Day +48: Getting into a routine

Things are beginning to slacken up.

Routine:
For the first 2 and a half weeks, I was so busy charting, giving meds, prepping for whatever came next, getting us to and from the hospital for her daily anti-fungal med, etc, that it seemed impossible to keep up.  No matter how well I charted, something always got in the way and threw the whole thing off.  In the past few days, I haven't had to chart at all.  I know what med is coming when.  We have a standard timeslot at the hospital and all our meds are coordinated around it.

Fewer Meds:
We are 7 days away from not having to give Clara her MMF (1 of the 2 immuno-suppressants which is given at 7am, 3pm and 11pm).  The MMF dose has slowly been lowered since we have been home.  Instead of running over 2 hours, we are now giving it over 30 minutes which allows a little bit more flexibility when we are in transit and that Alan doesn't have to stay up quite so late at night.

That means that on Tuesday of next week, we will only be giving her one IV med (micafungin-an anti-fungal) at home which is given once a day at whatever time is convenient.

PLUS, and this is the most exciting news.  We are anticipating scaling back on the ampho (the dangerous anti-fungal which has to be given at the hospital).  What I don't think we told you all (for fear that they weren't really sure or weren't telling us the whole truth) is that Clara's fungal infection seems to be gone!  She had an MRI and CT a few days before we were discharged from the SCT Unit and they couldn't see the aspergillus. Because they scans can't show everything, and there could still be some residual infection, they are slowly decreasing the frequency of treatment and number of medicines instead of cutting them cold turkey.  Upon discharge, we moved to 5 days a week for 4 weeks.  We are ending that 4th week on Friday at which point Clara is having another MRI and CT to see if the infection still looks like it is gone.  If all looks good, we move to ampho only 3 days a week (I think for a total of 4 weeks)!  We will be spending more days at home than we do at the hospital!  They haven't told us if we would move to once a week after that, or if they will just stop us at that point.  Next, they would slowly have us stop giving her the remaining IV med at home.

So, once the MMF is gone (next Tuesday), and the ampho (at least a month away), and the micafungin (don't know when), Clara will no longer be on IV therapy....and her central line can come out!  I know this sounds likd a lot of steps and a long way away, but I can actually see these things happening.  And there was such a long period where this never seemed possible or part of any kind of near future.

Numbers and other important measurements:
Clara is doing remarkably well in her recovery.

Since her engraftment, Clara's platelet count took off.  There is a not well understood correlation between platelets over 100,000 by day 100 and overall survival.  Clara has been well over that number since before we were discharged.

Her ANC continues to be well within the normal range.  She still has a suppressed immune system.  So, while the counts are there, they aren't necessarily doing their job well because we won't let it.  But, the important thing is the production of these cells.

GVHD (Graft vs Host Disease) has not been an issue for Clara.  This is great because it means her donor cells aren't rejecting her body.  Plus, GVHD puts you at greater risk for infection.

Clara did have some sort of virus that reared its head last week and hasn't completely gone away.  Her eyes turned yellow as her bilirubin levels skyrocketed in a 24 hour period and all of her liver enzymes were up.  This was a story in an of itself as the Doctor didn't even see the bumps on her hands or the yellowed complexion or eyes.  And when the labs came back validating my concerns, he had a new-found respect for my judgment.  She seems to be fighting it on her own and they aren't really sure what "it" is.  Her creatinine is also a little bit elevated which is associated with her kidneys.  They are just watching it to see which direction it trends.  Additionally, she has reactivated EBV which is the virus that causes mono.  It is possible that she will need treatment for this which will make her further immunosuppressed over the next 2 years.  Not quite what we'd like to hear at this point, but for now we are also watching the disease level and her immuno-globulin levels to see if she can fight it on her own without treatment.

Clara had a bone marrow aspirate on Day +28 which was negative for leukemia and showed that her marrow and peripheral blood system was primarily from the donor.  Both of these results are what we expected but no-less exciting.  She had another aspirate done today and we will know the results in about a week.

I am sorry this post is so delayed in coming.  It includes a lot of technical talk and will be over the heads and interests of many.  But it is also long overdue in letting you know the status of her disease and recovery.

Now, I can concentrate on my next post including fun stuff like: Clara is cruising, walking (while holding my hands), is getting very strong, loves peek-a-boo, sleeps in her own bed through the night (12-13 hrs) without any crying while Daddy sings to her for 3 minutes and then puts her in bed, bonded with Mimi (my mom) while she was in town a little over a week ago and so now has less separation anxiety, sits on the floor for alone playtime while I get things done around the house, wears her hospital mask like a champ, understands the words: walk, stand up, snuggles, kisses, night night, come to me, uses her pacifier as a security object but is also seeming to bond with a toy doll from my cousin Christine...and others.

But for now, I must go to bed as we have an early appointment at the hospital tomorrow!

Goodnight!