02 Feb Switch
Keegan’s bone marrow laughed in the face of oral steroids. Ferritin rose to 26,000 today. Lymphocytes are nonexistent, but the remainder of his labs, while all continuing to trend poorly, are not worsening at quite the rate we have seen in the past. So tonight we are switching him to IV steroids. We have dropped the “pulse” plan and are proceeding with the methlyprednisolone until further notice. Until we see sustained improvement across the board. Then, we will switch back to oral steroids (dose to be determined later) and will wait to ensure continued stability/improvement before we can go home. The next step would be etoposide, a form of chemotherapy, if the IV steroids do not work.
Outwardly, he continues to look stable. Very tired and increasingly crabby, paler than the bedsheets. But stable. Despite it all, he has managed to keep down a few bites of food here and there, so he’s not even on a drip of any kind for once in his life. His heart rate and blood pressure are lower than we are used to, but we aren’t sure why. The team is only doing one lab draw per day. Gray and I would like to see at least twice per day of certain levels, but until we can write our own orders, we have to wait until tomorrow to see how things are going.
We received a bit more information from Cincinnati Children’s today. Audrey, unfortunately, is not a bone marrow match for Keegan, nor myself or Gray. There are, however, a few possible unrelated matches in the national marrow registry. Again, we are not seeking a bone marrow transplant at this time, but we are doing the initial matching so that we know what our options are if we get to that point.
The team in Cincinnati also asked us to think seriously about transferring Keegan back up to there if he has not shown improvement by the weekend. We are considering it, but at this point, they concur with the recommended course of treatment. As of right now, Gray and I feel that if the treatment will be the same and if they are willing to continue to advise us from a distance, we need to be near our families. The next few days will be crucial in making these decisions. We need to see where Keegan leads us and see how the remaining labs we sent to them come back.
The Lord is going to great lengths to teach me patience lately. For tonight and the coming days, it continues to be “wait and see”, “wait and see.” Thank you for joining us on the watch.
