ʻAʻohe ʻeha nui aʻe no ka makuahine a makua paha ma mua o ka ʻike ʻana i kā lāua keiki e maʻi ana. Pehea ka hopohopo o kākou no ke anu maʻamau? Ke hana ʻia kēlā, ʻo ka ʻeha o ka makua ke ʻike lākou ua loaʻa i kā lāua keiki kahi maʻi koʻikoʻi e like me ke kanesa, ʻaʻole hiki ke ʻōlelo ʻia. I kēia lā, e kamaʻilio mākou e pili ana i kahi ʻano maʻi lolo kakaʻikahi loa akā weliweli loa e loaʻa ana i nā keiki. Ua kapa ʻia kēia ʻo DIPG, a i ʻole Diffuse Intrinsic Pontine Glioma. ʻOiai paha he mea paʻakikī iki ka inoa, e kamaʻilio maʻalahi kākou e pili ana.
He aha ka mea e hana maoli ana i ka lolo ma DIPG?
ʻAe, e nānā mua kākou i ke ʻano o kēia. I ka ʻōlelo maʻalahi, ʻo DIPG kahi puʻupuʻu kanesa e ulu ana ma kahi ʻāpana o ke kumu lolo e pili ana i ko kākou lolo. ʻO ke kikoʻī, ulu kēia puʻupuʻu ma kahi ʻāpana o ke kumu lolo i kapa ʻia ʻo "pons."
E noʻonoʻo, inā he hale nui ko kākou kino, ʻo kēia ʻāpana i kapa ʻia ʻo "pons" e like me ka lumi hoʻokele uila nui o kēlā hale. Maanei e hoʻomalu ʻia ai nā hana koʻikoʻi a koʻikoʻi o ko kākou ola.
- Ka hanu ʻana
- Ka helu o ka puʻuwai (ka helu o ka puʻuwai)
- Ke koko
- Ke ale ʻana i ka meaʻai
- ʻIke maka a me ka neʻe ʻana o ka maka
- Kaulike o ke kino
Ke ulu aʻe kahi maʻi ʻaʻai ma kahi e kaohi ʻia ai kēlā mau mea nui, hiki iā ʻoe ke noʻonoʻo i kona hopena i ke kino.
No kēia maʻi ʻaʻai kahi hui i kapa ʻia ʻo glioma, ʻo ia hoʻi ke hoʻomaka ia ma nā pūnaewele glial i loko o ka lolo. ʻO ia ke kumu i kapa ʻia ai i kekahi manawa he pontine glioma.
ʻO wai ka mea i loaʻa pinepine i kēia maʻi?
He maʻi ka DIPG e hoʻopilikia nui ana i nā keiki ma mua o nā pākeke. ʻOiai he mea kakaikahi loa ia, hoʻopilikia pinepine ia i nā keiki ma waena o nā makahiki 4 a me 11. He 200 a 400 wale nō keiki i ʻike ʻia me ka maʻi i kēlā me kēia makahiki ma ka honua holoʻokoʻa. Hoʻopilikia like ia i nā keikikāne a me nā kaikamahine.
He aha nā hōʻailona o DIPG?
Ulu koke kēia mau puʻupuʻu. No laila, hiki i nā hōʻailona o ke keiki ke ʻoi aku ka ʻino i ka manawa pōkole loa. I ka ulu ʻana o ka puʻupuʻu, kaomi ia i ka ʻāpana "pons" o ka lolo. Hoʻopilikia kēia i nā hana o ke kino i kāohi ʻia e kēlā ʻāpana. E makaʻala i kēia mau hōʻailona i kāu keiki.
| Māhele hōʻailona | Pehea e hōʻike ai |
|---|---|
| Ke kaulike a me ka hele wāwae | He manaʻo koke o ka kūpaʻa ʻole i ka wā e hele ana, me he mea lā e nalowale ana kou kaulike. |
| Nā loli ma ka maka a me ka waha | Paʻakikī ke nau ʻana a me ke moni ʻana, nā loli i ka ʻōlelo, a me ke kūlou ʻana o kekahi ʻaoʻao o ka maka. |
| Nā pilikia maka | ʻAʻole hiki ke kāohi i ka neʻe ʻana o ka maka, ka ʻike pālua, nā lihilihi e kūlou ana. |
| Nā pilikia lohe | Ka nalowale koke o ka lohe a i ʻole ka nalowale loa o ka lohe. |
| Nā hiʻohiʻona maʻamau ʻē aʻe | Ka luaʻi a me ka luaʻi ʻana, ʻoiai i ke kakahiaka a ma hope paha o ka luaʻi ʻana, ka ʻeha poʻo, ka nāwaliwali o nā lima a me nā wāwae. |
Hiki i kēia mau puʻupuʻu ke ulu a lilo i mea nui, e hoʻopilikia nui ana i nā hana koʻikoʻi e like me ka hanu ʻana a me ka puʻuwai o ka naʻau, a hiki ke hoʻoweliweli i ke ola.
