Loaʻa i kāu keiki liʻiliʻi kēia maʻi kanesa laha ʻole? E kamaʻilio kākou e pili ana i ka Rhabdoid Tumor!

E nā mākuahine a me nā mākua kāne, he mea kaumaha nui ia ma ko ʻoukou puʻuwai a he mea āu e makemake ʻole ai e noʻonoʻo i ka wā e ʻike ai kāu keiki liʻiliʻi he maʻi kanesa ko lākou. Akā i kekahi manawa, hiki i nā keiki ke loaʻa i nā maʻi a mākou i manaʻo ʻole ai. I kēia lā e kamaʻilio mākou e pili ana i kahi ʻano maʻi kanesa laha wikiwiki loa e hoʻopilikia ana i nā keiki, ʻoiai nā keiki ʻōpio. Ua kapa ʻia kēia ʻo Rhabdoid Tumor . Manaʻo paha ʻoe i kahi mea ʻē ke lohe ʻoe i kēia inoa, akā e wehewehe maʻalahi kākou.

He aha ka Rhabdoid Tumor? I ka pōkole...

He ʻano maʻi kanesa kakaikahi ka Rhabdoid Tumor, ulu wikiwiki . ʻO ia ka mea maʻamau i nā kamaliʻi ʻōpio a me nā pēpē . Ke nānā ʻia ma lalo o kahi microscope, ua like kēia mau hunaola kanesa me nā rhabdomyoblasts , kahi ʻano hunaola e hana ana i nā ʻiʻo. ʻO ia ke kumu i kapa ʻia ai ʻo "rhabdoid." Hiki i kēia kanesa ke ulu i loko o nā puʻupaʻa o ke keiki, nā ʻiʻo palupalu, a i ʻole ka ʻōnaehana nerve waena (lolo a me ke kaula kuamoʻo). ʻO ka mea pōʻino, hiki i kēia kanesa ke laha koke loa, e paʻakikī ai ke mālama.

Aia kekahi mau ʻano like ʻole o ka Rhabdoid Tumor?

ʻAe, aia kekahi mau ʻano nui o kēia maʻi kanesa ma muli o kahi e loaʻa ai. E nānā kākou i ke ʻano o lākou.

1. ʻO ka puʻupuʻu Rhabdoid o ke Kidney (RTK)

He puʻupuʻu rhabdoid kēia o ka puʻupaʻa i loko o ke keiki. I kekahi manawa ua hoʻopōkole ʻia ʻo ia ʻo ``(RTK)``.

2. Nā Tumors Rhabdoid Malignant Extracranial a i ʻole Extrarenal

Hiki i kēia ʻano maʻi kanesa ke ulu i loko o nā ʻiʻo palupalu o ke keiki a me nā ʻōpū ʻē aʻe, e like me ke akepaʻa, nā māmā, a me ka ʻili. Ua kapa ʻia hoʻi ʻo ia he malignant rhabdoid tumors (MRT) . ʻO ke ʻano o "Malignant" he maʻi kanesa.

3. Nā ʻōpū Teratoid Rhabdoid Atypical (ATRT)

Hoʻomohala ʻia kēia ʻano maʻi ʻaʻai rhabdoid i loko o ka ʻōnaehana nerve waena o ke keiki, ka lolo a me ke kaula kuamoʻo. I loko o kēia ʻano maʻi ʻaʻai, hoʻokumu mua ʻia nā hunaola maʻi ʻaʻai i loko o ka lolo a i ʻole ke kaula kuamoʻo o ke keiki. Ma kahi o 50% o kēia mau maʻi ʻaʻai (ATRT) e ulu ana i loko o ka cerebellum (nāna e hoʻomalu i ka neʻe ʻana a me ke kaulike) a i ʻole ka lolo ( nāna e hoʻomalu i nā mea e like me ka hanu ʻana a me ka helu o ka puʻuwai).

ʻO wai ka mea e loaʻa pinepine ai i nā Tumors Rhabdoid?

Hoʻopilikia nui ia i nā pēpē a me nā keiki ʻuʻuku loa , ʻoi aku hoʻi ka poʻe ma waena o 11 a me 18 mau mahina . ʻOi aku ka liʻiliʻi o ka loaʻa ʻana o kēia maʻi i nā pākeke.

