Well loyal Logan (and Coyle) supporters… you are long, long overdue for a blog post. Believe it or not, I have started this post nearly 10 times times over the past 3 months but just went I am ready to hit publish, something new comes up turning the conversation into an entirely different direction. Below is a post that I started at the beginning of August… I’ll pick up at the end of that with the August/September updates.

(From August 6)

Over the past 6 weeks since our last entry, there has been quite a lot of progress… and regression… and progress. As many of you may have heard, we traveled to Cincinnati on June 25 for adeno virus treatment. This was Logan’s first time outside the hospital in nearly 4 months. It was quite an adventure, a big trip for a 2 minute infusion! Despite some hiccups with our travel home (flight cancelled because of weather which meant we stayed the night at Cincinnati Children’s), it’s safe to say the trip was a success. Logans viral load dropped from 250,000 down to 50,000 within days, which coincided with some fever and fatigue. That was a real turning point for Logan. The team was impressed with how well he’d done on the trip and gave him a day pass on the 4th of July to come home. His counts came back up and he was more determined than ever to really go back home. Five days later, he was officially discharged from the hospital. During that time, his AFP continued to rise which prompted conversations about when and how to treat the cancer and whether it would be safe to do chemo and a bone marrow transplant. A PET scan revealed a mass hidden behind his stomach, by the kidneys, which the team believed to be a culprit of the escalating AFP. After almost a week of discussion, it was decided the best way to proceed would be an open surgery to remove the nodule with the thought of doing systemic radiation/chemo and (if needed) bone marrow transplant. Logan went in last Monday, July 28, for a 7 hour procedure with Dr. Kato, and had a 2 cm nodule removed which was later confirmed by biopsy to be hepatoblastoma. He spent 2 nights in the ICU and 2 on the oncology floor and was discharged Friday morning. To say he healed quickly is quite the understatement. They reopened his transplant incision but by Friday, Logan was walking around the house at home with relative ease. He even got to celebrate his Uncle Jon’s big wedding day out east on Long Island and gave the world’s sweetest toast with his twin. In the subsequent days, Logan’s AFP dropped from 24,000 to 8,000. The four nodules they biopsied only showed hepatoblastoma in one nodule which is encouraging. However, two of the others were positive for fungal infections… likely the remains of the candida infection he fought most of the spring which we are treating through antifungal infusions. 

(Picking up now with August-September news)

The first three weeks of August were amazing. Logan remained outpatient and his AFP continued to drop down to 2,000 where it has remained for the past month or so. He went in several times a week for platelet transfusions and magnesium (and occasionally phosphorous) runs. The biggest issue that we were managing was his frequent stools that prevented him from gaining weight and retaining nutrients. Nevertheless, his viral loads continued to drop thanks to a SECOND trip to Cincinnati for VSTs (thank you Ronald McDonald for hosting us!). We needed to get the viral load as close to 0 as possible because his bone marrow biopsy confirmed that in order to address the remaining cancer, we’d need to do a bone marrow transplant. We moved into the pre-transplant work up phase in mid-August which consisted of a GFR to test the kidneys, a pulmonary function test and CT scan. The results of those put a halt to the whole transplant discussion. Logans kidneys were starting to show signs of deterioration, likely from all the meds (especially the probenecid for Adeno). His CBCs were also trending down… he wasn’t holding platelets or blood as long as he had been and his white blood count and neutrophils were dropping. His CT scan also revealed something that shocked us- pneumatosis, or air in the walls of the intestines. Logan was totally asymptomatic… until that night when he began having stomach pains and throwing up. We were admitted to the hospital the next morning (August 26) and we stopped feeds and placed him on antibiotics. The prevailing theory is that the med they’d put Logan on to fight a climbing CMV viral load (Valcyte) had suppressed his counts over the course of the three weeks he’d been on it. That was discontinued and replaced with a new med that’s only approved for adults (marabavir). Logan was hospitalized for 13 days… one day shy of the 2 week minimum we’d set as a marker of when we’d get him a PS5 (as he has liked to point out to us). During those two weeks, Logan was placed on TPN for gut rest and the recovery went relatively smoothly. The biggest obstacles for discharging him were administrative- setting him up for TPN at home and getting a prior authorization for that trial med, marabavir, approved. It was a stressful time but our family’s fairy godmother (aka our social worker) made it all happen.

Logan was discharged September 9th but spent everyday that week in the oncology/bone marrow clinic because he suddenly started having GI bleeds. Some new meds and multiple platelet transfusions kept us out the hospital (the pneumatosis had almost entirely resolved) but we did need two trips to the ER to refill on platelets and red blood cells. In between transfusions though, Logan had the weekend of his life… one that he so so so deserved. On Saturday Sept 13 he celebrated Mrs Met’s bday with Mr and Mrs Met and all their besties… who coincidentally are Logan’s BFFs. NJ Devil, Sparky and Nyisles from the Islanders, PeeWee from the cyclones, Redd from RedBull and so many more. Not only did he get to party with his mascots but he was given the honor of escorting Mrs Met to the mound to throw out the first pitch!!! My mama heart could barely take it, pretty sure I sobbed happy tears into the fur of about 10 different mascots that day. Mascots, if you are reading this, know that Logan truly feels that you are his dearest friends and nothing brings him more joy than being in your company.

And then… well, the only thing that could even attempt of rival that kind of an experience was the events of Sunday. Our fairy godmother once again gave us the most incredible gift of tickets to the amazing Savannah Bananas! Logan and his posse were VIBs (very important bananas). Not did we get to meet the players for the Bananas and their rivals the FireFighters (who, omg, most beautiful people, both inside and out!) we also got to hang out in the Yankee dugout with the whole crew. This organization truly created the most cherished experience for Logan. They gave him the royal treatment, taught him bat tricks, gave him all sorts of goodies and prayed for him. The highlight though was bringing Logan out onto the field mid game to dance to Hey Baby alongside the players in front of tens of thousands of people. Logan was beaming like I’d never seen him before. 

So as you can see, high highs, low lows. The past week has been mostly recovery… viral loads, AFP are stable and relatively low and the latest colonoscopy biopsies showed little to no rejection on the intestinal grafts. The biggest head scratcher now is an uptick in his bilirubin… despite nothing appearing on ultrasounds. I’m praying this is just a side effect of the TPN and will resolve as we reintroduce food. We have a liver biopsy scheduled for October 1 so prayers (as always are welcome). I imagine we’ll also start circling back to our bone marrow transplant conversation and redo some of the pre-procedure tests. 

We have such a long way to go for recovery and it is just so daunting sometimes when I sit back and think about it. So I don’t. I am grateful to God for every day I have with Logan, especially at home, and am doing all we can to fill these days with lasting memories to get him through those other times that I know await us that are much less fun. 

Continue to pray for Logan, for us and for his whole care team that we continue to see advances and overcome obstacles. I know I have been very MIA with many of you this past month but know that I do so cherish and appreciate the texts, DMs, gifts, meals, hugs and all other acts of kindness you’ve shown. It is truly what gets me through the day and gives me the resolve to push on. I will do my very best to not have such a long gap in between this and our next update. Thanks for your patience… and love.