Goal 1 reached. We are going!

Wow!
Looks like we’re going to Mexico!

(Actually, we already were from before we started this fund raiser, the difference is now we can go without worrying how to pay for the treatment for the next 10-12 months.)

We are *extremely* grateful.

However, I have upped the limit of the fund raiser and kept it open. 

-Why?
-There are still many people who like to contribute and there are always unforseen circumstances.

Since Emma is on chemotherapy (and will be for a while), her immune system is not always working on peak efficency, and as such, she is prone to get quite ill much easier than the average child. If Emma gets ill while we are in Mexico, we need to pay for that care as well in addition to the treatments.

$5000 USD buys us 24 hours in an intensive care unit.

Only yesterday I read about a family with a girl who had to abort their cancer treatment in Monterrey due to their daughter getting pneumonia and spent 30 days in the ICU.

They lost $150,000 USD out of their funds just due to a pneumonia.
We don’t want to repeat the same thing.

We are going. YOU guys made this happen. I have lost count on how many thousands of people have joined together for getting Emma there and if anything, it shows that mankind is not as bad as the newspapers let us to believe.

We love you all.

Goal 1 reached. We are going! 2017-05-31T09:39:31+00:00

Worries and fund raiser

Today, I’m worried. Really worried.

In the past few days, we have increased Emma’s steroids to give her more energy, to make her happier, but all she wants to do is sleep.
Every day, just rest, just sleep. Nothing more.

We try and suggest things that she loves to do, but she just wants to sleep or lie down and be near Marta or me.

We started to form a plan on what to 6 days ago, and I am wearing myself out, doing all I can in order to prepare for what we need to make that plan work, to make that plan doable, to do the one thing left that we can do, to save Emma’s life.

But she is tired. All the time.

This is the girl who is always smiling, always laughed, always did things just to make herself and us laugh. Our very own little ray of sunlight in our lives. The girl that the doctor’s and nurses really remember for her energy and her strength.

We have to save Emma.
We have to do whatever we can to save Emma.

I am so afraid that unless we can get Emma to the ONLY private clinic in the world, that has managed to treat children with Emma’s terrible cancer to a state that there is no evidence of disease, we won’t have her for very long. She has already beaten the odds by being one of only 30% that survives one year with her brain tumor.

Our only hope to save her, is take her to Monterrey in Mexico for treatments, and stay as long as we need. Maybe 8 months, maybe a year. To pause our lives. To place our jobs, our careers, our hobbies, our friends on hold and just go. But to go, we need money. Money for her treatments, money for living expenses as we cannot work, money for plane tickets.

The treatments alone range from USD $15,000-$17,000 per treatment. She will need at least 10-12 treatments with chemotherapy cocktails and immune therapy. She will need several days in an Intensive Care Unit for monitoring after each treatment in the beginning to monitor her vital signs. There will be tests, medicines and everything we take for granted here in Sweden.

If we can’t raise enough money to do this treatment, Emma’s remaining time on this earth is most likely measured in months, not years. We don’t even know if she will see another Christmas.

We will need to raise around USD $250,000 in order to save Emma’s life.
Please help us now, before it is too late.

We will update what is going on www.goEmma.se and please share this.
We have a fund raiser setup at www.youcaring.com/goEmma

Please help us.

#goEmma


Emma’s tumor is called “Diffuse Midline Glioma”. It is a very close relative to “Diffuse Intrinsic Pontine Glioma”. The only real difference is that it is located next to the pons. It shares the same mutation called H3K27M, which is a very nasty mutation. This mutation is also the key.

Tests done on this tumor in he past 40 years have not managed to find a cure. 200 medical trials have resulted to nothing. Most of these trials are single drug trials. In this center in Mexico they recognize this, and is therefor using a mix of several chemotherapy drugs that are designed to attach this mutagen from several sides, to corner the cancer, if you will. It is also distributed through intra-arterial chemotherapy. Basically that means they administer the medicine right into the affected area rather than just distributing it in the normal blood stream.

Worries and fund raiser 2017-05-25T13:50:41+00:00

“Better now. It’s better now Daddy.”