He mea kākaʻikahi loa kēia, ʻōlelo kekahi mau noiʻi hiki ke hana ʻia ma lalo o hoʻokahi i loko o ka miliona kānaka.Ua ʻōlelo ʻia e loaʻa kēia maʻi kanesa i nā nui liʻiliʻi. ʻO ia hoʻi, he maʻi kakaikahi loa ia.

No ke aha e ulu ai kēia mau puʻupuʻu rhabdoid? He aha ke kumu?

ʻO ka hapa nui o ka manawa, ʻo ke kumu nui o ka maʻi ʻaʻai rhabdoid he mutation genetic i loko o ka gene SMARCB1 . E noʻonoʻo he kiaʻi liʻiliʻi i loko o ko mākou kino e kāohi ana i ka ulu ʻana o nā cell. ʻO kēia gene SMARCB1 he gene hoʻopau tumor . Hoʻopuka ia i kahi protein e kāohi ana i ka ulu ʻana o nā cell. E like me ka mākaʻi kaʻa, hoʻōki ia i nā cell mai ka māhele wikiwiki ʻana. No laila, inā he kīnā, ʻo ia hoʻi, he mutation, i loko o kēia gene SMARCB1, nalowale kēlā mana a māhele wikiwiki nā cell, e alakaʻi ana i ka maʻi ʻaʻai . I ka manawa kākaʻikahi, hiki i kēia mau maʻi ʻaʻai ke ulu ma muli o kahi mutation i loko o kahi gene hoʻopau tumor i kapa ʻia ʻo SMARCA4. ʻOiai hiki i kekahi mau keiki ke hoʻoilina i kēia gene mutated mai ko lākou mau mākua, ʻo ka hapa nui o ka manawa e kū mai kēia mau maʻi ʻaʻai ma muli o kahi mutation genetic hou e kū mai ana me ka ʻole o ka mōʻaukala ʻohana . ʻO ke ʻano kēia inā ʻaʻohe mea o ka ʻohana i loaʻa ka mutation ma mua, hiki i nā cell o ke keiki ke loaʻa kēia mutation ma ka manawa kūpono. I ka mālama ʻana i ke keiki, hiki ke hana ʻia kahi loiloi genetic e ʻimi i kēia mutation gene.

He aha nā hōʻailona o ka maʻi Rhabdoid?

Hiki ke ʻokoʻa nā hōʻailona ma muli o ka makahiki o ke keiki a me kahi o ke kanesa . Hoʻomaka pinepine nā hōʻailona ma kahi e ulu ana ke kanesa. Hiki i kēia ke komo pū me ka hōʻino ʻana o ke aʻalolo, ka paʻakikī o ka hanu ʻana, a i ʻole kahi puʻupuʻu i loko o ka ʻōpū o ke keiki. No ka mea, ua laha koke kēia kanesa, hiki ke ʻike koke ʻia nā hōʻailona. Hiki i nā hōʻailona ʻē aʻe ke komo pū me:

• Ka wela pinepine.
• ʻEha poʻo .
• Ke koko i loko o ka mimi ( Hematuria ) .
• Ka luaʻi a me ka luaʻi .
• Nā ʻōpū lymph pehu .
• Huhū mau, hoʻomaha ʻole (Irritability).
• ʻAʻohe ʻono o ka meaʻai .
• Ka hiamoe ʻano ʻē.
• I nā pēpē, e nui aʻe ana ke poʻo.
• Ka nalowale o ke kaulike a i ʻole ka paʻakikī i ka hele wāwae.

Inā loaʻa i kāu keiki kekahi a ʻoi aku paha o kēia mau hōʻailona, ​​​​he mea nui loa e ʻimi koke i ke kōkua lapaʻau.

Pehea?Pehea e ʻike ʻia ai kēia Tumor Rhabdoid?

E hana mua ke kauka nāna e nānā i kāu keiki i kahi hoʻokolokolo kino a nīnau iā ʻoe e pili ana i nā hōʻailona o kāu keiki. A laila e kauoha lākou i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona. Hiki i kēia mau mea ke komo pū me:

• ʻO ke scan Ultrasound : Hoʻohana kēia i nā nalu kani ikehu kiʻekiʻe e hana i kahi kiʻi (sonogram) o nā ʻōpū o loko o ke pēpē.
• CT scan: Hoʻohana kēia i nā kukuna X a me kahi kamepiula e hana i kahi kiʻi ʻekolu-dimensional (3D) o nā ʻiʻo palupalu a me nā iwi o ke keiki.
• MRI scan: Hoʻohana kēia i kahi magnet, nā nalu lekiō, a me kahi kamepiula e hana i nā kiʻi kikoʻī o nā wahi e like me ka lolo o ke keiki a me ke kaula spinal.
• Hoʻokolohua Neurological: Hoʻāʻo kēia i ka lolo o ke keiki, ke kaula iwi kuamoʻo, a me ka hana aʻalolo.
• ʻO ke kī ʻana o ka lumbar / ka pā ʻana o ka spinal: Ma kēia, ua lawe ʻia kahi hāpana o ka wai cerebrospinal (CSF) mai ke kaula spinal o ke keiki a nānā ʻia ma lalo o kahi microscope e ʻike inā he mau hunaola kanesa.

