So much has happened these past three weeks making it quite an emotional rollercoaster… it’s hard to find the energy or words to explain all that our family is going through. Hopefully this post gives a good overview of where we’re at and where we are hoping to get to.

It has now been decided that Logan will need to undergo a bone marrow transplant.  After doing the testing to see whose immune system would be the best match, and thus who would be the best donor for Logan, we learned that Riley, Jeff and Becca are all 50% matches on the major markers they look at.  The doctor’s decided that Jeff should be the donor, and he’s been undergoing a ton of additional bloodwork and testing as part of the screening process. We initially thought we might proceed with the transplant as early as this week.  However, Logan’s adeno viral load has exploded, up from 7,000 earlier this month to 170,000 on the last check. With the virus on the rise in his body, we can’t subject Logan to the additional immunosuppressants (chemo and radiation) necessary for the “conditioning” that primes Logan’s body to accept the bone marrow transplant right now. Logan’s been receiving cidofovir, an antiviral medication, for Adeno over the past 3.5 months, and until now it has kept the virus more or less in check. But because of the steroids Logan has been on and his general severe immunosuppressed state, it seems to be skyrocketing.  

As another possible way to get the adeno virus under control, there is an experimental treatment being used in Cincinnati Children’s Hospital (this is the only institution authorized by the FDA to administer the medication as part of a clinical trial — we’d be remiss if we didn’t put in a plug for the extreme importance of the NIH and clinical trials) that essentially trains donor blood to fight off adeno cells and then infuses the trained blood into the immunocompromised recipient (Logan). We just received word today that Logan’s been cleared for the treatment at Cincinatti.  This likely means that sometime this week he is getting a quick “get of jail free” card to head to Ohio for a day to receive the adeno-fighting donor T-cells. We’re praying that the millions of factors involved in this align to make the journey and treatment a success. For his part, Logan is totally thrilled with the prospect of hopping on a plane for a day and having an adventure.  After all, he hasn’t been out of the hospital here in almost 4 months.  Once we get the adeno virus under control (praying praying praying…), we can resume discussions on the timing and process of the bone marrow transplant.

In addition to all this, Logan’s AFP continues to mount, up to 3,000 from its trough of 68 back in April and after getting the chemotherapy that totally knocked out his bone marrow. As of now, we haven’t seen signs of tumor growth in his most recent MRI and CT scan but it is certainly a race against the clock.  Logan needs more chemotherapy to fight the cancerous cells, and can’t get that until we initiate a bone marrow transplant.

We continue to manage the GVHD, weaning his steroids carefully to stave off fever and rashes but enough to hopefully prevent adeno and other potential infections from flourishing.

Logan’s transplanted intestines seems to be working nicely recently.  He is almost up to receiving all his calories through the gut, and therefore, we are hoping to wean him off IV nutrition in the near future. With daily platelet transfusions, we’ve avoided GI bleeds now for almost 3 weeks. A huge victory. 

Emotionally it’s been a very difficult month. Logan is now going on 4 months of not going outside, being confined to his room and tethered to a very large med pole that limits his mobility even around the room. And we’re nowhere near close to being sent home. With school letting out and seeing everyone around us having fun and starting to enjoy summer vacation, it can get really depressing.  But in ways that it would be difficult to express in words, Logan has endured this with a strength and grace that is superhuman.  His positive attitude is what makes the concept of all of these future grueling and risky treatments possible.  

While Logan is incredibly resilient, it really is hard to stay positive sometimes.  Any ideas or ways we can continue to keep Logan engaged, distracted and entertained are welcome… 4 months of crafts, audiobooks, TV and legos is losing its novelty. The videos and messages and packages from Logan’s mascots around the country have been a tremendous help to remind Logan how loved he is and to encourage him to keep fighting to get back home. Thank you all for your continued support and prayers.