NOTE: English translation below:

(Gammalt inlägg från 2 juli 2016)

“Bättre nu. Det är bättre nu Pappa”
Det är orden som möter mig när jag stressar in till min 3-åriga dotter mitt i natten. Det är orden som sedan ekar i mitt huvud när jag lagt mig i sängen och försöker sova efter att jag kramat och hållit om henne en stund.

“Det är bättre nu”.

Det är orden som jag har lärt mig hata. Det är orden som konstant påminner mig om den sämsta treårspresenten ett barn någonsin kan få.

Det är orden hon yttrar efter att tagit sig igenom en så kallad frånvaroattack, vilket är en lätt variant av epilepsiattack som bara håller på i några sekunder. Hon får dom ofta nu, flera gånger per dygn. Som mest upp till 10 gånger under en natt.

Tre dagar efter hennes treårsdag fick vi åka in akut till SÖS för dessa frånvaroattacker. Vi hade sökt via husläkare och bett att få en remiss nästan en månad innan men nu gick det inte att vänta längre.

9 dagar efter hennes treårsdag, fick vi reda på vad som orsakat dessa.

Våran dotter har en hjärntumör.

En hjärntumör!

Emma… som är så snäll, så artig, så klok, kan räkna till 20 redan, kan räkna till 10 på två språk till och som alltid varit full av liv och bus… tills nyligen.

Den är stor. Väldigt stor. Vi fick se den, och vi satt lätt chockade efteråt när vi förstod hur gigantisk tumören som sitter i lilla Emmas huvud är. Läkarna beröttar för oss att en så här ovanligt stor tumör får dom kanske in en gång varannat år. Den går dessutom inte att operera.

Detta är min verklighet nu. Jag är pappa till en underbar dotter med en elakartad hjärncancer som inte går att operera.

Vi går sönder om och om igen. Mitt liv har gått från trygghet till ovisshet. Från glädje till någon sorts limbo, där vi gör allt vi kan för att lilla Emma fortfarande ska orka vara glad och känna värme, men utöver det.. känns allt bara tomt.

Vi tar prover… och väntar… och väntar… och väntar.

Ni måste förstå hur galet det här känns. När vi först åkte in på torsdagen, säger läkarna att det ser ut som någon form av epillepsi, och lägger in Emma omedelbart. Jag åkte dit med alla möjliga saker till henne och Emma. Min sambo tillbringade natten med Emma på sjukhuset och jag försökte sluta vrida och vända på mig och få någon form av sömn. Dagen efter görs en EEG för att mäta elektriska aktiviteten i hjärnan. Dom mätte upp en avvikelse av “epileptisk aktivitet”.

Första dråpslaget… har Emma epilepsi? Det lät förskräckligt. Där och då var det ofattbart. Nu i efterhand låter det som … ingenting.

Vi var hemma under helgen som följde på permission. Emma hade en hemsk lördag med många attacker och inte orkade göra någonting. Jag ringde mina föräldrar som stöd och de kom ned sent på kvällen. Min far var tvungen att åka hem på söndagen på grund av möten och annat han inte kunde flytta på måndagen men min mor stannade kvar.

Söndagen var en ganska bra dag. Vi behövde det, det gav oss hopp.

Måndagen gjordes skiktröntgen av hjärnan. Vi hade nu försökt propsa på magnetröntgen sedan i torsdags, men fortfarande ville läkarna inte göra det. Under förmiddagen fick vi resultatet av skiktröntgen:

“Vi kan se att det finns en svullnad i hjärnan som påverkar kanalen med vätska som ska ned i hjärnbarken”, säger läkaren. Hon säger även två gånger med eftertryck “Det är INTE en tumör”.

De orden kändes just då som en gigantisk tyngd lyftes från våra axlar… Den mörka manteln av oro som vi hade omkring oss lättade för första gången på en vecka.

De ville dock göra en skiktröntgen till med tillsatt kontrastvätska för att se hur vätskorna flyter ordentligt i hjärnan. Den gjordes samma dag och vi fick vänta nästan 6 timmar innan läkarna kommer med resultatet. Vi har hunnit bli irriterade på att det ska ta sådan tid då vi förväntade oss att få åka hem efter att det var klart.

