Loaʻa i kāu keiki kahi puʻupuʻu lolo e like me kēia? (Diffuse Intrinsic Pontine Glioma - DIPG) E kamaʻilio kākou e pili ana i kēia?

He mea maʻamau ka manaʻo nui i ke kaumaha i ka noʻonoʻo ʻana i ke olakino o kāu keiki liʻiliʻi. I kekahi manawa, hopohopo nui mākou i ka lohe ʻana i nā maʻi e hoʻopilikia ana i nā keiki. I kēia lā, e kamaʻilio mākou e pili ana i kahi puʻupuʻu lolo i ʻoi aku ka koʻikoʻi, akā he mea nui e makaʻala. Ua kapa ʻia ʻo ia he diffuse intrinsic pontine glioma, a i ʻole "DIPG" no ka pōkole.

He aha ʻo DIPG? He aha ke ʻano o kēia inoa?

ʻOiai paha he lōʻihi iki kēia inoa, ʻo ka ʻike ʻana i kona manaʻo hiki ke hāʻawi iā ʻoe i kekahi manaʻo e pili ana i kēia maʻi. E nānā kākou i ke ʻano o kona mau ʻāpana.

• Hoʻolaha: ʻAʻole kēia e like me kahi puʻupuʻu ma kahi hoʻokahi. Hoʻolaha ʻia nā hunaola kanesa a hui pū ʻia me nā hunaola olakino. Ua like ia me ke kau ʻana i kahi kulu o ka waihoʻoluʻu i loko o ke aniani wai, hohola ia ma loko o ke aniani. ʻO ia ke kumu he paʻakikī loa ke wehe ʻana me ke ʻoki kino. No ka mea, ʻaʻole hiki ke wehe i kēia mau hunaola i hohola ʻia me ka ʻole o ka hōʻino ʻana i nā ʻāpana olakino.
• Kūloko: Aia kēia i loko o ke kumu lolo o ke keiki. ʻO ia hoʻi, ua pili ia iā ia a komo hohonu i loko.
• Pontine: ʻO Pontine ka ʻāpana o ka lolo i kapa ʻia ʻo pons. He wahi koʻikoʻi loa kēia pons. Hoʻomalu ia i nā mea koʻikoʻi i loko o ko mākou kino e like me ke koko, ka puʻuwai, a me ka hanu ʻana. ʻAʻole wale ia, akā hoʻomalu pū ia i nā mea e like me ka ʻike, ka lohe, ka ʻōlelo, a me ke kaulike. No laila, ʻo ia kekahi o nā kumu i weliweli ai kēia mau puʻupuʻu `(DIPG)`.
• Glioma: He ʻōpū ka glioma e ulu ana i ka wā e lilo ai nā pūnaewele glial i maʻi kanesa. ʻO kēia mau pūnaewele glial kahi ʻano pūnaewele e pale ana i nā pūnaewele nerve, a i ʻole nā ​​neurons, i loko o kā mākou ʻōnaehana nerve waena (CNS).

I ka ʻōlelo maʻalahi, he puʻupuʻu ʻino ʻo DIPG e kū mai ana mai nā pūnaewele glial i loko o nā pons, kahi ʻāpana o ka lolo o ke keiki. Ua manaʻo ʻia he glioma ulu wikiwiki a kiʻekiʻe .

He aha ka ʻokoʻa ma waena o DIPG a me DMG (Diffuse Midline Glioma)?

Ua lohe paha ʻoe i ka `(Diffuse Midline Glioma - DMG)`. I ka wā ma mua, ua hoʻohana like ʻia nā huaʻōlelo `(DIPG)` a me `(DMG)`. No ka māhele `(DMG)` nō hoʻi ʻo `(DIPG)`. Hoʻomohala ke ʻano `(DMG)` ma nā wahi waena o ka lolo. ʻO ia hoʻi, ma nā wahi e like me `(Pons)`, `(Thalamus)` a me `(Spinal Cord)`. Eia naʻe, hoʻomohala kūikawā ʻo `(DIPG)` ma ka ʻāpana `(Pons)`.