Eia nō naʻe, hiki i kēia mau scan ke hōʻike i nā puʻupuʻu rhabdoid e like me nā ʻano maʻi ʻē aʻe. No laila, lawe pinepine nā kauka i nā laʻana ʻiʻo a kauoha i nā hoʻokolohua hou aʻe. ʻO kēia mau hoʻokolohua:

• Ka hoʻāʻo ʻana i ka hoʻoilina: Lawe ʻia kahi hāpana o ke koko a i ʻole ka ʻiʻo o ke keiki a hoʻāʻo ʻia no nā mutations i loko o nā genes `SMARCB1` a me `SMARCA4`.
• Biopsy: Ma kēia kaʻina hana, hoʻohana ke kauka i kahi nila e lawe i kahi laʻana liʻiliʻi o ka puʻupuʻu. A laila nānā kahi pathologist iā ia ma lalo o kahi microscope e ʻike inā he mau hunaola kanesa. Inā loaʻa nā hunaola kanesa, hiki ke wehe ʻia ka nui o ka puʻupuʻu i ka wā o ke ʻoki ʻana a i ʻole ma kahi ʻoki ʻana ma hope.
• Immunohistochemistry: He hoʻāʻo kikoʻī loa kēia. Hoʻohana ia i nā antibodies e ʻimi i kekahi mau māka/antigens i loko o kahi hāpana o nā ʻiʻo o kāu keiki. Hiki i kēia mau māka ke kōkua i ka hoʻoholo ʻana inā he maʻi kanesa rhabdoid a i ʻole kekahi ʻano maʻi kanesa ʻē aʻe.

Pehea e mālama ʻia ai ka maʻi Rhabdoid?

ʻO ke kauka ʻokiʻoki keiki ke alakaʻi i ka mālama ʻana i kahi keiki. Hana pū ʻo ia me kahi hui o nā loea ʻē aʻe e hoʻomohala i kahi hoʻolālā lapaʻau e kūpono loa i ke keiki. Hiki ke hoʻohana pū ʻia kekahi mau lāʻau like ʻole e mālama i ka maʻi kanesa rhabdoid. Ma muli o ka laha wikiwiki ʻana o kēia maʻi kanesa, ua hōʻike nā noiʻi ʻo ka hoʻohana ʻana i nā lāʻau he nui i ka hui pū ʻana he ʻoi aku ka nui o ka pepehi ʻana i nā hunaola kanesa ma mua o ka hoʻohana ʻana i hoʻokahi wale nō.

• ʻO ke ʻoki kino: Inā ʻaʻole e wehe ka biopsy i ke kanesa, ʻo ka hana mua, inā hiki, ʻo ia ke hana i ke ʻoki kino e wehe i ka nui o ke kanesa e like me ka hiki, malia paha ʻo ia āpau.
• Kemoterapi (Chemo): ʻO kēia ka hāʻawi ʻana i nā lāʻau lapaʻau e hoʻōki i ka ulu ʻana o nā hunaola kanesa. Pepehi kēia mau lāʻau i kekahi mau hunaola kanesa a hoʻōki i ka māhele ʻana o kekahi. Eia nō naʻe, ʻaʻole hiki i kēia mau lāʻau lapaʻau ke ʻike i ka ʻokoʻa ma waena o nā hunaola maikaʻi a me nā hunaola kanesa, no laila hiki iā lākou ke hana i nā hopena ʻaoʻao.
• ʻO ke chemotherapy kiʻekiʻe me ka hoʻoili ʻana o nā cell stem: Hiki i ka chemotherapy kiʻekiʻe ke pepehi i nā cell cancer hou aʻe. Eia nō naʻe, pepehi pū ia i nā cell olakino, e like me nā cell hoʻokumu koko i loko o ka iwi iwi. No ka hoʻoponopono ʻana i kēia, lawe ʻia kekahi o ka iwi iwi o ke keiki a mālama ʻia ma mua o ka hāʻawi ʻana i ka chemotherapy kiʻekiʻe. Ma hope o ka mālama ʻana, hāʻawi ʻia ka iwi iwi i ke keiki e pani i nā cell i luku ʻia.
• Lapaʻau radiation: Hoʻohana kēia i nā kukuna X-ikehu kiʻekiʻe e hoʻēmi a luku paha i nā hunaola kanesa. Eia nō naʻe, no ka mea hiki i ka lāʻau radiation ke hoʻopilikia i ka ulu ʻana o ke keiki a me ka ulu ʻana o ka lolo, ua hoʻoponopono ʻia ka nui e like me ka makahiki a me ka nui o ke keiki.
• Nā hoʻokolohua lapaʻau: Hiki i ke kauka ke kuhikuhi i nā hoʻokolohua lapaʻau hou (nā ʻano chemotherapy hou, ka lāʻau lapaʻau i kuhikuhi ʻia, a i ʻole nā ​​​​lāʻau immunotherapy) e mālama i ka maʻi kanesa o kāu keiki.

