Ua haʻi aku anei ʻoe i kāu keiki e pili ana i ka High-Grade Glioma? E kamaʻilio kākou e pili ana.

He mea paʻakikī ke wehewehe i ke ʻano o ka lohe ʻana he makua kāu keiki i ka maʻi ʻaʻai lolo. Nui nā nīnau e hiki mai ana i ka noʻonoʻo i ka manawa e like me kēia. No laila, i kēia lā e kamaʻilio mākou e pili ana i ka High-Grade Glioma, kahi ʻano puʻupuʻu lolo koʻikoʻi a laha koke. Manaʻolana mākou e hāʻawi kēia ʻike iā ʻoe i kahi ʻike a me ka ikaika i kēia huakaʻi paʻakikī.

He aha ka Glioma Papa Kiʻekiʻe? E hoʻomaopopo maʻalahi kākou.

I ka ʻōlelo maʻalahi, ʻo ka glioma kiʻekiʻe kahi ʻano maʻi kanesa e ulu wikiwiki loa ana i loko o ka lolo a i ʻole ke kaula kuamoʻo o kāu keiki. ʻO "Glioma" ke ʻano he puʻupuʻu. Hoʻokumu ʻia kēia mau puʻupuʻu i ka wā e hoʻomaka ai kahi ʻano cell i kapa ʻia ʻo "glial cells" e māhele a ulu wikiwiki me ka ʻole o ke kaohi. ʻO kēia mau cell glial kahi ʻano cell e kākoʻo a hānai i nā neurons, a i ʻole nā ​​​​aʻalolo, i loko o kā mākou ʻōnaehana nerve waena.

ʻO ke ʻano o ka "kiʻekiʻe" ʻo ia hoʻi he wikiwiki loa ka ulu ʻana o kēia ʻano glioma a he ʻino hoʻi . ʻO ka ʻoiaʻiʻo, ʻaʻole hiki ke ho'ōla piha ʻia nā glioma kiʻekiʻe. ʻO kēia no ka mea he paʻakikī ke mālama ʻia. ʻO kēia no ka mea ua laha koke kēia mau hunaola kanesa i loko o ka lolo a i ʻole ke kaula kuamoʻo. Ulu pū lākou ma ke komo ʻana a me ka hoʻopili ʻana me nā hunaola olakino. E noʻonoʻo i ka paʻakikī o ka wehe ʻana i ke kanesa wale nō me ka ʻole o ka hōʻeha ʻana i nā ʻiʻo olakino ke hoʻopili ʻia nā hunaola olakino a me nā hunaola kanesa. ʻO ia ke kumu he paʻakikī i kekahi manawa ke wehe loa iā lākou me ke ʻoki kino.

He aha ke "pae" o nā gliomas kiʻekiʻe?

Hoʻokaʻawale ka World Health Organization (WHO) i nā gliomas e like me ko lākou wikiwiki ulu a me ke koʻikoʻi. No laila, aia ʻelua ʻano: "haʻahaʻa" (ʻoi aku ka liʻiliʻi o ke koʻikoʻi, nā māka 1 a me 2) a me "kiʻekiʻe" (ʻoi aku ke koʻikoʻi, nā māka 3 a me 4). ʻO nā gliomas kiʻekiʻe he mau puʻupuʻu ulu wikiwiki i ka māka 3 a i ʻole 4.

Hiki i kekahi mau gliomas i nā pākeke ke hoʻomaka me ke ʻano haʻahaʻa a ma hope lilo i ke ʻano kiʻekiʻe. Eia nō naʻe, he mea kupanaha, hoʻomaka pinepine nā gliomas kiʻekiʻe i nā keiki me ke ʻano kiʻekiʻe. Eia nō naʻe, hiki ke mālama ʻia nā gliomas haʻahaʻa i nā keiki a kakaikahi ka lilo ʻana i ke ʻano kiʻekiʻe.

