Loaʻa i kāu keiki liʻiliʻi kahi puʻupuʻu ma ko lākou ʻōpū a i ʻole ka ʻāʻī e like me ka puʻupuʻu? A i ʻole he mau palapū a i ʻole nā kiko polū a puni ko lākou mau maka e like me ka hahau ʻia? Makaʻu loa a hopohopo nā makuahine a pau a i ʻole nā makuakāne ke ʻike lākou i kahi mea e like me kēia. He mea maʻamau loa ia. Akā i kekahi manawa hiki i kēia ke lilo i mau hōʻailona o kahi ʻano maʻi kanesa i kapa ʻia ʻo 'Neuroblastoma', kahi e kū pinepine ai i nā keiki ʻōpio. No laila i kēia lā, e kamaʻilio kākou e pili ana i kēia me ka makaʻu ʻole a wehewehe pono i nā mea āpau āu e pono ai e ʻike.
He aha maoli ka Neuroblastoma?
I ka ʻōlelo maʻalahi, ʻo Neuroblastoma kahi ʻano maʻi kanesa e ulu ana i loko o ka ʻōnaehana nerve o nā keiki liʻiliʻi a me nā pēpē. Hoʻokumu ʻia nā aʻalolo o ko mākou kino mai nā hunaola nerve ʻōpiopio i kapa ʻia ʻo 'neuroblasts'. Ulu ka maʻi kanesa Neuroblastoma i loko o kēia mau hunaola nerve ʻōpiopio.
ʻO ka hapa pinepine, hoʻomaka kēia maʻi kanesa i loko o nā hunaola nerve ʻōpiopio i loko o nā kelepa adrenal, ʻelua mau kelepa liʻiliʻi ma luna o nā puʻupaʻa. Hoʻopuka kēia mau kelepa i nā hormones e kāohi i nā mea he nui i loko o ko mākou kino a mākou i ʻike ʻole ai e hana nei, e like me ka helu o ka puʻuwai, ke koko, ka hanu ʻana, a me ka ʻai ʻana. Eia kekahi, hiki i kēia maʻi kanesa ke hoʻomaka i loko o nā ʻiʻo nerve i loko o ka iwi kuamoʻo, ka ʻōpū, ka umauma, a i ʻole ka ʻāʻī. I ka hala ʻana o ka manawa, hiki i kēia mau hunaola kanesa ke laha i nā ʻāpana ʻē aʻe o ke kino.
ʻO ka wānana no ke keiki me kēia maʻi e pili ana i kekahi mau kumu, me ka wahi o ke kanesa, ka makahiki o ke keiki, a me ke kahua (pehea ka mamao o ka laha ʻana o ke kanesa).
He maʻi maʻamau loa kēia?
ʻAʻole, he maʻi kanesa kakaʻikahi ka Neuroblastoma. Akā ʻo ka mea nui loa, ʻo ia ke ʻano maʻamau o ka maʻi kanesa i ʻike ʻia i nā pēpē. Loaʻa pinepine kēia maʻi i nā keiki ma lalo o 5 mau makahiki. I kekahi manawa hiki ke ulu kēia maʻi kanesa ʻoiai ke keiki i loko o ka ʻōpū. He mea kakaʻikahi loa ka ʻike ʻana i kēia maʻi kanesa i nā keiki ma luna o 10 mau makahiki.
Pehea e hoʻokaʻawale ʻia ai nā pae o Neuroblastoma?
Inā ua hōʻoia ʻia ua loaʻa i kāu keiki kēia maʻi, e nānā hou nā kauka i ka mamao o ka laha ʻana o ke kanesa a me ka wikiwiki o kona ulu ʻana. E hoʻoholo kēia i ka 'pae pilikia' o ka maʻi. A laila wale nō e koho ʻia ai ke koho lapaʻau kūpono loa no ke keiki.
