I haven’t written a blog post updating on Logan’s care since June (Becca did the last one).  Throughout this long journey, we have appreciated so much knowing all the people reading and staying up to speed on things.  But I remember that feeling in June:  it all just got so complicated, so exhausting to even put down on paper with all the cascading developments, none seeming to go in the right direction.  But I’ve been meaning to write one of these for a while now, and all you Logan supporters so very much deserve it, and it helps us to write it.  So here it goes.

I simply cannot believe it, but it’s been almost 8 months since Logan’s multi-visceral transplant surgery.  I remember the feeling of going into that.  There was a lot of trepidation about what the post-surgical care would like look, but also a lot of optimism that it was the definitive step needed to turn the corner and rid Logan of cancer.  Things did not go according to plan.  The most unpredictable and devastating turn of events happened after Logan received a single round of post-transplant chemotherapy.  As a result, his bone marrow was seemingly wiped out to the point that it will not return to being normal, and also not to the point where he can handle receiving more chemotherapy.  That means that the residual cancer cells can reestablish a foothold, and we are reactively dealing with that as it happens. 

Since Logan’s bone marrow took the big hit in April, we have now had four different bone marrow aspirates, which measure the health of the bone marrow cells.  Each has showed less than 10% cellularity, meaning less than 10% of functioning cells in the bone marrow.  As you can intuitively pick up, that is very degraded.  For Logan, that has manifested in a few ways:  the bone marrow cells that make Logan’s white blood cells (which give you immunity and prevent you from getting life-threatening infections) appear to be working properly.  His white blood cell and neutrophil counts are within normal parameters.  But his platelets (made from another line of bone marrow cells) continue to be diminished.  This means that even 7 months after receiving chemotherapy, he is still “transfusion dependent,” needing platelet transfusions once or twice a week.  He also needs blood transfusions every few weeks (these are red blood cells which are made from a different cell line within your bone marrow).  Suffice it to say, these are the ways that Logan’s diminished bone marrow cellularity is currently manifesting.  And sufficient time has passed now that it seems incredibly improbable that his bone marrow will recover on its own without a bone marrow transplant.

But as you know, bone marrow transplants are very risky.  All the variables need to be optimized to the maximum extent possible to undertake that procedure.  We’ve had meetings with Logan’s doctors 3 or 4 times now in the last few months about moving forward with the BMT.  But each time, something different pops up that needs to be resolved before we can go in that direction.  The first was bringing the viral load down for the Adenovirus that he had since transplant (as you recall, we made 2 trips to Cincinnati Children’s hospital to get an experimental treatment to help with that).  The second time was derailed after we found the mass on Logan’s kidney that was surgically removed, and the follow-on recovery from that.  The third time we were moving in the direction of the bone marrow transplant, Logan developed the intestinal infection and subsequent pneumatosis, which took about a month to fully resolve and get back up to full feeds.  And now, we seem to be in a similar posture in the past couple weeks, with serious talk of proceeding with the bone marrow transplant, but then other things popping up that need to first be addressed.

The current of those things is primarily Logan’s liver function.  For almost two months now, we noticed Logan’s bilirubin start to climb, along with other numbers on his “liver function tests”.  For a while we suspected that was driven by Logan being on TPN (IV nutrition) exclusively after he developed pneumatosis in September.  But now, the pneumatosis has resolved, he has been back to receiving full, normal feeds for almost a month, but the bilirubin in particular remains high.  That, coupled with a recent MRI, indicates there might be an obstruction in the bile duct inside the liver that is causing the bilirubin to remain elevated.  To address that, this Thursday Logan is scheduled to have an ERCP procedure to try to clear the obstruction within the bile duct.  That is a delicate matter, involving elements of interventional radiology and an endoscopy.  We are preparing for at least a couple of nights recovery in the hospital after the procedure to monitor things. 

Also at the forefront of our thinking are Logan’s kidneys.  Recent tests have shown degradation, and he has certainly received many meds and treatments that are known to cause kidney damage over the past year.  We are watching them closely, including with a nephrology appointment last week.  It still is unclear how, and to what extent, that might impact the team’s thinking with respect to the BMT.

As you can tell, Logan’s care is really a full court press.  There are so many variables and things to track.  Becca has taken on that mission with her characteristic tenacity and determination.  No one in the world can do what she does.  But it is so hard and takes a toll, especially with so many things being outside our direct control.  It is also so hard to manage things so closely at all hours, and for new things to continually pop up and not feel an overall sense that that effort is leading to things holistically getting better.

The one thing that we can control is trying to do as many fun things with Logan as possible while he is home and feeling relatively well.  Last weekend was a trip down to Philadelphia to see the Eagles demolish the Giants.  This weekend included a specially-curated mascot event for Logan hosted by the Children’s Cancer Research Fund, as well as a trip in to the city to see Mamma Mia (this was a much deserved gift primarily for Riley, but Logan tagged along due to FOMO).  We also bought Logan an electric ATV that he has used to speed around the neighborhood the past couple weeks, including while trick-or-treating on Halloween.

As always, keep Logan close in your hearts and minds. There is a lot of uncertainty, as there has been for a while.  But all of your support has helped to light the way forward for us all.