{"id":224,"date":"2026-06-17T16:27:41","date_gmt":"2026-06-17T16:27:41","guid":{"rendered":"https:\/\/cota.org\/cotafortimmy\/?p=224"},"modified":"2026-06-17T16:27:42","modified_gmt":"2026-06-17T16:27:42","slug":"a-new-apheresis-journey","status":"publish","type":"post","link":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/","title":{"rendered":"A New Apheresis Journey"},"content":{"rendered":"\n

Tim definitely notices a difference in how he feels since his transplant. In fact, he recently told me that before<\/em> he was diagnosed two-and-a-half years ago, he was at 1000%. Now, six weeks post-transplant, he\u2019s at 999%. He \u201cjust needs that one percent to be all the way better.\u201d\u00a0<\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

He\u2019s playful, sassy, and active. He\u2019s playing with other kids at the Ronald McDonald House playroom, and I get flashbacks to the carefree kid he was years ago. Yesterday, he was even trying to get Shay<\/em> to run around, which is a total 180 from how things usually are. He\u2019s already asked to go out to the patio in the hospital after clinic because he \u201cwants to run around and it\u2019s the only place he can right now.\u201d<\/p>\n\n\n\n

However, it doesn\u2019t look like the new treatments \u2013 plasapheresis and obinutuzumab \u2013 have been enough to get him into remission (at least not yet). His labs aren\u2019t where they need to be, and he\u2019s still struggling with some of the FSGS symptoms that plagued him before the transplant. He’s getting increasingly distressed that he’s not growing, and hasn’t since he was four years old. Almost every day, he says he wishes he could grow “just one inch.” His swelling isn\u2019t as bad, but that\u2019s likely due in large part to the four to five bags of albumin he receives twice a week during pheresis.\u00a0<\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

Now, we\u2019re moving on to LDL apheresis, which is a treatment for FSGS that’s only approved for Humanitarian use when the disease has been resistant to everything else. It requires 12 sessions spread out over nine weeks\u2026 which puts us in Pittsburgh through the middle of August. It also means putting Tim back on high-dose steroids\u2026 Yay.<\/p>\n\n\n\n

In all likelihood, we\u2019ll stay here for about three more weeks while Tim receives twice-weekly treatments, and then return home. For the six weeks following that (at least), Tim and I will drive up to Pittsburgh once a week so he can meet with his team and continue receiving care. It\u2019s 9+ hours each way, so it\u2019ll put a lot of miles on the car and hotel charges on the credit card, but it\u2019s probably the best way to help Tim navigate his homesickness, put Shay back in her element, and make the overall situation easier for everyone involved. <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

This plan means Tim will be coming home with his vas cath, which he was adamant that he would not<\/em> be doing. But after realizing he could potentially go home in three(ish) weeks instead of nine\u2026 he was very receptive to the proposal. Being far away from home with a kiddo fighting a chronic disease and a wild<\/em><\/strong> two-and-a-half-year-old has been… challenging, to put it mildly. For everyone. The Ronald McDonald House is incredible, and I’m really thankful we have the opportunity to stay here. That said, I think we’re all ready to go back home, at least on a part-time basis.<\/p>\n\n\n\n

I feel like I keep saying this, but hopefully <\/em>this is the key to remission\u2026 if it\u2019s not, I don\u2019t know what\u2019s next. Tim\u2019s starting to worry, too. So, I\u2019m manifesting that this will<\/strong> be the key to it all.<\/p>\n\n\n\n

Fingers crossed.<\/p>\n","protected":false},"excerpt":{"rendered":"

