Yu pikin gɛt bren tumbu lɛk dis? (Diffuse Intrinsic Pontine Glioma - DIPG) Wi go tɔk bɔt dis?

Na nɔmal tin fɔ fil bɔku strɛs we yu de tink bɔt yu smɔl pikin in wɛlbɔdi. Sɔntɛnde, wi kin rili wɔri we wi yɛri bɔt sik dɛn we kin afɛkt pikin dɛn. Tide, wi go tɔk bɔt wan bren tumor we siriɔs smɔl, bɔt i impɔtant fɔ no bɔt. dεn kכl am difכs intrinsik pכntin glioma, כ ``DIPG'' fכ sכt.

Wetin na DIPG? Wetin dis nem min?

Pan ɔl we dis nem kin tan lɛk se i lɔng smɔl, if yu no wetin i min, dat kin gi yu sɔm aidia bɔt dis sik. Lɛ wi luk wetin in pat dɛn min.

• Diffuse: Dis nɔ tan lɛk lump na wan ples. Di kansa sɛl dɛn kin skata ɛn miks wit wɛlbɔdi sɛl dɛn. I tan lɛk se we yu put wan drɔp day insay wan glas wata, i kin skata ɔlsay na di glas. Na dat mek i nɔ kin izi fɔ pul am wit ɔpreshɔn. Bikɔs i nɔ pɔsibul fɔ pul dɛn sɛl ya we dɔn skata we yu nɔ pwɛl di pat dɛn we gɛt wɛlbɔdi.
• Intrinsic: Dis de insay di pikin in bren stem. Dat min se i kɔnɛkt to am ɛn go dip insay.
• Pontin: Pontin de tכk bכt di pat pan di bren stεm we dεn kכl di pons. Dis pons na wan ples we rili impɔtant. I de kɔntrol di impɔtant tin dɛn na wi bɔdi lɛk blɔd prɛshɔn, at bit, ɛn fɔ blo. Nɔto dat nɔmɔ, bɔt i de kɔntrol tin dɛn lɛk fɔ si, fɔ yɛri, fɔ tɔk, ɛn fɔ balans. So dis na wan pan di rizin dεm we mek dεn `(DIPG)` tכmכro dεm ya so denja.
• Glioma: Glioma na tכmכro we de divεlכp we di glial sεl dεm bi kεnsar. dis glial sεl dεm na wan kayn sεl we de protεkt di nεv sεl dεm כ nyuron dεm na wi sεntri nεv sεstem (CNS).

Fɔ tɔk am simpul wan, DIPG na wan bad bad tכmכro we de kכmכt frכm di glial sεl dεm na di pons, we na wan pat pan di pikin in bren stεm. Dɛn kin tek am se na glioma we de gro fast fast ɛn we gɛt ay gred .

Wetin na di difrɛns bitwin DIPG ɛn DMG (Diffuse Midline Glioma)?

Yu kin dɔn yɛri bak bɔt `(Diffuse Midline Glioma - DMG)`. Trade, dɛn bin de yuz di wɔd dɛn `(DIPG)` ɛn `(DMG)` fɔ chenj dɛnsɛf. `(DIPG)` de insay di `(DMG)` kategori bak. di `(DMG)` tכp de divεlכp na di midul pat dεm na di bren. dat min se, na ples dεm lεk di `(Pons)`, `(Thalamus)` εn `(Spinal Cord)`. Bɔt, `(DIPG)` de divɛlɔp spɛshal wan na di `(Pons)` eria.

Dɛn tu na ay-grɛd gliomas. Bɔt sɔm tin dɛn de we difrɛn bitwin dɛn tu. We yu de trit yu pikin, yu dɔktɔ go tink bɔt dɛn difrɛns ya fɔ disayd us tritmɛnt go fayn fɔ yu.

Udat kin gɛt DIPG? Aw i kɔmɔn?

Dɛn tumbu ya kin kam pan pikin dɛn we ol ɛni ej, ilɛksɛf na man ɔ uman. Bɔt dɛn kin no bɔt dɛn mɔ pan pikin dɛn we ol bitwin 5 ɛn 9 ia.

Big pipul dɛn kin gɛt DIPG bak, bɔt i nɔ kin apin so ɔltɛm.

