Saturday, December 3, 2016
"So why do you worry..."
This past week has been becoming increasingly more stressful, as some of Rowan's labs began trending downward in a pretty straight line fashion...namely his white blood cell count (WBC) and absolute neutrophil count (ANC). My mind obviously started going towards, "Oh no, he's rejecting the graft again!" The doctors tried to reassure me the first few days that it wasn't enough time to establish a trend yet, but after the 4th and 5th days, they started to agree there was reason to be concerned. Rowan is currently Day +46 of his second transplant, his last transplant failed around Day +37. To lose another one would be beyond devastating. Yesterday they gave him a dose of GCSF to help boost his counts and started considering all of the potential reasons his counts could be dropping after such a robust engraftment. We have 3 potential reasons that are at the top of the list.
1. Graft failure/graft rejection...again
2. CMV virus reactivating in his brain/CSF fluid
3. A side affect of on ore more of the medications he is on
Obviously, the first one would be the worst one. The second one, is scary given how bad he got last time from the CMV encephalitis, but unlikely because we have continued treatment and he had improved so much on the treatment. The third, is our hope, because they could potentially look at switching some meds around if necessary, and see if his counts come back up.
As you can imagine, I have been sick to my stomach all week, a nervous wreck waiting for those 4:30 am labs each morning. It's almost all I can think about. Rowan has been through so much already. I'm not sure his broken down little body could handle a third transplant, or that they'd even let us try. So, I asked them to be as aggressive as possible to try and figure out this drop in counts, and begged them to do whatever they have to do in order to save this graft if that is truly what was happening (graft failure). One option would be to do a DLI, which would mean getting Brian back up here to have him donate again so we could give Rowan a boost of lymphocytes. That is only successful if there is still enough of Brian left in Rowan's body to boost though.
Yesterday the doctors came up with a plan. The chimerism test was sent again, to see if it is trending down. They ordered an LP to check his csf fluid CMV levels again, to see if it is increasing, and a BMB to check his marrow. Both of these were scheduled for next Tuesday in the OR, together. They also decided to switch one of his meds to one that is potentially less effective, but definitely less immunosuppressing. And we were told to wait patiently over the weekend, for results to start coming in next week. The doctor told me, "We are worried too. I'm gonna pray, you're gonna pray, we're all gonna pray. And hopefully this is not rejection again."
Last night, I prayed and prayed, and cried and cried. Then I remembered that text my Mom just sent me, before she passed away. Where she said she heard God whispering to her last month, as she sat here in ICU holding Rowan's hand, saying : "so why do you worry that I would desert him now before his healing comes to fruition?" I kept reciting that over and over again in my head. Willing myself to believe it was a sign from God, not just for my Mom, but for me too. I woke up this morning hopeful...tentative and a little scared, but hopeful. I woke up thanking my Mom, and thanking God.
Then, the BMT doctors came to my door. I asked if it was time for rounds, and they said, "soon, but we were wondering if we could come in for a minute first?" My heart sank. But they had a piece of paper with them. One that wasn't supposed to be here until Tuesday. It was good news though!!! Rowan still has 0% me, 0% himself, and 100% Brian. That is a great sign.
We still do not know what is going on exactly with his counts. We do still need to do the LP to see if CMV is reactivating, and they have made the one medication change. The doctor has a theory that now that Rowan has been trying the shorter runs of HD dialysis instead of 24 hour a day CRRT dialysis, his dosing of one of the strong medications hasn't been getting cleared as evenly as before. So potentially, those higher levels of that medication may be what was causing his anc to trend down. I hope and pray that is what it is, because that is correctable, and it is already being changed now, just on case.
I realize it is a lot of technical mumbo jumbo, but to boil it down to "how can you pray"...
1. Please pray that the csf fluid from the LP next Tuesday will come back clean with zero presence of CMV virus (or anything else:).
2. Please pray that his counts start coming back up and staying back up on their own, now that we have stopped the one particular medicine that may be the culprit.
3. Join me in thanking God for the second 100% chimerism test.
...and if you feel so inclined, you can join me in repeating what my Mom heard God speak to her "so why do you worry that I would desert him now before his healing comes to fruition?"