Kei te pāngia tāu tamaiti e te mate pukupuku Neuroblastoma? Kaua e manukanuka, me kōrero noa iho tātou mō tēnei!

He puku, he kaki rānei tō tamaiti, he rite ki te puku? He marō, he kikorangi rānei kei te taha o ōna kanohi, me te mea kua pāngia? He tino mataku, he āwangawanga hoki ia whaea, ia pāpā rānei ina kite i tētahi mea pēnei. He mea noa tēnei. Engari i ētahi wā, he tohu ēnei o tētahi momo mate pukupuku e kiia nei ko te 'Neuroblastoma', e pā ana ki ngā tamariki nohinohi. Nō reira, i tēnei rā, me kōrero tātou mō tēnei mea me te kore wehi, me te whakamārama mārama i ngā mea katoa e hiahia ana koe ki te mōhio.

He aha rawa te Neuroblastoma?

He kupu ngāwari noa iho, ko te Neuroblastoma he momo mate pukupuku e puta ana i roto i te pūnaha io o ngā tamariki nohinohi me ngā pēpi. Ka hangaia ngā io o tō tātou tinana mai i ngā pūtau io kāore anō kia pakari e kiia nei ko ngā 'neuroblast'. Ka puta te mate pukupuku Neuroblastoma i roto i ēnei pūtau io kāore anō kia pakari.

I te nuinga o te wā, ka tīmata tēnei mate pukupuku i roto i ngā pūtau io kāore anō kia pakari i roto i ngā repe adrenal, arā, ngā repe iti e rua kei runga ake i ngā whatukuhu. Ka whakaputahia e ēnei repe ngā homoni e whakahaere ana i ngā mea maha i roto i tō tātou tinana kāore tātou e mōhio kei te tupu, pērā i te tere o te manawa, te toto totoka, te manawa, me te nakunaku. Haunga tēnei, ka tīmata anō hoki tēnei mate pukupuku i roto i ngā kiko io i roto i te tuaiwi, te puku, te uma, te kaki rānei. I roto i te wā, ka horapa ēnei pūtau mate pukupuku ki ētahi atu wāhanga o te tinana.

Ko te matapae mō te tamaiti e pangia ana e tēnei mate ka whakawhirinaki ki ētahi āhuatanga, tae atu ki te wāhi i puta ai te mate pukupuku, te tau o te tamaiti, me te wāhanga (te horapa o te mate pukupuku).

He mate tino noa tēnei?

Kāo, he mate pukupuku tino onge te Neuroblastoma. Engari ko te mea nui koia te momo mate pukupuku tino kitea i roto i ngā pēpi. Ko te nuinga o te wā ka pā tēnei mate ki ngā tamariki kei raro iho i te 5 tau te pakeke. I ētahi wā ka pā mai tēnei mate pukupuku ahakoa kei roto tonu te tamaiti i te kōpū. He tino onge te kite i tēnei mate pukupuku i roto i ngā tamariki neke atu i te 10 tau te pakeke.

Me pēhea te whakarōpūtanga o ngā wāhanga o te Neuroblastoma?

Ki te whakaūtia kei tō tamaiti tēnei mate, ka tirohia e ngā tākuta te horapa o te mate pukupuku me te tere o tōna tipu. Mā tēnei ka whakatauhia te 'taumata mōrearea' o te mate. Ko reira anake ka whiriwhiria ai te kōwhiringa maimoatanga tino tika mō te tamaiti.

I mua, i whakatauhia tēnei wāhanga mā te tirotiro i te nui o te mate pukupuku e toe ana i roto i te tinana i muri i te pokanga. Engari i nāianei, ka whakamahia e ngā tākuta tētahi tikanga kua whakaaetia e te ao. I roto i tēnei, ka whakatauhia te wāhanga mā te tirotiro i te tawhiti o te horapa o te mate pukupuku, i runga i ngā matawai (pēnei i te `CT scan`, `MRI` rānei). Kia mārama tātou ki ēnei wāhanga i roto i ngā kupu māmā.

He aha i puta ai tēnei momo mate pukupuku?

Ko te take matua mō tēnei, ko ngā pūtau io kāore anō kia pakari ('neuroblasts') i kōrerotia e tātou i mua ake nei ka tipu haere, kāore e taea te whakahaere. Ina puta he whakarerekētanga ira i roto i aua pūtau, ka tīmata aua pūtau ki te wehewehe me te tipu rerekē. Ko ngā pūtau e kohia ana i tēnei ara ka hanga he pukupuku. Kāore anō kia mōhiotia e ngā tākuta te tino take o tēnei whakarerekētanga ira.

Heoi, ki te mea kua pāngia tetahi o te whānau e te Neuroblastoma i mua, he iti noa te tūponotanga ka pāngia te tamaiti e tēnei mate. Engari he tino onge. Waihoki, ko ngā tamariki i whānau mai me ētahi atu āhuatanga whānau kāore i te tino tika, he nui ake te tūponotanga ka pāngia e tēnei mate.

