{"id":472157,"date":"2025-12-26T05:20:31","date_gmt":"2025-12-26T05:20:31","guid":{"rendered":"https:\/\/www.europesays.com\/us\/472157\/"},"modified":"2025-12-26T05:20:31","modified_gmt":"2025-12-26T05:20:31","slug":"a-ct-child-miraculously-survived-cancer-so-severe-it-caused-a-stroke","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/us\/472157\/","title":{"rendered":"A CT child ‘miraculously’ survived cancer so severe it caused a stroke"},"content":{"rendered":"

Eight weeks after being hospitalized for treatment of a life-threatening cancer Henry Neligon\u2019s parents explained to him what his diagnosis was and he immediately thought about how he could help other children in similar situations.<\/p>\n

\u201cI wanted to help kids with cancer,\u201d said the 8-year-old Madison resident, at home and currently in remission.<\/p>\n

\u201cWe should have a bake sale,\u201d his mother, Jessica Neligon, recalled him saying to her as he waited at Children\u2019s Hospital of Philadelphia<\/a>, or CHOP, for a stem cell transplant.<\/p>\n

Henry Neligon was admitted to Yale New Haven Children\u2019s Hospital<\/a>, Nov. 20, 2024, with what presented like a stomach flu. Blood tests and a subsequent bone marrow biopsy confirmed he had Juvenile Myelomonocytic Leukemia<\/a>, or JMML, \u201ca rare leukemia that occurs approximately ten times less frequently than acute myeloid leukemia in children. The annual incidence is about 1 to 2 cases per 1 million people,\u201d according to the National Cancer Institute.\u00a0<\/a><\/p>\n

Ten days later, the then 7-year-old\u2019s \u201cbody went into what they call a blast storm,\u201d said Jessica Neligon.<\/p>\n

\u201cHis cancer onset was so severe and sudden and aggressive, he had a stroke,\u201d she said. \u201cHe actually was unconscious and on every single machine you could fathom.\u201d<\/p>\n

\u201cHe was completely unresponsive for days in the PICU,\u201d she said. \u201cHe was on full life support. He was on a full breathing machine.\u201d<\/p>\n

\"HenryHenry Neligon smiles riding in the fire truck in the Santa parade in Madison on Saturday, Dec. 6. (Contributed photo)<\/p>\n

\u201cAll of this was happening,\u201d she said. \u201cYou could not have had a sicker kid, but he somehow pushed through and we credit LEGOs to that.\u201d<\/p>\n

She said after he was out of the PICU, after the stroke, he had to learn to walk and talk again.<\/p>\n

\u201cHe was in such a state, and he didn\u2019t smile for a very long time, his brain was waking up again because he had gone through so much trauma,\u201d she said. \u201cThe only thing that actually gave him motivation after all that initial horror, was LEGOs.\u201d<\/p>\n

\u201cHe got his dexterity back because of LEGOs,\u201d she said.<\/p>\n

Jessica Neligon remembers one of the doctors said, \u201cit was a small miracle that he made it alive out of the PICU.\u201d<\/p>\n

In January, Henry was taken to CHOP for a stem cell transplant.<\/p>\n

\u201cFortunately, and miraculously, he responded incredibly well to chemo, and he survived and went into remission but then needed a stem cell transplant because JMML has such a high relapse rate,\u201d Jessica Neligon said in a text. \u201cThe transplant was his only chance at a \u2018cure.\u2019\u201d<\/p>\n

The family, including 4-year-old Willow Neligon, moved to Philadelphia for 8 months while Henry received both inpatient and outpatient medical treatment at CHOP.<\/p>\n

It was while he was an inpatient at CHOP that this second grader at the former Jeffrey Elementary School in Madison took to his mother\u2019s Instagram account, @thelegohenry, and made the announcement about the bake sale.<\/p>\n

\u201cI started a bake sale at Jeffrey School and it\u2019s happening tomorrow so bake something or donate money,\u201d he said, on Feb. 10. \u201cIf you want to make kids happy you should do this, because I will be happy if you do.\u201d<\/p>\n