Läkaren kommer in och ger oss en riktig tegelsten i magen… igen.

“Det kan vara någon form av inflammation… eller det kan vara någon form av en tumör“.

Jag minns att jag blev alldeles kall. Kall och tung i magen. Det hopp vi fick bara några timmar tidigare bara rycktes bort och ersattes av en allvarlig oro. Det här var exakt en vecka efter att lilla Emma fyllde tre år. Nu tog dock läkarna oss på allvar och en magnetröntgen skulle göras så fårt som möjligt dagen efter.

Den här natten tillbringade jag med min sambo och Emma på sjukhuset. Jag kunde inte sova hemma, så jag tog bilen dit mitt i natten och lämnade min mor i lägenheten. Min plats var med min dotter och sambo.

Dagen efter, tisdagen, kom att präglas av oro och väntan. Magnetröntgen gjordes någon gång omkring lunchen. Jag minns inte exakt. Jag tror hon sövdes strax efter 11, och omkring 14-15 kom hon tillbaks till avdelningen, ätandes en glass och såg glad ut, den lilla skruttan.

Efter tre timmar hade vi fortfarande inte hört något. Vi petade på en läkare som undersökte, och det visade sig att röntgenavdelningen hade missat att skicka bilderna till specialisterna på Karolinska som också skulle granska bilderna.

Ytterligare tre timmar senare kom en läkare och en sköterska in i rummet där vi satt, och på hennes ansiktsuttryck visste jag redan svaret. Vi togs in i ett angränsande rum, och där fick vi bland de tyngsta besked en förälder kan få: Våran dotter har en hjärntumör. Den är väldigt stor. Den går inte att operera.

Vi flyttades via ambulans till Astrid Lindgrens Barnsjukhus redan samma kväll. Emma var jätteduktig i ambulansen… och när hon insåg att hon satt i en ambulans, sa hon “Ambulans? II-OO-II-OO-II-OO”. Lilla kloka söta skruttan.

Där är vi nu. I en tillvaro som är totalt orealistisk. Min sambo jobbar med beredningen av cancermedicin för patienter. Jag brukar ta med mina robotar som jag bygger och besöka barnsjukhus och cancersjuka barn för att pigga upp dom lite, och nu sitter vi själva där. Ja, vi inser ironin.

Just nu vet vi inget mer än detta. Vi väntar. Vi försöker göra det bästa av varja dag, beroende på vad Emma orkar med eller inte, beroende på hur många attacker hon får. Hon blir väldigt trött av attackerna, och medicinen hon får mot dom gör henne också väldigt trött.

Nästa vecka får vi åtminstone reda på något. Vi får reda på vad det är för tumör. Vi får reda på vad dom kan göra mot den (Vi vet redan att operation och strålbehandling är uteslutet), och vår någon form av roadmap. En roadmap som bara kan ha en utgång. Det finns inget annat alternativ.

Emma blir frisk.

Du kan hjälpa oss i kampen mot Emmas cancer du med! Dela den här siten.. och om du har möjlighet, donera en slant så vi kan ge henne den behandling hon behöver.

#goEmma

—-

(Old post from July 2, 2016)

“Better now. It’s better now, Daddy!”

Those are the words that greet me when I’m rushing in to my 3-year old daughter in the middle of the night. Those are the words that echo in my head when I’m in bed trying to sleep after hugging her and holding her for a little while.

“It’s better now.”

Those are the words I’ve grown to hate. Those are the words constantly reminding me of the worst birthday gift a three-year-old child can ever receive.

Those are the words she speaks after getting through a so-called “absence seizure”, which is a milder form of epileptic seizure only lasting for a few seconds. She gets them a lot now, many times each day. Up to 10 times in a night.

Three days after her third birthday we had to rush to the emergency room at SÖS [Södersjukhuset in central Stockholm] because of these absence seizure. We had tried to obtain a remit from our family practitioner for almost a month before then, but we were unable to wait any longer. 9 days after her third birthday, we were told what caused them.

Our daughter has a brain tumour.

A brain tumour!

