Ke hoʻopiʻi pinepine nei kāu keiki ua ʻeha kona wāwae a lima paha? Malia paha ʻaʻole e nalowale kahi palapū mai ka hāʻule ʻana i ka wā e pāʻani ana ma hope o nā mahina? Manaʻo pinepine mākou i kēia mau mea he mau ʻeha liʻiliʻi a i ʻole nā ʻeha i hana ʻia e ka hana kolohe a nā keiki. Akā i kekahi manawa, ʻo kahi hōʻailona e hoʻomaka maʻalahi e like me kēia hiki ke lilo i hōʻailona o kahi mea ʻoi aku ka koʻikoʻi. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi kanesa kakaikahi, akā koʻikoʻi e pono ai kākou a pau e makaʻala. ʻO ia ʻo Ewing Sarcoma.
I ka pōkole, he aha ka Ewing Sarcoma?
He ʻano maʻi ʻaʻai laha ʻole ka Ewing sarcoma e ulu ana i loko o nā iwi a i ʻole nā ʻiʻo palupalu a puni lākou . ʻO nā ʻiʻo palupalu e komo pū ana me ko kākou mau ʻiʻo, nā tendon, a me nā ligaments. ʻO ka hapa nui o kēia mau puʻupuʻu e ʻike ʻia ma nā wahi e like me ka ʻūhā, nā iwi ʻaoʻao, ka poʻohiwi, ka ʻūhā, a i ʻole ka iwi ʻāʻī.
ʻOi aku ka maʻamau o kēia ʻano maʻi i nā keiki i ka wā ʻōpio, i ka wā e ulu wikiwiki ana ko lākou mau iwi. ʻOi aku ka maʻamau, hoʻopilikia ia i ka poʻe ma waena o 10 a me 20 mau makahiki. Eia nō naʻe, hiki iā ia ke hoʻopilikia i nā keiki ʻōpio a me nā mākua ʻōpio i ko lākou mau makahiki 20 a me 30 mua.
Aia kekahi mau ʻano nui o ka sarcoma Ewing?
ʻAe, ua ʻike nā kauka i ʻekolu ʻano nui o kēia. E nānā kākou i ke ʻano o lākou.
| ʻAno maʻi kanesa | He wehewehe maʻalahi |
|---|---|
| ʻO ka sarcoma iwi ʻo Ewing | ʻO kēia ke ʻano maʻamau. E like me ka inoa e hōʻike nei, kū pololei kēia maʻi kanesa i loko o ka iwi. |
| ʻO ka puʻupuʻu Ewing keu (EOE) | Maanei, ulu ka maʻi ʻaʻai i loko o nā ʻiʻo palupalu a puni nā iwi, e like me nā ʻiʻo a me nā ʻiʻo momona. |
| ʻO ka maʻi neuroectodermal mua peripheral (PPNET) | He ʻokoʻa iki kēia ʻano. Hiki ke hoʻomaka ma ka iwi a i ʻole ma nā ʻiʻo palupalu. Hoʻomaka ia ma nā ʻiʻo aʻalolo. |
He aha nā hōʻailona o kēia maʻi? Nā mea e pono iaʻu e makaʻala ma ke ʻano he makua
Hiki ke huikau maʻalahi nā hōʻailona o kēia maʻi me nā maʻi maʻamau ʻē aʻe, no laila he mea nui e makaʻala i kēia.
E noʻonoʻo e pāʻani ana kāu keiki i ka cricket a ke ʻōlelo mau nei ʻo ia ua ʻeha kona poʻohiwi. Manaʻo ʻoe he ʻeha wale nō ia e kū mai ana i ka wā e kīloi ai ʻoe. Akā inā ua mau ka ʻeha no nā mahina, ʻoi aku hoʻi i ka pō, a he pehu liʻiliʻi ma laila, ʻaʻole ia he manaʻo maikaʻi e hoʻokuke wale iā ia.
ʻO ka mea nui loa, inā hoʻomau ke keiki i ka ʻōhumu no ka ʻeha, mai hoʻowahāwahā iā ia. ʻOi aku ka maikaʻi o ke ʻike ʻana i ke kauka, ʻoiai inā ʻaʻohe kumu maopopo no ka ʻeha.
