Leita frttum mbl.is

"I wish I hadn't got cancer when I was little"

These words came from Benjamin Nkkvi just a moment ago and the sorrow exploded inside the mom Crying. Benjamin has recently started thinking and speculating a lot about life - he is also turning 8 years this summer and has got the cognitive ability to understand that not everybody has been sick in cancer, have gotten through two bone-marrow transplants, been anethesiazed over 200 times, had several internal bleedings, and had so many blood-tests that one will never be able to count them. He alsoknows that we had to move from Iceland to Sweden last summer i a trial to cure his lung-disease - and he is now starting to feel the isolation hehas to live with, because ofhow immune-suppressed he is, and for the first time I(the mom) heard my overly positive, "happy go lucky" guy, talk about that life was a little bit unfear to him!!!! The "MothersHeart"feels smashed and squeezed, but still youcontinuetrying tohold the head high, listening, smiling tohim anddo your bestanswering all his speculations - inside the soul cries when you get the question "Mom, are you sure I will never get cancer again??".

Yepp, life can be tough and harsh, and surely it is extremely painful hearing all of Benjamins speculations - but though so beautiful that our MIRACLEtalks about his thoughts, settles with my "half-lame" answers, and then continous asking getting his Mohawk done (with a lot of gel!!!), watching the English, Spanish, and Italian leagues in soccer, play FIFA in his Play Station, and laughshis wonderfulunstoppable, laughter over the smallest things in life. A laughterthat gets everybody else to smile and laugh. Children's adaptability is exceptional and I admire Benjamin Nkkvi, Hrafnhildur Tekla, and Nikulas Ingi, over how they have tackled living a lifewith illness constantly hanging over their heads, for seven and a half year now, and stillthey haveand show so much joy and happiness living their life. THEY ARE MY HEROES AND ROLE MODELS IN LIFE Heart

The Mom

"g vildi ska ess a g hefi ekki fengi krabbamein egar g var ltill"

essi or fllu af vrum Benjamns Nkkva fyrir augnabliki og miki rosalega framkallai a mikla sorg hj mmmunni Crying. Benjamn er farinn a sp miki meira lfinu snu enda verur hann 8 ra sumar og er farinn a skilja a allir hafa ekki fengi krabbamein, fari tvenn beinmergsskipti, kringum 200 svfingar, fengi margsinnis innvortis blingar, og fari svo margar blprufur a aldrei verur hgt a telja r. Hann veit lka a vi urum a flytja r landi til a reyna a f lkningu vi lungnasjkdmnum sem hann greindist me sumar - og hann er nna a finna fyrir eirri einangrun sem hann arf a ba vi vegna ess hversu nmisbldur hann er og fyrsta sinn er g (mamman) a heyra ofurglaa strkinn minn tala um a lfi er svolti sanngjarnt vi hann!!! Mmmuhjarta kremju en fram heldur maur vallt hfinu htt, hlustar, brosir til hans og reynir a svara llum vangaveltum hans eftir bestu getu - en a innan grtur slin egar maur fr spurninguna "Mamma, ertu viss um a g fi aldrei krabbamein aftur??".

J, lfi getur veri tff og ungt, og svo sannarlega er lsanlega erfitt a heyra allar essar vangaveltur - en svo fnt a KRAFTAVERKI okkar skuli ra etta, iggja hlfmttlaus svr, og halda svo fram a bija um a lta setja upp hanakamb, horfa ensku, spnsku, og tlsku deildirnar ftboltanum, spila FIFA tlvunni, hlja stvandi, smitandi hltri yfir llu mgulegu..... Algunarhfni barna er einstk og g dist a Benjamn Nkkva, Hrafnhildi Teklu, og Nikulsi Inga, yfir v hvernig au hafa tekist vi a lifa me veikindum 7 og hlft r, og samt tt svo mikla glei lfinu. AU ERU HETJURNAR OG FYRIRMYNDIRNAR MNAR Heart


Lfi er list!

tla bara a hafa etta stutt dag - er enn gjrgsluskurdeildinni eftir agerir dagsins, er fremur linn og me tluvera verki en er samt binn a vera vakandi svolti og rfast yfir v a g tti mgulega ekki a f a fara upp deild ur en ftboltaleikir dagsins byrjuuCool!!

a voru semsagt teknar r mr 5 tennur (barnatennur, ar sem ekki var plss gmnum mnum fyrir r fullorinstennur sem voru komnar), sni tekin r lifrinni minni til a athuga hvaa hntur er etta er sem sst mun, og svo var ger magaspeglun ar sem rjr ar voru "kyrktar", .e. settar voru teygjur utanum rjr ar vlindanu ar sem r litu ekki ngu vel t og hefu geta fari a bla, a lokum voru teknir separ r maganum mnum - semsagt miki krukka kroppnum mnum dag!!!!