He aha ke kumu o DIPG? Hiki ke pale ʻia?
ʻO kēia ka nīnau nui loa e hiki mai ana i kou manaʻo ma ke ʻano he makua. Ke noʻonoʻo nei paha ʻoe, "No ke aha i hana ʻia ai kēia i kaʻu keiki? Naʻu anei ka hewa?"
E ʻoluʻolu e hoʻomanaʻo i hoʻokahi mea: ʻaʻole maʻi ʻo DIPG i hoʻokumu ʻia e kekahi mea āu i hana hewa ai.
Hiki i nā puʻupuʻu DIPG ke loaʻa kekahi mau loli genetic (kapa nā kauka i kēia mau mutations). Eia naʻe, ʻaʻole ia he maʻi i hoʻoili ʻia mai nā mākua a i nā keiki ma o nā genes. ʻAʻole hoʻi i hana ʻia e ka ʻike ʻana i kekahi mea i ke kaiapuni, e like me ka uahi, nā kemika, a i ʻole ka radiation. No laila , ʻaʻohe mea hiki iā mākou ke hana e pale aku i kēia maʻi a hōʻemi paha i ka pilikia o kā mākou mau keiki e ulu ana.
Manaʻo nā kauka he pili paha ka maʻi i ke ʻano o ka ulu ʻana o ka lolo o ke keiki. ʻOi aku ka nui o ka hiki ke hana ʻia kēia mau puʻupuʻu i ka wā e loli wikiwiki ai ka lolo.
Pehea e ʻike pololei ai i ka maʻi? (Diagnosis)
Inā loaʻa i kāu keiki kēia mau hōʻailona, pono ʻoe e lawe mua iā lākou i kahi kauka keiki. E nānā ke kauka i kāu keiki a nīnau e pili ana i kā lākou mau hōʻailona a me ka mōʻaukala olakino. A laila, hana paha lākou i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona.
1. Nā scan lolo (Kiʻi)
Hiki i nā scan lolo, ʻoiai nā scan CT a me nā scan MRI, ke kōkua i ka hōʻoia ʻana i ka DIPG. I kekahi manawa, hiki ke hana ʻia kahi hoʻāʻo kūikawā i kapa ʻia ʻo magnetic resonance spectroscopy (MRS). No ka hōʻike maopopo ʻana i ka puʻupuʻu, hiki ke hoʻokomo ʻia kahi wai kūikawā i kapa ʻia ʻo contrast dye ma mua o ka MRI. Hiki i nā kauka ke kānalua i ka DIPG ma ka nānā ʻana i kahi o ka puʻupuʻu ma ke kumu o ka lolo a pehea i laha ai i nā ʻiʻo a puni.
2. Biopsy
ʻOiai hiki i ka MRI ke ʻike maʻamau i ka maʻi, pono paha kekahi mau keiki me nā hōʻailona ʻē e hana i kahi biopsy e hōʻoia i ka hōʻailona 100%. Hana ʻia kēia e kahi neurosurgeon pediatric. Pili kēia i ka hana ʻana i kahi lua liʻiliʻi loa i loko o ke poʻo, ke hoʻokomo ʻana i kahi nila lahilahi ma o ia mea i loko o ka lolo, a me ka lawe ʻana i kahi ʻāpana liʻiliʻi loa o ka ʻiʻo mai ka puʻupuʻu. Ua kapa ʻia kēia ʻano hana he "biopsy stereotactic". A laila nānā kahi pathologist i ka hāpana ʻiʻo ma lalo o kahi microscope e hōʻoia inā he mau hunaola kanesa.
He aha nā lāʻau lapaʻau no DIPG?
ʻO kēia ka ʻāpana paʻakikī loa e kamaʻilio e pili ana. No ka mea, he ʻano maʻi kanesa paʻakikī loa ka DIPG e mālama. ʻAʻole hiki i nā lāʻau lapaʻau o kēia manawa ke ho'ōla piha i kēia maʻi. Eia nō naʻe, aia nā lāʻau lapaʻau e hiki ke kōkua i ka hōʻemi ʻana i nā hōʻailona o ke keiki a hoʻolōʻihi i ko lākou ola.
