{"id":3571,"date":"2014-08-27T00:24:11","date_gmt":"2014-08-27T00:24:11","guid":{"rendered":"https:\/\/lpfch.org\/life-after-cancer-helping-children-and-families-cope-with-long-term-effects-of-cancer-survival\/"},"modified":"2024-10-23T16:33:28","modified_gmt":"2024-10-23T16:33:28","slug":"life-after-cancer-helping-children-and-families-cope-with-long-term-effects-of-cancer-survival","status":"publish","type":"post","link":"https:\/\/lpfch.org\/tl\/impact-stories\/life-after-cancer-helping-children-and-families-cope-with-long-term-effects-of-cancer-survival\/","title":{"rendered":"Buhay Pagkatapos ng Kanser: Pagtulong sa mga Bata at Pamilya na Makayanan ang Pangmatagalang Epekto ng Pagligtas sa Kanser"},"content":{"rendered":"<p>Para kay Claire Harding ng San Mateo, ang paggamot sa kanser ay nakapagligtas ng buhay \u2013 at nakapagpabago ng buhay. Ilang araw bago ang kanyang ikasampung kaarawan, nasuri siyang may medulloblastoma, isang malignant na tumor sa utak. Matapos ang operasyon upang alisin ang tumor, anim na linggong radiation sa kanyang ulo at gulugod, at isang taon ng chemotherapy, si Claire ay ligtas na sa kanser. Mahigit 10 taon na ang nakalilipas. Iyon ay mahigit 10 taon na ang nakalilipas.<\/p>\n<p>Sa kasalukuyan, si Claire ay isang junior sa Samuel Merritt University, at nag-aaral upang maging isang nars \u2013 isang karerang pinili, aniya, na direktang resulta ng kanyang karanasan noong bata pa siya. &quot;Ang mga nars ay palaging bahagi ng aking buhay,&quot; paggunita niya.<\/p>\n<p>Sa kabila ng halos hindi pag-aaral sa ikaapat at ikalimang baitang, nanatiling napapanahon si Claire sa kanyang pag-aaral sa pamamagitan ng pag-aaral sa Packard Children&#039;s Hospital School, kung saan nakatanggap siya ng pribadong pagtuturo upang matapos ang kanyang mga takdang-aralin bawat linggo. Ngayon, sa edad na 20, bukod sa pagtanggap ng karagdagang oras para kumuha ng mga pagsusulit, wala nang ibang problema sa pag-aaral si Claire.<\/p>\n<p>Ngunit ang kanyang mga paggamot ay nag-iwan ng marka sa kanyang pisikal na kalusugan. Nagdurusa siya sa high frequency hearing loss, isang banayad na sakit sa mata, hypothyroidism, at pinsala sa nerbiyos sa kanyang mga bukung-bukong, isang kondisyong tinatawag na foot drop. Patuloy siyang regular na physical therapy, umiinom ng mga hormone supplement araw-araw, at nagsusuot ng orthotics habang nakasuot ng sapatos. Ngunit ipinagwawalang-bahala ni Claire ang tindi ng kanyang mga huling epekto, na sinasabing ang kanyang kanser ay isang biyaya na nakatago. &quot;Mas maawain na ako ngayon dahil sa aking sakit,&quot; sabi niya.<\/p>\n<p>Hindi lahat ng nakaligtas sa kanser sa mga bata ay kasingswerte ni Claire. Marami, lalo na ang mga pinakabatang pasyente o iyong mga tumatanggap ng pinakamasinsinang therapy, ay mayroong mas matinding kakulangan sa pag-iisip at mga limitasyon sa pisikal pagkatapos ng paggamot. Sa kasalukuyan, ang mga mananaliksik at clinician sa Packard Children&#039;s ay walang sawang nagtatrabaho upang mabawasan ang mga malalang epektong ito sa mga huling yugto.<\/p>\n<h2>Ang Paggamot sa Tightrope<\/h2>\n<p>Ang mga nakaligtas sa kanser ay bumuti nang husto habang sinimulan ng mga oncologist na pagsamahin ang mga magagamit na therapy at dagdagan ang mga dosis. Ngunit ang tagumpay na iyon ay may kapalit. Mahigit 70 porsyento ng mga batang sumasailalim sa operasyon, radiation, o chemotherapy ay dumaranas ng mga malalang kondisyong medikal kasunod ng therapy, isang penomenong tinatawag na late effects.<\/p>\n<p>\u201cBagama&#039;t lubos kaming natuwa sa pagtaas ng bilang ng mga nakaligtas, malinaw na may kapalit ito,\u201d sabi ni Harvey Cohen, MD, PhD, ang Propesor ng Pamilyang Deborah E. Addicott-John A. Kriewall at Elizabeth A. Haehl sa Pediatrics. \u201cTinatawag ko itong paghihirap ng tagumpay \u2013 napagaling namin ang bata mula sa kanser, ngunit ito ay isang paghihirap dahil sa mga huling epekto nito.