He aha ngā tohu o tēnei mate?

He rerekē ngā tohu o te neuroblastoma. Tērā pea ka tīmata pōturi ētahi. Ka whakawhirinaki ēnei tohu ki te wāhi o te pukupuku me te wāhanga o te mate. I te nuinga o te wā, i te wā e puta mai ai ngā tohu, kua horapa kē te mate pukupuku ki ētahi atu wāhanga o te tinana.

Anei ētahi tohu noa:

• Puku: He puku e kitea ana i te kaki, i te uma, i te puku, i te hope rānei. I roto i ngā pēpi, ka kitea pea ētahi puku kikorangi, papura rānei i raro i te kiri.
• Kanohi: He kanohi e puta whakamua ana, he pango/kikorangi te taha o ngā kanohi, me te mea kua maru.
• Te mamae o te puku: Te korere, te mate kōroke, te mamae o te puku, te kore hiahia kai.
• Ngenge me te mā: Ngenge tonu, maremare, kirika. Kiri mā. Nā te anemia tēnei, arā, he hekenga o ngā toto whero.
• Pupuhi: Kua pupuhi te puku, ā, kua mamae.
• Te uaua ki te manawa: Ina koa mō ngā pēpi nohinohi.
• Ngoikore: Te ngoikore o ngā waewae me ngā waewae, te uaua ki te haere, te pararutiki rānei.

I te whanaketanga o te mate, ka puta pea ēnei tohu:

• Te toto toto tiketike me te tere o te ngakau.
• Te mamae o ngā wheua, te tuara, ngā waewae rānei.
• Ngā raruraru ki te taurite me te nekehanga o te tinana.
• Ngā nekehanga kanohi tere, kore e taea te whakahaere.
• He āhuatanga e kiia nei ko te mate a Horner, e tohuhia ana e te hekenga o ngā kamo i te taha kotahi o te mata, he iti ngā kamo, me te hekenga o te werawera.

Me pēhea te tautuhi a ngā tākuta i tēnei mate?

He maha ngā wā ka kitea tēnei mate i roto i ngā tamariki kei raro iho i te 5 tau te pakeke. I ētahi wā, ka kitea tonutia tēnei puku i te wā e tirotirohia ana te pēpi mā te ultrasound i a ia e noho tonu ana i roto i te kōpū.

Ka whakahaerehia e tō tākuta ētahi whakamātautau hei whakaū i te mate.

Whakamātautau Tinana

Tuatahi, ka tirotirohia te tamaiti e te tākuta. Ka tirohia e rātou mēnā he puku me ētahi atu āhuatanga rerekē. Ka whakahaerehia hoki e rātou he whakamātautau io hei tirotiro i te mahi a te pūnaha io, ngā urupare, me te taunga o ngā hononga.

Ngā Whakamātautau Toto me te Mimi

Kei roto i ēnei whakamātautau he tatau toto katoa (CBC) hei tirotiro mō te anemia me ētahi atu hapa toto, me te tirotiro i ngā taumata o ētahi matū e kohia ana i roto i te toto me te mimi ina kitea te mate pukupuku.

Te koiora

Ko te mahi i konei he tango i tētahi wahi kiko iti rawa mai i te puku ka tirotirohia i raro i te karu hiko. Koinei te mea e tino mōhio ai he Neuroblastoma. Ka tirohia hoki mēnā he rerekētanga motuhake kei roto i ngā chromosomes o ngā pūtau matepukupuku i roto i tēnei wahi kiko. He mea tino nui aua mōhiohio hei whakatau i te taumata mōrearea o te tamaiti me te mahere maimoatanga.

Te Kohikohi i te Huero Wheua

Ko te hinu wheua te wāhanga hautai i roto i ō tātou wheua nunui. Koinei te wāhi e hangaia ai ō tātou pūtau toto. Ka mahia tēnei whakamātautau hei tirotiro mēnā kua horapa te mate pukupuku ki te hinu wheua.

Ngā Matawai Whakaahua

He maha ngā momo matawai ka mahia hei tirotiro i te wāhi kei reira te mate pukupuku, tōna rahi, me te mea kua horapa ki ētahi atu wāhi.