The baked goods poured in, followed by eager customers.<\/p>\n

The sales raised $17,000 and when combined with an $8,000 private donation, Henry\u2019s bake sale raised $24,000.<\/p>\n

Of this, $2,000 was donated to the Toy Closet Program<\/a>, started in 1993 by WTNH News 8 anchor Ann Nyberg.<\/p>\n

The remaining $22,000 was used to fund the newly created Bedside Builders program within the Yale New Haven Children\u2019s Hospital Child Life Services.<\/p>\n

\n

There\u2019s no \u2018poking or prodding\u2019 by doctors allowed in this room at a CT hospital.<\/a><\/p>\n<\/blockquote>\n

\u201cHe was one of those kids that would do LEGO whenever he could possibly do it, so when we had this opportunity, when the family donated, we decided to utilize it for a program that could reach more kids and have that same effect for them, as well,\u201d said Toni Crowell-Petrungaro, Child Life program director.<\/p>\n

The specific program had been on the department\u2019s wish list and that, combined with Henry\u2019s passion for all things LEGO was the impetus to purchase a large rolling toolbox and fill the multiple drawers with free building, color-sorted LEGOS and wheel it from bedside to bedside to engage patients in LEGO building.<\/p>\n

\"HenryHenry Neligon is all smiles as he checks out Yale Haven Children\u2019s Hospital Child Life\u2019s new program, Bedside Builders, with Tyler Mahoney, Child Life gaming and technology specialist. (Contributed photo)<\/p>\n

\u201cKids can build whatever they want and however they feel that day,\u201d said Tyler Mahoney, gaming and technology specialist at Child Life.<\/p>\n

This program, said Mahoney, is \u201ca little more personal and a little more one on one\u201d than building with a LEGO kit.<\/p>\n

\u201cIt brings a little bit of normalcy to a hospital stay and a little sense of community,\u201d he said.<\/p>\n

Crowell-Petrungaro said LEGO<\/a> building allows children to \u201cbuild up their stem skills that they would be doing at school by building and creating and constructing things.<\/p>\n

\u201cSo, we\u2019re trying to help build up their skills, as well, too and maintain some of that while they\u2019re going through the treatment,\u201d she said.<\/p>\n

\"HenryHenry Neligon, from his hospital bed at Children\u2019s Hospital of Philadelphia, zooming live with friends during his Jeffrey School bake sale, to raise money for children with cancer. (Contributed photo)<\/p>\n

\u201cI\u2019m super happy we funded the LEGO program that Yale got off the ground,\u201d said Henry Neligon.<\/p>\n

On the day of the bake sale the second grader was there, at Jeffrey School, via zoom.<\/p>\n

\u201cI just feel blessed that I was a part of the process, the minimal way that I was,\u201d said Becky Frost, former principal of Jeffrey School and current principal of Madison\u2019s Neck River Elementary School.<\/p>\n

\u201cIt was literally Henry\u2019s idea, it was the support of the community, our PTO that really kind of rallied everybody, in Henry\u2019s name, to make it happen,\u201d she said. \u201cIt was just a joy to be a part of it and watch it all unfold and support it.\u201d<\/p>\n

The family felt the love from the community.<\/p>\n

\u201cWe are so grateful,\u201d said Jessica Neligon. \u201cHe was sent gifts; he was sent cards. The kids in his school were sending so many cards, and I hung it all over his room.\u201d<\/p>\n

\u201cWe just have boxes and boxes of cards,\u201d said her husband, Chris Neligon.<\/p>\n

These parents believe their son fought so hard \u201cbecause of his love for LEGOs, the love that he felt and the support that he felt around him.\u201d<\/p>\n

A request for comment was sent to the LEGOS company.<\/p>\n

Being there for their son was important, Jessica Neligon said. He was never alone when hospitalized.<\/p>\n

\u201cYou summon every ounce of your being and every hardship you\u2019ve ever been through to be there for your child,\u201d she said.<\/p>\n

\u201cIt was a very, very, very, very close call and very scary,\u201d she said, sitting in her family dining room, the table covered in LEGOs.<\/p>\n

