Ko te rā whakamutunga o Pēpuere o ia tau ko te Rā o te Ao mō ngā Mate Onge. E ai ki tōna ingoa, ko ngā mate onge e pā ana ki ngā mate he iti rawa te auau. E ai ki te whakamāramatanga a te WHO, ko ngā mate onge he 0.65 ‰ ~ 1 ‰ o te taupori katoa. I roto i ngā mate onge, he iti ake te ōwehenga o ngā pukupuku onge, ā, ko ngā pukupuku he iti iho i te 6/100000 ka taea te kī he "pukupuku onge".
Kāore i roa kua pahure ake nei, i whiwhi te Pokapū Matepukupuku Kore-Whakaekenga a FasterCures i tētahi tauira kāreti 21-tau te pakeke, a Xiaoxiao, he pukupuku kino katoa e 25 henimita te rahi kei roto i tōna tinana. He mate onge tēnei e kiia nei ko te "Ewing's sarcoma", ā, ko te nuinga o ngā tūroro kei waenga i te 10 me te 30 tau te pakeke. Nā te mea he nui rawa te pukupuku, he kino hoki, i whakatau tōna whānau ki te haere mai ki Beijing ki te rapu rongoā.
I te tau 2019, he maha ngā wā ka pāngia te kotiro 18-tau te pakeke e te mamae o te uma me te tuara, ā, ka pāngia hoki e te pēpeke. I haria ia e tōna whānau ki te hōhipera kia tirohia, ā, kāore he āhua rerekē i kitea. I whakaaro ia kua hoha pea ia ki āna akoranga kura tuarua, nō reira i pania e ia he pāreti, ā, te āhua nei kua marino. I muri i tērā, ka waiho te take ki muri.
I te tau i muri mai, ka pāngia a Xiaoxiao e te mamae ngū, ā, i kitea tōna mate pukupuku a Ewing i roto i ngā whakamātautau maha. He maha ngā hōhipera i tūtohu kia pokangahia i muri i te chemotherapy. "Kāore mātou i te māia, ā, kāore hoki i te maia ki te whakaora i tēnei mate," te kī pono a Xiaoxiao. I tino wehi ia i te chemotherapy me te pokanga, ā, i te mutunga ka whiriwhiri ia i te ārai mate pūtau me te maimoatanga rongoā tuku iho a Haina.
I te tau 2021, i whakaatuhia e te tirotiro anō kua nui haere te pukupuku ki te 25 henimita, ā, ko te mamae o te tuara matau o raro he kino rawa atu i mua. Ka tīmata a Xiaoxiao ki te tango i te rongoā whakamamae ibuprofen hei whakamamae i te mamae.
Ki te kore he maimoatanga whai hua, ka tino morearea te āhua o Xiaoxiao, me totohu te ngākau o te whānau kia ora ai. Mā te manukanuka mō te mate ka riro atu a Xiaoxiao i ngā wā katoa.
"He aha tēnei mate onge e pā mai ana ki a tātou?"
E ai ki te kōrero, tera pea ka puta he awha i te rangi mārama; engari ko te mutunga iho o te tangata he mea kore e mārama, pērā i te rangi.
Kāore e taea e tetahi te matapae i te heke mai, ā, kāore hoki e taea e tetahi te matapae i ngā mea ka pā ki tōna tinana. Engari he tika te ora mō ia ora.
Kaua ngā putiputi o taua tau e maroke wawe rawa!
I te noho pōuri me te pouri, ka tae mai a Xiaoxiao ki Beijing, ā, ka whiriwhiria e ia tētahi maimoatanga kore-whakaeke.
Kua roa te wā e pā ana tēnei mate ki te tango i te wheua mā te whakamahi i te ultrasound, ā, kua angitu te mahi whakaora i ngā peka mō ngā tūroro he pukupuku wheua e hiahia ana kia tapahia, he tūroro taitamariki ake i a Xiaoxiao.
