{"id":189,"date":"2025-06-23T03:23:41","date_gmt":"2025-06-23T03:23:41","guid":{"rendered":"https:\/\/cota.org\/cotaforlogansbattle\/?p=189"},"modified":"2025-06-23T03:23:42","modified_gmt":"2025-06-23T03:23:42","slug":"emotionally-drained","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforlogansbattle\/2025\/06\/23\/emotionally-drained\/","title":{"rendered":"emotionally drained"},"content":{"rendered":"\n

So much has happened these past three weeks making it quite an emotional rollercoaster\u2026 it\u2019s 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\u2019re at and where we are hoping to get to.<\/p>\n\n\n\n

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\u2019s decided that Jeff should be the donor, and he\u2019s 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\u2019s 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\u2019t subject Logan to the additional immunosuppressants (chemo and radiation) necessary for the \u201cconditioning\u201d that primes Logan\u2019s body to accept the bone marrow transplant right now. Logan\u2019s 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.  <\/p>\n\n\n\n

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As another possible way to get the adeno virus under control, there is an experimental treatment being used in Cincinnati Children\u2019s Hospital (this is the only institution authorized by the FDA to administer the medication as part of a clinical trial \u2014 we\u2019d be remiss if we didn\u2019t 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\u2019s been cleared for the treatment at Cincinatti.  This likely means that sometime this week he is getting a quick \u201cget of jail free\u201d card to head to Ohio for a day to receive the adeno-fighting donor T-cells. We\u2019re 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\u2019t been out of the hospital here in almost 4 months.  Once we get the adeno virus under control (praying praying praying\u2026), we can resume discussions on the timing and process of the bone marrow transplant.<\/p>\n<\/blockquote>\n\n\n\n

In addition to all this, Logan\u2019s 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\u2019t 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\u2019t get that until we initiate a bone marrow transplant.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

Logan\u2019s 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\u2019ve avoided GI bleeds now for almost 3 weeks. A huge victory. <\/p>\n\n\n\n

Emotionally it\u2019s 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\u2019re 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.  <\/p>\n\n\n\n

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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\u2026 4 months of crafts, audiobooks, TV and legos is losing its novelty. The videos and messages and packages from Logan\u2019s 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.<\/p>\n\n\n\n

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So much has happened these past three weeks making it quite an emotional rollercoaster\u2026 it\u2019s 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\u2019re at and where we are hoping to get to. It has now been decided […]<\/p>\n","protected":false},"author":2201,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-189","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\nemotionally drained - COTA for Logan's Battle<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cota.org\/cotaforlogansbattle\/2025\/06\/23\/emotionally-drained\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"emotionally drained\" \/>\n<meta property=\"og:description\" content=\"So much has happened these past three weeks making it quite an emotional rollercoaster\u2026 it\u2019s hard to find the energy or words to explain all that our family is going through. 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