He aha te mate pukupuku Wilms? Tohutohu, Take, me te Maimoatanga

Ko te mate pukupuku Wilms tētahi momo mate pukupuku whatukuhu e pā ana ki ngā tamariki, e tupu ana i mua i te 5 tau te pakeke. E tupu ana tēnei mate pukupuku i ngā pūtau e hanga ana i ngā whatukuhu i te wā e whānau ana te pēpi, koia tēnei e tino kitea ai i ngā tamariki iti rawa.

Ahakoa ka rongo koe i te “mate pukupuku whatukuhu”, he take tō te tumanako. Ko te mate pukupuku Wilms tētahi o ngā mate pukupuku tamariki e tino ora ana, neke atu i te 90% o ngā tamariki e ora tonu ana i muri i te maimoatanga. Ko te mārama ki te mea kei te whakahaere koe ka āwhina i a koe kia rite ake, kia maia ake i tēnei haerenga.

He aha te mate pukupuku Wilms?

Ko te mate pukupuku Wilms tētahi mate pukupuku whatukuhu e tīmata ana i ngā pūtau whatukuhu e whānau ana i ngā tamariki. I huaina ki a Dr. Max Wilms, nō te mea i whakaahua tuatahi ia i te rautau kua hipa.

E hanga ana tēnei mate pukupuku ina tonu te tipu o ētahi pūtau whatukuhu i te wā e tika ana kia mutu te tipu i te wā o te whanaketanga noa. Whakaarohia he mea hanga e tika ana kia horoia i muri i te hanga whare, engari i tonu te kohikohi i te wahi he. Ko te nuinga o ngā keehi e pā ana ki tētahi whatukuhu anake, ahakoa tata ki te 5-10% o ngā tamariki e whānau ana ngā mate pukupuku i ngā whatukuhu e rua.

Ko te mate pukupuku Wilms te momo mate pukupuku whatukuhu tino noa i ngā tamariki, e pā ana ki te 1 i roto i ngā tamariki 10,000. He tino onge tēnei, me te tata ki te 500-600 o ngā keehi hou i ia tau i te United States.

He aha ngā tohu o te mate pukupuku Wilms?

Ko te tohu tino noa ko te pupuhi kore mamae, te kohinga ranei i te kopu o tō tamaiti ka kitea pea e koe i te wā e kaukau ana koe, i te wā e takoto ana rānei tō tamaiti.

Ko ēnei ngā tohu hei titiro atu, kia mahara ko te nuinga o ngā tamariki ka kotahi, rua rānei o ēnei tohu:

• He kohinga kore mamae, te pupuhi ranei i te kopu ka taea te kite
• Te toto i te mimi, ka puta pea he tae whero, whero, kōpara ranei
• Te mamae o te kopu, te ngoikore ranei
• Te kirika kore take
• Te ngaro o te hiahia kai, te ngawari ranei ki te makona
• Te ruaki, te ruaki ranei
• Te kōpū na te pehanga o te mate pukupuku ki ngā whekau tata
• Te toto teitei (ahakoa ka hiahiatia tēnei taputapu hauora hei kite)

Kaore e tino noa, ka rongo pea etahi tamariki i te poto o te manawa ki te horapa te mate pukupuku ki ngā pūkahukahu, ki te kore ranei e pai te hauora, te ngenge ranei. Kia mahara ko ēnei tohu ka maha atu ngā take noa, no reira ko te kite i tētahi kaore e tikanga kei te mate pukupuku.

He aha ngā take o te mate pukupuku Wilms?

E tupu ana te mate pukupuku Wilms ina tonu te tipu o ngā pūtau whatukuhu i te wā e tika ana kia mutu te tipu i te wā o te whanaketanga noa. Kaore i tino mārama te take tika mō tēnei tukanga, engari kua kitea e ngā kairangahau etahi take whakauru.

Ko te nuinga o ngā keehi e puta ana ma te āhuatanga kaore he take mārama. Heoi, ko ētahi tamariki e whānau ana me ngā huringa ira e tino pā ana ki te whānautanga o tēnei mate pukupuku. Ko ēnei take ira e whakaatu ana i te 10-15% o ngā keehi.

