Loaʻa i kāu keiki kahi puʻupuʻu lolo ʻē e like me kēia? E kamaʻilio kākou e pili ana iā AT/RT (Atypical Teratoid/Rhabdoid Tumor)

Ma ke ʻano he makua, ʻo kekahi o nā nūhou paʻakikī a kaumaha loa āu e lohe ai, ʻo ia ka ʻike ʻana ua loaʻa i kāu keiki ka maʻi kanesa. He mea maʻamau ka makaʻu, ka hopohopo, a me ke kaumaha ke lohe ʻoe e pili ana i kahi maʻi kanesa koʻikoʻi e like me AT/RT (atypical teratoid/rhabdoid tumor). Akā, he mea nui e hoʻomanaʻo ʻaʻole ʻoe hoʻokahi i kēia huakaʻi paʻakikī. Aia pū ka hui lapaʻau o kāu keiki me ʻoe i kēlā me kēia ʻanuʻu o ke ala.

He aha ka AT/RT (Atypical Teratoid/Rhabdoid Tumor)?

I ka ʻōlelo maʻalahi, ʻo AT/RT kahi ʻano maʻi kanesa e ulu wikiwiki loa a hoʻomaka i loko o ka ʻōnaehana nerve waena (CNS). Hana ʻia kā mākou ʻōnaehana nerve waena i ka lolo a me ke kaula spinal. Hoʻomaka kēia mau hunaola kanesa i loko o ka lolo a i ʻole ke kaula spinal. Ma kahi o ka hapalua o ka poʻe me AT/RT, hoʻomaka ia ma ka cerebellum a i ʻole ka brainstem. Hoʻopilikia nui kēia ʻano i nā keiki ʻōpio.

Hiki ke ʻike koke ʻia nā hōʻailona. I ka wā mua, manaʻo paha ʻoe he maʻi liʻiliʻi kāu keiki, e like me ke anu maʻamau. Akā, ʻaʻole e nalowale kēia mau hōʻailona me ka manawa a i ʻole me ka mālama maʻamau. ʻO ia ka manawa e kauoha ai ke kauka i nā hoʻokolohua e ʻike ai i ka mea i pilikia maoli me kāu keiki. Ke ʻike ʻia ʻo AT/RT, e kamaʻilio kāu kauka me ʻoe e pili ana i nā koho lapaʻau maikaʻi loa no ke kūlana o kāu keiki.

ʻO kaʻoiaʻiʻo, ʻaʻole maikaʻi loa nā hopena o kēia ʻano maʻi kanesa. No ka mea, laha koke ia, a i kekahi manawa he paʻakikī ke hoʻopau loa. No laila, hiki ke hoʻopōkole ʻia ke ola o ke keiki. Eia naʻe, ʻaʻole i loaʻa i nā kānaka a pau kahi hopena maikaʻi ʻole. Ke hoʻāʻo mau nei nā kānaka noiʻi e ʻimi i nā lāʻau hou e hoʻonui i nā manawa e hoʻopakele ai i nā keiki.

He mea maʻamau ka manaʻo nui i nā nīnau a me ke kānalua ke ʻike ʻia ʻoe he maʻi kanesa, ʻoiai he maʻi kanesa kakaikahi e like me AT/RT. Akā e hoʻomanaʻo, aia pū ka hui lapaʻau o kāu keiki me ʻoe ma kēia huakaʻi. Nui ke kākoʻo no ka ʻohana a me nā mea mālama.

He aha ke ʻano o ka maʻi kanesa ʻo AT/RT?

He ʻano maʻi ʻaʻai lolo kakaikahi loa ʻo AT/RT e hoʻopilikia ana i ka ʻōnaehana nerve waena (CNS), ʻo ia hoʻi, ka lolo a me ke kaula spinal.

Pehea ka laha ʻole o kēia?

Ua ʻike ʻia ma kahi noiʻi ma ʻAmelika Hui Pū ʻIa he 470 wale nō kānaka e noho ana me AT/RT. ʻO ia hoʻi, he 73 wale nō kānaka i ʻike ʻia me ke ʻano i kēlā me kēia makahiki. ʻO ka mea kupanaha, mai loko mai o kēlā mau 73, he 4 wale nō nā mākua. No laila hiki iā ʻoe ke noʻonoʻo i ka nui o kona hopena i nā keiki ʻōpio, a pehea ka kakaikahi o ia mea.

He aha nā hōʻailona o ka AT/RT?