Dis na rili wan sik we nɔ kin apin so ɔltɛm. Ivin na kɔntri lɛk Amɛrika, na 150 to 300 pikin dɛn nɔmɔ dɛn kin gɛt dis kayn tumbu ɛvri ia. כl di glioma dεm we de divεlכp pan pikin dεm na ``lכw grεd'', we min se dεn kin trit dεm εn kכl dεm. כltu, na כnli lεk 10% pan di pikin in bren tכmכro dεm na dis denja tכp we dεn kכl ``DIPG''.

Wetin na di sayn dɛm fɔ DIPG?

biכs dis tכmכro we dεn kכl ``DIPG'' de gro kwik kwik wan, di simptom dεm de bigin fכ sho kwik kwik wan. Kip yu yay fɔ dɛn sayn ya na yu pikin:

• Prɔblɛm wit di yay: yu nɔ de si fayn, yu nɔ de si tu tɛm, yu yay de muv we yu nɔ de kɔntrol, di aylid dɛn we de drɔp.
• Ɛd we de at: Ɛd we de at, mɔ na mɔnin. Sɔntɛnde, dis pen kin stɔp afta yu dɔn vɔmit.
• I nɔ kin izi fɔ waka: I nɔ kin izi fɔ waka, i nɔ kin balans (ataxia), ɛn di mɔsul dɛn nɔ kin wok togɛda igen. Lɛk we yu nɔ ebul fɔ kip yu fut na grɔn.
• Sag ɔ wik na wan say na di fes .
• I nɔ izi fɔ it ɛn swɛla it.
• Fɔ fil se yu an ɛn fut wik . I kin tan lɛk se yu nɔ gɛt trɛnk wantɛm wantɛm na yu an ɔ i nɔ kin izi fɔ muv yu leg.
• Nɔs ɛn vɔmit.
• Fɔ fil lɛk se yu de tɔk smɔl smɔl , nɔ ebul fɔ mek yu wɔd dɛn togɛda fayn fayn wan (slurred speech).

If wan ɔ mɔ pan dɛn sayn ya apin wantɛm wantɛm ɛn i go bɔku kwik kwik wan, i rili impɔtant fɔ go to dɔktɔ wantɛm wantɛm.

Wetin kin mek pɔsin gɛt DIPG?

Fɔ tɔk am simpul wan, wetin kin apin na DIPG na dat di sɛl dɛn we dɛn se de divɛlɔp to glial sɛl dɛn kin bi kansa sɛl dɛn. Dɔn dɛn kansa sɛl ya kin gro kwik kwik wan ɛn dɛn nɔ kin ebul fɔ kɔntrol dɛn.

Nɔ lɛk bɔku pan di kansa dɛm, dis sik we dɛn kɔl ``DIPG'' nɔr tan lɛk se i gɛt fɔ du wit di tin dɛm we de ambɔg di envayrɔmɛnt lɛk sigrɛt smok ɔ redyushɔn. Dat min se, dɛn nɔ dɔn no yet if na sɔntin we di mama ɛn papa de du ɔ sɔntin we de na di say we dɛn de.

Bɔt if yu pikin gɛt wan sik we nɔ kin apin so ɔltɛm lɛk Li-Fraumeni syndrome, di risk kin bɔku smɔl. כlso, sכm jεnεtik chenj dεm, we dεn kכl mכtεshכn, na di sεl dεm kin mek DIPG. naw dεn dכn fכ no se wan mכtεshכn insay wan protin we dεn kכl H3K27M kin mek dεn glial sεl dεm ya bi kεnsar.

Aw dɛn kin no if pɔsin gɛt DIPG?

Bɔku tɛm, dɛn kin nid fɔ tek bayɔpsi, we na sɔm tisu dɛn we dɛn kin tek fɔ tɛst fɔ gɛt kansa. Bɔt nɔto ɔltɛm dis kin pɔsibul fɔ di kes fɔ DIPG. dis na biכs di say we di tכmכro de rili sεnsitiv. So, bɔku tɛm, dɔktɔ dɛn kin no if i gɛt DIPG bay we dɛn de luk di pikin in sik dɛn wit spɛshal imej stɔdi dɛn.