Ko ēnei ngā take whakauru e mohiotia ana:

• Ngā huringa ira e puta ana i te wā e whānau ana te whatukuhu i te kopu
• Ngā mate ira kua oti te whakawhiwhi penei i te mate WAGR, te mate Beckwith-Wiedemann ranei
• Ngā hapa whānau e pā ana ki ngā ira tangata, te pūnaha mimi ranei
• Te hītori whānau o te mate pukupuku Wilms (ahakoa he tino onge tēnei)
• Ētahi āhuatanga ira e pā ana ki te tipu noa o ngā pūtau

He mea nui kia mārama kaore he mea i mahi koe, i kore ranei i mahi i te wā hapu i puta ai tēnei mate pukupuku. Kaore te mate pukupuku Wilms i puta i ngā take taiao, kai, i ngā whiringa noho ranei. He hua kino no te whanaketanga o ngā whatukuhu o ētahi tamariki.

Nōhea te haere ki te taote mō te mate pukupuku Wilms?

Me whakapiri atu koe ki te taote o tō tamaiti ina kite koe i te kohinga, te pupuhi ranei i te kopu o tō tamaiti e mau tonu ana mo etahi rā. Ahakoa ko te nuinga o ngā kohinga kopu i ngā tamariki ehara i te mate pukupuku, he mea tika tonu te tirotiro.

Rapua te awhina hauora i roto i te rā, rua rā ranei ki te toto o tō tamaiti i roto i tōna mimi, ina koa ki te haere tahi me ētahi atu tohu penei i te mamae o te kopu, te kirika ranei. Ahakoa he maha ngā take o te toto i te mimi i ngā tamariki, he mea tika tonu te arotake e te kaiwhakarato hauora.

Waea atu ki tō taote inaianei ki te mamae nui o te kopu o tō tamaiti, te ruaki tonu ranei, te ahua ranei kaore e pai te hauora. Whakaarohia ō whakaaro hei mātua – ki te he tetahi mea, he rerekē ranei te hauora o tō tamaiti, he mea tika tonu te rapu tohutohu hauora.

He aha ngā take morearea mō te mate pukupuku Wilms?

He maha ngā take ka piki ake te tupono o te tamaiti ki te whānautanga o te mate pukupuku Wilms, ahakoa ko te whai i ēnei take morearea kaore e tikanga ka whiwhi tō tamaiti i te mate pukupuku. Ko te nuinga o ngā tamariki me ēnei take kaore e whānau ngā mate pukupuku.

Ko ngā take morearea tino kaha ko ētahi āhuatanga ira me ngā hapa whānau e pā ana ki te whanaketanga noa:

• Te mate WAGR (e pā ana ki ngā kanohi, ngā ira tangata, te whanaketanga hinengaro ranei)
• Te mate Beckwith-Wiedemann (e puta ana te nui o te tipu o ngā wahi o te tinana)
• Te mate Denys-Drash (e pā ana ki te mahi whatukuhu me te whanaketanga ira tangata)
• Ngā hapa whānau o ngā ira tangata, te pūnaha mimi ranei
• Te whai i te pungarehu kore e heke iho
• Te hītori whānau o te mate pukupuku Wilms (ahakoa e iti iho i te 2% o ngā keehi tēnei)

Ko ētahi take morearea iti ake ko ētahi huringa ira me te whānautanga me ngā pūtau whatukuhu kaore i whānau noa. He iti te tupono o ngā tamariki Pango Amerika i ētahi atu rōpū iwi, ahakoa kaore i tino mārama ngā take mō tēnei.

Ko te tau tetahi take, me te nuinga o ngā keehi e puta ana i waenga i ngā tau 2 me te 5. He tino onge i ngā tamariki neke atu i te 10 tau.

He aha ngā raruraru pea o te mate pukupuku Wilms?

Ina kitea wawe ka maimoatia tika, ko te nuinga o ngā tamariki me te mate pukupuku Wilms ka ora katoa kaore he raruraru roa. Heoi, penei i tetahi atu āhuatanga hauora nui, ka puta pea ngā raruraru e pā ana ki te mate pukupuku anō, ki tōna maimoatanga ranei.

