemo given daily on Thursday.  Maggie's counts were very good, including her liver enzymes.  They had been a problem in the past and some blood tests were done to see if there were any viruses that might have caused some of this elevation.  Here it ended up that Maggie had antibodies for the Epstein-Barr Virus (Mono).  Now I'm not a physician and will not probably explain this very well, but the doctor said that she could have had this virus (since she had produced antibodies for it), it could have been a fever at the time of blood-draw that showed these antibodies (which she did not have), or it was a reaction to an IVIG.  Whatever it was, this most likely explains the elevation and though Maggie does have a slight elevation in her liver enzymes right now, it is chemo related.  

We also found that Maggie had not gained much weight in the second week that she had her feeding tube.  She was up 5 ounces, which is under what she should be gaining.  They decided to increase her amount of formula from 2 cans (8 ounces each) to 3 cans, and her feedings from 12 hours to 14 hours.  Maggie also is having quite a bit of diarrhea, so they prescribed us some Benefiber to include in her formula.  Her formula had already been changed to a higher fiber formula, but it just wasn't doing the trick.  Hopefully in the next week, both of these situations will improve.   Currently, we are cleaning up about 6-8 poopy diapers a day, much of which is diarrhea.  So it seems to us that what is going in is just as quickly exiting.  

Maggie has shown more interest in standing.  She will stand and hold on to a couch or the bathtub and play for longer periods of time.  We even saw her creep along the bathtub last night trying to push all of her toys into the tub.  It's encouraging to us to see her interested and motivated.  Hopefully this will continue and she will not be set back when her high dose chemo comes around again.

We are still struggling with Maggie's eating.  She seems to have some interest, but most of what is put into her mouth is taken out and not swallowed.  We finally have our first feeding therapy session on Wednesday.  Currently the insurance company has only granted us one session.  Maggie obviously needs more since she is now on a feeding tube and most likely will not be taken off until she can sustain her own weight.  It's just unfortunate that sometimes insurance companies have to get in the way of medical care.

With that I guess I will close.  Thank you for your continued prayers.  If you would still pray that Maggie will start eating/swallowing enough calories to sustain her weight, I think a lot of our "problems" will be solved.  She is sleeping a lot better than she has in the last many months and I think it's because her belly is finally full.  Not to say we still don't wake up every couple of hours, but when we were seeing every hour on the clock, every other hour is a whole lot better.  Thank you again.