Into July

I told myself that I'd update you all at least twice a week after Logan was released from CHO; clearly that plan hasn't worked out. :) But I promise that I'll try to do better, that I'll make more of an effort to be intentional with my posts, because I do appreciate every single one of you and know that you want to know what's going on with our family and with my sweet Logan.

I'll begin with the technical stuff from the past week. Adam took Logan to CHO on Friday morning for his first official post-treatment oncology clinic visit. His numbers were stable, so no transfusions (or "fill ups", as Logan calls them) were needed. Dr. T. (who I should just call Joe, since it's how I refer to him around the house these days anyway) concurred with everyone else that the MRI result looked very stable, with no signs of new growth. He's going to begin two oral chemotherapy drugs tomorrow --cisretinoic acid and vorinostat-- and will be on them for about a year. (Yes, a year.) There's very limited data on the drugs and their effect on AT/RT cells, but the data that does exist suggests that they have a positive impact on long-term outcomes. In terms of side effects, one of them causes nausea and the other affects blood counts, so we could well be in for plenty of transfusions in the months to come.

Otherwise, we're supposed to work on patching his right eye in a continued attempt to re-train the muscles to work properly. Joe said that since his eye does seem to go in and out of alignment from one day to the next, the technique may end up working, but it's still very possible that he'll need corrective surgery down the line. In the hearing department, he has an ENT appointment at CHO on Tuesday. The doctor will evaluate whether or not he needs tubes --apparently plenty of kids in Logan's position do-- and if so, he'll have them placed. If not, we'll keep an audiology appointment he has scheduled for later in the week to begin the process of assessing his hearing and beginning the process of getting a hearing aid. In short, he's pleased with how Logan looks and how far he's come.

Here at home, we're still working on adjusting to the new norm. Adam's traveling to his office a few days a week now, leaving me at home alone with all four kids. Ordinarily I'd sail through it, but it's challenging since we can't really go anywhere. Suffice it to say that our home is very noisy most of the time. I do cherish the sounds of all four of my babies playing together, laughing, and (at times) even fighting, but it's tiring.

I feel like I owe more of an update here --to fill you in on how I'm really doing and feeling-- but I need to get offline and work on a few other projects for now. I know a few of you appreciate videos, so I'll try to remember to drop one off soon!

In closing, a few prayer requests. First off, and above all, please offer up some prayers for thanks and gratitude for where we are right now. Adam and I are both cognizant of the fact that things could've gone very differently, and we're grateful that Logan is home and doing well. Secondly, please pray for continued, sustained protection from recurrence for Logan. I pray every day, multiple times a day, that the Holy Spirit will fill him with light and drive out any darkness that's trying to hide. After all, the dark cannot exist where the Light shines. And I ask you to pray in like kind. Thirdly, please pray for our other children --for understanding, for peace, for patience-- as we try to make time for all of them and create a normal home life amid such an abnormal sort of reality.

Thank you so much for your continued prayers and support, for unexpected notes of encouragement, for just being you and being open to go along on this journey with us. You are a blessing to me!