N er g loks kominn aftur upp deildina, en sem betur fer urfti g ekki a sofa gjrgsludeildinni v hefi mammslan lklega urft a sofa stl ntt - ekki a a a s a versta sem hefi geta gerst Wink.

Lt vita betur af mr morgun egar mr lur pnu betur - n er mr bara glatt og arf a gubba annig a mamma tlar a htta bili.

Me HrikalegriTffaraKveju,

Benjamn Nkkvi

Back home to Stenhamra :-)

I decided to write this in English while many of our friends are from foreign countries and it is not fare that they won't get the updates on Benjamins state.

Today we got back home from the hospital and Benjamin is the happiest guy in the world coming home to his siblings, father and home surroundings (in Sweden - he is not so sure what relation he has to Sweden he told me today; he likes living here but he is not sure he would like to live here for 2 years - well, sorry to say (and I didn't tell him), we don't know how long we will live in Sweden, but as long as there is hope for cure here in Sweden we will stay!!

Many of you might not know that Benjamin was diagnosed wth a very rare and difficult lung-disease(Bronchiolitis obliterans)in the beginning of the summer 2010 and therefore we rapidly moved to Stockholm, Sweden, at the end of August 2010, while the hope for cure is not large but at least there is a hope here in Sweden and Benjamin has got all the best specialists available to treat him.

Benjamins condition today is that he is heavily treated with Prednisolon/Cortison - in very large doses - while this is one of the medical protocoll when trying to treat BO, and he has now been on HUGE dosis for 5 months, much longer than was the original intention (so his immunesystem is very weak and he is having a lot of side-effects from such a heavy and long Prednisolon treatment)+ he is now using around 6-8 other medicaments twice a day, one of them being another immunesuppressive medicine used after transplantation (a little bit "nicer" than the one he used after both of his bonemarrowtransplants that cured his cancer).

Being medicated like this, Benjamin is like a spounge - sucking everything into he is immunesystem (he would love if I would name him Spounge Bob ;-)) - and last Tuesday we got the first smell of how sick he can become while his system is in a "latent" state. He had a whole day at the hospital, having "regular" bloodtests on Monday (checking the levels of Cell Cept in his blood - has to be very accurate), on Tuesday he had an appointment for a new liver ultrasound (the doctors had found a knotin his liver, so they wanted to do another one using contrast-liquid to better see what it could be). Benjamin had quite a lot of others things done this day, started to feel nocious at lunch - which I connected to the morphine he got in the morning - started vomiting but we went home and came home around 15 pm.

Unfortunately this shows how weak his immunesystem is - he rarely meets other people because of the danger of infection, and then he (probably) gets a virus at the hospital (Rota-virus) - so at 19 pm on Tuesday he had been vomiting so much and his face was completely grey and he was almost unconcious - so there we were again! Packing the bags rapidly, ordering a cab to get him to the Emergency Unit (couldn't leave our other children home alone, getting scared in a foreign country).

The short of the long - in all 7 years I have seldom seen Benjamin so sick,(maybe 10 to 20 times in all his history of illness), he was completely unconsious, his bloodtests showed that his body was "lethally dry" and in the doctors faces I saw anguish (they didn't know our Benjamin) and fear. Finally getting two needles into his body, to give him fluid, and then shooting 100 mg of some type of Prednisolon (in a trial to wake his body up), they had decided to put him to the ICU and were just going to move him over there - my guy suddenly woke up and said: "Mom, I am really happy with myself - this morning my stomich really hurt but now it is feeling better"!!! The doctors faces just became one big smile and they didn't believe what they were seeing (don't know our Benjamin, you know :-)) - there he was, having beeing completely "out of it" for several hours and when decided that he had to stay at the ICU he definetily wanted to have a say about this!!!!

This time we only stayed for 3 days at the hospital (the Rota-virus is a liiiiitle bit kinder than the Calisi/NorWalk) - got home on permission this afternoon, and I have one happy guy eating Dorritos, drinking Pepsi and Coke (with sugar - just for a few days while his sugarlevels are to high), waiting for Chicken Nuggets......and of course enjoying life and laughing his ass of because he LOVES LIFE and WANTS TO LIVE IT TO THE FULLEST!!!!!

Remember this, our dear friends - LIFE IS FOR LIVING IT, EACH MOMENT IS IMPORTANT, so try to take Benjamin as your mentor and LOVE and ENJOYLIFE!!!!!!