I ka wā ma mua, ua hoʻoholo ʻia kēia pae ma ka nānā ʻana i ka nui o ke kanesa i koe i loko o ke kino ma hope o ke ʻoki ʻana. Akā i kēia manawa, hoʻohana nā kauka i kahi ʻano hana i ʻae ʻia ma ka honua holoʻokoʻa. I loko o ia mea, ua hoʻoholo ʻia ke kahua ma ka nānā ʻana i ka mamao o ka laha ʻana o ke kanesa, ma muli o nā scans (e like me ka `CT scan` a i ʻole `MRI`). E hoʻomaopopo kākou i kēia mau pae ma nā ʻōlelo maʻalahi.
| Ke kahua o ka maʻi | Ua wehewehe maʻalahi ʻia |
|---|---|
| Pae L1 | ʻO kēia ka pae haʻahaʻa loa o ka pilikia. Ua kaupalena ʻia ke kanesa i hoʻokahi ʻāpana o ke kino. Eia kekahi, ʻaʻohe okana nui i hoʻopilikia ʻia. |
| Kahua L2 | Eia kekahi, ua kaupalena ʻia ke kanesa i hoʻokahi wahi. Eia nō naʻe, ua pālahalaha paha i nā lymph node kokoke. Eia kekahi, no ka mea ua ʻōwili ʻia ke kanesa a puni nā kīʻaha koko nui, aia kekahi hopena i nā ʻōpū koʻikoʻi. |
| Pae M | ʻO kēia ka pae pilikia kiʻekiʻe loa. Maanei, ua pālahalaha nā hunaola kanesa i nā ʻāpana he nui o ke kino, ʻo ia hoʻi, i nā wahi mamao loa (maʻi metastatic mamao). |
| Ke Kahua MS | He hihia kūikawā kēia. ʻIke wale ʻia ia i nā keiki ma lalo o 18 mau mahina. Maanei, ua pālahalaha wale ke kanesa i ka ʻili, ke akepaʻa, a i ʻole ka iwi iwi. Loaʻa i nā keiki i kēia pae kahi manawa kiʻekiʻe loa e ho'ōla ʻia. Manaʻo pinepine ʻia kēia he maʻi haʻahaʻa ka pilikia. |
No ke aha e ulu ai kēia ʻano maʻi kanesa?
ʻO ke kumu nui o kēia, ʻo ia ka ulu ʻole ʻana o nā pūnaewele nerve ʻōpiopio ('neuroblasts') a mākou i kamaʻilio ai ma mua. Ke hana ʻia kahi hoʻololi genetic i loko o kēlā mau pūnaewele, hoʻomaka kēlā mau pūnaewele e māhele a ulu ma ke ʻano ʻē. ʻO nā pūnaewele e hōʻiliʻili ana ma kēia ʻano e hana i kahi puʻupuʻu. ʻAʻole maopopo i nā kauka ke kumu pololei o kēia hoʻololi genetic.
ʻO ka mea nui loa, ʻaʻole kēia ma muli o kekahi hewa o nā mākua. Eia kekahi, ma 98% - 99% o nā hihia, ʻaʻole i hoʻoilina ʻia kēia maʻi.
Eia nō naʻe, inā ua loaʻa i kekahi o ka ʻohana ka Neuroblastoma ma mua, aia kahi manawa liʻiliʻi e loaʻa ai i ke keiki. Akā, he mea kākaʻikahi loa ia. Eia kekahi, ʻoi aku ka nui o ka pilikia o nā keiki i hānau ʻia me nā ʻano maʻi hānau ʻē aʻe i ka loaʻa ʻana o kēia maʻi.
He aha nā hōʻailona o kēia maʻi?
ʻOkoʻa loa nā hōʻailona o ka neuroblastoma. Hiki i kekahi ke hoʻomaka lohi loa. Pili kēia mau hōʻailona i kahi o ka puʻupuʻu a me ke kahua o ka maʻi. I ka manawa pinepine, i ka wā e ʻike ʻia ai nā hōʻailona, ua laha mua ke kanesa i nā ʻāpana ʻē aʻe o ke kino.
