E nā mākuahine a me nā mākua kāne, ke noʻonoʻo mau nei ʻoukou i ke olakino o kā ʻoukou keiki liʻiliʻi, ʻeā? I kekahi manawa, ʻoiai ka ʻeha liʻiliʻi o ka ʻōpū a i ʻole ka nalowale o ka makemake e hoʻoweliweli iā ʻoe a hopohopo. I kēia lā, e kamaʻilio mākou e pili ana i kahi maʻi ʻaʻai e hiki ke hopohopo iki i nā mākua, akā ʻo ka mea pōmaikaʻi, he mea kakaikahi loa ia . ʻO kēia ka mea a nā kauka e kapa nei he hepatoblastoma. ʻOiai paha he paʻakikī iki ka inoa, e mālama kākou i ka maʻalahi.
He aha ka hepatoblastoma? E hoʻomaopopo maʻalahi kākou.
I ka ʻōlelo maʻalahi, he ʻano maʻi kanesa akepaʻa kakaʻikahi loa ka hepatoblastoma. Hoʻopilikia nui ia i nā keiki ʻōpio ma waena o nā makahiki 1 a me 3. ʻOiai ma kahi ʻāina e like me ʻAmelika Hui Pū ʻIa, loaʻa kēia ʻano maʻi i hoʻokahi a ʻelua paha mau keiki mai loko mai o hoʻokahi miliona. ʻO ia hoʻi, he mea kakaʻikahi loa ia. Eia nō naʻe, inā ʻike mua ʻia kēia maʻi a hiki ke wehe ʻia ka puʻupuʻu kanesa a i ʻole nā puʻupuʻu ma ke ʻoki ʻana, hiki ke ho'ōla loa ʻia ke keiki . I kekahi manawa, ʻo ka hoʻoili akepaʻa kekahi koho lapaʻau.
Loaʻa i kāu keiki liʻiliʻi kekahi o kēia mau hōʻailona? E makaʻala!
Aia kekahi mau hōʻailona maʻamau e ʻike ʻia i ka hihia o ka hepatoblastoma. Akā e hoʻomanaʻo, mai makaʻu e manaʻo he maʻi kēia no ka mea he mau hōʻailona kou. Hiki ke hana ʻia kēia mau mea e nā kumu maʻalahi ʻē aʻe. Eia naʻe, inā hoʻomau kēia mau mea, ʻoi aku ka maikaʻi o ke ʻike ʻana i ke kauka.
- ʻEha ʻōpū (ʻoi aku hoʻi ma ka ʻaoʻao waena a ʻākau paha o luna o ka ʻōpū).
- He puʻupuʻu ʻokoʻa i loko o ka ʻōpū. E noʻonoʻo, i kou ʻauʻau ʻana i kāu pēpē a i ʻole e hoʻololi ana i kona lole, manaʻo ʻoe i kahi mea ʻē, e like me kahi puʻupuʻu, i loko o ka ʻōpū.
- Ka nalowale o ka makemake a me ka emi ʻana o ke kaumaha (no ke kumu ʻole). Ua pau ka ʻai ʻana o ke keiki e like me ma mua a me he mea lā e emi ana ke kaumaha.
- Ka luaʻi mau ʻana a me ka luaʻi ʻana.
- Melemele o ka ʻili a i ʻole nā maka (jaundice).
He maʻi kanesa lohi pinepine ka Hepatoblastoma. No laila, ʻaʻole paha e hōʻike kāu keiki i kekahi mau hōʻailona a hiki i ka nui o ka puʻupuʻu kanesa e hoʻopilikia i ke kino. No ka laʻana, hiki i kāu keiki ke loaʻa ka ʻeha ʻōpū no kekahi mau lā, a i ʻole e emi ana ke kaumaha. ʻAʻole nā ʻeha ʻōpū a pau i hana ʻia e ka hepatoblastoma. Eia nō naʻe, inā he mau hopohopo kāu, e like me "ʻaʻole kēia he ʻeha ʻōpū wale nō," mai kānalua e ʻike koke i ke kauka pediatric o kāu keiki.
No ke aha lā kēia e hana nei? He aha nā kumu?
ʻO kaʻoiaʻiʻo, ʻaʻole maopopo loa i nā loea pehea e lilo ai nā hunaola ate olakino i mau hunaola kanesa. Eia nō naʻe, aia kekahi mau kūlana e hoʻonui ai i ka pilikia o ka hepatoblastoma:
- ʻO ka hānau ʻia ʻana me ke kaumaha hānau haʻahaʻa loa (ʻoi aku ke kaumaha hānau ma mua o 2.4 kilokani).
