is to stay out of the hospital. 

I can’t believe it’s already been a month since our last entry. I’m pretty sure the day the blog was last updated, we found ourselves in the ER at Columbia at 4 in the morning with a serious GI bleed and a hemoglobin of 3.6. For context, normal hemoglobin is 11, and you transfuse under 7. It was quite scary. Logan got double bags of blood and platelets and had an endoscopy/colonoscopy that showed an ulcer right at the site of his g-tube balloon. Honestly, that was the best possible cause we could have hoped for. He was taken up to the PICU where we stayed for about 5 days. During that time, Logan also had an ERCP to evaluate his bile ducts and try to decipher what was causing the elevated bilirubin levels. The findings were shocking- there was no single duct that seemed blocked or impacted… rather Logan’s entire liver had systemic damage. A stent was placed but, spoiler alert, it didn’t help. About 10 days after that discharge, we found ourselves once again in the Morgan Stanley ER at ungodly hours… this time due to severe pain in Logan’s left shoulder that wouldn’t improve with pain meds. The doctored feared it was referred pain from pancreatitis, a common risk of ERCP. While doing our lab work up, Logan had another GI bleed which seemed to relieve the pain. Once again we were admitted and got an MRI and MRCP. The team determined that a liver and kidney biopsy would be the most logical next step. We were discharged after 5 days in patient and scheduled the biopsies for the following Monday (11/24) before Thanksgiving. Mercifully this admission coincided with Mimi and Papa’s arrival so we had additional help. We were also so happy that Logan got discharged in time to go to the Islanders’ NHL Fights Cancer hockey game where we met Sparky (again), the players and got VIP seats. The biopsies went smoothly and we enjoyed a very quiet, relaxing Thanksgiving weekend with family. We saw Wicked, got a Christmas tree, played with neighbors and took in the novelty of just being home. 
On December 2, we were once again admitted to 5 Tower Oncology floor… but at least this time it wasn’t through the ER. Logan’s shoulder pain returned and we were seeing very small blood clots in his urine… likely from the renal biopsy the week before and low platelets (26). So we were in patient again. Got an MRI. Again. And stayed in the hospital for 3 days. It was a real bummer because we had just made weekend plans to stay upstate at a resort, courtesy of an incredible local foundation, https://www.rosiebeagan.com/ and we were really excited. But with Logan’s fragile state… it just seemed too stressful. That said, we had another very nice weekend, saw Zootopia, made buckeyes, played with friends… maybe less is more right now.

So I guess that brings us to today… I’m currently at Cohen’s Children’s Hospital with my boy getting a blood transfusion (he got platelets here last night). I’m really not sure why our hemoglobin is not holding like it used to… maybe from the blood in the urine, maybe our bone marrow production is worsening… in any case, we really need this BMT and it’s so frustrating to not be able to do it because of elevated bilirubin levels. Until then, we are totally transfusion dependent.

To summarize the findings and updates from all these visits… the renal biopsy showed very similar patterns as the liver… systemic damage likely caused from a combo of medications and viruses. We continue to work closely with nephrology so we can figure out the best way to treat the remaining cancer (his AFP has mercifully held steady around 4,000 since July). We are on strong antibiotics in case there is lingering disease causing destruction to these organs (but Logan hasnt had any fevers or other symptoms to indicate infection). His CMV, Adeno and EBV viral loads are very low or undetected which is also wonderful… thank goodness his neutrophils and white blood counts have been great. 

In non-medical updates, we are hanging in there as well as can be expected. The past two months have been really stressful. The stakes are so high and the room for error is so low… lots of things to remember, meds that get modified constantly, Logan’s health that can go from great to terrible in literally the span of 15 minutes, managing pharmaceutical deliveries, medical equipment maintenance, appointment scheduling, not being able to plan anything more than 1-2 days in advance… plus just trying to make the most everyday for Logan when he has energy and is out of the hospital. It’s a lot to sustain. So on that note, I wanted to give another special shout out to BelieveWell (https://www.believewell.org/) which provides mental health support to caregivers. I am so, so grateful to this organization for not only reaching out to me directly but setting it all up for us, too. I can’t even begin to count the number of people that have encouraged me to talk to someone but the thought of adding one more task (a medical one no less…) to my already lengthy list of things to take care of was incredibly daunting. I look forward to getting started soon.

Finally, as we wind down 2025 and find ourselves in the midst of the holiday season, I have swung the entire pendulum of emotions… sad that we are in such a precarious state, frustrated that my entire life now totally revolves around Logan’s care, angry about a million things, grateful that Logan is still here and (for the most part) home, humbled by all the people that reach out to us to encourage, feed and support us, comforted knowing how many of you are praying for us, terrified for the future, nostalgic for the past, touched by all the new friends we’ve found because of this journey… this year has been a messy one. I am really hoping we end the year on a quiet note, with my sister and her family coming in from the PNW, my parents from Hawaii, and Jeff’s fam on Long Island. If we can stay out of the hospital until the new year, that would be a huge win. Please continue to keep us in your thoughts and prayers and thanks as always for caring.