• MRI (Magnetik Rizɔnans Imej) skan:MRI kin mek yu si di pikin in tumbu we rili klia. i kin no bak if di tכmכro dכn spre pas di pons. DIPG tumbu kin luk difrɛn smɔl pan MRI. Wan ekspiriɛns raydiɔlɔjis kin no difrɛns frɔm ɔda bren stem tumbu dɛn.
• Stereotactic Biopsy: Sɔntɛnde, if i sef fɔ du dat, di dɔktɔ kin yuz smɔl tin we tan lɛk tiub fɔ tek smɔl pat pan di tumbu fɔ tɛst (bayopsi). כltu, bכku tεm, fכ tek wan pat pan di tisu frכm di pons na di bren stεm kin rili risky biכs i kin pwεl di bren stεm. If yu de du bayɔpsi fɔ DIPG, dɛn fɔ jɔs du am na ɔspitul we de du dis kayn tin ɔltɛm ɛn we gɛt ɛkspɛriɛns pan di eria.

Aw dɛn kin trit DIPG?

Dis kin sɔri smɔl fɔ yɛri, bɔt di tritmɛnt dɛm we de naw nɔ kin ebul fɔ mɛn `(DIPG)` ɔltogɛda. Bɔt dɛn tritmɛnt ya kin mek di pikin in layf lɔng fɔ sɔm tɛm, i kin mek di sik nɔ bɔku ɛn i kin mek di pikin fil fayn. di bren stem na ples we dεn mek wit di nεv tisu dεm we de kכntro di rili imכtant wok dεm na wi bכdi. So if yu tray fɔ pul di tumbu bay ɔpreshɔn, dɛn impɔtant nerv strɔkchɔ dɛn ya kin pwɛl.

So, dɔktɔ dɛn kin se ɔda tritmɛnt dɛn we nɔto ɔpreshɔn:

• Radiation therapy: Dis na di men tritmɛnt fɔ (DIPG). Insay dis, wan mashin kin yuz wan bim we gɛt raytin fɔ pwɛl di kansa sɛl dɛn. I de tray bak fɔ mek di wɛlbɔdi tisu we de rawnd am nɔ pwɛl bɛtɛ. Redyushɔn tɛrapi kin mek di tumbu smɔl, kil di kansa sɛl dɛn, ɛn i kin mek di sik nɔ bɔku. I go mɔs bi se yu pikin go gɛt redyushɔn tɛrapi ɛvride fɔ lɛk siks wiks so.
• Kɔtikosterɔyd: Yu dɔktɔ kin gi yu wan kayn mɛrɛsin we dɛn kɔl kɔtikosterɔyd bifo ɔ afta yu pikin gɛt raytin tritmɛnt. Dɛn mɛrɛsin ya kin ɛp fɔ ridyus di swɛlin na di bren ɛn ɛp fɔ kɔntrol di sayn dɛm. Dɛn kin ɛp bak fɔ ridyus di swɛlin afta dɛn dɔn trit am wit raytin. Bɔt, kɔtikosterɔyd kin gɛt sayd ɛfɛkt. Dɛn tin ya na we pɔsin kin want fɔ it mɔ, we i kin gɛt mɔ wet, ɛn we i kin chenj in maynd. Tɔk to yu dɔktɔ fɔ ɔndastand di bɛnifit ɛn prɔblɛm dɛn we dɛn mɛrɛsin ya gɛt.
• Kimotɛrapi: Tritmɛnt lɛk kimotɛrapi fɔ kɔmɔn kansa nɔ kin rili wok fɔ DIPG. Bɔt sɔntɛnde, yu dɔktɔ kin tɛl yu pikin fɔ tek pat pan klinik trial dɛn we gɛt kemotɛrapi ɛn redyushɔn tɛrapi.
• Paliativ kia:Palliative care professionals kin woke wit yu ɛn yu dɔktɔ fɔ mek wan plan fɔ kia fɔ yu pikin we go mek yu pikin in kwaliti layf bɛtɛ. Dɛn kin gi di mɛdikal, saykilɔjik, ɛn spiritual sɔpɔt we yu, yu pikin, ɛn yu famili nid we dɛn de dil wit diagnosis lɛk DIPG.

Yu dɔktɔ kin tɛl yu bak fɔ mek dɛn put yu pikin in nem pan wan klinik trial . Klinik trial na stɔdi we de tɛst aw nyu tritmɛnt dɛn sef ɛn wok fayn. Risach pipul dεn dכn no sכm kכntribyushכn dεm fכ (DIPG) kεnsar sεl dεm. Nyu tritmɛnt dɛm we de tɔch dɛn kwaliti dɛm de – fɔ ɛgzampul , mɔlikul targeted tɛrapi ɛn imyunotɛrapi – kin de tru klinik trial.

fכ egzampl, risechכr dεm no se bכku kεnsar sεl dεm gεt mכtεshכn we dεn kכl (H3K27M) insay di jin ``DIPG''. Nyu, ɛkspirimɛnt tritmɛnt dɛm we de tɔch kansa sɛl dɛm wit dis muteshon (ɛn ɔda wan dɛm) dɔn ɔlrɛdi de divɛlɔp ɛn tɛst dɛn na klinik trial dɛm.