He mau glioma kiʻekiʻe nā mea ʻelua. Eia nō naʻe, aia kekahi mau ʻokoʻa ma waena o nā mea ʻelua. I ka mālama ʻana i kāu keiki, e noʻonoʻo kāu kauka i kēia mau ʻokoʻa e hoʻoholo ai i ka lāʻau lapaʻau kūpono loa iā ʻoe.

ʻO wai ka mea e loaʻa ana iā DIPG? Pehea ka maʻamau?

Hiki i kēia mau puʻupuʻu ke ulu i loko o nā keiki o kēlā me kēia makahiki, me ka nānā ʻole i ke kāne. Eia nō naʻe, ʻike pinepine ʻia lākou i nā keiki ma waena o 5 a me 9 mau makahiki.

Hiki i nā pākeke ke loaʻa iā DIPG, akā he mea kakaikahi loa ia.

He ʻano maʻi laha ʻole kēia. ʻOiai ma kahi ʻāina e like me ʻAmelika, he 150 a 300 wale nō keiki i ʻike ʻia me kēia ʻano puʻupuʻu i kēlā me kēia makahiki. ʻO ka hapa nui o nā gliomas e ulu ana i nā keiki he "haʻahaʻa ke ʻano", ʻo ia hoʻi hiki ke mālama ʻia a ho'ōla ʻia. Eia nō naʻe, ma kahi o 10% wale nō o nā puʻupuʻu lolo o nā kamaliʻi he ʻano weliweli kēia i kapa ʻia ʻo "DIPG".

He aha nā hōʻailona o DIPG?

Ma muli o ka ulu wikiwiki ʻana o kēia puʻupuʻu, i kapa ʻia ʻo "DIPG", hoʻomaka koke ka ʻike ʻia ʻana o nā hōʻailona. E makaʻala i kēia mau hōʻailona i kāu keiki:

• Nā pilikia maka: ʻike maka pōwehiwehi, ʻike maka pālua, neʻe ʻana o nā maka i kāohi ʻole ʻia, nā lihilihi e kūlou ana.
• ʻEha poʻo: ʻEha poʻo, ʻoi aku hoʻi i ke kakahiaka. I kekahi manawa, emi kēia ʻeha ma hope o ka luaʻi ʻana.
• Nā pilikia hele wāwae: Paʻakikī i ka hele wāwae, nalowale ke kaulike (ataxia), a me ka emi ʻana o ka hoʻonohonoho ʻana o nā ʻiʻo. E like me ka hiki ʻole ke hoʻopaʻa i kou mau wāwae ma ka honua.
• Ka palupalu a nāwaliwali paha ma kekahi ʻaoʻao o ka maka .
• Ke paʻakikī i ka nau ʻana a me ke ale ʻana i ka meaʻai.
• Ka nāwaliwali o nā lālā . Ua like ia me ka nalowale koke ʻana o ka ikaika ma ka lima a i ʻole ka paʻakikī i ka hoʻoneʻe ʻana i kahi wāwae.
• Ka luaʻi a me ka luaʻi.
• Manaʻo e like me ke ʻano o kāu ʻōlelo ʻana ua palahalaha , ʻaʻole hiki ke hoʻohui pono i kāu mau huaʻōlelo (ʻōlelo palahalaha).

Inā ʻike koke ʻia kekahi a ʻoi aku paha o kēia mau hōʻailona a piʻi koke aʻe, he mea nui loa e ʻike koke i ke kauka.

He aha ke kumu o DIPG?

I ka ʻōlelo maʻalahi, ʻo ka mea e hana ʻia ma DIPG, ʻo ia nā pūnaewele i manaʻo ʻia e ulu i loko o nā pūnaewele glial e lilo i mau pūnaewele kanesa. A laila ulu koke kēia mau pūnaewele kanesa a hiki ʻole ke kāohi ʻia.