Eia kekahi mau hōʻailona maʻamau:
- Puʻupuʻu: He puʻupuʻu i ʻike ʻia ma ka ʻāʻī, ka umauma, ka ʻōpū, a i ʻole ke pelvis. I nā pēpē, ʻike ʻia kekahi mau puʻupuʻu polū a poni paha ma lalo o ka ʻili.
- Nā Maka: Nā maka e ʻike ʻia ana e puka mai ana i mua, me kahi waihoʻoluʻu ʻeleʻele/polū a puni nā maka, me he mea lā ua palapū.
- ʻOʻoleʻa o ka ʻōpū: Ka maʻi pākīkī, ka paʻa ʻana o ka ʻōpū, ka ʻeha o ka ʻōpū, ka nalowale o ka makemake.
- Luhi a me ka maeʻele: Luhi mau, ʻūlū, kuni. ʻIli maeʻele. Ma muli kēia o ka anemia, ʻo ia hoʻi ka emi ʻana o nā hunaola koko ʻulaʻula.
- Pehu: Pehu ka ʻōpū a ʻeha.
- Paʻakikī ka hanu ʻana: ʻOi aku hoʻi i nā pēpē ʻōpio.
- Nāwaliwali: Nāwaliwali i nā wāwae a me nā wāwae, paʻakikī ke hele wāwae, a i ʻole ka lolo.
I ka holomua ʻana o ka maʻi, hiki ke ʻike ʻia nā hōʻailona e like me kēia:
- Ke koko kiʻekiʻe a me ka puʻuwai wikiwiki.
- ʻEha ma nā iwi, ke kua, a i ʻole nā wāwae.
- Nā pilikia me ke kaulike o ke kino a me ka neʻe ʻana.
- Nā neʻe wikiwiki a kaohi ʻole ʻia o nā maka.
- ʻO ke ʻano i kapa ʻia ʻo Horner's syndrome, i hōʻike ʻia e nā lihilihi maka e kulou ana ma kekahi ʻaoʻao o ka maka, nā haumāna liʻiliʻi, a me ka emi ʻana o ka hou ʻana.
Pehea e ʻike ai nā kauka i kēia maʻi?
Hoʻomaopopo pinepine ʻia kēia maʻi i nā keiki ma lalo o 5 mau makahiki. I kekahi manawa, hiki ke ʻike ʻia kēia puʻupuʻu i ka wā o ka ultrasound scan ʻoiai ke pēpē i loko o ka ʻōpū.
E hana kāu kauka i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona.
Hoʻokolohua kino
ʻO ka mea mua, e nānā pono ke kauka i ke keiki. E nānā lākou no nā puʻupuʻu a me nā mea ʻē aʻe. E hana pū lākou i kahi hoʻokolohua neurological e nānā i ka hana o ka ʻōnaehana nerve, nā reflexes, a me ka hoʻonohonoho ʻana.
Nā hoʻāʻo koko a me ka mimi
ʻO kēia mau hoʻokolohua e komo pū me ka helu koko piha (CBC) e nānā i ka anemia a me nā ʻano koko ʻē aʻe, a me ka nānā ʻana i nā pae o kekahi mau kemika e hōʻiliʻili i loko o ke koko a me ka mimi ke loaʻa ka maʻi kanesa.
Biopsy
ʻO ka mea i hana ʻia ma ʻaneʻi, ʻo ia ke lawe ʻana i kahi ʻāpana liʻiliʻi loa o ka ʻiʻo mai ka puʻupuʻu a nānā iā ia ma lalo o kahi microscope. ʻO kēia ka mea e hōʻoiaʻiʻo ai he 100% ʻo Neuroblastoma ia. Nānā pū ia inā he mau loli kūikawā ko nā hunaola kanesa i loko o kēia ʻāpana ʻiʻo i ko lākou mau chromosomes. He mea nui loa kēlā ʻike i ka hoʻoholo ʻana i ka pae pilikia o ke keiki a me ka hoʻolālā lapaʻau.