Ma hea i loko o ka lolo e loaʻa pinepine ai nā gliomas kiʻekiʻe?

Hoʻomohala pinepine ʻia nā gliomas kiʻekiʻe ma ka "compartment supratentorial" o ka lolo, a i ʻole ka brainstem.

• Keʻena Supratentorial: ʻO kēia ka wahi o ka lolo e loaʻa ana ka cerebrum, thalamus, a me hypothalamus. Hiki i kēia mau puʻupuʻu ke ulu mai nā pūnaewele glial i loaʻa ma ʻaneʻi.
• ʻŌpū lolo:Hiki i kēia mau glioma kiʻekiʻe ke ulu aʻe ma ka ʻāpana o ka lolo i kapa ʻia ʻo "pons". Ua kapa ʻia kēia he ʻano kūikawā o "Diffuse Intrinsic Pontine Gliomas" (DIPG). He ʻino loa kēia ʻano DIPG a paʻakikī ke mālama.

He mea nui loa ka wahi o ka puʻupuʻu, no ka mea, e hoʻoholo ia i nā koho lapaʻau i loaʻa i kāu keiki. No ka laʻana, ʻaʻole hiki ke wehe palekana ʻia nā puʻupuʻu i loko o ke kumu lolo ma ke ʻoki ʻana.

ʻO wai ka mea i hoʻopilikia nui ʻia e kēia kūlana?

Hiki ke loaʻa ka glioma kiʻekiʻe i nā pēpē, nā keiki makua, nā ʻōpio, a me nā pākeke. Eia nō naʻe, ʻokoʻa ka glioma kiʻekiʻe i nā pēpē a me nā keiki liʻiliʻi mai ka glioma kiʻekiʻe i nā ʻōpio a me nā pākeke. Ma muli o kēia mau ʻokoʻa, ʻokoʻa paha ka mālama ʻana no nā pēpē a me nā keiki liʻiliʻi.

Pehea ka maʻamau o ka glioma kiʻekiʻe?

ʻO nā glioma kiʻekiʻe ke ʻano lua o ka maʻi ʻōpū lolo ʻino i nā keiki. Aia lākou ma waena o 10% a me 20% o nā ʻōpū āpau e hoʻopilikia ana i ka ʻōnaehana nerve waena i nā keiki.

He aha nā hōʻailona o ka glioma kiʻekiʻe?

Hiki ke ʻokoʻa nā hōʻailona mai kekahi keiki a i kekahi. Aia lākou i ka ʻāpana o ka lolo (a i ʻole ke kaula kuamoʻo) i hoʻopilikia ʻia e ka puʻupuʻu, ka makahiki o ke keiki, a me ka wikiwiki o ka ulu ʻana o ka puʻupuʻu. ʻO ke kumu nui o kēia mau hōʻailona ka puʻupuʻu e kau ana i ke kaomi ma luna o ka lolo a ke kumu o ka pehu ʻana.

ʻO ka hōʻailona maʻamau ka ʻeha poʻo. He ʻoiaʻiʻo loa kēia inā hele pū ka ʻeha poʻo me ka nausea a i ʻole ka luaʻi ʻana. ʻOi aku ka ʻino o kēia ʻeha poʻo i ke kakahiaka. I kekahi manawa, hiki ke ʻoi aku ka ʻino a hoʻāla iā ʻoe i ka pō. E noʻonoʻo i kahi keiki liʻiliʻi e loaʻa ana i kahi manawa paʻakikī.

ʻO nā hōʻailona ʻē aʻe e ʻike ʻia paha:

• Paʻakikī i ka ʻike ʻana, ka lohe ʻana, a i ʻole ka ʻōlelo ʻana (ka ʻike maka pōwehiwehi, ka nalowale o ka lohe, ka ʻōlelo ʻana me ka ʻole o ka ʻike).
• ʻO ka nalowale o ke kaulike a i ʻole ka nāwaliwali o nā ʻiʻo (ataxia), e like me ka paʻakikī i ka hele wāwae a i ʻole ka paʻa ʻana i nā mea.
• Ka huikau a i ʻole ka nalowale o ka hoʻomanaʻo.
• Ka hiamoe mau, ka manaʻo palaualelo.
• Nā ʻūlū (e like me ka maʻi ʻōpū) .

