Wi ɔl lɛk wi pikin dɛn bad bad wan. Aw wi kin fred ivin smɔl kol frɔm dɛn? Wel, imajin if di dɔktɔ tɛl wi se yu pikin gɛt sik lɛk kansa we at fɔ mɛn... nɔbɔdi pan wi nɔ lɛk fɔ yɛri dat. Bɔt sɔntɛnde na layf wi kin gɛt fɔ bia wit dɛn kayn harsh, harsh rial tin dɛn de. Tide wi de tɔk bɔt wan tɔpik we at fɔ mek wi maynd, bɔt wi fɔ tɔk bɔt am. Dat min se, aw wi go mek di ɔda pat pan di layf we pikin we de sɔfa wit sik we nɔ go mɛn, nɔ gɛt pen ɛn fil fayn as wi ebul.
Dis stori na bɔt wan yɔŋ bɔbɔ we nem Gebrɛl. I bin spɛn di las sɔmma na in layf lɛk ɛni ɔda yɔŋ bɔbɔ. I bin de hang ɔp wit in padi dɛn, go kamp, ɛn mek in mama ɛn papa fred bay we i de du tin dɛn lɛk fɔ dayvɔs na di skay. Dɔn, leta da ia de, i tek in yon layf.
Di day we Gebrɛl day nɔ bin sɔprayz. I bin dɔn de fɛt day ɔl di sɔmma. Afta we dɛn bin kam fɔ no se Gebrɛl gɛt akyu limfosaytik lukimiya we i ol 7 ia, i bin dɔn gɛt tu tɛm kemotɛrapi ɛn redyushɔn tɛrapi we i ol 15. Bɔt nɔto ɔl dɛn tin ya bin du fɔ kɔntrol di kansa. Afta sɔm mɔnt, di kansa bin kam bak.
Dɛn bin du bon mɛrɔ transplant as las tin fɔ du. Bɔt we dat nɔ bin wok ɛn di kansa kam bak, ɔl di op fɔ se i go wɛl ɔltin nɔ bin de igen. Insay di tɛm we mɛrɛsin sayɛns bin de go bifo usay tri pan ɔl 4 pikin dɛn we gɛt kansa kin mɛn, Gebrɛl in dɔktɔ ɛn in mama ɛn papa bin gɛt wan gol we bin de mek i fil pen bɔt we i ɔmbul.
“Dɛn nɔ bin de tray fɔ mɛn di sik, dɛn bin de tray fɔ kɔntrol am ɛn ɛp am fɔ liv di bɛst layf we i pɔsibul.” - Gebrɛl in papa.
Bɔt Gebrɛl bin liv lɔng ɛn gladi pas aw ɛnibɔdi bin de tink. Fɔ fayv mɔnt, i bin de jet-ski, jomp frɔm di skay, ɛn ple wit in dɔg. Afta sɔm tɛm, in imyun sistɛm we bin wik nɔ bin ebul fɔ fɛt wan bad bad fungal infɛkshɔn.
Wetin na Palliative Care?
Di tin dɛn we apin lɛk Gebrɛl in yon dɔn mek di wɔl no bɔt di impɔtant tin we fɔ kia fɔ pikin dɛn we nɔ gɛt bɛtɛ wɛlbɔdi . Fɔ tɔk am simpul wan, palliativ kia na di tritmɛnt ɛn kia we dɛn kin gi fɔ ridyus di sɔfa ɛn pen we pɔsin we gɛt sik we de kil kin gɛt ɛn fɔ mek in layf bɛtɛ .
Dis nɔto fɔ tray fɔ mɛn di sik. Bifo dat, na fɔ kɔntrol di sayn dɛm we di sik kin kam wit (lɛk pen, at fɔ blo, nɔs), fɔ gi di pikin kɔmfɔt pan filin, ɛn ɛp am fɔ spɛn di ɔda tɛm we lɛf fayn ɛn gladi as i pɔsibul.
Di tin we impɔtant pas ɔl: Palliative care nɔto fɔ "giv ɔp op." I de tɔk bɔt fɔ ad valyu ɛn kɔmfɔt to di de dɛn we lɛf na pikin in layf.
Wetin mek i at fɔ ivin tɔk bɔt dis?
Bɔku tɛm, i nɔ kin izi fɔ dɔktɔ ɛn mama ɛn papa dɛn fɔ ivin tink bɔt aw fɔ kia fɔ dɛn pikin dɛn we nɔ gɛt bɛtɛ wɛlbɔdi . Di men rizin fɔ dis na di rɔng abit we se "fɔ go na palliative care min se wi dɔn giv ɔp di fɛt."
Risach dɔn sho se dɔktɔ dɛn no di rial tin se "dis pikin nɔ go ebul fɔ mɛn" lɛk tri mɔnt bifo di mama ɛn papa. Bɔt i rili at fɔ tɛl di mama ɛn papa dat, fɔ rɛdi dɛn fɔ am. Na bikɔs ɔlman gɛt op fɔ gɛt mɛrɛsin na dɛn at.
Tide, 75% pan di pikin dɛm wae gɛt kansa kin wɛl. Dat na big big tin we dɛn dɔn du. Bikɔs ɔf dis, dɔktɔ dɛn kin pe atɛnshɔn ɔltogɛda pan tritmɛnt fɔ mɛn pipul dɛn . So, dɛn nɔ kin pe atɛnshɔn tumɔs pan wetin fɔ du if i nɔ pɔsibul fɔ mɛn am.