Hiki ke ʻokoʻa nā hōʻailona o AT/RT mai kēlā kanaka a kēia kanaka. Aia lākou i nā mea e like me ka makahiki o ke keiki a me kahi o ka puʻupuʻu. Eia naʻe, hiki i kēia mau hōʻailona ke ʻike koke ʻia a lilo i mea koʻikoʻi koke:

• ʻEha poʻo:He mea maʻamau kēia i ke kakahiaka. I kekahi manawa e emi ana ma hope o ka luaʻi ʻana.
• Ka luaʻi a me ka luaʻi: ​​Ka luaʻi pinepine a me ka luaʻi.
• Luhi: Manaʻo ke keiki i ka luhi i nā manawa a pau.
• Nā loli i ka pae hana: ʻAʻole holo a pāʻani e like me ma mua, me ka palaualelo.
• Ka paʻakikī i ka hele wāwae, ka mālama ʻana i ke kaulike, a me ka hoʻonohonoho ʻana: Manaʻo ia ua like ʻoe me ke kaulike ʻole i ka wā e hele ana, a paʻakikī ke hopu i nā mea.

E noʻonoʻo, no kekahi mau lā i kēia manawa, ua ala aʻe kāu keiki liʻiliʻi i ke kakahiaka me ka ʻōlelo ʻana, "E Māmā, ʻeha koʻu poʻo," a i ʻole e luaʻi ana. Palaualelo loa ʻo ia e hana i nā hana kula, a me he mea lā ua hiamoe mau ʻo ia. Inā hoʻāʻo kāu keiki, ka mea i holo a pāʻani ma mua, e noho ma kahi hoʻokahi, he hōʻailona paha ia o kekahi mea e like me kēia.

I nā pēpē liʻiliʻi, hiki i kēia puʻupuʻu ke hoʻonui iki i ke poʻo. Eia nō naʻe, i nā keiki makua, ʻaʻole paha e ʻike maopopo ʻia.

He aha ke kumu o ka AT/RT?

ʻO ke kumu nui o AT/RT he mutation i loko o kekahi o nā genes ʻelua, ʻo SMARCB1 a i ʻole SMARCA4. Ua kapa ʻia kēia mau mea he "tumor suppressor genes." I ka ʻōlelo maʻalahi, hana kēia mau genes i kahi protein e kaohi ana i ka wikiwiki a me ka nui o nā cell i loko o ko mākou kino. No laila, inā he loli a kīnā paha i loko o kēia mau genes, hoʻomaka nā cell e ulu wikiwiki a me ke kāohi ʻole ʻia. ʻO ia ke kumu e hana ai kēia mau tumors.

He mea hoʻoilina anei kēia?

ʻAe, hiki i kekahi mau hihia o AT/RT ke lilo i genetic. ʻO ke ʻano kēia, hiki ke hoʻoili ʻia ka germline mutation e hoʻoulu ai i kēia maʻi kanesa mai nā mākua a i ke keiki. Eia nō naʻe, i ka hapanui o nā hihia, ʻaʻole ia he hoʻoilina. ʻO ke ʻano kēia, hiki ke hana pinepine ʻia ka mutation i loko o kahi keiki, ʻoiai inā ʻaʻohe mea o ka ʻohana i loaʻa i ke ʻano ma mua.

ʻO wai ka mea i pilikia nui?

Hoʻopilikia pinepine ʻo AT/RT i nā keiki ma lalo o 3 mau makahiki. Eia nō naʻe, he mea nui e hoʻomanaʻo e hiki ke ulu i loko o nā keiki o kēlā me kēia makahiki, a i ʻole i nā pākeke.

Pehea e ʻike ʻia ai ʻo AT/RT?

Hoʻomaopopo ke kauka i ka AT/RT ma ka hana ʻana i kahi hoʻokolohua kino, kahi hoʻokolohua neurological, a me kekahi mau hoʻokolohua kūikawā ʻē aʻe. I loko o kēia mau hoʻokolohua mua, e nīnau ke kauka iā ʻoe e pili ana i nā hōʻailona o kāu keiki, ka mōʻaukala olakino i hala, a inā paha ua loaʻa i kekahi o kou ʻohana kēia maʻi.

Eia kekahi, ʻo nā hoʻokolohua i hana ʻia:

• ʻO ke kiʻi MRI (Magnetic Resonance Imaging): Hiki i kēia ke kiʻi i nā kiʻi kikoʻī o ka lolo a me ke kaula kuamoʻo. Hiki i kēia ke kōkua i ka hoʻoholo ʻana i kahi a me ka nui o ka puʻupuʻu.
• ʻO ke kī ʻana o ka lumbar: Pili kēia i ka lawe ʻana i kahi hāpana liʻiliʻi o ka wai a puni ke kaula spinal (wai cerebrospinal) a hoʻāʻo iā ia e ʻike inā ua pālahalaha nā hunaola kanesa.
• Hoʻāʻo hoʻoilina:Hana ʻia kēia hoʻāʻo e ʻike inā he mau loli i nā genes SMARCB1 a i ʻole SMARCA4 i ʻōlelo mua ʻia.
• Biopsy: Pili kēia i ka lawe ʻana i kahi ʻāpana liʻiliʻi o ka puʻupuʻu a nānā iā ia ma lalo o kahi microscope e hōʻoia i ke ʻano o ka maʻi kanesa.