ʻAʻole e like me ka hapa nui o nā maʻi kanesa, ʻaʻole pili kēia kūlana i kapa ʻia ʻo "DIPG" i nā mea pilikia o ke kaiapuni e like me ka uahi cigarette a i ʻole ka radiation. ʻO ia hoʻi, ʻaʻole i hoʻoholo ʻia inā paha i hana ʻia e kahi mea a nā mākua e hana ai a i ʻole kekahi mea i loko o ke kaiapuni.

Eia nō naʻe, inā loaʻa i kāu keiki kahi maʻi laha ʻole e like me ka maʻi Li-Fraumeni, ʻoi aku ka kiʻekiʻe o ka pilikia. Eia kekahi, ʻo kekahi mau loli genetic, i kapa ʻia ʻo mutations, i loko o nā cell hiki ke hana iā DIPG. Ua ʻike ʻia i kēia manawa he mutation i loko o kahi protein i kapa ʻia ʻo H3K27M hiki ke hoʻolilo i kēia mau cell glial i maʻi kanesa.

Pehea e ʻike ʻia ai ka DIPG?

ʻO ka maʻamau, pono kahi biopsy, ʻo ia hoʻi kahi hāpana o nā ʻiʻo i lawe ʻia e hoʻāʻo no ka maʻi kanesa. Eia naʻe, ʻaʻole hiki ke hana mau ʻia kēia i ka hihia o DIPG. ʻO kēia no ka mea he koʻikoʻi loa ka wahi o ka puʻupuʻu. No laila, ʻike pinepine nā kauka i ka DIPG ma ka nānā ʻana i nā hōʻailona o ke keiki me nā haʻawina kiʻi kūikawā.

• ʻIke MRI (Magnetic Resonance Imaging):Hiki i kahi MRI ke hana i nā kiʻi maopopo loa o ka puʻupuʻu o ke keiki. Hiki iā ia ke hoʻoholo inā ua pālahalaha ka puʻupuʻu ma ʻō aku o nā pons. He ʻokoʻa iki ke ʻano o ka puʻupuʻu DIPG ma kahi MRI. Hiki i kahi radiologist akamai ke hoʻokaʻawale iā ia mai nā puʻupuʻu lolo ʻē aʻe.
• ʻO ka Biopsy Stereotactic: I kekahi manawa, inā palekana ke hana pēlā, hiki i ke kauka ke hoʻohana i kahi mea hana liʻiliʻi a lahilahi e like me ka paipu e lawe i kahi ʻāpana liʻiliʻi o ka puʻupuʻu no ka hoʻāʻo ʻana (he biopsy). Eia nō naʻe, i ka hapa nui o nā hihia, ʻo ka lawe ʻana i kahi ʻāpana o ka ʻiʻo mai nā pons i loko o ka lolo he mea weliweli loa ia no ka mea hiki ke hōʻino i ka lolo. Inā loaʻa iā ʻoe kahi biopsy no DIPG, pono e hana wale ʻia ma kahi haukapila e hana mau ana i kēia ʻano hana a he ʻike loea i ia wahi.

Pehea e mālama ʻia ai ʻo DIPG?

He mea kaumaha iki kēia ke lohe ʻia, akā ʻaʻole hiki i nā lāʻau lapaʻau o kēia manawa ke hoʻōla loa i ka `(DIPG)`. Eia nō naʻe, hiki i kēia mau lāʻau lapaʻau ke hoʻolōʻihi i ke ola o ke keiki no kekahi manawa, hōʻemi i nā hōʻailona a hāʻawi i ka hōʻoluʻolu i ke keiki. ʻO ke kumu lolo kahi wahi i hana ʻia me nā ʻiʻo aʻalolo e hoʻomalu i nā hana koʻikoʻi loa i loko o ko mākou kino. No laila, inā ʻoe e hoʻāʻo e wehe i ka puʻupuʻu ma ke ʻoki ʻana, hiki ke hōʻino ʻia kēia mau ʻano aʻalolo koʻikoʻi.

