After the stressful mystery of the prolonged headache (now a cold case), our week quieted down considerably. However, we did get to finish out radiology bingo with another ostomy scope on Thursday and an ultrasound Friday (for those of you tracking, that’s after MRI Monday and CT scan Tuesday). As Jeff mentioned, now that we have passed our one month mile stone, the team is looking ahead to the next big step: post-transplant chemo to eliminate any residual microtumor cells floating around. Two major hurdles to clearing Logan for treatment are: 1- being sure Logan’s new organs are happy in their new home and 2- that his body is optimized to undergo the harsh effects of chemotherapy. So step one is to review the intestines more thoroughly to manage any rejection (via scope and CT) and step two is to make sure there are no viruses active that might flare up when he’s on chemo while we wean his immunosuppressants.
Logan’s scope Thursday came back similar to that of Monday’s showing some mild rejection. This was to be expected with his Tacro dosing being lowered this week. The team decided it would be in Logan’s best interest to give an extra bolus of steroids to boost him back up and set the organs up nicely for possible chemo next week. So last night (Friday) Logan started day 1 of 3 of a Methylprednisolone protocol. He mercifully has showed zero signs of roid rage (but I had Lego sets ready to pacify to him just in case!!). On top of that, we’ve increased Logan’s g-tube feeds and he’s gaining back most of the weight he lost post-transplant. That plus some pretty good poops… well, it’s a GI win.
Step 2 of Operation Chemo is getting the adenovirus under control. He’s been getting a crazy treatment Monday-Wednesday-Friday that is basically an 12 hour ordeal which involves lots of hydration to make sure his kidneys aren’t affected by the cidofovir. The team decided to go big Friday and opted for a stronger cidofovir dosage that would last for the week (so we don’t have to deal with 3 days a week of Logan peeing every 20 minutes). That strong hit coupled with his latest Adeno lab showing a drastic decline in the virus’ presence in the body (and the scope showing no Adeno in the intestines 🎉) bodes well for a sooner rather than later chemo start.
So we close out our week in good spirits, happy faces brought on in large part by our Smiley Riley who spent the whole rainy Saturday decorating Easter eggs with her brother and watching Harry Potter and the Half-blood Prince. Logan actually booted both me and Jeff out of the hospital early yesterday insisting he wanted time just with Mimi and Papa (two other All Star members). So Jeff and I took advantage of our extra time away to binge watch White Lotus and take Riley out for a special daughter dinner. I’ve said it before but it bears repeating… that girl is the unsung hero of the family. She has been so understanding of our crazy, unpredictable schedule (I was heartbroken to miss her second grade circus performance earlier this week where she soloed on stilts) and she is such a ray of pure light and positivity.
Asking for extra prayers as we enter Holy Week that Logan continues to show signs of improvement and healing. As always, we are humbled and grateful to you all for your prayers, meals, donations to COTA for Logan’s Battle and kind words.















Thanks for the update, as always you are all in our thoughts and prayers we love and miss you. aunt sandy and uncle richard.