Bɔt di tru tin na dat, pikin dɛn we de day wit kansa kin sɔfa bad bad wan insay di las mɔnt dɛn na dɛn layf bikɔs dɛn kin gɛt bad bad tin dɛn lɛk we dɛn kin fil pen bad bad wan, dɛn nɔ kin blo fayn , dɛn kin taya pasmak, ɛn dɛn kin gɛt nɔys . Dɛn kin kɔntrol dɛn tin ya bɔku tɛm wit palliativ kia.
Wetin dɛn kin rili du na palliativ kia?
Palliative care nɔto wan tin. Na wan brayt we fɔ du tin we de jɔyn bɔku difrɛn tin dɛn. Wetin de apin ya na fɔ gi di pikin kɔrej, pan in bɔdi ɛn in maynd.
| Tayp fɔ kia fɔ am | Ɛgzampul dɛn ɛn diskripshɔn dɛn |
|---|---|
| Kɔntrol di pen | Gi strɔng pen kil lɛk mɔfin ɔ fentanyl. Gi smɔl dos dɛm fɔ antidipreshan fɔ di mɔsul ɛn jɔyn pen. |
| Fɔ kɔntrol ɔda sayn dɛm | Fɔ gi ɔksijɛn fɔ mek yu nɔ ebul fɔ blo fayn, fɔ gi yu mɛrɛsin fɔ mek yu nɔ fil fayn ɛn fɔ vɔmit, ɛn fɔ gi advays bɔt it fɔ mek yu taya pasmak ɛn fɔ mek yu nɔ gɛt blɔd. |
| Tritmɛnt na os | Sɔntɛnde, instead fɔ gi dɛn kemotɛrapi we dɛn kin put insay dɛn bɛlɛ, dɛn kin gi dɛn pils we dɛn kin tek na os. Dɛn tin ya kin ɛp fɔ kɔntrol di kansa pan ɔl we dɛn kin ridyus di sayd ɛfɛkt dɛn. Ivin savis dɛn de we kin kam na yu os (hospice care) we kin ɛp wit tin dɛn lɛk fɔ gi blɔd. |
| Saikɔlɔjik sɔpɔt | Fɔ advays di pikin ɛn in mama ɛn papa. Yuz tɛknik lɛk fɔ rid buk, hipnosis, ɔ gayd imej fɔ pul di pikin in maynd we dɛn de du tɛst we de mek i fil pen. |
Sɔpɔt fɔ mama ɛn papa dɛn
Dis na tɛm we rili at fɔ di pikin ɛn di mama ɛn papa. I nɔ izi fɔ gri se "yu pikin nɔ go ebul fɔ mɛn." Saykososial wokman dɛm kin ɛp mama ɛn papa fɔ gri wit dis harsh trut. Risach dɔn ivin pruv se mama ɛn papa dɛn kin ɔndastand di rial tin we dɛn de tɔk to dɛn kayn advaysa dɛn de pas we dɛn de tɔk to dɔktɔ dɛn nɔmɔ.
Insay Gebrɛl in stori, insay in las tu wiks, i bin gɛt wan nɔs we bin de na di say usay dɛn de mɛn pipul dɛn we dɛn de mɛn pipul dɛn we bin kam na in os. Dɛn bin gi am wan smɔl tin we i kin yuz fɔ injɛkt insɛf wit pen kil (Fentanyl) ɛnitɛm we i want. I bin ivin gi blɔd na os. Ɔl dis bin mek Gebrɛl ebul fɔ spɛn in las dez na in yon os, ɛn i nɔ bin de fil pen, wit in famili.
Afta sɔm tɛm, Gebrɛl bin wik, i lɛf fɔ it, ɛn i bin kam fɔ no bak. Pan ɔl we na bin tɛm we bin de mek in at pwɛl, in papa tɔk bɔt di day se i “i izi, i gɛt pis.” Wan aftanun, we Gebrɛl bin sidɔm na di sofa, i ol in papa in an ɛn lɔk in yay sote go.
Da nɛt de, Gebrɛl in sista bin drim bɔt in brɔda.
"I izi fɔ day?" i aks.
"Yɛs, i izi lɛk fɔ blo," i ansa. "I de fil so gud fo fit waka bak."
Mɛsej we dɛn kin kɛr go na os
- Palliative care nɔ min fɔ lɛf fɔ gɛt op.I de tɔk bɔt fɔ mek pikin we gɛt sik we nɔ go mɛn, in layf bɛtɛ.
- Dis kia nɔr de jɔs ridyus di pwɛl hat na in bɔdi lɛk pen, at fɔ blo, ɛn nɔs , bɔt i de gi di pikin ɛn in famili fridɔm na in maynd .
- Dɛn kin gi palliativ kia nia di tritmɛnt we de mɛn pipul dɛn. I kin fayn fɔ ɛni sik.
- If yu pikin de sɔfa wit siriɔs sik, tɔk fri wan to yu dɔktɔ bɔt am. Nɔr frayd, aks bɔt palliative care. I go bi big trɛnk fɔ yu pikin ɛn fɔ yu.
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