Day +168: Clara is Sick

This post was started Wednesday evening:

We went into the hospital today for Clara's weekly lab appointment to check all her blood levels and electrolytes (these have been stable for a couple of months now) and also had her monthly IVIG infusion (immunoglobulin from the blood plasma of 1,000 people to provide her with the antibodies she isn't currently producing).  

First, the bumps on her face and head finally have them concerned as they have spread from mainly being in her hair and hairline to looking like cradlecap throughout the top of her head, and dry, red, compact, itchy bumps (and sometimes almost like pimples or chicken pox on her nose) on her forehead, eyebrows, nose, upper lip and chin.  It took two nurse practitioners and finally the attending to decide we should hold off on the taper of her MMF (which is scheduled for this coming Monday) until they see her next week.    The attending that saw her today also saw her last week and was concerned that it was significantly more prominent/obvious from looking at her even across the room.  I have been putting hydro-cortisone on her face to help hydrate if it is eczema or act as a steriod if it is truly the GVHD that has been suspected.  What they saw yesterday was actually significantly better than about 5 days ago when I started putting the cream on her 2-3x/day.  They want me to continue with the cream.

Second, we had a long discussion about how they made the decision to allow her to go to outpatient OT and a day trip to Napa/Sonoma (or anywhere else for that matter).  They described her current immune status.  Basically, once she passed Day +100, she passed the point at which she was at the greatest risk of life-threatening infection.  This was great news to hear.  We still have to be very cautious about all the things that they have talked about before.  Those things aren't any less scary.  She is still severely immuno-suppressed.  However, they don't want her to live in a bubble.  So, while she is still under isolation restrictions they are just a little on the more relaxed side of the continuum. 

The hospital always called me later in the day regarding the results of her blood work and to clarify that we do not need to make any drug dose changes and to see if we have any questions.  Her numbers have all been very solid and steady for a long while yet and her CBC has been rock solid as they say (her red cells, white cells and platelets).

Unfortunately, today they had bad news.  Her white cell count is 2.5 down from 5.1 last week.  Her ANC (absolute neutrophil count) is 800; down from ~3200.  If you think back to 6 months ago, Clara had to have a 500 for 3 consecutive days to be allowed out of the hospital.  In otherwords, she is at great risk.  If she doesn't have neutrophils, she can't fight infection.

Most likely, she has an infection of some kind.  This is why only her white count has decrease.  Her red cells are still fine and her platelets have dipped from ~350 to 270.  We have been assured that while that looks like a dip to us (we haven't seen her below 300 since her marrow was first producing platelets) 270 is completely within the realm of normal, healthy, platelet numbers.

Also possible is the leukemia is back.  The nurse who called me with all of this information didn't really want to talk about that side of things as she is superstitious.  I had to press her to explain somethings and that if she didn't want to talk about it for fear of "causing" Clara to relapse by speaking of it, she could forward me to an attending.  She did discuss what I needed to know from the biology side and we are just hopeful that they are right - this is just an infection.

The fear is that just an infection can kill her.  If she runs out of neutrophils to fight whatever this is, and we go to the hospital to get antibiotics and antifungals and such and it doesn't make her better, she could die.

SO, here is what we understand:

1) The IVIG that she got yesterday could actually be enough to help her fight whatever this is.  Thank goodness it is a fresh dose of antibodies!
2) We are looking for actual signs of illness (fever, runny nose, cough, etc) before we have to take her to the hospital for further workup/treatment.
3) They are letting us bring her into the hospital Friday for follow up lab work only - just to see if her White Count and ANC have continued to decline or recover.
4) She is still allowed to do all the things they told us we could (eat outside at restaurants, go on day trips, etc).  We just have to pack a thermometer to check for fever if we suspect one.

Here's the good news:
1) She doesn't look sick at all.  In fact, last night she was so full of energy that I went to bed on a high because of how happy she was.  She even decided she was so happy and healthy that she was walking between Alan and I as we sat on the floor.  She took her first couple of steps on her own (kind of a falling couple of steps as she went from my arms to Alan's) and learned how to walk in a U-turn pattern as she would get to me or to Alan.  She would say "gin" "gin" (again) each time she would reach one of us and as she would turn around to walk to the other.

2) This morning (Thursday) she looks fantastic.  Her bumps are about 70% improved.  Some are gone, others are less inflamed, she doesn't look nearly as dry.  And she still obviously feels well.
3) We have NO intention of taking her out anywhere for fear of risking her getting sick on top of whatever she has.  We will wait til we get the results from the lab work tomorrow.  Perhaps the illness was actually her bumps being viral after all.  And maybe the IVIG fixed it?

We will see.  Stay tuned and thank you for your continued prayers!