No laila, ʻōlelo nā kauka i nā lāʻau lapaʻau ʻē aʻe ʻaʻole ʻokiʻoki:

• Lapaʻau radiation: ʻO kēia ka lāʻau lapaʻau nui no (DIPG). Ma kēia, hoʻohana kahi mīkini i kahi kukuna o ka radiation e luku i nā hunaola kanesa. Hoʻāʻo pū ia e hōʻemi i ka hōʻino ʻana i nā ʻiʻo olakino a puni. Hoʻemi ka radiation therapy i ka puʻupuʻu, pepehi i nā hunaola kanesa, a hōʻemi i nā hōʻailona. E loaʻa paha i kāu keiki ka radiation therapy i kēlā me kēia lā no kahi o ʻeono pule.
• Corticosteroids: Hiki i kāu kauka ke hāʻawi iā ʻoe i kahi ʻano lāʻau i kapa ʻia ʻo corticosteroids ma mua a ma hope paha o ka mālama ʻana i kāu keiki me ka radiation. Hiki i kēia mau lāʻau ke kōkua i ka hōʻemi ʻana i ka pehu ʻana i loko o ka lolo a kōkua i ka kaohi ʻana i nā hōʻailona. Hiki iā lākou ke kōkua i ka hōʻemi ʻana i ka pehu ma hope o ka mālama ʻana i ka radiation. Eia nō naʻe, hiki i nā corticosteroids ke loaʻa nā hopena ʻaoʻao. ʻO kēia mau mea ka hoʻonui ʻana i ka makemake, ka piʻi ʻana o ke kaumaha, a me nā loli o ke ʻano. E kamaʻilio me kāu kauka e hoʻomaopopo i nā pono a me nā pilikia o kēia mau lāʻau.
• Kemoterapi: ʻAʻole maikaʻi loa nā lāʻau lapaʻau e like me ke kemoterapi no nā maʻi ʻaʻai maʻamau no DIPG. Eia nō naʻe, i kekahi manawa e ʻōlelo paha kāu kauka i kāu keiki e komo i nā hoʻokolohua lapaʻau e hoʻohui pū ana i ka kemoterapi a me ka radiation therapy.
• Mālama palekana:Hiki i nā loea mālama palliative ke hana pū me ʻoe a me kāu kauka e hana i kahi hoʻolālā mālama e hoʻonui ai i ke ʻano o ke ola o kāu keiki. Hiki iā lākou ke hāʻawi i ke kākoʻo lapaʻau, noʻonoʻo, a me ka ʻuhane e pono ai iā ʻoe, kāu keiki, a me kou ʻohana i ka wā e hana ai me kahi maʻi e like me DIPG.

Hiki paha i kāu kauka ke kuhikuhi aku e kākau inoa ʻia kāu keiki i kahi hoʻokolohua lapaʻau . ʻO kahi hoʻokolohua lapaʻau kahi haʻawina e hoʻāʻo ai i ka palekana a me ka maikaʻi o nā lāʻau lapaʻau hou. Ua ʻike nā kānaka noiʻi i kekahi mau ʻano o nā hunaola kanesa (DIPG). Hiki ke loaʻa nā lāʻau lapaʻau hou e kuhikuhi ana i kēlā mau ʻano - no ka laʻana , ka lāʻau lapaʻau i kuhikuhi ʻia i ka molekala a me ka immunotherapy - ma o kahi hoʻokolohua lapaʻau.

Eia kekahi laʻana, ua ʻike nā kānaka noiʻi he nui nā ʻāpana kanesa i loaʻa kahi mutation i kapa ʻia ʻo (H3K27M) i loko o ka gene ``DIPG''. Ke hoʻomohala ʻia nei a hoʻāʻo ʻia nā lāʻau lapaʻau hou e pili ana i nā ʻāpana kanesa me kēia mutation (a me nā mea ʻē aʻe) i nā hoʻokolohua lapaʻau.

Hiki ke ho'ōla ʻia ʻo DIPG?

ʻAʻole, ʻaʻole hiki ke ho'ōla ʻia ka Diffuse Intrinsic Pontine Glioma (DIPG). ʻO ka lāʻau lapaʻau kūpono loa i loaʻa i kēia manawa, ʻo ia ka radiation therapy. Hiki i ka radiation therapy no DIPG ke hoʻolōʻihi i ke ola o ke keiki a hoʻomaikaʻi i nā hōʻailona a me ke ʻano o ke ola no kekahi manawa. Pono nā lāʻau lapaʻau hou a ʻoi aku ka maikaʻi e hoʻomaikaʻi i ka prognosis o kēia maʻi kanesa koʻikoʻi.