\u201d<\/p>\n<p>Ang paggamot sa kanser ay maaaring makapinsala sa mga organo at buto; magbago sa mga tungkulin, paglaki, pag-unlad, mood, damdamin, at kilos ng isang bata; magdulot ng mga kakulangan sa pag-iisip, pagkatuto, at memorya; at magpataas ng panganib ng mga pangalawang kanser.<\/p>\n<p>&quot;Maraming pag-unlad ang naganap sa nakalipas na dekada upang mapakinabangan ang kaligtasan habang binabawasan ang toxicity,&quot; sabi ni Michelle Monje-Deisseroth, MD, PhD, assistant professor ng neurology at neurological sciences.<\/p>\n<p>Isa sa mga pangunahing pamamaraan ay tinatawag na risk adaptive therapy \u2013 isang pagtatangka na mas tumpak na masukat ang mga risk profile ng mga indibidwal na pasyente, at pagkatapos ay gamutin sila nang naaayon. Maaaring mabawasan ng mga clinician ang toxicity ng therapy sa mga pasyenteng may mas mababang panganib, at ibibigay lamang ang pinakamasinsinang therapy sa mga batang mas malamang na mamatay mula sa kanilang sakit.<\/p>\n<p>Sa bawat kaso, ang mga magulang ay tinuturuan tungkol sa mga potensyal na huling epekto at may boses sa paggamot na natatanggap ng kanilang anak.<\/p>\n<h2>Pangangalaga na Nakasentro sa Pamilya<\/h2>\n<p>Nang dalhin nina Rosemary at Geoff Walls ng Napa ang kanilang 22-buwang gulang na anak na lalaki, si Luc, sa Packard Children&#039;s noong 2006, ilang linggo silang naglabas-masok sa mga klinika ng doktor sa kasabikan kung bakit bumalik sa paggapang ang kanilang anak at palaging nagsusuka. Ilang minuto pa lamang pagpasok sa emergency room ng Stanford, tiningnan na ng mga Walls ang mga resulta mula sa isang portable CT scan, at sa unang pagkakataon ay nakita nila ang tumor na kasinglaki ng bola ng golf sa utak ng kanilang anak.<\/p>\n<p>Si Luc ay may hindi tipikal na teratoid rhabdoid tumor, na may wala pang 10 porsyentong survival rate. \u201cIto na talaga ang huling tumor na gugustuhing marinig ng sinumang magulang,\u201d sabi ng oncologist ni Luc na si Paul Fisher, MD, ang Beirne Family Professor ng<\/p>\n<h2>Neuro-Oncology ng mga Bata.<\/h2>\n<p>Dahil sa murang edad ni Luc, ang radiation sa buong utak ay magkakaroon ng mapaminsalang epekto sa pag-iisip. Ngunit sapat na ang pananaliksik na ginawa ng mga Wall para malaman na hindi sapat ang chemotherapy lamang. \u201cAlam namin ang mga sitwasyong kailangan naming harapin: isang posibleng batang may kapansanan, o walang anak,\u201d paggunita ni Geoff. At itinulak nila ang radiation therapy pagkatapos ng operasyon.<\/p>\n<p>Ang tumor ni Luc ay nasa ibabang bahagi ng kaniyang utak, kaya ginamot siya gamit ang conformal radiation sa apektadong bahagi lamang, hindi sa buong ulo niya. Ang isang buwang pang-araw-araw na radiation pulses ay sinundan ng pitong buwang chemotherapy, kabilang ang mga bagong gamot na direktang inilalagay sa kaniyang spinal fluid.<\/p>\n<p>Ngayon, limang taon na ang lumipas, nananatiling ligtas si Luc sa kanser. Bagama&#039;t ganap na bingi ang kaliwang tainga niya at may suot na hearing aid sa kanan, bilingual siya, mahusay sa paaralan, at nagsisimulang umunlad sa pakikisalamuha. Sa katunayan, sabi ng kanyang ama, karamihan sa kanyang mga kaibigan at kanilang mga magulang ay hindi man lang alam ang kanyang kakaibang medikal na kasaysayan.<\/p>\n<p>Ang paggawa ng mga mahihirap na desisyon sa paggamot ay isang gawain ng grupo sa Packard Children&#039;s. Ang ospital ay kabilang sa isang pambansang samahan ng mahigit 200 ospital ng mga bata na nagbabahagi ng pinakabagong impormasyon tungkol sa mga protocol ng paggamot para sa mga pinakakaraniwang kanser sa mga bata. &quot;Sa pamamagitan ng ibinahaging kaalamang ito,&quot; sabi ni Cohen, &quot;natutunan namin kung aling mga gamot ang gagamitin at kung paano gamitin ang mga ito sa pinakaligtas na paraan na posible.&quot;<\/p>\n<p>Para sa mga batang nasuring may mas bihirang kanser, ang Packard Pediatric Tumor Board \u2013 isang grupo ng mga pediatric oncologist, radiation oncologist, surgeon, radiologist, at pathologist \u2013 ay nagpupulong linggu-linggo upang repasuhin ang bawat kaso at bumuo ng plano sa paggamot. &quot;May pakinabang kayo sa pagkakaroon ng maraming isip dito sa Packard,&quot; dagdag ni Cohen.