He aha nā hopena ʻaoʻao e hiki ke loaʻa mai ka lāʻau lapaʻau?

Hiki i nā lāʻau lapaʻau maʻi kanesa, ʻoiai ke chemotherapy, ke hana i nā hopena ʻaoʻao. ʻO kēia no ka mea ʻo nā lāʻau lapaʻau i hoʻohana ʻia e pepehi i nā hunaola kanesa e pepehi pū i nā hunaola olakino. Eia nō naʻe, nalowale ka hapa nui o nā hopena ʻaoʻao ma hope o ka hoʻōki ʻana o ka lāʻau lapaʻau . Hiki iā ʻoe ke hana pū me ka hui lapaʻau o kāu keiki e hoʻokele i kēia mau hopena ʻaoʻao. ʻO nā hopena ʻaoʻao maʻamau:

• Ka nalowale o ka lauoho `(Alopecia)` .
• ʻAʻohe ʻono o ka meaʻai.
• Ka paʻa ʻana o ka ʻōpū.
• Ka maʻi pākī.
• Ka luaʻi a me ka luaʻi.
• Nā ʻeha ma ka puʻu a me ka waha.
• ʻEdema (pehu ʻana) .
• ʻAʻole hiki ke hiamoe.
• Ka luhi nui loa.
• Nā pilikia hoʻomanaʻo.

Hiki ke pale ʻia nā ʻōpū Rhabdoid?

ʻO ka mea pōʻino, ua hoʻokumu ʻia kēia mau maʻi kanesa e nā hoʻololi genetic, no laila ʻaʻohe ala e pale aku ai iā lākou . Eia nō naʻe, inā ua loaʻa i kekahi o kou ʻohana ke kanesa rhabdoid a i ʻole nā ​​​​maʻi kanesa ʻē aʻe, a ke hāpai nei ʻoe i kahi keiki, he manaʻo maikaʻi e kamaʻilio me kāu kauka e pili ana i ke aʻo ʻana i ka genetic . Hiki i ke aʻo ʻana i ka genetic ke kōkua iā ʻoe e hoʻomaopopo i kou pilikia o ka loaʻa ʻana o kahi maʻi genetic i kāu keiki.

Hiki ke ho'ōla ʻia ka Rhabdoid Tumor? Pehea lā ke ʻano o ke keiki i ka wā e hiki mai ana?

Hiki i ke kauka e mālama ana i kāu keiki ke hāʻawi iā ʻoe i ka pane pololei i kēia nīnau. Eia naʻe,ʻO ka mea pōʻino, ʻo ka hapa nui o nā keiki me ka maʻi rhabdoid malignant ʻaʻole lākou e ola ma mua o kekahi mau makahiki. Eia nō naʻe, inā ʻike ʻia ke keiki ma hope o 2 mau makahiki , ʻoi aku ka maikaʻi o ka prognosis. ʻO ka nui o ke ola no kēia maʻi kanesa e pili ana i kekahi mau kumu:

• Ka makahiki o ke keiki.
• Ma hea kahi o ke kanesa i loko o ke kino o ke keiki.
• Inā ua pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o ke kino.
• ʻEhia ka nui o ke kanesa i wehe ʻia e ke ʻoki kino.
• Pehea e pane ai ke keiki i nā lāʻau lapaʻau maʻi kanesa.