E ʻike paha nā pēpē ʻōpiopio loa i ka uē ʻana, ka huhū, nā loli i nā ʻano hānai (e like me ka inu ʻole ʻana i ka waiū). I kekahi manawa , e ʻike paha lākou i ko lākou mau poʻo e ulu iki aʻe ana, a ʻo nā wahi palupalu (fontanelles) a i ʻole "swamps" ma luna o ko lākou mau poʻo e lilo i mea ʻike nui ʻia.

No ke aha e ulu ai kēia mau glioma kiʻekiʻe? He aha nā kumu?

ʻO kaʻoiaʻiʻo, ʻaʻole maopopo i nā kānaka noiʻi ke kumu kūpono o kēia.I nā mākua, ua ʻike ʻia ka radiation therapy ma mua he kumu pilikia no ka hoʻomohala ʻana i kēia mau puʻupuʻu. He hiki nō hoʻi i nā keiki ke hoʻopilikia ʻia e nā kumu pilikia like o waho a i ʻole ke kaiapuni, akā pono ka noiʻi hou aku.

Eia nō naʻe, hiki i kekahi mau maʻi hoʻoilina i hoʻoilina ʻia ke hoʻonui i ka pilikia o ka glioma kiʻekiʻe i nā keiki. ʻO ke kūlana hoʻoilina he kīnā a he mea ʻē paha i loko o nā genes, ʻo ia ka "code" e haʻi i nā cell pehea e hana ai.

Eia kekahi mau kūlana:

• ʻO ka Neurofibromatosis ʻano-1 (ʻO ke ʻano Neurofibromatosis ʻano-1 - NF1)
• ʻO ka maʻi Turcot
• ʻO ka maʻi Li-Fraumeni

Eia nō naʻe, he mea nui e hoʻomanaʻo he nui nā keiki me ka glioma kiʻekiʻe ʻaʻohe moʻolelo ʻohana o kēia ʻano.

Pehea e ʻike ʻia ai ka glioma kiʻekiʻe?

E nānā pono mua ke kauka o kāu keiki i nā hōʻailona a me ka mōʻaukala olakino o kāu keiki. A laila, hiki ke hana ʻia kahi scan lolo, a i ʻole 'imaging', e ʻike inā he puʻupuʻu a inā ʻo ia ke kumu o nā hōʻailona. Inā he puʻupuʻu, e hana ʻia kahi 'biopsy' e ʻike pono ai inā he kanesa (malignant) a benign paha (benign).

• Kiʻi: Hiki i kahi scan MRI (Magnetic Resonance Imaging) a me kahi scan CT (Computed Tomography scan) ke kōkua i nā kauka e ʻike i nā ʻōpū i loko o ka lolo a i ʻole ke kaula kuamoʻo o kāu keiki. Hiki i kahi MRI, ʻoi aku ka MRI i hoʻonui ʻia i ka contrast, ke hana i nā kiʻi maopopo a kikoʻī hoʻi ma mua o ka CT scan. Hoʻohana ka MRI i nā magnet a me nā nalu lekiō e hana i nā kiʻi o nā mea i loko o ke kino ma kahi pale kamepiula. I loko o kahi MRI contrast, hoʻokomo ʻia kahi dye ʻino ʻole i loko o ka lima o kāu keiki. ʻO kēia ka mea e ʻike nui ʻia ai nā wahi me nā ʻōpū ma ka pale.