Jlastresslaus desember Stokkhlmi

Elskurnar mnar, n fer senn a la a jlum og tilfinningin eilti fjarlg, einn aventustjaki glugga, ein undurfgur firildasera spegli, risastr (akeypt of course) piparkkuhjrtu, og tilbi piparkkuhs (bara a setja saman - en a verur sko gaman!!) - Coop Konsum rokkar!!! Mamman fr a pla hvort stan fyrir ekki minnstu jlastresstilfinningu vri s a vi vrum ru landi og "num ekki a "detta" inn eitthva stress", en nei, s gamla fattai a jlastressi hefur hreinlega veri 0% sustu 7 r - vi erum orin svo vn a g hafi legi sptala desember og oftar en ekki allt fram a orlksmessu, annig a vi erum svo sju a halda jl me stuttum fyrirvara a sta ess a stressa er hamingjan flgin v a n er komin 11 desember og g er ekki sptala (allavega ekki inniliggjandi), mamman er trylltum vinnugr og tlar a vinna til 21 desember, og God hfum vi n tvo daga til a undirba jlin og a ngir okkur alveg Smile.

egar kemur a frttum af mr fer mamma sm flkju um hva skal skrifa - g meina, mr lur gtlega, er glaur og ktur flesta daga (Teklan og Nikuls sgu bi um daginn a sterarnir hefu rugglega svona "fug" hrif mig - g vri ekkert oft pirraur en aftur mti trlega fyndinn og brandararnir og hlturinn vru einkennandi, og g vri fyndinn sem aldrei fyrr!!).

Mikilvgt er a skilja a g er enn hskammtamefer sterum (er kominn r 30 mg, sem er sama og 2 mg kl niur 15 mg), vi erum a tala um steraskammta sem eru einu ori sagt "huge" og g er binn a vera eim san ann 30 jn og a er me lkindum a g skuli ekki vera verr farinn af aukaverkunum en g er!!!

Auvita eru aukaverkanir - hr blrstingur, g yngist elilega miki (ekki gott ar sem a er svo erfitt fyrir kroppinn a yngjast um 30% nokkrum mnuum, og eykur allt lag vva, lii, osfrv.), g er farinn a f tluvera hfuverki, fturnir mnir (vvaslen/vvareyta af langvarandi sternotkun) eru oft reyttir og reki mitt hefur minnka tluvert yfir aukinni yngd pls vvareytunni, lifrin mn virist ekki alveg lagi (sm hntur henni sem arf a skoa nnar - verur gert nsta rijudag), og svo mtti lengi telja.

En ar sem g er OFURNAGLI og elska lfi (OG FTBOLTA) btur etta lti mig - g f yndisleg hlturkst hverjum einasta degi, reyti af mr brandara og hef endanlega hfileika a sj a fyndna svo mrgu (meira a segja blprufunum og llu v lagi sem g arf a standa undir uppi sptala - get oftar en ekki fundi eitthva skondi vi langflestar sptalaheimsknir!!). g er byrjaur njum lyfjum (tek nna ca. 10 mismunandi lyfjategundir tvisvar dag!!!), en kvei var a setja mig nmisblandi lyf - sama lyfjaflokki og gefi er eftir lffraflutninga - bara nnur tegund en sast og eilti skrri. etta var ekki besta kvrunin en lknarnir hr hfu ekki ora a minnka sterana 6 vikur, aukaverkanirnar af sterunumjukust og jukust og v ekki orandi anna en a byrja a minnka mjg hgt og stainn setja inn Cell Cept sem (vonandi) btir upp sterana egar kemur a veiku lungunum mnum.

Ng um etta bili Cool. Pabbi urfti a skreppa heim slands nokkra daga og a sst best v hva miki er til af yndislegu flki sem langar a ltta okkur bi lund og hyggjum af fjrhag. Pabbi kom heim me risahangilri og aljlegt kreditkort ar sem bi var a leggja inn dga upph til a auvelda okkur a njta jlanna, .e. a geta keypt inn a sem vi urfum (sem er ekkert rosalega miki - vi verum gl rtt fyrir a ekki s hgt a gera og kaupa "allt"). etta voru samnemendur pabba r Klakinu og kkum vi ykkur llum fyrir - i eru yndisleg a hugsa ennan htt til okkar og langa til a gefa af ykkur ennan htt, etta er einlg krleiksgjf og verur maur alltaf klkkur egar flk tekur sr tma til a leggja manni li ennan htt Halo.

Me jlastukvejum,

Benjamn Nkkvi Gleipinni og Sprellari

Nsta sa

Hinn íslenski súpermann!

Benjamín Nökkvi Björnsson
Benjamín Nökkvi Björnsson
Alvöru ofurhetja sem komist hefur í gegnum tvenn beinmergsskipti með hjálp einstakrar ástar á lífinu!
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