Emma… Who has been so kind, so polite, so wise; who knows how to count to 20, how to count to 10 in two other languages, and who has always been full of life and mischief. Until very recently.

It’s big. Very big. We got to see it, and sat in shock afterward when we understood how enormous the tumour inside little Emma’s head is. The doctors tell us they receive tumour this extraordinary size perhaps every other year. It is also inoperable.

It’s become real. I am a father of a wonderful daughter with a malign cancer of the brain that is inoperable. We fall apart again and again. My life has gone from safety to uncertainty. From joy to a form of limbo, where we do all we can to make little Emma able to remain happy and feel warmth, but beyond that… Everything just feels empty.

We take tests and wait… and wait… and wait…

I want you to understand how insane this feels. When we first went in on Thursday, the doctors tell us it appears to be some kind of epilepsy and Emma is hospitalized immediately. I drove there with all sorts of things for [Marta] and Emma. My significant other spent the night with Emma in the hospital and I tried to stop tossing and turning and try to get some kind of sleep. The next day they perform an EEG to measure the electric activity of the brain. They detected a deviation of “epileptic activity”.

The first big blow… Does Emma have epilepsy? It sounds dreadful. There and then it was unfathomable. In retrospect it sounds like… nothing.

We stayed at home over the following weekend, on a leave from the hospital. Emma had bad Saturday, with several attacks and couldn’t do anything to fend against them. I called my parents for support, and they joined us later that evening. My father had to return home that Sunday, due to meetings and other commitments on Monday that couldn’t be rescheduled, but my mother stayed.

Sunday was a pretty good day. We needed it, it gave us hope.

On Monday they did a CT scan of her brain. We had tried to push for an MRI since Thursday, but the doctors still didn’t want to do one. Late Monday morning we get the results of the scan.

“We can see there’s a swelling in the brain that’s affecting the channel filled with fluid destined for the cortex”, the doctor says.
She also says, twice, with emphasis “It is NOT a tumour.”

Those words lifted a giant weight from our shoulders. The dark cloak of worry we had around us lifted for the first time in a week.

They wanted to do a CT with added contrast fluid, to observe the fluids flowing properly inside the brain. It was done the same day, and we had to wait 6 hours before the doctors return with the result. We had grown irritated over how it can take so long, as we were expecting to return home after we were done with it.

The doctor returns and places a heavy brick in our gut, again.

“It may be some type of inflammation… Or it might be some type of tumour.”

I remember becoming completely cold. Cold with a weight inside my stomach. The hope had only a few hours ago had been snatched away, and replaced with a serious worry. This was exactly one week after Emma turned three. This time the doctors took us seriously and an MRI was scheduled as soon as possible, the very next day.

This night I spent with my girlfriend and Emma at the hospital. I couldn’t sleep at home, so I took the car there in the middle of the night and left my mom in the apartment. My place was with my daughter and girlfriend.

The following day, that Tuesday, was marked by worry and waiting. The MRI was done around lunch time. I can’t recall. I believe she was put under a little after 11, and was back in the ward around 2 or 3, eating an ice cream and looking happy, the little sweetie pie.

After three hours we still hadn’t heard anything. We tapped an examining doctor on the shoulder, and it turned out the X-ray department had overlooked forwarding the images to the specialists at the Karolinska [hospital], who were also supposed to inspect the images.

Another three hours later a doctor and nurse came into the room we were in, and by the expression on her face alone, I had the answer. We were brought into an adjoining room, and there we were given the most dreadful news a parent can receive: Our daughter has a brain tumour.
It is very large. It cannot be operated.

We were taken in an ambulance to the Astrid Lindgren Childern’s Hospital that same night. Emma was very good inside the ambulance. And when she realized she was sitting inside an ambulance, she said. “Ambulance? EE-OO-EE-OO-EE-OO”. My clever little sweetheart.

That’s where we are now. In an existence that’s completely unrealistic. My live-in girlfriend works preparing cancer medication for patients. I will bring the robots I build to to visit children’s hospitals and cancer-stricken children to cheer them up a bit, and now we’re there ourselves. Yes, we can appreciate the irony.