Ko ngā raruraru mai i te mate pukupuku pea ko:

• Te tipu o te mate pukupuku kia nui rawa te pehanga ki ngā whekau tata
• Te toto teitei na te pānga o te whatukuhu
• Ngā raruraru mahi whatukuhu ki te pānga o ngā whatukuhu e rua
• Te horapa ki ētahi atu wāhanga o te tinana, ko te nuinga ko ngā pūkahukahu, te ate ranei
• Te pakaru o te mate pukupuku, ka puta pea i te wā e tirotirohia ana, e whakahaerehia ana ranei te pokanga

Ko ngā raruraru e pā ana ki te maimoatanga, ahakoa ka taea te whakahaere, ka uru atu ngā pānga mai i te chemotherapy penei i te ngaro o te makawe, te piki o te morearea mate, te ruaki ranei. Ka puta pea te raru o te kiri mai i te rongoā radiation, te pānga ranei ki te tipu o ngā wāhanga i maimoatia. Ko ngā morearea o te pokanga ko ngā raruraru pokanga noa penei i te toto, te mate ranei.

Ko ngā pānga roa he onge engari ka uru atu ngā raruraru rongohere mai i ētahi rongoā chemotherapy, te whānautanga ranei o ētahi atu mate pukupuku i muri mai i te ora. Ka tirotiro tō rōpū hauora mō ēnei āhuatanga ka tango i ngā mahi hei whakaiti i ngā morearea.

Me pēhea te whakatau o te mate pukupuku Wilms?

Ko te whakatau e tīmata ana me te taote o tō tamaiti e tirotiro ana i tō tamaiti, e kite ana ranei i tetahi kohinga, te pupuhi ranei i te kopu. Ki te kitea tetahi mea e awangawanga ana, ka tukuna pea koe ki te tohunga tamariki mō te whakamātautau atu.

Ko te tukanga whakatau e whakauru ana i ngā whakamātautau whakaahua maha hei whiwhi i te whakaahua mārama o te mea kei te puta. Ko te ultrasound te whakamātautau tuatahi, no te mea kaore e mamae, kaore hoki e whakamahi i te radiation. Ka taea e tēnei te whakaatu mena he kohinga kei te whatukuhu ka āwhina ki te whakatau i tōna rahi me ōna āhuatanga.

Ko ngā whakamātautau atu e whakauru ana:

1. Te CT scan, te MRI ranei hei whiwhi i ngā whakaahua taipitopito o te mate pukupuku me te tirotiro mena kua horapa
2. Te X-ray uma, te CT scan ranei hei titiro mena kua horapa ki ngā pūkahukahu
3. Ngā whakamātautau toto hei tirotiro i te mahi whatukuhu me te hauora whānui
4. Ngā whakamātautau mimi hei titiro mena he toto, he rerekētanga ranei
5. I etahi wā, he tauira pūtau iti (biopsy) hei whakau i te whakatau

Ko te tukanga whakatau katoa e toru, e whitu rā pea. Ahakoa te tatari mō ngā hua ka āwangawanga pea, kia mahara ko te whiwhi i te whakatau tika ko te kaupae tuatahi ki te mahere maimoatanga tino pai mō tō tamaiti.

He aha te maimoatanga mō te mate pukupuku Wilms?

Ko te maimoatanga mō te mate pukupuku Wilms he tino angitu, me ngā reiti ora e neke atu ana i te 90% ina kitea wawe te mate pukupuku. Ko te mahere maimoatanga e whakawhirinaki ana ki te rahi o te mate pukupuku, te wāhi, me te mea kua horapa, engari e whakauru ana i te huinga o te pokanga me te chemotherapy.

Ko te nuinga o ngā tamariki ka whai pokanga hei tango i te whatukuhu e pā ana (e kiia nei ko te nephrectomy) me te mate pukupuku. Kaua e manukanuka – ka taea e te tangata te ora noa me tetahi whatukuhu hauora. I mua i te pokanga, ka whiwhi pea tō tamaiti i te chemotherapy hei whakaiti i te mate pukupuku kia ngāwari ai te tango haumaru.

Ko te huinga maimoatanga noa e whakauru ana:

1. Te chemotherapy i mua i te pokanga (e 4-6 wiki pea) hei whakaiti i te mate pukupuku
2. Te pokanga hei tango i te whatukuhu me te mate pukupuku
3. Te chemotherapy atu i muri i te pokanga (e 6-24 wiki pea)
4. Te rongoā radiation i etahi keehi, ina koa ki te horapa te mate pukupuku
5. Ngā haerenga tirotiro auau hei tirotiro i te ora me te titiro mena kei te hoki mai

Mō ngā tamariki me ngā mate pukupuku i ngā whatukuhu e rua, he uaua ake te huinga, ka arotahi ki te tiaki i te mahi whatukuhu kia taea ai. Ka uru pea tēnei ki te tango wāhanga o ngā pūtau whatukuhu, kaore i te tango katoa i te whatukuhu.