Biopsy o ka iwi iwi
ʻO ka iwi iwi ka ʻāpana huʻahuʻa i loko o ko kākou mau iwi nui. Maanei i hana ʻia ai ko kākou mau hunaola koko. Hana ʻia kēia hoʻāʻo e ʻike inā ua laha ka maʻi ʻaʻai i ka iwi iwi.
Nā Kiʻi Kiʻi
Hana ʻia kekahi mau ʻano scan e ʻike ai i kahi o ke kanesa, pehea kona nui, a inā ua pālahalaha aku i nā wahi ʻē aʻe.
- CT scan: Lawe ʻia kekahi mau kiʻi X-ray ma hope o ke komo ʻana i kahi kala kūikawā i loko o ke kino.
- MRI scan: Hoʻohana i nā magnet a me nā nalu lekiō e kiʻi i nā kiʻi kikoʻī o loko o ke kino.
- MIBG scan: He scan kēia i pili pono i ka Neuroblastoma. Ma kēia scan, ua hoʻokomo ʻia kahi kemika radioactive palekana i loko o ke kino. Hele kēia kemika i nā wahi i loaʻa ai nā cell Neuroblastoma. A laila, ke nānā ʻia me kahi kāmela kūikawā, hiki ke ʻike maopopo i kahi i laha ai ke kanesa i loko o ke kino. Eia nō naʻe, ma kahi o 10% o nā cell kanesa o nā keiki ʻaʻole e omo i kēia MIBG. I ia mau hihia, hoʻohana ʻia kekahi ʻano scan i kapa ʻia ʻo `PET scan`.
- ʻO ke scan Ultrasound a me X-ray: Hoʻohana nui ʻia kēia mau mea e loaʻa ai kahi manaʻo pakahi o kahi o ka puʻupuʻu a me kona hopena i nā ʻōpū a puni.
He aha nā lāʻau lapaʻau no ka Neuroblastoma?
Hoʻoholo ʻia ka lāʻau lapaʻau e ka makahiki o ke keiki, ke kahua o ka maʻi, ka pae pilikia, a me kahi o ka puʻupuʻu. E hana pū kahi hui o nā kauka me ʻoe e hoʻomohala i ka hoʻolālā lapaʻau maikaʻi loa no kāu keiki.
Lapaʻau e like me ka pae pilikia
- ʻO ka Neuroblastoma Haʻahaʻa-Pōpilikia: Hiki ke mālama ʻia kekahi mau keiki ma kēia māhele, ʻoiai ka poʻe ma lalo o 6 mahina, ma lalo o ka nānā ʻana a kā lākou kauka me ka ʻole o ka lāʻau lapaʻau. ʻO kēia no ka mea e nalowale ana kekahi mau puʻupuʻu iā lākou iho me ka ʻole o ka lāʻau lapaʻau. Pono paha nā keiki ʻē aʻe i ke ʻoki ʻana, ka chemotherapy, a i ʻole nā mea ʻelua e wehe i ka puʻupuʻu.
- ʻO ka Neuroblastoma Waena-Pīhoihoi: ʻO ka maʻamau, hana ʻia kēia mau keiki i ke ʻoki ʻana e wehe i ka puʻupuʻu. Inā ua pālahalaha i nā lymph nodes, e wehe ʻia nō hoʻi lākou. Hāʻawi ʻia ka Chemotherapy ma hope o ke ʻoki ʻana. I kekahi manawa, hiki ke hāʻawi ʻia ka chemotherapy ma mua o ke ʻoki ʻana e hoʻēmi i ka puʻupuʻu.
- ʻO ka Neuroblastoma Kiʻekiʻe-Pilikia: Hāʻawi ʻia kēia mau keiki i ka hui pū ʻana o nā lāʻau lapaʻau. Hiki i kēia ke komo pū me ka chemotherapy, ke ʻoki kino, ka chemotherapy nui me ka hoʻoili ʻana o nā cell stem, ka radiation, a me ka immunotherapy.