I oti te pokanga i te wā tika, nā te mea i oti te pokanga i roto i te āhua o te ara tonu, i tangi mārie a Xiaoxiao, i tangi rānei mō te hē o te aituā, i whakawhetai rānei ki te Atua mō te whakatuwheratanga i tētahi atu tatau mōna. Ko tana tangi te āhua nei he tukunga ora, engari he waimarie, he pai te hua o te pokanga i taua rā, ā, i puta te tumanako mō te ora.
E ai ki ngā tākuta, he tino onge te sarcoma kiko ngohengohe, he iti iho i te 1/100,000 te maha o ngā mate hou i Haina. I raro iho i te 40,000 ngā mate hou i ia tau. Kia horapa te mate ki te pūtau, ko te roanga o te oranga toharite he tata ki te kotahi tau.
"Ka puta ngā sarcoma kiko ngohengohe i ngā whekau katoa o te tinana, tae atu ki te kiri."
I kī ngā tākuta he mea huna te tīmatanga o te mate, ā, ka puta noa ngā tohu e rite ana ina pēhia te puku ki ētahi atu okana e karapoti ana. Hei tauira, kei te rongoatia tētahi tūroro he mate pukupuku kiko ngohengohe o te ihu i tēnei wā i te wāhanga mate onge. Nā te mea kāore anō kia ora te ihu pupū mō te wā roa, i kitea te puku i te whakamātautau CT.
"Heoi, ehara ngā tohu e rite ana i te mea noa, pērā i te ihu pupuhi, ko te tauhohenga tuatahi a te katoa he makariri, ā, kāore rawa tetahi e whakaaro ki te pukupuku, ko te tikanga ahakoa kua whakaatuhia ngā tohu, kāore pea te tūroro e toro atu ki te tākuta i te wā tika."
Ko te roa o te oranga o te sarcoma kiko ngohengohe e pā ana ki te wāhanga o te mate. Kia puta te horapa o te wheua, arā, he tōmuri, ko te roa o te oranga toharite he tata ki te kotahi tau.
I kī a Chen Qian, te tākuta matua o te FasterCures Center, ko te nuinga o ngā sarcoma kiko ngohengohe ka puta i ngā taiohi, nā te mea i tēnei wā, kei roto ngā uaua me ngā wheua i te wā o te tipu me te whanaketanga nui, ā, ka puta pea ētahi hyperplasia rerekē i roto i te tukanga tere o te tipu pūtau.
Ko ētahi he hyperplasia pai, he whara mua-matepukupuku rānei i te tīmatanga, engari ki te kore e arohia, e rongoatia rānei i te wā tika mō ngā take maha, ka arahi pea ki te sarcoma kiko ngohengohe.
"I te nuinga o te wā, he nui ake te tere o te whakaora i te pukupuku o ngā taiohi i tērā o ngā pakeke, e ahu mai ana i te kitenga wawe, te tautuhi wawe me te maimoatanga wawe, engari he tokomaha ngā taiohi e kite ana kua roa rawa te pukupuku, ā, ka ngaro te whai wāhi ki te whakaora tere, nō reira ahakoa pēhea, he mea tino nui ngā 'wawe' e toru."
I whakatūpato a Chen Qian he tokomaha ngā kaumātua me ngā kaumātua kua taunga ki te tirotiro tinana i ia wā, engari he tokomaha tonu ngā rangatahi kāore anō kia pērā.
"He maha ngā mātua e pōhēhē ana i muri i te tākutatanga o ā rātou tamariki he pukupuku. Ka whakarite te kura i tētahi whakamātautau tinana i ia tau, nō reira he aha rātou te kore ai e mōhio?"
He mea tino taketake ngā whakamātautau tinana o te kura, inaa, ahakoa te whakamātautau tinana ā-tau a te wāhanga, ka taea noa te tirotiro whānui mēnā ka kitea he rerekē, kātahi ka kitea te raruraru mā te tirotiro poto."
Nō reira, ahakoa he mātua taiohi rātou, he rangatahi rānei kei roto i ō rātou tau rua tekau, toru tekau rānei, me aro nui rātou ki te tirotiro tinana, kaua e tango i te āhua papaku, engari me toro atu ki te tākuta hei whiriwhiri i ngā kaupapa i roto i te huarahi whai take, whānui hoki.
Wā tuku: Maehe-09-2023