Aia ma lalo iho nā hōʻailona nui i ʻike ʻia ma ka sarcoma Ewing.
| Hōʻailona | ʻIke hou aku |
|---|---|
| ʻEha i nā iwi | ʻO kēia ka hōʻailona maʻamau. Hiki ke hele mai ka ʻeha a hele aku. Hiki ke ʻoi aku ka ʻino o ka ʻeha i ka pō, ʻoiai inā he koʻikoʻi ia e hoʻāla i ke keiki mai ka hiamoe. |
| He puʻupuʻu a he pehu paha | Hiki ke ʻike ʻia ke kanesa ma ke ʻano he puʻupuʻu a pehu paha. Hiki ke mehana ke pā a hiki ke ʻeha. Hiki ke ʻike ʻia kēia mau mea ma nā lima, nā wāwae, a i ʻole ka umauma. |
| Kuni me ke kumu ʻole | Hiki paha ke loaʻa ke kuni mau me ke kumu ʻole (e like me ka ihu wai, ke kuni, a i ʻole ke anu). |
| Ka haki ʻana o nā iwi me ke kumu ʻole | Hiki i ke kanesa ke hoʻonāwaliwali i ka iwi, a inā ʻaʻole ia he ulia nui (e like me ke ala ʻana mai kahi moe), hiki iā ia ke haki. Ua kapa nā kauka i kēia he 'pathological fracture'. |
| Nā hiʻohiʻona ʻē aʻe | Hiki i nā mea e like me ka pohō kaumaha koke a me ka luhi mau i nā manawa a pau ke hiki mai, akā ʻike pinepine ʻia kēia mau mea ke pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o ke kino. |
No ke aha e loaʻa ai kēia ʻano maʻi?
Hiki mai kēia nīnau i nā mākua he nui. Manaʻo paha ʻoe, "Ua hana hewa anei mākou?" Akā, ʻaʻole ia ka ʻoiaʻiʻo.
Hoʻokumu ʻia ka sarcoma Ewing e kahi hoʻololi genetic e hana ʻia ma hope o ka hānau ʻana o kahi keiki . I ka ʻōlelo maʻalahi, hui pū ʻelua mau genes i loko o kā mākou mau cell (EWSR1 a me FLI1) e hana i kahi gene hewa hou. Hoʻoulu kēia gene hou i nā cell e māhelehele me ka ʻole o ke kāohi a hana i kahi puʻupuʻu kanesa.
ʻO ka mea nui, ʻaʻole kēia he maʻi hoʻoilina. Eia kekahi, ʻaʻole i ʻike nā kānaka noiʻi ua hoʻokumu ʻia e nā kumu o waho, e like me ka puhipaka a i ʻole ka ʻike ʻana i nā kemika, e like me nā ʻano maʻi ʻē aʻe. ʻO kēia no ka mea e ulu pinepine ia i nā keiki ʻōpio a me nā mākua ʻōpio ʻaʻole i loaʻa ka manawa kūpono e ʻike ʻia i ia mau mea no ka manawa lōʻihi. No laila, ʻaʻole kēia he mea i hana ʻia e kekahi hewa.
Aia kekahi mau mea pilikia?
ʻOiai hiki i kekahi ke loaʻa i kēia maʻi, ua ʻike ʻia kekahi mau hui he kiʻekiʻe iki aʻe ka pilikia.
- Makahiki: ʻO ka poʻe ma waena o 10 a me 20 mau makahiki ka poʻe i ka pilikia nui loa.
- Kāne: ʻOi aku ka nui o ka loaʻa ʻana o nā kāne ma mua o nā wahine.
- Lāhui: ʻOi aku ka maʻamau o kēia maʻi i ka poʻe keʻokeʻo ma mua o ka poʻe ʻĀkia a ʻeleʻele paha.
Pehea e ʻike pololei ai nā kauka i kēia maʻi?