- Ka hānau mua ʻana (hānau ma mua o 37 mau pule).
- ʻO ka maʻi Aicardi: Hiki i kēia ke hana i nā malformations i loko o ka lolo o ka pēpē a me nā ʻāpana ʻē aʻe o ke kino.
- ʻO ka maʻi Beckwith-Wiedemann: Hiki i kēia ke hoʻopilikia i ka ulu ʻana o kahi keiki a hoʻonui i ka pilikia o ka maʻi kanesa.
- ʻO ka atresia biliary: Hiki i kēia ke ālai i nā ʻauwai bile i nā keiki ʻōpio a hōʻino i ke akepaʻa.
- ʻO ka maʻi Edwards (trisomy 18): Hoʻopilikia kēia i ke ʻano o ka ulu ʻana o ke kino o ke keiki.
- ʻO ka polyposis adenomatous familial (FAP): Hoʻoulu kēia i ka nui o nā ulu liʻiliʻi (polyps) i loko o ka kolona hiki ke lilo i maʻi ʻaʻai.
- Hemihyperplasia: Ma kēia, ʻoi aku ka wikiwiki o ka ulu ʻana o kekahi ʻaoʻao o ke kino o ke keiki ma mua o kekahi.
- ʻO ka maʻi Simpson-Golabi-Behmel (SGB): Hiki i kēia ke hana i nā ʻano ʻē i loko o ke akepaʻa a me nā ʻōpū ʻē aʻe i nā keiki.
ʻAʻole nā keiki a pau me kēia mau kūlana e loaʻa i ka hepatoblastoma. Eia kekahi, hiki i kahi keiki me ka ʻole o kekahi o kēia mau mea pilikia ke loaʻa i kēia kūlana. ʻO ia ke kumu i ʻōlelo ʻia ai ʻaʻole ʻike ʻia ke kumu pololei.
E aʻo pū kākou e pili ana i nā pilikia (nā hopena lohi) e hiki mai ana ma hope o ka mālama ʻana.
Hiki i nā lāʻau lapaʻau no ka hepatoblastoma ke hana i nā hopena lohi i kekahi manawa. ʻO kēia nā pilikia olakino e ʻike ʻia i nā mahina a i ʻole nā makahiki ma hope o ka hōʻoia ʻana a i ʻole ka mālama ʻana. Pono paha kāu keiki i ka nānā lōʻihi a me ka mālama olakino e hoʻokele i kēia mau mea.
ʻO nā maʻi ʻaʻai lua kekahi laʻana o ia hopena lohi. ʻO ia hoʻi, ka ulu ʻana o kahi ʻano maʻi ʻaʻai hou i nā mahina a i ʻole nā makahiki ma hope o ka hoʻopau ʻana i ka mālama ʻana no ka hepatoblastoma.
Hiki i kēia mau hopena lohi ke hoʻopilikia i kāu keiki:
- ʻO ka hiki ke noʻonoʻo, aʻo, a hoʻomanaʻo.
- Ka ulu ʻana a me ka hoʻomohala ʻana.
- Nā manaʻo, nā manaʻo a me ke olakino noʻonoʻo.
- Nā ʻōpū a me nā ʻiʻo o loko.
Mai makaʻu i kēia. Ua ʻike nō hoʻi nā kauka i kēia, no laila ke nānā pono nei lākou i nā mea e like me kēia.
Pehea e ʻike pololei ai nā kauka i kēia maʻi?
Ke lawe ʻoe i kāu keiki i kahi kauka keiki, e hana mua lākou i kahi hoʻokolokolo kino . E nīnau lākou iā ʻoe e pili ana i nā hōʻailona o kāu keiki a me ka lōʻihi o ko lākou noho ʻana. A laila, e hana paha lākou i kekahi mau hoʻokolohua, e like me:
- Nā hoʻāʻo Alpha-fetoprotein (AFP): He mea ia i hana ʻia e ke akepaʻa o ka pēpē. Nānā ʻia kona mau pae.
- Helu koko piha (CBC): Ke ana kēia i nā ʻano a me ka nui o nā hunaola koko i loko o ke koko o ke keiki.
- Panel metabolic piha (CMP): Hoʻāʻo kēia i 14 mau mea like ʻole i loko o ke koko a me ka hana akepaʻa o ke keiki.
- ʻO nā ultrasounds o ke akepaʻa a me ka Doppler: ʻAe kēia i nā kauka e kiʻi i nā kiʻi o loko o ke akepaʻa o kāu pēpē.