Ko te maimoatanga e oti ana i roto i te 6-9 marama, ka hoki te nuinga o ngā tamariki ki ō rātou mahi noa i muri i te mutunga o te rongoā.

Me pēhea te whakarato i te tiaki kāinga i te wā maimoatanga?

Ko te tiaki i tō tamaiti i te kāinga i te wā maimoatanga e arotahi ana ki te pupuri i a ia kia pai, ki te aukati i ngā mate, ki te pupuri ranei i te noa kia taea ai. Ka hoatu e tō rōpū hauora ngā aratohu motuhake, engari he kaupapa whānui ka taea te āwhina.

Ko te whakahaere i ngā pānga mai i te maimoatanga te wero tino nui. Mō te ruaki, hoatu ngā kai iti, auau me ngā kai ngawari e pai ana tō tamaiti. He mea nui te pupuri i te wai, na reira whakatenatenahia ngā inu wai, ngā kēki hauā, ngā popsicles ranei i te rā katoa.

Ko ēnei ngā rautaki tiaki kāinga matua:

• Pupuri i tō tamaiti i ngā tāngata e mate ana, na te mea ka ngoikore te pūnaha mate o te chemotherapy
• Horoi i ngā ringa auau, whakatenatenahia hoki tō tamaiti ki te mahi pera
• Tirohia te kirika, waea atu ki tō rōpū hauora inaianei ki te puta
• Hoatu atu te wā okioki atu, kaua hoki e manukanuka ki te moe nui atu tō tamaiti i te noa
• Hoatu ngā kai kai ora ina hiahia tō tamaiti ki te kai, kaua e akiaki ngā kai
• Pupuri i te wāhi pokanga kia ma, kia maroke ai kia rite ki ngā tohutohu a tō taote pokanga
• Hoatu ngā rongoā kia rite ki te whakahau, ahakoa pai ake te ahua o tō tamaiti

I te taha wairua, pupuri i ngā mahi noa ina taea, haere tonu me ngā mahi e pai ana tō tamaiti, kia rite ki tōna kaha. He maha ngā whānau e kite ana ko te hono atu ki ngā hoa kura me te pupuri i ngā mahi e pai ana ka āwhina i ngā tamariki kia noa ake i te wā maimoatanga.

Me pēhea te whakarite mō ngā hui taote?

Ko te whakarite mō ngā hui hauora ka āwhina i a koe ki te whiwhi i te nuinga o tō wā me te rōpū hauora, kia whakamāramahia hoki ō awangawanga katoa. Tīmata ma te tuhi i ō pūrongo i mua i ia haerenga – he ngāwari te wareware i ngā mea nui ina āwangawanga koe, ina ngoikore ranei.

Kawe mai i te rārangi katoa o ngā rongoā katoa e inu ana tō tamaiti, tae atu ki ngā rongoā i te toa me ētahi atu tāpiringa. Waiho hoki he tāpuhi ngāwari o ngā tohu, ngā pānga, ngā huringa ranei kua kitea e koe mai i te haerenga whakamutunga.

Whakaarohia te whakarite i ēnei mea:

• He rārangi o ngā tohu o nāianei me te wā i tīmata ai
• Ngā pūrongo mō te ahu whakamua o te maimoatanga me te mea e tatari ana i muri mai
• Tetahi awangawanga mō ngā pānga, ngā mahi o ia rā ranei o tō tamaiti
• Ngā kāri inihua me ētahi atu tuhinga e hiahiatia ana
• He mema whānau whakawhirinaki, he hoa ranei hei tautoko me te awhina ki te mahara i ngā korero
• Tetahi mea hei pupuri i tō tamaiti i te wā e tatari ana
• Ngā kai me ngā inu ki te roa te hui

Kaua e whakaroa ki te tono whakamārama mena he whakapohehe ngā kupu hauora, tono hoki i ngā tohutohu tuhituhi mō ngā tohutohu tiaki uaua. He maha ngā mātua e kite ana he āwhina te tuhi i ngā korero, te tono ranei mena ka taea te tuhi i ngā wāhanga nui o te kōrero hei tirotiro i muri mai.

He aha te mea nui mō te mate pukupuku Wilms?