- Lapaʻau Radiation: ʻO kēia ka lāʻau lapaʻau nui no DIPG. Pili ia i ka hoʻohana ʻana i nā kukuna X-ikaika kiʻekiʻe i kuhikuhi ʻia i ka puʻupuʻu. Hana ʻia kēia i kekahi mau kau i kēlā me kēia lā, i kekahi manawa a hiki i 30 mau kau i ka huina. I ka hapa nui o nā keiki, hoʻemi kēia lāʻau i ka puʻupuʻu, e hōʻemi ana i ke kaomi ma ka lolo a hōʻoluʻolu i nā hōʻailona. Hiki i kēia ke hoʻolōʻihi i ke ola o ke keiki i kekahi mau mahina. Eia nō naʻe, he manawa pōkole ka hopena. E hoʻomaka hou ka puʻupuʻu e ulu i loko o kekahi mau mahina.
- Kemoterapia: Hāʻawi ʻia nā lāʻau lapaʻau kemoterapia hou e hoʻāʻo ʻia nei me ka hoʻohana ʻana i ka radiation therapy. Eia nō naʻe, ʻaʻohe lāʻau lapaʻau kūpono i loaʻa no kēia ʻano maʻi kanesa. Ma ke ʻano he ala hou, i kekahi manawa ke hoʻāʻo ʻia nei nā lāʻau lapaʻau e hāʻawi pololei i nā lāʻau lapaʻau kanesa i ka puʻupuʻu.
- ʻOki: ʻAʻole hiki ke ʻoki ʻia ka DIPG ma ke ʻano maʻamau. ʻO kēia no ka mea ua like ka puʻupuʻu me ka pata ma kahi ʻāpana berena. ʻO ia hoʻi, ua pālahalaha a ulu a lilo i mau hunaola lolo olakino. No laila, ʻaʻole ia he puʻupuʻu paʻa e hiki ke wehe maʻalahi ʻia. Inā hana ʻia ke ʻoki ʻana, kiʻekiʻe loa ka pilikia o ka hōʻino ʻana i nā ʻāpana olakino a koʻikoʻi o ka lolo. Hiki iā ia ke hoʻoweliweli i ke ola o ke keiki.
Nānā no DIPG
ʻOiaʻiʻo, ʻaʻole maikaʻi loa ka nānā ʻana no kahi keiki me DIPG. Ua ʻike wau he mea ʻeha loa kēia ke lohe. ʻO ka pahuhopu nui o nā kauka, ʻo ia ka hoʻolilo ʻana i ke keiki i ʻoluʻolu a ʻaʻohe ʻeha. ʻO nā lāʻau lapaʻau o kēia manawa ke kuhikuhi nei i ka kaohi ʻana i nā hōʻailona ma mua o ka hoʻōla ʻana i ka maʻi.
Wahi a nā helu helu, he 10% wale nō o nā keiki e ola ana i 2 mau makahiki ma hope o ka ʻike ʻia ʻana o ka maʻi. ʻAʻole i hiki i ka 2% ke ola i 5 mau makahiki. Maopopo iaʻu kou manaʻo ke lohe ʻoe i kēia mau helu. Akā, he mea nui e makaʻala i kēia kūlana.
Leka Lawe-Home
- He ʻano maʻi ʻaʻai lolo kakaikahi loa ka DIPG akā he mea weliweli loa ia i nā keiki.
- ʻAʻole i hana ʻia kēia maʻi e kekahi hewa o nā mākua a i ʻole ka mana o ke kaiapuni o waho. Mai mihi.
- Inā ʻike ʻoe i kahi loli koke i ka hele ʻana o kāu keiki, ke kaulike, ka neʻe ʻana o nā maka, ka ʻōlelo ʻana, a i ʻole ke ale ʻana, e ʻike koke i ke kauka .
- ʻAʻole kūpono ke ʻoki kino no kēia maʻi. ʻO ka lāʻau lapaʻau nui ka radiation therapy e hōʻoluʻolu i nā hōʻailona.
- He manawa paʻakikī loa kēia no ke keiki a me ka ʻohana. He mea nui loa ka ʻimi ʻana i ke kākoʻo mai nā kauka, nā hoaaloha, a me nā kākāʻōlelo.
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