- Magnetic resonance imaging (MRI): Hiki i kēia hoʻāʻo ke hana i nā kiʻi maopopo loa o nā ʻōpū a me nā kīʻaha koko.
- ʻO ke ultrasound vascular: Hana ʻia kēia hoʻāʻo e nānā i ka pūnaewele o nā kīʻaha koko e komo ana a e puka ana i waho o ke akepaʻa o ke keiki.
Inā pono, hiki i kāu pediatrician ke kuhikuhi iā ʻoe i kahi oncologist pediatric, he kauka i loea i ka mālama ʻana i ka maʻi kanesa i nā keiki ʻōpio.
Pehea e hoʻoholo ʻia ai nā pae o ka maʻi kanesa?
He mea nui loa ka hoʻoholo ʻana i ke kahua o ka maʻi kanesa no nā kauka oncologists e hoʻolālā i ka mālama ʻana. Hoʻohana nā kauka oncologists pediatric i ʻelua mau ʻōnaehana hoʻokaʻawale ma kahi o ke kau ʻana i ke kahua o ka maʻi kanesa. ʻO lākou:
- PRETEXT: ʻO kēia ke kū nei no "ka nui o ka maʻi ma mua o ka mālama ʻana." Ma mua o ka chemotherapy, ka mea i hāʻawi ʻia ma mua o ke ʻoki ʻana, nānā ke kauka i ka mamao o ka laha ʻana o ke kanesa i ke akepaʻa o ke keiki. Nānā ʻia ka helu o nā nodules kanesa, ko lākou nui, a me ko lākou ʻano.
- POSTTEXT: ʻO ke ʻano o kēia no "ka nui o ka maʻi ma hope o ka mālama ʻana." Nānā ia i ke kūlana ma hope o ka mālama ʻana ma mua o ke ʻoki ʻana.
ʻElua ʻāpana nui (lobes) ko kākou akepaʻa. Hoʻokaʻawale nā loea maʻi kanesa i kēia mau ʻāpana ʻelua i ʻehā mau māhele hou aʻe. Hoʻokaʻawale ʻia kēlā me kēia māhele e like me ka helu o nā lobes o ke akepaʻa i loaʻa nā puʻupuʻu kanesa. I ka piʻi ʻana o ka helu o nā lobes me nā puʻupuʻu kanesa, piʻi pū ka helu o nā māhele.
Eia kekahi laʻana, e noʻonoʻo i kēia: Loaʻa i nā hoʻokolohua ʻelua mau puʻupuʻu kanesa ma nā ʻāpana ʻelua like ʻole o ke akepaʻa o ke keiki. A laila ua hoʻokaʻawale ʻia ke kanesa ma ke ʻano he PRETEXT pae II. Inā wehe ka chemotherapy i hoʻokahi puʻupuʻu ma mua o ke ʻoki ʻana, ua hoʻokaʻawale ʻia ke kanesa ma ke ʻano he POSTTEXT pae I. A laila ʻōlelo ke kauka ua loaʻa i ke keiki i kēia manawa ka hepatoblastoma pae I.
ʻO nā ʻano hepatoblastoma ʻē aʻe:
- Māhele I: Aia ka maʻi ʻaʻai ma hoʻokahi wale nō ʻāpana o ke akepaʻa o ke keiki. ʻAʻole i hoʻopilikia ʻia nā ʻāpana ʻekolu ʻē aʻe.
- Māhele II: ʻElua mau hihia o kēia. ʻO kekahi, aia ke kanesa ma nā ʻāpana ʻelua e pili ana o ke akepaʻa, akā ʻaʻole ma nā ʻāpana ʻelua ʻē aʻe. ʻO kekahi, aia ke kanesa ma kekahi ʻāpana, akā ʻaʻole ma nā ʻāpana ʻelua ʻaʻole e pili ana.
- Pae III: Aia ke kanesa ma kekahi a ʻoi aku paha mau ʻāpana o ke akepaʻa, akā ʻaʻohe kanesa ma nā ʻāpana e pili pono ana i nā ʻāpana me ke kanesa.
- Māhele IV:Ua pālahalaha ke kanesa i nā ʻāpana ʻehā o ke akepaʻa o ke keiki.
ʻOiai paha he mea paʻakikī iki kēia mau hoʻokaʻawale ʻana, e wehewehe pono nā kauka iā ʻoe.
He aha nā lāʻau lapaʻau i loaʻa?