Right now we don’t know any more. We wait. We try to make the best of each day, depending on what Emma can, or can not do, depending on how many attacks she has. She gets very tired from the attacks, and the medication she’s given to combat them also tires her a lot.

At least we’ll be told something next week. That’s when we find out what type of tumour it is. We’ll be told what they can do against it. (We already know surgery and radiation therapy are off the table) and some type of road map. A road map with only one possible outcome.
There is no alternative.

Emma will get well.

#goEmma

You can help us and Emma in her fight against this brain tumor as well! Please share this site, and if possible also donate a sum to get Emma where the only treatment in the world that can save her.

“Better now. It’s better now Daddy.” 2017-05-25T12:38:57+00:00

#goEmma – Help us save Emma’s life!

When Emma turned three, she received three birthday gifts:

– a new bed
– a tricycle
– an inoperable brain cancer the size of two normal eggs

Emma’s tumour is called Diffuse Midline Glioma. It is a new entry in the WHO database of brain cancers in the dreaded section of brain cancers known as DIPG.

(The grey area in the middle, that’s her tumor!)

DIPG is one of the deadliest brain cancers out there. It is very aggressive, grows fast, and adapts to most attempts to get rid of it.

Emma has been fighting this for a year, and have already beaten the odds by being one of the 30% that makes it past the first year. However there is some light at the end of the tunnel. There is ONE private clinic in the world that focuses on DIPG, that has managed to cure this incurable cancer version.

This hospital lies in Monterrey, Mexico, and in order to save Emma’s life, this is where we need to go. Now

If we don’t go, Emma will most likely never see her fifth birthday. That, is a future I cannot fathom living in.

These treatments are very expensive and takes time. We estimate the need to be in Monterrey for somewhere around 8 months, The price for flights is so high that we need to stay in Monterrey, since Emma will need to be near the clinic that treats her.

The estimation is at least 12 treatments over the course of these months, and more to come afterwards, but the cost for ONE treatment is about USD $15,000-$17,000, (or for you Swedes, somewhere around 130,000 SEK). For EACH treatment. Add costs for several days in the Intensive Care Unit, cost of living, air fare, the fact that we need to go to Mexico on a tourist VISA and are unable to work during this time, the costs are staggering, to say the least.

We estimate a need of USD $250,000 in order to give Emma the care she needs. Simply put, we don’t have that kind of money.

Please help us, by sending us a donation to be able to save the life of a wonderful, happy girl who really, truly is a ray of light. A girl who is so unbelievably strong in all this. A girl who has not yet had the chance to live her life.

If you cannot help us financially, you CAN help us by sharing the story. The more this spreads, the more we can raise for our daughter. Share. Like. Comment. Post.

Please help us.

DONATE NOW

As a parent, your entire world collapses when your child receives a diagnose like this. Initially, it was thought that the unusually large tumor had grown with her for a very long time, and was therefor very slow growing.

Unfortunately, the doctors were wrong.

Emma’s tumor is highly aggressive, highly adaptive, and with normal cancer treatments, her chance of survival is virtually non existent. This cancer is a Killer.

Emma has had extensive chemotherapy, radiotherapy and brain surgery. It has resulted in her hair on the sides of her head is gone, burn marks and scars on the skin, and a girl that is tired, have problems with her balance, and no energy for anything, not even the things she used to love.

Emma is the strongest one of us all. She has taken all this medicine and all these treatments and rarely ever complained. Even when she was waken up in the middle of the night every 15 minutes to check her vital signs after surgery, she still mumbled “Thank you, Doctor” before she turned around and went back  to sleep.

Our only hope to give Emma a fighting chance, is to take her to a specialist clinic in Monterrey, Mexico, where they are doing an advanced treatment for just her type of cancer, and are actually giving hope to parents like me, like my fiancée.. and for Emma.

Emma is now turning four years old on June 13th. That’s one year with her cancer.

If we don’t go, she may never see her fifth birthday.

We want our daughter back. The always smiling, always happy, always filled with laughter.

Please help us. You’re our only hope.

DONATE NOW
#goEmma – Help us save Emma’s life! 2017-05-25T13:42:38+00:00