No ka mea, he mea kakaikahi loa ka maʻi rhabdoid malignant, ua hoʻokumu ʻia nā helu helu manaʻolana ola ma kahi helu liʻiliʻi loa o nā maʻi. No laila, hiki ke ʻokoʻa ka manaʻolana ola maoli o ke keiki. Hōʻike nā haʻawina ʻo ka nui o ke ola ʻelima makahiki no ka rhabdoid carcinoma o ka puʻupaʻa (RTK) ma waena o 20% a me 25% . ʻO ke ʻano kēia ma waena o 20% a me 25% o ka poʻe i ʻike ʻia me RTK e ola mau ana i ʻelima mau makahiki ma hope o ka ʻike ʻana. ʻO ka nui o ke ola ʻelima makahiki no ka atypical teratoid rhabdoid carcinoma (ATRT) ma waena o 32% a me 50%.

He mea maʻamau ke kaumaha nui a me ke kaumaha ke lohe ʻoe i kahi mea e like me kēia. Akā e hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi.

He aha kaʻu e nīnau aku ai i ke kauka?

He mea maʻamau ka loaʻa ʻana o nā nīnau he nui ke ʻike ʻoe ua loaʻa i kāu keiki ka maʻi kanesa. Eia kekahi mau nīnau e hoʻomanaʻo e nīnau i kēlā manawa:

• He aha ke ʻano o ka maʻi kanesa i loaʻa i kaʻu keiki?
• He aha ke kahua o ke kanesa o kaʻu keiki?
• He aha nā hoʻokolohua e pono ai kaʻu keiki?
• He aha nā koho lapaʻau no ke kanesa o kaʻu keiki?
• He aha nā kūlana o ka holomua ʻana o kēia lāʻau lapaʻau?
• He aha nā hoʻokolohua lapaʻau i loaʻa no kaʻu keiki e komo ai?
• Pehea mākou e ʻike ai inā ua holomua ka lāʻau lapaʻau?

Pehea e hana ʻia ai ka nānā ʻana i ka wā a ma hope o ka mālama ʻana?

Ma loko o ka mālama ʻana i ke kanesa o kāu keiki, pono e hana hou ʻia kekahi o nā hoʻokolohua i hoʻohana ʻia no ka ʻike ʻana i ka maʻi. Hoʻohana ʻia kēia mau hoʻokolohua e ana i ka maikaʻi o ka hana ʻana o ka lāʻau. Ma muli o nā hopena o kēia mau hoʻokolohua, e hana pū kāu hui lapaʻau me ʻoe e hoʻoholo i nā hana aʻe āu e hana ai. Hiki i kēia ke komo pū me ka hoʻomau ʻana, ka hoʻololi ʻana, a i ʻole ka hoʻōki ʻana i ka lāʻau. Ma hope o ka pau ʻana o kāu keiki i ka mālama ʻana i ke kanesa, pono lākou e hoʻi mai no nā hoʻokolohua a me nā hoʻokolohua hahai pinepine . I loko o kēia mau hahai ʻana, e nānā kāu kauka e ʻike inā ua hoʻomaikaʻi ke ʻano o kāu keiki a inā paha ua hoʻi mai ka maʻi. Hiki ke mau kēia hahai ʻana no kekahi mau makahiki ma hope o ka mālama ʻana.

ʻO ka mea hope loa, e hoʻomanaʻo... (Leka Lawe-Home)

Ua ʻike mākou he mea kaumaha ka lohe ʻana i ka lono ua loaʻa i kāu keiki ka maʻi kanesa. Akā, he mea nui e hoʻomanaʻo ʻaʻole ʻoe hoʻokahi.. ʻO ka hui holoʻokoʻa e mālama nei i kāu keiki, me nā kauka a me nā kahu maʻi, eia mākou e kōkua iā ʻoe a me kou ʻohana i kēia manawa paʻakikī. Aia nā lāʻau lapaʻau no nā ʻōpū rhabdoid, a aia ka manaʻolana no kāu keiki . E kamaʻilio me ke kauka o kāu keiki e pili ana i ke komo ʻana i kahi hui kākoʻo maʻi kanesa no nā mākua a i ʻole nā ​​ʻohana. Hiki iā ʻoe ke loaʻa ka hōʻoluʻolu nui a me ka hoʻoikaika ʻana ma ka haʻi ʻana i kāu moʻolelo a me ka lohe ʻana e pili ana i nā ʻike o haʻi.