\"Chris,Chris, Jessica, Willow and Henry Neligon at Children\u2019s Hospital of Philadelphia. (Contributed photo)<\/p>\n

\u201cI went through all the stages of grief,\u201d she said. \u201cThe doctors were saying that he had cancer and I pushed back and I said, \u2018No, that\u2019s not possible. He can\u2019t have cancer. Are you sure you didn\u2019t look at this? Are you sure you\u2019re mistaking it for something else?\u201d<\/p>\n

\u201cSo, the denial and then the absolute sobbing,\u201d she said. \u201cEverything that you can imagine, but then you have to be strong and not do that in front of your child.\u201d<\/p>\n

Chris Neligon said it\u2019s hard to believe what the family has been through and his son is home and cancer free.<\/p>\n

\u201cLiterally, on Dec. 9, last year, I didn\u2019t think we were going to be here,\u201d he said. \u201cIt was so bad. He was pretty much on life support.\u201d<\/p>\n

\u201cNow to be home, it\u2019s just incredible,\u201d he said. \u201cFor me, it\u2019s incredible, but it doesn\u2019t feel real in a way, still.\u201d<\/p>\n

Child Life Services at both Yale and CHOP were a great source of comfort for both the family and Henry Neligon and \u201cpart of the reason, in my opinion, Henry thrived,\u201d said Jessica Neligon.<\/p>\n

She said their role is \u201cto literally hold hands with the child and walk them through each step, help prepare them for what they\u2019re going through and be their friend and mentor.\u201d<\/p>\n

\u201cIt was a relief to me because I didn\u2019t know what was going on all the time\u2026it was a load off of me, as a parent, just to feel that there was this advocate, this person for my son and I can take a breath,\u201d she said.<\/p>\n

Crowell-Petrungaro said this is the exact reason they exist.<\/p>\n

\u201cWe really strive to help kids still be kids when they\u2019re in the hospital and we know it takes more than medicine to help them feel better and get better and just have a more positive outlook, so we integrate play into everything,\u201d she said.<\/p>\n

\u201cWe have kids that come back and forth a lot, to the hospital, and they will remember, \u2018Oh, I\u2019m coming back to play LEGOs\u2019 not \u2018I\u2019m coming back to get my chemo treatment,\u2019\u201d she said.<\/p>\n

\u201cReally helping that be the last thing, positive memories, of what they had while they\u2019re undergoing through their treatment or their reasons for being hospitalized,\u201d she said.<\/p>\n

Jessica Neligon said the family is thrilled about the new program and hopes that someday it can be in more hospitals.<\/p>\n

This whole program, we\u2019re so proud of it,\u201d said Jessica Neligon. \u201cWe\u2019re so proud of him. It was his brainchild.\u201d<\/p>\n

Sarah Kyrcz can be reached at suzipage1@aol.com<\/p>\n","protected":false},"excerpt":{"rendered":"Eight weeks after being hospitalized for treatment of a life-threatening cancer Henry Neligon\u2019s parents explained to him what…\n","protected":false},"author":3,"featured_media":472158,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[35],"tags":[214206,235,214207,37448,210,1141,1142,214205,251,68481,29917,138885,214208,68936,25249,67,132,68,214204],"class_list":{"0":"post-472157","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health-care","8":"tag-bake-sale","9":"tag-cancer","10":"tag-child-life-services","11":"tag-childrens-hospital-of-philadelphia","12":"tag-health","13":"tag-health-care","14":"tag-healthcare","15":"tag-juvenile-myelomonocytic-leukemia","16":"tag-kids","17":"tag-legos","18":"tag-madison","19":"tag-miracle","20":"tag-neck-river-elementary-school","21":"tag-shoreline","22":"tag-toys","23":"tag-united-states","24":"tag-unitedstates","25":"tag-us","26":"tag-yale-new-haven-childrens-hospital"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@us\/115784190052212211","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/472157","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/comments?post=472157"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/472157\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media\/472158"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media?parent=472157"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/categories?post=472157"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/tags?post=472157"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}