<\/p>\n<h2>Mga Pasyente Panghabambuhay<\/h2>\n<p>Sina Claire at Luc ay dalawa lamang sa mahigit 275,000 na nakaligtas sa kanser sa mga bata sa Estados Unidos, mga pasyenteng may kakaibang medikal na kasaysayan na tuluyang nabago ng kanilang paggamot. Sa Packard Children&#039;s, ang mga nakaligtas sa kanser sa mga bata ay sinusundan ng kanilang neuro-oncology team o sa Health After Therapy (HAT) clinic.<\/p>\n<p>\u201cKailangan pa rin ng mga bata ang pangunahing pangangalaga,\u201d sabi ni Fisher. \u201cNgunit sa pagharap sa mas malalaking isyu sa kalusugan na direktang resulta ng kanilang mga therapy sa kanser, kailangan natin itong makita.\u201d<\/p>\n<p>Sa mga taunang pagbisita ng pasyente, binibigyang-diin ng HAT clinical director na si Arun Rangaswami, MD, at ng nurse practitioner na si Verna Mitchell, NP, ang kagalingan. Sa loob ng 60 hanggang 90 minutong appointment, kumukuha sila ng medical at social history at isinasapersonal ang kanilang follow-up batay sa uri ng kanser na naranasan ng bata, ang uri ng paggamot na natanggap, mga genetic factor, at pangkalahatang kalusugan at mga gawi. Pagkatapos, makakatanggap ang mga pasyente ng timeline ng follow-up care, lab, at mga surveillance test na kakailanganin nila sa patuloy na batayan.<\/p>\n<p>Ang mga batang nahihirapan sa paaralan ay awtomatikong isinasangguni sa programang Hospital Educational Advocacy Liaisons (HEAL), sa ilalim ng pamamahala ni Jeanne Kane. Ang mga kawani ng HEAL ay nagtataguyod para sa mga batang mahina ang kalusugan, naglalakbay sa mga paaralan upang turuan ang mga guro at mag-aaral tungkol sa mga huling epekto ng kanser, at dumadalo sa mga pulong sa pagpaplano at pagtataguyod kasama ang mga magulang at tagapagturo.<\/p>\n<p>Ang mga dedikadong neuro-psychologist at mga espesyalista sa edukasyon ng HEAL ay nagsasagawa ng mga pagtatasa sa mga nakaligtas sa kanser sa mga batang may kapansanan sa pagkatuto upang masuri ang mga kapansanan sa pagkatuto, at gagabayan ang anumang kinakailangang akomodasyon sa paaralan o mga potensyal na sintomas na therapy. Halimbawa, ang mga stimulant tulad ng methylphenidate (Ritalin) ay makakatulong sa mga pasyenteng may kapansanan sa pagproseso ng impormasyon, konsentrasyon, o mga kahirapan sa atensyon, at ang ilang mga gamot sa dementia ay makakatulong sa memory dysfunction.<\/p>\n<p>Binigyang-diin ni Rangaswami ang kahalagahan ng pagsubaybay sa mga nakaligtas sa kanser habang buhay. \u201cNatutunan namin na ang kaligtasan sa kanser ay higit pa sa isang kuwento ng kasiyahan,\u201d aniya. \u201cAng bawat pagpili na ginagawa namin bilang mga tagapagbigay ng pangangalaga ay may malalim na epekto sa aming mga pasyente at kanilang mga pamilya.\u201d<\/p>","protected":false},"excerpt":{"rendered":"<p>Para kay Claire Harding ng San Mateo, ang paggamot sa kanser ay nagliligtas ng buhay - at nagbabago ng buhay. Ilang araw bago ang kanyang ikasampung kaarawan, na-diagnose siyang may\u2026<\/p>","protected":false},"author":17,"featured_media":3572,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[148,22],"class_list":["post-3571","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-in-the-news","category-patient-stories","health_topic-pediatric-cancer"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Life After Cancer: Helping Children and Families Cope with Long-Term Effects of Cancer   Survival - Lucile Packard Foundation for Children&#039;s Health<\/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:\/\/lpfch.org\/tl\/impact-stories\/life-after-cancer-helping-children-and-families-cope-with-long-term-effects-of-cancer-survival\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Life After Cancer: Helping Children and Families Cope with Long-Term Effects of Cancer   Survival\" \/>\n<meta property=\"og:description\" content=\"For Claire Harding of San Mateo, cancer treatment was life saving \u2013 and life changing. 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