Saturday, November 14, 2009

It’s been a week of slow and steady progress, culminating with some great news this morning.  Ethan’s white blood cell count is up to .9 and his absolute neutrophil count is 720.
The two obvious questions are what the heck are those numbers and what do they mean for Ethan’s recovery?  I can answer the first, and I’ll share my confusion on the second.
Ethan’s white blood cell count is .9.  That’s misleading though, because white blood cell counts are like the tachometer on your car, you’ve got to multiply times 1,000.  So, the count is really 900.  Normal white blood cell counts are between 4,500 and 10,000.  Ethan was at 7,700 before chemo.
Neutrophils are a type of white blood cells.  They are the first responders to any infection and are a critical part of immune system response.  There’s a formula for determining the absolute neutrophil count; for any given blood sample, it’s a function of the mature neutrophil count, the almost mature neutrophil count and the white blood cell count.  (Is your head spinning yet?)  Normal ANC is 1,000 – 1,800, mild risk of infection is ANC of 500-1,000 and high risk of infection is ANC <500.
What I think this means at this point is that the donor cells have started engrafting.  Ethan’s body is starting to produce white cells and neutrophils, his immune system is getting stronger.  His overall white blood cell count is still very low and he’s still at risk from infections, but his body has started to heal from the effects of the chemotherapy and radiation.
The $100,000 question at this point is when Ethan will be able to go home.  Over the last twelve hours, three nurses have told me that Ethan’s likely to be able to go home once he has 3 consecutive days of an ANC >500 and once he transitions to oral medications.  Some have said that it’s not inconceivable that he could go home sometime in towards the middle or end of this coming week.
That’s the conventional wisdom from the nursing staff at this point.
The doctors are being much more cautious and much, much, more circumspect about even making a prediction.  They’re certainly watching his WBC and his ANC, but they’re also watching for complications from gaft versus host disease (GVHD).  GVHD is where the donor cells attack the recipient’s body as a foreign object or infection.  In a sense, it’s the opposite of the rejection that occurs in an organ transplant.
GVHD occurs to a greater or lesser extent in all bone marrow transplant recipients. The severity of GVHD is influenced by how well the donor cells match the recipients.  In other words the HLA matching that the doctors did to find a compatible donor unit.  There are two types of GVHD,  acute and chronic.  Acute GVHD occurs within 3 months of transplant, chronic GVHD starts at some point more than three months after transplant and can last for three years post transplant. 
Common acute symptoms include:
  • Abdominal pain or cramps
  • Diarrhea
  • Fever
  • Jaundice
  • Skin rash
  • Vomiting
  • Weight loss
Chronic symptoms may include:
  • Dry eyes and dry mouth
  • Hair loss
  • Hepatitis
  • Lung and digestive tract disorders
  • Skin rash
Ethan does show some signs of GVHD.  He’s got a mild skin rash on his extremeties.  He’s still vomiting some, and he may be experiencing some abdominal pain.  The doctors are also keeping a close eye on his liver function.
The doctors are still very happy with Ethan’s condition and progress, but they’re loathe to offer any predictions.  When pushed, they’ve said that it’s conceivable that Ethan could go home this week, or he could be in the hospital for another month or more. 
For Sarah and me, the best we can do is temper our hopes and conserve our energy and plan for a longer stay.  It it comes to pass that Ethan comes home sooner rather than later, that would be fantastic.  But if we plan for that, we’ll be disappointed and burnt out an facing some longer stay.  I supposed we just have to keep doing the “one day at a time” chant.
Getting past all of this medical jargon, how’s Ethan doing?  He’s doing okay, all things considered.
Ethan got over his sepsis infection from last week pretty quickly.  Thanks, I think to the fact that he’s a strong kid and helped with the skilled intervention from the docs.
Before Ethan’s ANC came up, the doctors had said that Ethan can walk around the ward and go to the playroom as long as he wore a surgical mask.  The trouble is that Ethan doesn’t want to wear the mask, so he can’t leave the room.  But we’ve gotten into the habit of opening the door to Ethan’s room and sitting just inside the room with Ethan in our lap, so that he can see what’s going on and people can stop by and say hi.
For a glorious period of time last Wendesday, Ethan was unhooked from all of his IVs.  He was cord and pole free for a couple of hours!    After walking around his room for a while, we opened his door and sat and watched for a while, saying hi to the other kids, parents and staff.
During that time, one of the doctors came by to say hi, and we chatted for a bit.  During our chat, I mentioned that Ethan had a slightly runny nose.  Oops! Virus alert! Ethan immediately went on isolation protocols, the nurses hung the isolation kit (gowns, gloves and masks) on the door, the door to his room was closed, and the doctors and nurses started gowning and masking before coming in.  Ethan’s two hours of freedom ended pretty dramatically, and he’s been on isolation since last Wednesday.
(NB: the gowning and gloving is not intended to help Ethan, but rather to prevent the medical staff from spreading the infection to the other patients.)
They took a nose swab last Wednesday, and we got the results back yesterday evening.  Ethan’s got a cold.  Fortunately, it wasn’t H1N1 or anything more serious.  The cold hasn’t settled into his chest yet, and doesn’t seem to be bothering him much.  Hopefully, it’ll stay that way.
The doctors seem content to leave him on isolation protocols for a while and test him once a week to see when it clears and when they can stop gowning up.  The ironic thing is that Ethan’s ANC is now high enough for him to leave his room and go down to the playroom and play with the other kids.  But with this cold, he can’t do it.  I’ve asked the doctors to see how often they can test him.  As much as Ethan hates having a swab stuck up his nose for a culture, I wouldn’t mind having him tested every day if it meant he could go walkabout that much sooner.
Well, that’s the update for now.  I’m headed back to Ethan’s room so Grandma Lilianne can get some lunch.
Thanks for being there.