I’m going to try my best to make this post a little more upbeat than our last entry. Although Logan’s treatment options remain at an impasse, we have been able to make small steps towards overall quality of life improvements. I believe when we last left off, Logan was experiencing intermittent episodes of moderate back pain. By the end of March, Logan’s pain became more persistent and severe. After getting several MRIs on his spine, head and pelvis (all without sedation, brave kid), we found a one inch tumor on Logan’s spine, likely remnant of his surgery in January. Our radiation oncologist at Cohen’s, Dr. Sharma, worked alongside Logan’s onc team and we were able to get Logan started very quickly on radiation therapy. He underwent a 10 day protocol that started April 1. I’m delighted to say that since starting radiation (and some longer lasting pain meds), Logan has been almost entirely pain free the month of April. His latest AFP (tumor marker) was 6,000, down from a peak level of 20,000. He finished the last session on April 14th and his cousins, on spring break from Seattle, cheered him on as he rang the bell signifying completion of the radiation course. We continued the celebration that night with a trip into the city to see Aladdin.

So that was the oncology side of things… from the bone marrow side, radiation has not been kind. Logan has required daily platelet transfusions and blood transfusions every 7-10 days. We’re hopeful that his marrow will rebound a bit in the coming days as we put more distance between us and the radiation treatment. The team at Cohen’s has been absolutely amazing and have tried their best to make sure our daily visits are pretty short and often filled with fun visits from Dutton and Quinny (the therapy dogs) and of course mindless YouTube videos.

Then on the liver side… the GI team at Cohen’s has been equally wonderful to work with and extremely accommodating. He was scoped by the team 3 times in March. The first time was an unsuccessful but insightful ERCP that showed the incision made last year to drain the bilirubin had closed up. This had caused his bilirubin levels to rise pretty dramatically to 27… and for context, the average person’s bilirubin level is .3-1.2. He has been jaundiced for quite some time now but he had been exhibiting other symptoms such as extreme fatigue (Logan sleeps about 14 hours a day) and pale stools. Because Logan’s GI anatomy is unique to say the least, performing an ERCP is a lot trickier and at higher risk for side effects like pancreatitis. So the second time pediatric GI attempted the ERCP, we involved the adult team as well, as they handle much higher volumes of this kind of procedure. The team placed a stent and Logan’s bilirubin came down a bit and has been hovering around 22 the past few weeks. It’s not sustainable long term but manageable for now.

Overall, April was a successful month and we were truly able to enjoy our time together thanks to the transition to palliative care. It has minimized hospital stays and maximized time at home. Since the last entry, we’ve been VIPs at a Brooklyn Nets game (surrounded by 22 of our best friends and family), basked outside in the sun with neighbors, enjoyed sleeping in our bed cuddled with Misty Cato our new kitten, thrown out the first pitch at a Brooklyn Cyclones game and hung out with their mascots in a VIP suite, enjoyed cozy movie nights, and had some epic gatherings with our best friends. We celebrated my birthday with a very special evening at Saturday Night Live with two of our favorite nurses and our new bestie Katherine and got to go behind the scenes to meet the cast. We had visits from teachers, the sweetest lab puppy named Tess, and we’ve been working on building out the Mascot Hall of Fame – – – check out the photos. We returns to Yankee Stadium to cheer on the Savanna Bananas and exchange friendship bracelets with our BFF split and had some lovely visits from our friends from CHONY. The days have been full of love and comfort and I know I will forever be grateful for this time.

Of course I couldn’t end the post without the biggest shout out to our dear friend Brittany DeMeo who organized the most incredible event for Logan last Saturday. When she approached me with the idea back in February, I was so touched but extremely stressed as Logan’s health was very precarious. I told her I was super supportive but didn’t have much bandwidth to coordinate. She said not to worry and went right to work. For weeks she worked behind the scenes unbeknownst to me, reaching out to the local elementary schools, our parish and the youth sports groups. She and her family created flyers that were distributed around town and she took care of every detail from booking the venue to arranging for a DJ, face painting and snacks to be available. A few days before the fundraiser, she surprised us saying she had arranged for police to escort Logan to the venue in a fancy sports car. He rolled up in a McLaren and was greeted by a huge crowd of friends and family. The local pep squad cheered for him and he and Riley were the King and Queen of the party.

The event raised a lot of money which we so appreciate, but even more than that, we were overwhelmed by the outpouring of love and strength. This has been by far the hardest journey I could ever imagine and I truly believe our family’s resilience is entirely thanks to your support, prayer and generosity. Seeing how far reaching Logan’s story has spread and the number of lives he’s impacted is both awe-inspiring and humbling. As we kick off the twins’ birthday month (coming into double digits on May 13!), we have so much to look forward to thanks to friends, family and community. Next May Logan will celebrate his Make A Wish with a big shopping spree at the mall, we’ll have a ribbon cutting at the newly finished Mascot Hall of Fame, and some special surprises around NYC and Long Island. Doing our best to be in the moment and make every one of these experiences as memorable as possible and are so grateful to all of you for making us all feel so special.