ʻO ke ʻano kūikawā, ʻo nā keiki me nā kope keu o ka gene MYCN i loko o ko lākou mau cell cancer ua mālama ʻia he poʻe pilikia kiʻekiʻe, me ka nānā ʻole i ke kahua o ka maʻi, no ka mea, hiki i kēia gene ke hoʻoulu i ka maʻi kanesa e ulu a laha koke.
E aʻo iki kākou e pili ana i nā ʻano lapaʻau.
He mea nui loa e maopopo iā ʻoe ke ʻano o nā lāʻau lapaʻau e hāʻawi ʻia ana i kāu keiki a me nā mea e pili ana iā lākou.
| ʻAno Lapaʻau | I ka ʻōlelo maʻalahi, he aha ka mea e hana ʻia? |
|---|---|
| Kemoterapia | ʻO kēia ka hāʻawi ʻana i ke kino i nā lāʻau lapaʻau e kāohi ai i nā hunaola kanesa mai ka māhele ʻana a me ka ulu ʻana. Hāʻawi ʻia kēia mau lāʻau lapaʻau ma o kahi aa koko. Hiki ke hala i nā pule a i ʻole nā mahina kēia lāʻau lapaʻau. |
| ʻoki kino | Hana nā kauka ʻokiʻoki e wehe i ka puʻupuʻu kanesa. Eia nō naʻe, i kekahi manawa ʻaʻole hiki ke wehe loa. I ia mau hihia, hoʻohana ʻia ka chemotherapy a i ʻole ka radiation therapy e luku i nā cell i koe. |
| Hoʻōla Pāhawewe | Hoʻohana ʻia nā kukuna ikehu kiʻekiʻe e luku i nā hunaola kanesa a i ʻole e hoʻōki i ko lākou ulu ʻana. Hāʻawi pinepine ʻia kēia lāʻau lapaʻau i nā keiki pilikia kiʻekiʻe e pale aku i ka hoʻi hou ʻana mai o ke kanesa ma hope o ka lāʻau lapaʻau. |
| Hoʻōla lāʻau pale | Hana kēia ma ke aʻo ʻana i ka ʻōnaehana pale ponoʻī o ke keiki e hoʻouka i nā hunaola kanesa e koe ana ma hope o nā lāʻau ʻē aʻe. Hāʻawi ʻia nā lāʻau lapaʻau kūikawā (antibodies) ma o kahi aa koko. Loaʻa kēia mau lāʻau lapaʻau a hoʻopili i kahi protein i kapa ʻia ʻo GD2 ma luna o nā hunaola Neuroblastoma. A laila hōʻailona kēia i ka ʻōnaehana pale o ke kino e luku i kēlā mau hunaola. |
| Hoʻoili Kelepona Kumu | He ʻano paʻakikī kēia lāʻau lapaʻau. ʻO ka mea mua, lawe ʻia nā hunaola kumu olakino ponoʻī o ke keiki mai ko lākou koko a mālama ʻia i loko o ka pahu hau. A laila, hāʻawi ʻia ka chemotherapy ikaika loa a kiʻekiʻe hoʻi e pepehi i nā hunaola kanesa āpau i loko o ke kino. A laila, hoʻihoʻi ʻia kēlā mau hunaola olakino i mālama ʻia i loko o ke kino o ke keiki. Hele kēlā mau hunaola i ka iwi iwi a kūkulu i nā hunaola koko olakino hou a me kahi ʻōnaehana pale. |
He aha ka manawa kūpono e ho'ōla ai i kēia maʻi? (Prognosis)
ʻO kēia ka nīnau nui loa ma ka noʻonoʻo o kēlā me kēia mākua. ʻOkoʻa ka nui o ka ho'ōla ʻana no nā keiki me ka neuroblastoma.