He aha nā lāʻau lapaʻau no AT/RT?

Hiki i ke kauka o kāu keiki ke kuhikuhi i kēia mau mea ma ke ʻano he mau lāʻau lapaʻau no AT/RT:

ʻO ke ʻoki kino e wehe i ka puʻupuʻu

E wehe ke kauka neurosurgeon i ka puʻupuʻu i ka hiki me ke ʻoki ʻana. Eia nō naʻe, pono paha ka chemotherapy a me ka radiation therapy e luku i nā hunaola kanesa i koe ma hope o ke ʻoki ʻana.

Kemoterapia

He ʻano lāʻau lapaʻau kēia e pepehi ai i nā hunaola kanesa a i ʻole e kāohi iā lākou mai ka māhele ʻana. I kekahi manawa, hāʻawi ʻia kēia lāʻau lapaʻau ma ka waha a i ʻole ma ke ʻano he inikini i loko o kahi aa koko a i ʻole ʻiʻo (chemotherapy systemic). ʻO kekahi ala ʻē aʻe, ʻo ia ke inikini pololei i ka lāʻau lapaʻau i loko o ke kahe a puni ke kaula spinal (chemotherapy intrathecal).

Hoʻōla Pāhawewe

Hoʻohana kēia i nā kukuna X-ikehu kiʻekiʻe e pepehi i nā hunaola kanesa a i ʻole e hoʻōki iā lākou mai ka ulu ʻana. Hoʻokele pololei kahi mīkini i kēia mau kukuna radiation i ka puʻupuʻu. Hāʻawi ʻia nā keiki ma lalo o 3 mau makahiki i ka radiation therapy ma nā dosis haʻahaʻa loa no ka mea hiki ke hoʻopilikia i ko lākou ulu ʻana a me ka ulu ʻana.

Hoʻoili Kelepona Kumu

Ma hope o ka chemotherapy nui, hana ʻia kahi hoʻoili cell stem e pani i nā cell i nalowale mai ke kino o ke keiki. Ma mua o ka hoʻomaka ʻana o ka chemotherapy, lawe nā kauka i kekahi mau cell stem mai ke keiki a mālama iā lākou. A laila, ke pau ka chemotherapy, hoʻihoʻi ʻia nā cell i loko o ke keiki ma o kahi vein (intravenously).

Hoʻōla i kuhikuhi ʻia

He lāʻau lapaʻau hou kēia no AT/RT e hoʻāʻo ʻia nei i loko o nā hoʻokolohua lapaʻau. Ma kēia, hana kekahi mau lāʻau lapaʻau ma ke ālai ʻana i kekahi mau mea e kōkua ai i ka ulu ʻana a me ka māhele ʻana o nā hunaola kanesa.

Hoʻōla lāʻau pale

He lāʻau lapaʻau nō hoʻi kēia i loko o nā hoʻokolohua lapaʻau no AT/RT. Hana ia ma ke kōkua ʻana i ka ʻōnaehana pale ponoʻī o ke keiki e hakakā i ke kanesa.

Mālama Palekana

Hana ʻia kēia e hōʻemi i nā hōʻailona o ke keiki, hoʻemi i ka ʻeha, hāʻawi i ka hōʻoluʻolu, a hoʻomaikaʻi i ko lākou ola.

He mea nui: E hana ke kauka i kēia mau hoʻokolohua a pau a hoʻoholo i ka lāʻau lapaʻau maikaʻi loa no kāu keiki. I kekahi manawa, hiki ke hāʻawi ʻia ma mua o hoʻokahi lāʻau lapaʻau. He mea nui e hoʻomau ma lalo o ka nānā ʻana o ke kauka a loaʻa nā hoʻokolohua ma hope o ka lāʻau lapaʻau. Penei e hiki ai iā ʻoe ke ʻike inā ua holomua ka lāʻau lapaʻau a inā ua hoʻi mai ke kanesa.

ʻO wai ka poʻe ma ka hui lapaʻau o kāu pēpē?

Hiki iā ʻoe ke ʻike i nā ʻano kauka like ʻole a me nā mea lawelawe mālama ola i ka wā e mālama ai iā AT/RT. Hiki i ka hui lapaʻau o kāu keiki ke komo pū me:

• Nā kauka pediatric a i ʻole nā ​​​​kauka ʻohana (nā kauka mālama mua)
• Nā kauka ʻokiʻoki lolo
• Nā kauka oncologists radiation
• Nā kauka lolo
• Nā kākā'ōlelo genetic

Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?