• Matawai CT: Ka werohia he tae motuhake ki roto i te tinana, ā, ka tangohia he raupapa whakaahua hihi-X.
• Matawai MRI: Ka whakamahi i ngā aukume me ngā ngaru reo irirangi hei tango pikitia taipitopito o roto o te tinana.
• Matawai MIBG: He matawai motuhake tēnei mō te Neuroblastoma. I roto i tēnei matawai, ka werohia he matū irahiko haumaru ki roto i te tinana. Ka haere tēnei matū ki ngā wāhi kei reira ngā pūtau Neuroblastoma. Kātahi, ina tirohia ki tētahi kāmera motuhake, ka taea te kite mārama i te wāhi kua horapa te mate pukupuku i roto i te tinana. Heoi, tata ki te 10% o ngā pūtau mate pukupuku o ngā tamariki kāore e mimiti i tēnei MIBG. I roto i ēnei āhuatanga, ka whakamahia tētahi atu momo matawai e kiia nei ko te 'matawai PET'.
• Te matawai ira-X me te hihi-X: Ka whakamahia ēnei hei tiro whānui i te wāhi o te puku me tōna pānga ki ngā whekau e karapoti ana.

He aha ngā maimoatanga mō te Neuroblastoma?

Ka whakatauhia te maimoatanga e te tau o te tamaiti, te wāhanga o te mate, te taumata mōrearea, me te wāhi o te pukupuku. Ka mahi tahi tētahi rōpū tākuta me koe ki te whakawhanake i te mahere maimoatanga pai rawa atu mō tāu tamaiti.

Te maimoatanga e ai ki te taumata mōrearea

• Neuroblastoma iti-mōrearea: Ko ētahi tamariki o tēnei kāwai, inā koa ko te hunga kei raro iho i te 6 marama te pakeke, ka tirotirohia pea e tā rātou tākuta me te kore he maimoatanga. Nā te mea ka ngaro noa iho ētahi pukupuku me te kore he maimoatanga. Ko ētahi atu tamariki me mahi pokanga, chemotherapy, me ngā mea e rua rānei hei tango i te pukupuku.
• Neuroblastoma mōrearea-waenga: Ko te tikanga ka pokangahia ēnei tamariki hei tango i te pukupuku. Mena kua horapa ki ngā kōpū lymph, ka tangohia hoki. Ka hoatu te chemotherapy i muri i te pokanga. I ētahi wā, ka hoatu pea te chemotherapy i mua i te pokanga hei whakaiti i te pukupuku.
• Neuroblastoma Mōrearea-Tiketike: Ka tukuna he huinga maimoatanga ki ēnei tamariki. Kei roto pea i tēnei ko te chemotherapy, te pokanga, te chemotherapy horopeta nui me te whakawhitinga pūtau take, te radiation, me te immunotherapy.

Kia ako tātou i ētahi atu kōrero mō ngā tikanga maimoatanga.

He mea tino nui kia mārama koe ki ngā maimoatanga e hoatu ana ki tāu tamaiti, me ngā āhuatanga ka pā mai.

He aha te tūponotanga ka ora tēnei mate? (Te matapae)

Koinei te pātai nui rawa atu kei roto i te hinengaro o ia mātua. He rerekē te tere o te whakaoranga mō ngā tamariki e pangia ana e te neuroblastoma.

• He tino teitei te auau whakaora mō ngā tamariki kei roto i te wāhanga mōrearea iti, waenga rānei , inā koa ngā tamariki nohinohi. Tata ki te 90% - 95% o ngā tamariki ka ora katoa.
• Ko te auau whakaoranga mō ngā tamariki pakeke ake i roto i te rōpū mōrearea nui e tata ana ki te 60% .

Kaua e mutu te tumanako. Kei te rapu tonu ngā tākuta me ngā kairangahau i ngā maimoatanga whai hua ake mō tēnei rōpū tamariki mōrearea. He maha ngā maimoatanga hou kua puta kē ngā hua angitu.

Ka taea te ārai i tēnei mate?

Engari, kāore he huarahi hei ārai i te Neuroblastoma. Mena i pāngia koe, tō hoa rānei e tēnei mate i a koe e tamariki ana, i tētahi rānei o tō whānau kua pā ki tēnei mate, kōrero ki tō tākuta mōna. Engari kia maumahara, he tino onge te Neuroblastoma tuku iho (1% - 2%) noa iho.

Āhea ahau me toro atu ki te tākuta?

Ki te whakapae koe kei te pāngia tāu tamaiti e tētahi o ngā tohu kua kōrerotia ake nei, kaua e whakaroa, me toro atu ki te tākuta i te wā e taea ai. I roto i ēnei āhuatanga, ka pā nui te tātaritanga me te maimoatanga wawe ki te oranga o te tamaiti.

Ina kitea he mate pukupuku tō te tamaiti, ka uaua pea ki te whānau katoa te aro atu. He ohorere nui. Engari ehara i te mea ko koe anake. He tino ngākau nui ngā tākuta, ngā nēhi, me ngā kaimahi e rongoā ana i ēnei tamariki. Pātai atu hoki ki tō tākuta mō ngā rōpū tautoko ka taea e koe te kōrero ki ētahi atu mātua kua pāngia e ngā wheako rite. Ko te whakapuaki i ngā wheako me te whakarongo ki ngā kōrero a ētahi atu he puna kaha nui mōu.