Ke hele ʻoe e ʻike i ke kauka no ka mea ke kānalua nei ʻoe i nā hōʻailona o kāu keiki, ʻo ka mea mua āna e hana ai, ʻo ia ke nānā pono i kāu keiki. E nānā ʻo ia i kekahi ʻeha a pehu paha, e nīnau iā ʻoe a me kāu keiki e pili ana i nā hōʻailona, a laila e kauoha i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona.
1. Nā hoʻāʻo kiʻi: Lawe kēia i nā kiʻi o nā iwi a me nā ʻiʻo palupalu i loko o ke kino.
- Hoʻokolohua X-ray
- Nānā CT
- Nānā MRI
- Nānā PET
- Nānā iwi
2. Biopsy: ʻO kēia ka hoʻāʻo e hōʻoia i ka maʻi 100% . Maanei, lawe ʻia kahi ʻāpana liʻiliʻi loa o ka ʻiʻo mai ka puʻupuʻu a nānā ʻia ma lalo o kahi microscope. ʻO kēia ka mea e haʻi pololei iā ʻoe inā he maʻi kanesa a i ʻole ka sarcoma a Ewing.
3.Nā hoʻāʻo koko: ʻO ka helu koko piha (CBC) a me nā pae enzyme kikoʻī ʻē aʻe (e like me LDH) hiki ke hāʻawi i kahi manaʻo o ke ʻano o ke kanesa a inā ua pālahalaha.
He aha nā lāʻau lapaʻau no kēia?
Hoʻōla ʻia ka sarcoma Ewing e kahi hui o nā kauka oncologists. Hiki ke ʻokoʻa ka hoʻolālā lapaʻau mai kēlā me kēia mea maʻi a i kēia mea maʻi. Aia ia i ka nui o ka puʻupuʻu, kona wahi, a inā ua pālahalaha i nā wahi ʻē aʻe.
ʻO nā ʻano lapaʻau nui:
- Chemotherapy: ʻO kēia ka hāʻawi ʻana i ke kino i nā lāʻau lapaʻau e pepehi ai i nā hunaola kanesa. ʻO ka maʻamau, hāʻawi mua ʻia ka chemotherapy e hoʻēmi i ka puʻupuʻu. A laila hāʻawi hou ʻia ka chemotherapy ma hope o ke ʻoki ʻana e pepehi i nā hunaola kanesa i koe.
- ʻOki kino: Ma hope o ka emi ʻana o ka puʻupuʻu me ka chemotherapy, e wehe loa ʻia ia ma o ke ʻoki kino.
- Lapaʻau Radiation: I kekahi mau hihia, hoʻohana ʻia nā kukuna ikehu kiʻekiʻe e luku i nā pūnaewele i koe ma hope o ke ʻoki ʻana a inā ʻaʻole hiki i ke ʻoki ke hoʻopau loa i ka puʻupuʻu.
Ma kekahi mau ʻāina i hoʻomohala ʻia, hoʻohana ʻia nā lāʻau lapaʻau e like me ka hoʻoili ʻana o nā cell kumu autologous inā ʻaʻole i laha ka maʻi kanesa i ka iwi iwi. Hiki paha iā ʻoe ke komo i nā hoʻokolohua lapaʻau e noiʻi ana i nā lāʻau lapaʻau hou. Hiki iā ʻoe ke kamaʻilio me kāu kauka e pili ana i kēia e ʻike hou aku.
Nā hopena ʻaoʻao a me nā hopena lōʻihi o ka lāʻau lapaʻau
ʻAʻole maʻalahi ka mālama ʻana i ke kanesa. Hiki i ka chemotherapy a me ka radiation therapy ke hana i nā hopena ʻaoʻao pōkole e like me ka hāʻule ʻana o ka lauoho, ka luaʻi ʻana, a me ka luhi. Hiki nō hoʻi ke loaʻa nā hopena lōʻihi (nā hopena lohi) e hiki ke ʻike ʻia i nā mahina a i ʻole nā makahiki ma hope o ka pau ʻana o ka mālama ʻana.