ʻAe, hiki ke loaʻa nā hopena ʻaoʻao me nā lāʻau lapaʻau āpau no AT/RT. E wehewehe ke kauka o kāu keiki iā ʻoe i kēia mau hopena ʻaoʻao a me nā mea e makaʻala ai i ka wā o ka lāʻau lapaʻau. Hiki ke loaʻa koke kekahi mau hopena ʻaoʻao, aʻo kekahi ʻaʻole paha e ʻike ʻia a hiki i nā mahina ma hope. Inā he mau nīnau kāu, mai kānalua e nīnau i kāu kauka.

He aha ka Nānā/Wānana no AT/RT?

He ʻano maʻi kanesa ikaika loa ʻo AT/RT, a inā ʻaʻole hiki ke hoʻōla piha ʻia ka lāʻau lapaʻau, hiki ke pau koke ke ola o ke keiki. Eia nō naʻe, ʻokoʻa loa kēia mai kēlā kanaka a kēia kanaka. No ka laʻana, inā hiki ke wehe loa ʻia ka puʻupuʻu me ke ʻoki ʻana, aia kahi manawa e hoʻōla ʻia ai.

Hoʻoholo ʻia ka manaʻo e kekahi mau kumu:

• Ka makahiki o kāu keiki.
• Hoʻoilina hoʻoilina.
• Pehea ka palekana e hiki ai ke wehe ʻia ka puʻupuʻu ma o ke ʻoki ʻana?
• Inā ua pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o ke kino.

ʻO kāu kauka wale nō ke hāʻawi iā ʻoe i ka ʻike pololei loa e pili ana i ka wānana o kāu keiki. Inā he mau nīnau kāu, e kamaʻilio me ka hui lapaʻau o kāu keiki.

He aha ka nui o ke ola a me ka ho'ōla ʻana no AT/RT?

No ka mea, he ʻano maʻi kanesa kakaʻikahi ʻo AT/RT, ʻaʻole lawa ka ʻikepili e wānana pololei i ka nui o ke ola a me ka hoʻōla ʻana no kēia maʻi. E hiki i ke kauka o kāu keiki ke hāʻawi iā ʻoe i ka ʻike hou loa e pili ana i ke kūlana o kāu keiki.

Hiki ke pale ʻia ʻo AT/RT?

ʻO ka mea pōʻino, ʻaʻohe ala e pale aku ai iā AT/RT i kēia manawa. Inā ʻoe e manaʻolana ana e loaʻa hou kahi keiki, he manaʻo maikaʻi paha e kamaʻilio me kahi kākāʻōlelo genetic e ʻike ai inā he hoʻololi genetic kou a i ʻole kāu hoa e hiki ai ke hana iā AT/RT a he aha ka pilikia no kāu keiki e hoʻoilina ai.

He aha nā nīnau āu e nīnau ai i ke kauka o kāu pēpē?

He mea maʻamau ka loaʻa ʻana o nā nīnau he nui i loko o kou manaʻo ma hope o ke aʻo ʻana e pili ana iā AT/RT. E hōʻoia e nīnau i ke kauka o kāu keiki i kēia mau nīnau:

• ʻAuhea ke puʻupuʻu ma ke kino o kaʻu keiki?
• He aha ke ʻano o ka lāʻau lapaʻau āu e paipai nei?
• Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?
• E hoʻopilikia anei ka lāʻau lapaʻau i ka ulu ʻana a me ka ulu ʻana o kaʻu keiki?
• He aha ka wānana o kaʻu keiki?

ʻO ka mea hope loa, ʻo ka mea nui loa (Leka Lawe-Home)

"Ua loaʻa i kāu keiki ke kanesa." ʻO kēia kekahi o nā ʻōlelo paʻakikī loa a ka makua e lohe ai. Ke hopohopo nei paha ʻoe no ka mea e hiki mai ana, e pili ana i ka wā e hiki mai ana o kāu keiki. ʻOiai he nui nā mea kānalua e hele mai me ke kanesa, e hoʻomanaʻo e hele pū ana ka hui lapaʻau o kāu keiki me ʻoe i kēlā me kēia ʻanuʻu o ke ala. E kōkua lākou iā ʻoe e hoʻokele i ka lāʻau lapaʻau, hoʻokele i nā hōʻailona, ​​a mālama i kāu keiki i ko lākou ola a pau. Ke hoʻomau nei ka noiʻi e aʻo hou e pili ana i ka AT/RT (atypical teratoid/rhabdoid tumor) a loaʻa nā ala hou e mālama ai. No laila, mai haʻalele i ka manaʻolana.

ʻAT /RT, maʻi ʻaʻai lolo, maʻi ʻaʻai kamaliʻi, nā hōʻailona maʻi ʻaʻai, ka mālama ʻana i ka maʻi ʻaʻai, nā hoʻololi genetic, ʻōnaehana nerve