ʻEhia ka lōʻihi e hiki ai i kahi keiki me DIPG ke ola?

ʻIke wau he paʻakikī kēia ke lohe. Me ka ʻole o ka lāʻau lapaʻau, ola ka hapa nui o nā keiki no ʻeono mahina ma hope o ka hōʻoia ʻana. Hiki i ka lāʻau lapaʻau radiation ke hoʻolōʻihi i kēia manawa a i ʻeiwa a ʻumikūmākahi mahina. ʻAʻole i hiki i ka 10% o nā keiki ke ola ma mua o ʻelua mau makahiki. He mea maʻamau ke kaumaha ke lohe ʻoe i kēia mau helu helu, akā he mea nui e hoʻomanaʻo he ʻokoʻa kēlā me kēia keiki.

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

E hana pū me kāu kauka e hoʻomaopopo i ka hoʻolālā mālama o kāu keiki a me nā mea e hoʻopilikia ai i ko lākou wā e hiki mai ana. Mai makaʻu e nīnau i kāu mau nīnau. Eia kekahi mau nīnau hiki iā ʻoe ke nīnau:

• He aha nā lāʻau lapaʻau āu e ʻōlelo nei? He aha kā mākou e manaʻo ai mai iā lākou?
• ʻEhia pinepine e pono ai kaʻu keiki i ka lāʻau lapaʻau?
• ʻEhia pinepine e pono ai kaʻu keiki e hele mai no nā manawa hoʻokolokolo e nānā i ka holomua o ke kanesa?
• Pehea mākou e mālama ai i nā hopena ʻaoʻao o nā lāʻau lapaʻau maʻi kanesa?
• Hiki iā ʻoe ke hoʻohui iā mākou i nā lawelawe mālama palliative a me nā hui kākoʻo?
• Aia kekahi mau noiʻi hou a i ʻole nā ​​hoʻokolohua lapaʻau e hiki i kaʻu keiki ke komo?

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

ʻO ka ʻike ʻana ua loaʻa i kāu keiki ka Diffuse Intrinsic Pontine Glioma (DIPG) kekahi o nā mea paʻakikī loa āu e lohe ai ma ke ʻano he makua. Hiki ke kaumaha ka ʻeha, ka makaʻu, a me ka hopohopo āu e manaʻo ai. Akā e hoʻomanaʻo ʻaʻole ʻoe hoʻokahi i kēia manawa.

I kou hoʻoholo ʻana i nā lāʻau lapaʻau i nā mahina e hiki mai ana, e hoʻohana pono i nā kōkua a me nā kumuwaiwai āpau i loaʻa iā ʻoe. E kamaʻilio ākea me nā kauka o kāu keiki e pili ana i nā mea e manaʻo ai me kēia maʻi. Inā hiki iā ʻoe, e hoʻokaʻaʻike aku i nā poʻe loea e hāʻawi ana i ka mālama palliative. E noi i ke kōkua mai nā hoaaloha a me ka ʻohana. Ma luna o nā mea a pau, e pili mau me kāu keiki. E kamaʻilio me ia, e pāʻani me ia, a e hāʻawi iā ia i ke aloha. E hōʻike iā ia aia ʻoe me ia i kēlā me kēia ʻanuʻu o ke ala.

I kēia mau manawa paʻakikī, he mea nui e noʻonoʻo iā ʻoe iho a mālama i kou olakino noʻonoʻo. Inā e noho ikaika ʻoe, e ikaika pū kāu keiki. ʻAʻole ʻoe hoʻokahi, aia mākou a pau me ʻoe.

ʻO ka glioma pontine intrinsic diffuse, DIPG, maʻi ʻaʻai lolo, maʻi ʻaʻai kamaliʻi, pons, radiation therapy, mālama palliative