Day +8: A Long Day

Last night the journey got more bumpy.

It was my night to go home. At 2:15am I was awakened by a phone call from Jeff: Zoe's fever had climbed even higher and she had been heavily laboring to breathe, so much so that she was being sent to the PICU to be assessed. The concern was whether the mucositis had progressed far enough to obstruct her breathing passageway. If so, she might need to be intubated.

The call was a heads-up about what was happening, but Jeff said that I should still wait until the morning to come in. Neither one of us slept well after that.

Arriving this morning at the PICU, I found Zoe to be less febrile than she was in the night, with less labored breathing as well.

But, she was covered in a bright red rash. Hyper-acute GVHD had reared its head.



So, GVHD of some sort is usually expected in non-related donor situations. Manley said that the appearance of this rash is likely an explanation for why she has been febrile for the last couple days: the donated cells have been ramping up, and now we can see that they are sending out the forces to attack the enemy.

Unfortunately the enemy is our daughter, so this is not acceptable.

The question is whether they can head off the attack and calm everything down again. She was given a dose of Methylprednisone today, and will continue with it for three days. If no acceptable rash reduction response, then they will continue another three days and reassess. If she does respond well, then they can stop it without weaning her off of it during those six days of treatment.

If the rash goes away with the steroids, then that's a good sign that the GVHD is responsive to therapy, if not, well--we won't go down that road yet.

Please hold the truth and the knowing that this GVHD rash is already gone, already perfectly resolved.

The upside of the rash is that it is an indication that the donated cells are taking hold and starting to engraft. Manley said today that it is possible for engraftment to happen as early as day +10. He also said that the first place that the reappearance of WBC's in the body have an effect on is the improvement of the mouth mucositis. I don't know if I'm fooling myself or what, but it does seem to me that her mouth is looking a little better than it was even this morning.

We were sent back to our room around noon--and good thing. They were threatening to give it away as the hospital and the SCCA unit are full. Manley wanted to wait for awhile once we were back on the floor to see if the rash would go away on its own. It was seeming to fade when her fever reduced, but after awhile it was apparent that the angry red dots were planning to hang around. Steroids were ordered.

Administration of the steroids is not something done lightly for transplant patients: infection risk climbs higher, blood sugar and blood pressure rates climb. We were told that the cold and flu season hasn't even peaked in our region yet--that we are only at 5% of what they expect the cold and flu season to reach this year. Steroids further errode what little immune system the transplant patient has, further creating risk in a risky time of year.

The flu virus can slough off the skin and body of someone who feels no symptoms--and be transmitted to our girl. In her immunocompromised state the flu would be terrible and possibly deadly. This will be the first time Jeff and I will have ever recieved the flu vaccine. Just to be safe, we are going to stagger when we get it--first me, then Jeff a few days later. That way, if we were to have a reaction to it, we won't both be out of commission for Zoe.

Not taming the GVHD rash is not a good idea, however. It needs to be headed off, or else it can take up permanent residence and get worse. The risks on both sides of the issue are always considered, and they try to do what's best for Zoe. We have to be even more vigilant about hand washing, isolation, sanitation around our girl--if doing it more so than we already have is even possible.

While sitting here and typing away a nurse popped her head in to find out if Zoe had ever had, or been exposed to the chicken pox. Apparently, an attending doctor in the SCCA unit just came down with them and they are trying to get an idea of who is at risk here in the unit because of him.

Holy hell.

I myself have never had it, and am definitely not immune to it either. How a doctor could be walking around Children's and not be immune to chicken pox is beyond my comprehension.

While I was busy digesting this information, the nurse realized that the doctor did not work with transplant patients directly, so we may be in the clear. Zoe would not have been breathed on by him, and I don't think I could have contracted it by passing him in the halls.

I hope.