ʻO ka lāʻau lapaʻau maʻamau ka ʻoki ʻana e wehe i ka ʻāpana o ke akepaʻa i hoʻopilikia ʻia e ke kanesa . ʻO ke akepaʻa kekahi o nā ʻōkana kupaianaha loa i loko o ko mākou kino. No ka mea, ʻo ia wale nō ke ʻōkana e hiki ke ulu hou ma hope o ka wehe ʻia ʻana o kahi ʻāpana. ʻO ke ʻano kēia, e ulu hou ana ke akepaʻa o kāu keiki i kona nui mua.
Hiki paha i ke kauka maʻi kanesa o kāu keiki ke hoʻoholo e hāʻawi iā ʻoe i ka chemotherapy hou aʻe ma mua a ma hope o ke ʻoki ʻana. Hoʻohana ʻia kēia lāʻau lapaʻau e hoʻēmi i ka puʻupuʻu kanesa.
Hiki i ke keiki ke loaʻa i ka chemotherapy no kahi o ʻehā a ʻeono pule ma hope o ke ʻoki ʻana. ʻO kēia chemotherapy, i hāʻawi ʻia ma hope o ke ʻoki ʻana, e hōʻemi ana i ka manawa e hoʻi hou mai ai ke kanesa.
ʻO nā lāʻau lapaʻau hepatoblastoma ʻē aʻe:
- Lapaʻau ablation: He kaʻina hana invasive iki kēia no ka hepatoblastoma hou.
- Hoʻoili ʻana i ke akepaʻa: He koho kēia inā ua hoʻopilikia ke kanesa i ka ʻaoʻao waena o ke akepaʻa a i ʻole nā ʻāpana he nui o ke akepaʻa.
- ʻO ke kemoembolization Transarterial (TACE): ʻO kēia kaʻina hana e pili ana i ka ʻoki ʻana i ke kahe koko i ka puʻupuʻu kanesa a me ka hāʻawi pololei ʻana i nā lāʻau chemotherapy i ka puʻupuʻu.
Hiki ke ho'ōla ʻia ka hepatoblastoma?
ʻAe, hiki. Akā, pili ia i ka wā e ʻike ʻia ai kāu keiki a me ka lōʻihi o ko lākou loaʻa ʻana i ka lāʻau lapaʻau. Hiki ke ho'ōla ʻia ka Hepatoblastoma inā hiki i ke kauka lapaʻau o kāu keiki ke wehe i kahi āpau a i ʻole kekahi hapa o ka puʻupuʻu kanesa .
"ʻO ka ʻike mua ʻana a me ka mālama koke ʻana he ʻelua mau mea nui loa ia i ke kaua ʻana i kēia maʻi."
He aha nā helu ola?
He mau kuhi wale nō nā helu ola o ke kanesa i hoʻokumu ʻia ma nā ʻike o ka poʻe me nā ʻano kanesa like ʻole. Ma keʻano holoʻokoʻa, 4 mai loko mai o 5 mau keiki me ka hepatoblastoma e ola ana i ʻelima mau makahiki ma hope o ka ʻike ʻia ʻana .
I ka noʻonoʻo ʻana i nā helu hoʻōla, he mea nui e hoʻomanaʻo he ʻokoʻa paha ka ʻike o kāu keiki mai nā keiki ʻē aʻe .
Nui nā kumu e hiki ke hoʻopilikia i ka wānana o ka hepatoblastoma. Inā he mau nīnau kāu e pili ana i nā helu ola, ʻo ke kauka oncology pediatric o kāu keiki ke kumu ʻike maikaʻi loa. Hiki iā ia ke wehewehe i ke ʻano o kēia mau helu i ka hihia o kāu keiki.
Āhea e pono ai i kaʻu keiki ke ʻike i ke kauka?
Pono kāu keiki e loaʻa nā manawa hoʻopaʻa manawa maʻamau me ka hui mālama maʻi kanesa. E nānā mau ke kime i ke olakino o kāu keiki, me nā hopena lohi. E nānā pū lākou no nā hōʻailona o ka hepatoblastoma e hoʻi mai ana a i ʻole ke kanesa hou.
Āhea wau e lawe ai i kaʻu keiki i ka lumi pilikia?
ʻO ka maʻamau, ʻo ke ʻoki ʻana i ka maʻi hepatoblastoma. Hiki i ke ʻoki ʻana ke hana i nā pilikia, e like me ka maʻi. E lawe koke i kāu keiki i ka lumi pilikia inā loaʻa kekahi o kēia mau mea:
- Inā ʻoi aku ke kuni ma mua o 100.4 degere Fahrenheit (38.3 degere Celsius).