• Biopsy: Hiki i kahi hana kūikawā i kapa ʻia ʻo "stereotactic biopsy" ke kuhikuhi i kahi kikoʻī o ka puʻupuʻu a lawe i kahi ʻāpana liʻiliʻi o ka ʻiʻo mai laila a hoʻouna aku i ka lab. A laila, nānā kahi loea i kapa ʻia ʻo "pathologist" i nā cell e ʻike inā he mau cell glioma kiʻekiʻe lākou. Hiki i kēia mau hoʻāʻo ke ʻike i kekahi mau ʻano o nā cell kanesa. Hoʻohana ʻia kēia mau ʻano i kekahi manawa e hoʻoholo i ka lāʻau lapaʻau. No ka laʻana, ua hoʻolālā ʻia kekahi mau lāʻau lapaʻau kanesa hou e hana wale ma kekahi mau ʻano o nā cell kanesa. No laila, hiki i kēia mau hoʻāʻo ke kōkua i ka hoʻoholo ʻana inā he moho maikaʻi kāu keiki no kēlā lāʻau lapaʻau.

I kekahi manawa, inā hiki, wehe nā kauka i ka puʻupuʻu holoʻokoʻa ma kahi o ka lawe wale ʻana i kahi ʻāpana liʻiliʻi no kahi biopsy.A laila, me ka hōʻoia ʻana, hana ʻia ka lāʻau lapaʻau (ʻoki kino).

Eia nō naʻe, ʻaʻole hiki ke hana mau ʻia kahi biopsy i nā gliomas kiʻekiʻe. Ma muli o kahi o ka puʻupuʻu (no ka laʻana, ma ke kumu o ka lolo), hiki i ka lawe ʻana i kahi ʻāpana o ka ʻiʻo ke hōʻino i nā ʻāpana koʻikoʻi o ka lolo. I ia mau hihia, hilinaʻi nā kauka i nā hoʻokolohua kiʻi e hana i kahi hōʻailona.

Hiki ke ho'ōla loa ʻia ka glioma kiʻekiʻe?

ʻO kēia ka nīnau nui loa ma ka noʻonoʻo o kēlā me kēia kanaka. He paʻakikī ke hāʻawi i kahi pane pololei. Nui nā kumu e hoʻopilikia ai i kēia, e like me ka makahiki o ke keiki, nā loli genetic i loaʻa i loko o nā hunaola kanesa, a me ka nui o ka puʻupuʻu i wehe ʻia i ka wā o ke ʻoki ʻana.

He aha nā lāʻau lapaʻau no ka glioma kiʻekiʻe?

ʻO nā pahuhopu nui o ka mālama ʻana, ʻo ia ka wehe ʻana i ka puʻupuʻu, hoʻōki a kāohi paha i ka ulu ʻana o ka puʻupuʻu, a hāʻawi i ka hōʻoluʻolu i ke keiki ma ka hoʻēmi ʻana i nā hōʻailona.

Ma muli o ke ʻano o ka puʻupuʻu, kona wahi, a me nā kumu ʻē aʻe, hiki i kekahi mau loea ke komo i ka mālama ʻana i kāu keiki. Hiki i ka hui ke komo pū me kahi neurosurgeon, kahi neuro-oncologist, kahi radiation oncologist, kahi endocrinologist, kahi kahu maʻi, a me kahi limahana hana kaiaulu.

Hiki ke hoʻohana ʻia kekahi a ʻoi aku paha o kēia mau mea ma ke ʻano he lāʻau lapaʻau:

• ʻO ke ʻoki kino: ʻO ke ʻoki kino ka lāʻau lapaʻau nui no nā gliomas kiʻekiʻe e hiki ke wehe palekana ʻia. Maanei, hoʻāʻo ke kauka e wehe i ka nui o ka puʻupuʻu me ka ʻole o ka hōʻino ʻana i nā ʻiʻo olakino a puni.
• Lapaʻau radiation: ʻO ka radiation therapy focal kahi lāʻau maʻamau no nā keiki ma luna o 3 mau makahiki. ʻAʻole hāʻawi pinepine ʻia nā keiki ʻōpio loa i ka radiation therapy no ka mea hiki ke hoʻopilikia i ka ulu ʻana o ko lākou lolo. Pili kēia lāʻau i kahi mīkini e hoʻohana ana i nā kukuna X-ray kiʻekiʻe e kuhikuhi i ka puʻupuʻu, e mālama pono ana ʻaʻole e hōʻino i nā ʻiʻo olakino a puni. Hoʻemi ka radiation therapy i nā puʻupuʻu, pepehi i nā hunaola kanesa, a hōʻemi i nā hōʻailona.
• Kemoterapia: No ka mea, ʻaʻole hiki i nā keiki ʻōpiopio loa ke loaʻa i ka lāʻau lapaʻau radiation, hoʻohana ʻia ka chemotherapy e kāohi i ka ulu ʻana o ka puʻupuʻu. Hoʻohana ka Chemotherapy i nā lāʻau lapaʻau e pepehi i nā hunaola kanesa. Eia nō naʻe, aia nō ka hoʻopaʻapaʻa e pili ana i ka maikaʻi o ka chemotherapy no nā gliomas kiʻekiʻe. ʻOiai kekahi mau lāʻau chemotherapy, e like me temozolomide, e hana maikaʻi no kekahi mau ʻano gliomas i nā pākeke, ʻaʻole like ka maikaʻi o nā lāʻau like i nā keiki.
• Mālama palekana:Hiki i nā loea mālama palliative ke kōkua iā ʻoe e hana i nā hoʻoholo e kōkua i ka mālama ʻana i ke ʻano o ke ola o kāu keiki i ka wā o ka mālama ʻana. Hiki iā lākou ke hāʻawi i nā ala e kōkua ai i kāu keiki e hoʻomanawanui i ka hōʻailona a loaʻa ka hōʻoluʻolu mai nā hōʻailona.

ʻOi aku ka nui o ka hiki ke hoʻi hou mai ka glioma kiʻekiʻe ma hope o ka mālama ʻana. Inā hana ʻia kēia, hiki i kāu kauka ke kuhikuhi i nā "lāʻau lapaʻau i kuhikuhi ʻia." ʻO kēia nā lāʻau lapaʻau e kuhikuhi wale ana i nā molekala ʻē (i hoʻokumu ʻia e ka mutation genetic) i loko o ka puʻupuʻu o kāu keiki. Hiki ke loaʻa kēia mau "lāʻau lapaʻau i kuhikuhi ʻia i nā molekala" ma o nā "hoʻokolohua lapaʻau." ʻO nā hoʻokolohua lapaʻau nā haʻawina e hoʻāʻo ai i ka palekana a me ka pono o nā lāʻau lapaʻau hou.

I kekahi manawa, inā aia kēia mau lāʻau lapaʻau i kuhikuhi ʻia ma ka mākeke, a inā ua hōʻike nā haʻawina mua iā lākou he pono no ke ʻano glioma o kāu keiki, hiki i kāu kauka ke hāʻawi iā ʻoe ma waho o kahi hoʻokolohua lapaʻau.

He aha nā hopena ʻaoʻao o kēia mau lāʻau lapaʻau?

E kamaʻilio me kāu kauka e pili ana i nā hopena ʻaoʻao o nā lāʻau lapaʻau like ʻole. ʻOiai ke hoʻāʻo nei nā kauka i kā lākou mea maikaʻi loa e pale aku i ka hōʻino ʻana i nā ʻiʻo olakino i ka wā o ka radiation therapy, hiki nō ke hoʻopilikia ʻia kekahi mau ʻiʻo olakino. Ma muli o nā ʻāpana o ka lolo i hoʻopilikia ʻia, hiki i ka radiation therapy ke hoʻopilikia i ka hana o ka lolo, ka ulu ʻana o ka pēpē, a hoʻopilikia i ka hana ʻana o ka hormone.