Tim definitely notices a difference in how he feels since his transplant. In fact, he recently told me that before he was diagnosed two-and-a-half years ago, he was at 1000%. Now, six weeks post-transplant, he\u2019s at 999%. He \u201cjust needs that one percent to be all the way better.\u201d\u00a0 He\u2019s playful, sassy, and active. He\u2019s […]<\/p>\n","protected":false},"author":2525,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-224","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\nA New Apheresis Journey - COTA for Timmy<\/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\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"A New Apheresis Journey\" \/>\n<meta property=\"og:description\" content=\"Tim definitely notices a difference in how he feels since his transplant. In fact, he recently told me that before he was diagnosed two-and-a-half years ago, he was at 1000%. Now, six weeks post-transplant, he\u2019s at 999%. He \u201cjust needs that one percent to be all the way better.\u201d\u00a0 He\u2019s playful, sassy, and active. He\u2019s […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/\" \/>\n<meta property=\"og:site_name\" content=\"COTA for Timmy\" \/>\n<meta property=\"article:published_time\" content=\"2026-06-17T16:27:41+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-06-17T16:27:42+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/cota.org\/cotafortimmy\/wp-content\/uploads\/sites\/6743\/2026\/06\/IMG_0166-rotated.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1512\" \/>\n\t<meta property=\"og:image:height\" content=\"2016\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"katrinapetrovich\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"katrinapetrovich\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/\",\"url\":\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/\",\"name\":\"A New Apheresis Journey - COTA for Timmy\",\"isPartOf\":{\"@id\":\"https:\/\/cota.org\/cotafortimmy\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/cota.org\/cotafortimmy\/wp-content\/uploads\/sites\/6743\/2026\/06\/IMG_0166-768x1024.jpg\",\"datePublished\":\"2026-06-17T16:27:41+00:00\",\"dateModified\":\"2026-06-17T16:27:42+00:00\",\"author\":{\"@id\":\"https:\/\/cota.org\/cotafortimmy\/#\/schema\/person\/76c9dfd19e27a79768fc0e4599ad98ad\"},\"breadcrumb\":{\"@id\":\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#primaryimage\",\"url\":\"https:\/\/cota.org\/cotafortimmy\/wp-content\/uploads\/sites\/6743\/2026\/06\/IMG_0166-rotated.jpg\",\"contentUrl\":\"https:\/\/cota.org\/cotafortimmy\/wp-content\/uploads\/sites\/6743\/2026\/06\/IMG_0166-rotated.jpg\",\"width\":1512,\"height\":2016},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/cota.org\/cotafortimmy\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"A New Apheresis Journey\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/cota.org\/cotafortimmy\/#website\",\"url\":\"https:\/\/cota.org\/cotafortimmy\/\",\"name\":\"COTA for Timmy\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/cota.org\/cotafortimmy\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"},{\"@type\":\"Person\",\"@id\":\"https:\/\/cota.org\/cotafortimmy\/#\/schema\/person\/76c9dfd19e27a79768fc0e4599ad98ad\",\"name\":\"katrinapetrovich\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/cota.org\/cotafortimmy\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/8b5523e16da5322f0f9eeef177ff84b180fe4780c472bf62253b172732db85d0?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/8b5523e16da5322f0f9eeef177ff84b180fe4780c472bf62253b172732db85d0?s=96&d=mm&r=g\",\"caption\":\"katrinapetrovich\"},\"url\":\"https:\/\/cota.org\/cotafortimmy\/author\/katrinapetrovich\/\"}]}<\/script>\n<!-- \/ Yoast SEO Premium plugin. -->","yoast_head_json":{"title":"A New Apheresis Journey - COTA for Timmy","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/","og_locale":"en_US","og_type":"article","og_title":"A New Apheresis Journey","og_description":"Tim definitely notices a difference in how he feels since his transplant. In fact, he recently told me that before he was diagnosed two-and-a-half years ago, he was at 1000%. Now, six weeks post-transplant, he\u2019s at 999%. He \u201cjust needs that one percent to be all the way better.\u201d\u00a0 He\u2019s playful, sassy, and active. He\u2019s […]","og_url":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/","og_site_name":"COTA for Timmy","article_published_time":"2026-06-17T16:27:41+00:00","article_modified_time":"2026-06-17T16:27:42+00:00","og_image":[{"width":1512,"height":2016,"url":"https:\/\/cota.org\/cotafortimmy\/wp-content\/uploads\/sites\/6743\/2026\/06\/IMG_0166-rotated.jpg","type":"image\/jpeg"}],"author":"katrinapetrovich","twitter_card":"summary_large_image","twitter_misc":{"Written by":"katrinapetrovich","Est. reading time":"3 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/","url":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/","name":"A New Apheresis Journey - COTA for Timmy","isPartOf":{"@id":"https:\/\/cota.org\/cotafortimmy\/#website"},"primaryImageOfPage":{"@id":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#primaryimage"},"image":{"@id":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#primaryimage"},"thumbnailUrl":"https:\/\/cota.org\/cotafortimmy\/wp-content\/uploads\/sites\/6743\/2026\/06\/IMG_0166-768x1024.jpg","datePublished":"2026-06-17T16:27:41+00:00","dateModified":"2026-06-17T16:27:42+00:00","author":{"@id":"https:\/\/cota.org\/cotafortimmy\/#\/schema\/person\/76c9dfd19e27a79768fc0e4599ad98ad"},"breadcrumb":{"@id":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/"]}]},{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#primaryimage","url":"https:\/\/cota.org\/cotafortimmy\/wp-content\/uploads\/sites\/6743\/2026\/06\/IMG_0166-rotated.jpg","contentUrl":"https:\/\/cota.org\/cotafortimmy\/wp-content\/uploads\/sites\/6743\/2026\/06\/IMG_0166-rotated.jpg","width":1512,"height":2016},{"@type":"BreadcrumbList","@id":"https:\/\/cota.org\/cotafortimmy\/2026\/06\/17\/a-new-apheresis-journey\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/cota.org\/cotafortimmy\/"},{"@type":"ListItem","position":2,"name":"A New Apheresis Journey"}]},{"@type":"WebSite","@id":"https:\/\/cota.org\/cotafortimmy\/#website","url":"https:\/\/cota.org\/cotafortimmy\/","name":"COTA for Timmy","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/cota.org\/cotafortimmy\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"},{"@type":"Person","@id":"https:\/\/cota.org\/cotafortimmy\/#\/schema\/person\/76c9dfd19e27a79768fc0e4599ad98ad","name":"katrinapetrovich","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/cota.org\/cotafortimmy\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/8b5523e16da5322f0f9eeef177ff84b180fe4780c472bf62253b172732db85d0?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/8b5523e16da5322f0f9eeef177ff84b180fe4780c472bf62253b172732db85d0?s=96&d=mm&r=g","caption":"katrinapetrovich"},"url":"https:\/\/cota.org\/cotafortimmy\/author\/katrinapetrovich\/"}]}},"_links":{"self":[{"href":"https:\/\/cota.org\/cotafortimmy\/wp-json\/wp\/v2\/posts\/224","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotafortimmy\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotafortimmy\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cota.org\/cotafortimmy\/wp-json\/wp\/v2\/users\/2525"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotafortimmy\/wp-json\/wp\/v2\/comments?post=224"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotafortimmy\/wp-json\/wp\/v2\/posts\/224\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotafortimmy\/wp-json\/wp\/v2\/media?parent=224"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}