Yu tink se dɛn kin mɛn DIPG?

Nɔ, dɛn nɔ go ebul fɔ mɛn Diffuse Intrinsic Pontine Glioma (DIPG). Di tritmɛnt we de wok fayn pas ɔl we dɛn de yuz naw na di tritmɛnt we dɛn de yuz fɔ mɛn pipul dɛn we gɛt raytin. Rɛdyeshɔn tɛrapi fɔ DIPG kin mek pikin in layf lɔng ɛn fɔ sɔm tɛm, i kin mek di sik ɛn kwaliti layf bɛtɛ fɔ sɔm tɛm. Dɛn nid nyu tritmɛnt dɛn we go wok fayn fɔ mek dɛn ebul fɔ no mɔ bɔt dis siriɔs kansa.

Aw lɔŋ pikin we gɛt DIPG kin liv?

A no se dis at fɔ yɛri. If dɛn nɔ gɛt tritmɛnt, bɔku pikin dɛn kin liv fɔ lɛk siks mɔnt afta dɛn dɔn no se dɛn gɛt di sik. Bɔrku tɛm, rεdyushכn tεrapi kin εksεnd dis tεm to nayn to ilevin mכnt. lεs dan 10% pan di pikin dεm de liv pas tu ia. Na nɔmal tin fɔ fil bad we yu yɛri dɛn statystik ya, bɔt i impɔtant fɔ mɛmba se ɔl pikin difrɛn.

Us kwɛstyɔn dɛn a fɔ aks di dɔktɔ?

Wok klos wit yu dɔktɔ fɔ ɔndastand di plan fɔ kia fɔ yu pikin ɛn di tin dɛn we go afɛkt dɛn tumara bambay. Nɔ fred fɔ aks ɛni kwɛstyɔn we yu gɛt. Na sɔm kwɛstyɔn dɛn we yu kin aks:

• Us tritmɛnt dɛn yu kin advays? Wetin wi go ɛkspɛkt frɔm dɛn?
• Aw ɔltɛm mi pikin go nid tritmɛnt?
• Aw ɔltɛm mi pikin go nid fɔ kam fɔ fala-ap apɔntin fɔ wach aw di kansa de go bifo?
• Aw wi kin ebul fɔ kɔntrol di bad tin dɛn we kin apin to pɔsin we gɛt kansa?
• Yu kin kɔnɛkt wi to palliativ kia savis ɛn sɔpɔt grup dɛm?
• Ɛni nyu risach ɔ klinik trial de we mi pikin kin tek pat pan?

Fɔ dɔn, tin dɛn fɔ mɛmba (Take-Home Message) .

Fɔ no se yu pikin gɛt Diffuse Intrinsic Pontine Glioma (DIPG) kin bi wan pan di tin dɛn we at fɔ yɛri as mama ɔ papa. Di pen, frayd, ɛn wɔri we yu kin fil kin rili pwɛl yu. Bɔt mɛmba se nɔto yu wangren de insay dis tɛm.

As yu de disayd fɔ du tritmɛnt insay di mɔnt dɛn we de kam, tek advantej pan ɔl di ɛp ɛn tin dɛn we yu gɛt. Tɔk opin wan wit yu pikin in dɔktɔ bɔt wetin fɔ ɛkspɛkt wit dis sik. If yu ebul, go to pɔrsin wae sabi du dɛn woke wae de gi yu palliativ kia. Aks fɔ ɛp frɔm yu padi ɛn fambul dɛn. Di tin we pas ɔl na dat, kɔntinyu fɔ gɛt kɔnekshɔn wit yu pikin. Tɔk to am, ple wit am, ɛn gi am lɔv. Mek i no se yu de wit am ɛvri step na di rod.

Insay dis tranga tɛm, e fayn fɔ tink bɔt yusɛf ɛn tek kia ɔf yu maynd wɛl bɔdi. If yu kɔntinyu fɔ strɔng, yu pikin sɛf go strɔng. Nɔto yu wan de, wi ɔl de wit yu.

` Diffuse intrinsic pontine glioma, DIPG, bren kansa, pikin kansa, pons, redyushɔn tɛrapi, palliativ kia