He mea nui loa e kūkākūkā pono a kaupaona i nā pono a me nā pilikia o ka mālama ʻana me ka hui lapaʻau e mālama ana i ke keiki.

He aha kaʻu e manaʻo ai inā loaʻa i kaʻu keiki ka glioma kiʻekiʻe?

ʻO ka wānana o kāu keiki e pili ana i nā kumu he nui, hiki i kāu kauka ke kūkākūkā me ʻoe. ʻO ke ʻano o nā cell i hoʻopilikia ʻia, nā ʻano o nā cell, a me ka nui o ka puʻupuʻu i wehe ʻia i ka wā o ke ʻoki ʻana e hoʻoholo ai i ka hopena.

E nīnau i kāu kauka i ka mea e manaʻo ai ma muli o ke kūlana kūikawā o kāu keiki.

He aha ka nui o ke ola no ka glioma kiʻekiʻe?

ʻOi aku ka nui o ka hiki ke hoʻi mai kēia ʻano puʻupuʻu ma hope o ka mālama ʻana. ʻOi aku ka liʻiliʻi o ka ola ʻelima makahiki no nā gliomas kiʻekiʻe i nā keiki ma mua o 20%. Eia nō naʻe, he mea nui e hoʻomaopopo he ʻokoʻa loa kēia mau puʻupuʻu kekahi i kekahi. Ulu lākou ma nā wahi like ʻole, a ʻokoʻa nā ʻano o nā cell i loko o lākou. Hiki i kēia mau ʻokoʻa ke hoʻopilikia i ka wā e hiki mai ana o kāu keiki.

He aha nā nīnau e pono iaʻu e nīnau aku i ke kauka?

He nui nā nīnau e hiki mai ana i ka noʻonoʻo i ka manawa e like me kēia. Akā, mai poina e nīnau i kāu kauka i kēia mau nīnau:

• He aha nā koho lapaʻau i loaʻa no kaʻu keiki?
• Pehea e pili ai ka wahi o ka puʻupuʻu i nā koho lapaʻau?
• He aha nā pilikia e pili ana i ka mālama ʻana?
• He aha nā hopena e pono ai mākou e manaʻo mai ka lāʻau lapaʻau?
• Pehea e mālama ai i kaʻu keiki i ka wā o ka mālama ʻana?
• ʻEhia pinepine e pono ai kaʻu keiki e hele mai no ka mālama ʻana a me ka nānā ʻana?

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai

ʻO ka loaʻa ʻana o kahi hōʻailona o ka glioma kiʻekiʻe hiki ke lilo i mea paʻakikī loa e hana. Hoʻolaha koke kēia maʻi kanesa, a hiki i nā puʻupuʻu ke hoʻi mai ma hope o ka mālama ʻana. Pono pinepine ʻoe e kaupaona i nā pono o ka mālama ʻana e kūʻē i nā hopena ʻaoʻao āu e makemake ʻole ai i kāu keiki e ʻike.

E hoʻohana i nā kumuwaiwai āpau i loaʻa e kōkua iā ʻoe, kāu keiki, a me ke koena o kou ʻohana i kēia manawa. E kamaʻilio me kāu kauka e pili ana i nā koho lapaʻau a me nā hoʻokolohua lapaʻau. Inā loaʻa nā lawelawe mālama palliative, e hoʻokaʻaʻike aku iā lākou. E hōʻoia i kāu keiki e kākoʻo mau ʻoe iā lākou i ko lākou alo ʻana i kēia maʻi. He kumu ikaika nui kēia no lākou.

ʻO Glioma, Kanesa o ka Lolo, Kanesa o nā Kamaliʻi, Glioma Papa Kiʻekiʻe, Neurosurgery, Radiation Therapy, Chemotherapy