- He kiʻekiʻe loa ka nui o ka hoʻōla ʻana no nā keiki ma ka māhele pilikia haʻahaʻa a waena paha , ʻoiai hoʻi nā keiki ʻōpio. Ma kahi o 90% - 95% o nā keiki e hoʻōla piha ʻia.
- ʻO ka nui o ka ho'ōla ʻana no nā keiki makua ma ka hui pilikia kiʻekiʻe ma kahi o 60% .
Akā, mai hoʻopau i ka manaʻolana. Ke hoʻāʻo mau nei nā kauka a me nā mea noiʻi e ʻimi i nā lāʻau lapaʻau ʻoi aku ka maikaʻi no kēia hui keiki kiʻekiʻe. Nui nā lāʻau lapaʻau hou i hōʻike mua i nā hopena holomua.
Hiki ke pale ʻia kēia maʻi?
ʻO ka mea pōʻino, ʻaʻohe ala e pale aku ai i ka Neuroblastoma. Inā ua loaʻa iā ʻoe a i ʻole kāu hoa kēia maʻi i kou wā kamaliʻi, a inā he moʻolelo ko kekahi o kou ʻohana, e kamaʻilio me kāu kauka e pili ana i ia mea. Akā e hoʻomanaʻo, he mea kakaikahi loa ka Neuroblastoma hoʻoilina (1% - 2%) wale nō.
Āhea wau e ʻike ai i ke kauka?
Inā kānalua ʻoe ua loaʻa i kāu keiki kekahi o nā hōʻailona a mākou i kūkākūkā ai, mai hoʻokaʻulua a e ʻike koke i ke kauka. I ia mau hihia, hiki i ka ʻike mua a me ka mālama ʻana ke hoʻopilikia nui i ka hoʻōla ʻana o ke keiki.
Ke ʻike ʻia kahi keiki me ka maʻi kanesa, hiki ke paʻakikī i ka ʻohana holoʻokoʻa ke hoʻomanawanui. He mea hoʻohoka nui ia. Akā, ʻaʻole ʻoe hoʻokahi. He poʻe hoʻolaʻa loa nā kauka, nā kahu maʻi, a me nā limahana e mālama nei i kēia mau keiki. Eia kekahi, e nīnau i kāu kauka e pili ana i nā hui kākoʻo kahi e hiki ai iā ʻoe ke kamaʻilio me nā mākua ʻē aʻe i loaʻa nā ʻike like. ʻO ka kaʻana like ʻana i nā ʻike a me ka lohe ʻana i nā moʻolelo o haʻi hiki ke lilo i kumu ikaika nui nou.
Leka Lawe-Home
- ʻO ka Neuroblastoma kahi ʻano maʻi ʻaʻai e kū mai ana i nā ʻōpio, ʻoi aku hoʻi nā pēpē.
- Inā loaʻa i kāu keiki nā hōʻailona e like me ka puʻupuʻu ma ko lākou ʻōpū a ʻāʻī paha, kahi ʻano palapū a puni ko lākou mau maka, ke kuni mau, a i ʻole ka nalowale o ka makemake e ʻai, e ʻike koke i ke kauka.
- ʻAʻole i hana ʻia kēia maʻi e kekahi hewa o nā mākua. Hoʻokumu ʻia ia e kahi loli genetic maʻamau. He mea kākaʻikahi loa ia e hoʻoili ʻia i nā hanauna.
- Ua holomua nā ʻano lapaʻau. Hoʻoholo ʻia ka lāʻau lapaʻau ma muli o ka pae pilikia o ka maʻi o ke keiki.
- Loaʻa i nā keiki ma ka hui haʻahaʻa ka manawa kūpono e hoʻōla ai. Ke ʻike mau ʻia nei nā lāʻau lapaʻau hou a maikaʻi no nā keiki pilikia kiʻekiʻe. E hilinaʻi mau i kāu hui lapaʻau.
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