Ko te mea nui rawa hei mahara ko te mate pukupuku Wilms, ahakoa he nui te kino, he pai te whakatau ina maimoatia tika. Neke atu i te 90% o ngā tamariki i whakatauhia ki tēnei mate pukupuku e ora tonu ana i te ora noa, hauora i muri i te maimoatanga.

Ko te kite wawe e hanga ana i te rerekētanga nui i te angitu o te maimoatanga, na reira whakawhirinaki ki ō whakaaro ki te kite koe i tetahi huringa e awangawanga ana i te hauora o tō tamaiti. Ko te huinga o te pokanga me te chemotherapy he tino whai hua, ka oti te maimoatanga o te nuinga o ngā tamariki i roto i te iti iho i te tau.

Ahakoa ka āwangawanga pea te haerenga i mua i tēnei wā, ehara koe i te kotahi. Ko ngā rōpū mate pukupuku tamariki kua whakangungua motuhake hei tiaki i ngā tamariki me ngā whānau i tēnei tukanga. He maha ngā whānau e kite ana ko te hono atu ki ētahi atu mātua kua pā atu ki ngā wheako rite te whakarato i te tautoko me te tirohanga nui.

Kia mahara ki te tiaki i a koe anō – e hiahia ana tō tamaiti kia hauora, kia kaha koe. Whakaae ki te awhina mai i ngā hoa me ngā whānau, kaua hoki e whakaroa ki te whakamahi i ngā ratonga tautoko e wātea ana i tō pokapū hauora.

Ngā Pūrongo Nui e Pā ana ki te Mate Pukupuku Wilms

Ka taea e taku tamaiti te ora noa me tetahi whatukuhu?

Ae, tino. Ka taea e te tangata te ora noa me tetahi whatukuhu hauora. Ka piki haere te mahi o te whatukuhu e toe ana hei utu mō tetahi i tangohia. Ka taea e tō tamaiti te whakauru ki te nuinga o ngā mahi, tae atu ki ngā hākinakina, ahakoa ka tūtohu pea tō taote ki te karo i ngā hākinakina hononga ka taea te whara i te whatukuhu e toe ana.

Ka whānau ano taku tamariki ki te mate pukupuku Wilms?

He tino iti ngā tupono. Ko te 1-2% anake o ngā keehi mate pukupuku Wilms he ira, arā, e rere ana i roto i ngā whānau. Heoi, ki te whai tō tamaiti i ētahi mate ira e hono ana ki te mate pukupuku Wilms, ka tūtohu pea tō taote i te tohutohu ira hei aromatawai i te morearea mō ngā teina me ngā tamariki o muri mai.

E hia te roa o te tirotiro i taku tamaiti i muri i te maimoatanga?

Ko te nuinga o ngā tamariki ka whai hui tirotiro auau mo te rima tau i muri i te mutunga o te maimoatanga. Ko ēnei haerenga e tīmata ana i ia toru marama, ka iti haere te auau. Ko te tirotiro e whakauru ana i ngā tirotiro tinana, ngā whakamātautau toto, me ngā rangahau whakaahua auau hei whakarite kia kaua te mate pukupuku e hoki mai, kei te whānau noa hoki tō tamaiti.

Ka hoki mai te mate pukupuku Wilms i muri i te maimoatanga?

He onge te hoki mai, engari he mea pea, e puta ana i te 10-15% o ngā keehi. Ko te nuinga o ngā hoki mai e puta ana i roto i ngā rua tau tuatahi i muri i te maimoatanga, koia tēnei e nui ai te tiaki whai muri. Ki te hoki mai te mate pukupuku, ka taea tonu te maimoatanga angitu, ahakoa ka rerekē pea te huinga i te maimoatanga tuatahi.

Me korero atu ahau ki taku tamaiti mō tōna whakatau?

Kia pono i te huarahi e tika ana mō tōna tau. E hiahia ana ngā tamariki iti ki ngā whakamārama ngāwari, pūmau penei i te “He pūtau mate koe i roto i tō whatukuhu e hiahia ana ngā taote ki te tango hei whakaora i a koe.” Ka taea e ngā tamariki pakeke te mārama ki ngā kōrero atu mō te maimoatanga me te take e hiahiatia ana. Ka taea e ngā tohunga ora tamariki i tō hōhipera te āwhina i a koe ki te kimi i ngā kupu tika me te whakarato i ngā rauemi hei āwhina i tō tamaiti ki te whakahaere.