- Nā hopena ma nā ʻōpū o loko (puʻuwai, nā puʻupaʻa)
- Nā hopena i ka ulu ʻana o ke keiki
- Nā pilikia olakino noʻonoʻo (hopohopo, kaumaha)
- Nā hopena ma ke aʻo ʻana a me ka hiki ke hoʻomanaʻo
- Nā hopena i ka hānau ʻana i ka wā e hiki mai ana
No laila, he mea nui e hoʻomau i ka mālama ʻana a ke kauka, i ka wā a ma hope o ka lāʻau lapaʻau.
Pehea e hiki ai iaʻu, ma ke ʻano he makua, ke kōkua i kaʻu keiki?
Ke ʻike ʻia ke keiki me ka maʻi kanesa, e hiolo ka ʻohana holoʻokoʻa. He mea maʻamau kēlā. Akā i loko o kēia manawa paʻakikī, pono kāu keiki iā ʻoe ma mua o ka wā ma mua.
E noʻonoʻo e pili ana i ia mea, ʻo ka wā ʻōpio he manawa ia e piʻi a haʻahaʻa mau ai nā manaʻo o nā keiki, a noʻonoʻo nui lākou i ko lākou helehelena a me kā lākou mau hoaaloha. ʻO ka hakakā ʻana i ka maʻi kanesa i ia manawa hiki ke lilo i mea kaumaha hiki ʻole iā lākou ke amo.
- E hoʻolohe me ke ahonui:E ʻae iā lākou e hōʻike i ko lākou mau makaʻu, huhū, a me ke kaumaha. ʻOi aku ka maikaʻi o ka hoʻolohe ʻana i kā lākou mea e ʻōlelo ai ma mua o ka ʻōlelo ʻana, "Mai noʻonoʻo e pili ana i ia mea."
- Ke ola o kēlā me kēia lā: E kaumaha loa paha lākou ʻaʻole hiki iā lākou ke hele i ke kula a pāʻani paha me nā hoaaloha ma muli o ka lāʻau lapaʻau. E paipai iā lākou e pili mau me nā hoaaloha i ka hiki (e like me ke kelepona wikiō) a komo i nā hana leʻaleʻa hiki iā lākou ke hana ma ka home.
- E noʻonoʻo hoʻi iā ʻoe iho: No ka mālama ʻana i kāu keiki, pono mua ʻoe e ikaika. Inā paʻakikī iā ʻoe ke hoʻoponopono i kēia, e kamaʻilio me kahi mea āu e hilinaʻi ai. Inā pono, e ʻimi i ke aʻoaʻo noʻonoʻo.
- E hana pū me ka hui lapaʻau: E ʻike pono e pili ana i ke kūlana o kāu keiki, ka lāʻau lapaʻau, a me nā hopena ʻaoʻao. Mai makaʻu e nīnau.
He huakaʻi kēia a kākou e kū pū nei ma ke ʻano he ʻohana. Hiki iā kākou ke lanakila ma luna o kēia pilikia me ke kākoʻo a me ke aloha kekahi i kekahi.
Leka Lawe-Home
- He ʻano maʻi kanesa laha ʻole ʻo Ewing Sarcoma e hoʻopilikia nui ana i nā iwi a me nā ʻiʻo palupalu o nā keiki a me nā ʻōpio.
- Inā loaʻa iā ʻoe ka ʻeha mau o ka iwi i wehewehe ʻole ʻia (ʻoi aku hoʻi i ka pō), ka pehu ʻana, a i ʻole kahi puʻupuʻu, mai hoʻowahāwahā iā ia a e ʻike koke i ke kauka.
- Hoʻokumu ʻia kēia maʻi e kahi loli kaulele ʻole o nā genes, ʻaʻole ma ka hewa o nā mākua a i ʻole ke keiki.
- ʻOiai he paʻakikī nā ʻano lapaʻau (chemotherapy, ʻoki kino, radiation), hāʻawi lākou i nā hopena holomua loa.
- I loko o kēia huakaʻi paʻakikī, pono ke keiki i ka mālama olakino, a me ke aloha, ka mālama, a me ke kākoʻo naʻau o nā ʻohana.
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