- Inā he ʻulaʻula ʻeleʻele kahi i ʻoki ʻia ai, a inā paha e ʻeha ana ke keiki ke hoʻopā aku ʻoe.
- Inā puka mai kahi wai ʻōmaʻomaʻo a melemele paha mai kahi i ʻoki ʻia ai.
Pehea ʻoe e kōkua ai i kāu keiki me kēia mau hoʻokolohua a me nā lāʻau lapaʻau?
He mea nui nā hoʻokolohua e ʻike ai i ke kumu o ka maʻi o kāu keiki. Akā hiki i nā nila e huki ai i ke koko ke ʻeha. Hiki i nā keiki ke makaʻu i ka walaʻau o nā mīkini MRI. Hiki i nā keiki ke hopohopo a makaʻu e pili ana i ka chemotherapy a i ʻole ke ʻoki kino. He mea maʻamau loa i kahi keiki ke pane i kēia ʻano ke loaʻa iā lākou ka maʻi kanesa. ʻO ka hana ʻana me kahi loea ola keiki i kēia manawa hiki ke lilo i mea kōkua nui no kāu keiki (a me ʻoe) i ko lākou hele ʻana i kēia mau hoʻokolohua a me nā lāʻau lapaʻau.
Ke ʻike ʻoe ua loaʻa i kāu keiki ka hepatoblastoma, hiki iā ʻoe ke hoʻoluhi ʻia e nā manaʻo he nui. ʻOiai ʻoe e hoʻāʻo nei e noho mālie ma waho, hiki iā ʻoe ke manaʻo e like me ʻoe e hiolo ana ma loko. He manawa paʻakikī loa kēia. ʻOiai hiki ke ho'ōla ʻia ka hepatoblastoma me ka lāʻau lapaʻau, hiki i ka lawelawe ʻana i ka lāʻau lapaʻau ke lilo i mea paʻakikī no ke keiki a me kā lākou poʻe aloha.
Hoʻomaopopo ke kauka lapaʻau o kāu keiki a me ke koena o ka hui mālama i kēia mau pilikia. E hana lākou i nā mea āpau e hiki ai iā lākou ke maʻalahi i ka mālama ʻana. E hauʻoli nō hoʻi lākou e wehewehe i nā mea hiki iā ʻoe ke manaʻo a pehea e hiki ai iā ʻoe ke kōkua i kāu keiki. E hoʻomanaʻo ʻaʻole ʻoe hoʻokahi.
ʻO ka mea hope loa, nā mea nui e hoʻomanaʻo (Leka Lawe-Home)
- He maʻi ʻaʻai akepaʻa kakaikahi loa ka Hepatoblastoma e hoʻopilikia nui ana i nā keiki ʻōpio ma waena o nā makahiki 1-3.
- E makaʻala i nā hōʻailona e like me ka ʻeha o ka ʻōpū, ka pehu ʻana, ka nalowale o ka makemake, ka emi ʻana o ke kaumaha, ka luaʻi mau ʻana, a me ka jaundice. Mai hopohopo no ka mea he mau mea kēia iā ʻoe, akā e ʻike i ke kauka.
- ʻOi aku ka maʻalahi o ka ho'ōla ʻia ʻana o kēia maʻi me ka ʻike mua ʻana a me ka mālama koke ʻana .
- ʻO nā koho lapaʻau e pili ana i ke ʻoki kino, ka chemotherapy, a me ka hoʻoili ʻana i ke ake.
- Hiki ke loaʻa nā hopena lohi ma hope o ka lāʻau lapaʻau, no laila he mea nui ka hoʻomaʻamaʻa lōʻihi.
- E mālama i ke kamaʻilio maikaʻi me ke kauka o kāu keiki. E nīnau i kāu mau nīnau a me nā hopohopo a pau.
- E kiʻi i ke kākoʻo noʻonoʻo a me ka naʻau nou iho a me kāu keiki i kēia huakaʻi.
Ke lana nei koʻu manaʻo e kōkua kēia ʻike iā ʻoe e hoʻomaopopo i kēia maʻi laha ʻole. Ke makemake nei au i kāu keiki e ho'ōla koke!
ʻO ka Hepatoblastoma, ka maʻi kanesa o ke ake, ka maʻi kanesa o nā kamaliʻi, ka ʻeha o ka ʻōpū, ke ake, nā hōʻailona o ke kanesa, ka mālama ʻana i ke kanesa











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