#goEmma – Third treatment update

As always: Should you want to help us in our fight for Emma, please visit:
http://youcaring.com/goEmma/
In Sweden you can also send a Swish to: 0767-608360

Things weren’t supposed to be like this.

Emma was supposed to be reading, to be running around, playing, full of life, full of mischief, full of laughter.

Don’t get me wrong. She is still most of those things, but it is always with a shadow of sadness that I look at her. Seeing who she is, inside, seeing who she would *like* to be.

Emma is frustrated. She can’t walk properly. She had to back on diapers. She is falling behind on development.

She is smart, absolutely, but she spent the last year in and out of hospitals, under treatments, and due to her balance, she has started to become insecure. Insecure about herself, insecure about her abilities to walk, and that has pushed her to be spending more time at the kindergarden with kids 1-2 years younger than her.

Life here in Mexico is not complex. We wake up, we spend the day with Emma, trying to keep her as entertained as we can in between treatments.

Emma has now had her third intra-artierial treatment and her first immunotherapy.

As always, She has done these without almost any side effects at all.

However, the tumour has not responded much.

The tumour has not grown since February, since before the radiotherapy started, which is a good sign in itself, but considering that so many other kids here in Mexico have tumours shrinking, this is really what we had been hoping for.

The doctors pull up MRI images, comparing before and after, and suggesting that the grey area on the image to the left has a few lighter areas in them than the area to the right. I squint and look. I look again. I am not sure. Not at all.

Truth be told, if Emma’s tumour never grows again, the threat to her life is more or less over, but we don’t know. We don’t know if she is responding, if the tumour is just biding its time after the radiation, as is often the case with these tumours.

Are we halfway across the world for nothing? That is the greatest fear we have at the moment.

Then again, Emma’s mood has changed. She wants to play. She plays by herself, she wants to go playgrounds and play, and have fun. She is more happy, she laughs more, she is more full of mischief, and her left eyelid, has not been as open as it is now in a year. All these are positive signs that something is happening in the right direction, we just wish we’d see more clear evidence in the MRI scans.

It feels like we’re treading water. One treatment at the time, hoping that Emma’s tumour at least have not progressed, hoping that we can see some clear evidence that the treatments are working.

We are now doing immunotherapy, which costs roughly $32,000 USD (over 260.000 SEK) every 17 days. It feels like we are stuck in a monopoly game. Pay $32,000 USD and do not pass ‘GO’. The amounts we are paying for her treatments would be totally impossible if it wasn’t for all of you.

On the plus side, after a long letter from our oncologist in Sweden, where he stated in clear Swedish just how bad the odds are, and the Swedish health care system do not have access to anything that can cure or even halt the progression of Emma’s tumour, and that we are here in Mexico for Emma’s treatments, at least Försäkringskassan (The Swedish Social Security system) has approved our parental sick days for Emma even though we are not currently in the country.

The one possible scare we have left is the issue if a shunt. Emma has a lot of cerebral liquids in her brain, and it is not getting better. If we need to get a shunt installed in her brain, it is something we would feel much comfortable doing in Sweden.

Oh, the doctors here are fantastic, no doubt about it, but not all the health care professionals around are as meticulous about disinfecting their hands or using rubber gloves when caring about patients, and when it comes to brain surgery, it is vital that there is as little chance of infection or inflammation as possible, since it can be directly fatal.

We might return to Sweden for having this procedure done at home in October. We have hopes that it might help Emma in regaining her balance and possibly can get her off diapers again.

In the mean time, we are here, fighting for her one day at the time. Some days are harder on us than others. Some days are easier.

But Emma is such a trooper. She is by far the strongest of us all.

#goEmma

#goEmma – Third treatment update 2017-08-13T02:44:44+00:00

#goEmma – how to spend $30,000 USD in one week

The past few days have been spent with Emma going to various playgrounds, hoping to encourage her to walk more. We have also done sessions in the pool where she have been walking back and forth in order to exercise her legs.

The forthcoming weeks will be tough.

We start tomorrow, Thursday the 27th when Emma will be sedated and approximately 1.5 dl of her blood will be taken. From this, he white blood cells will be extracted and the T-cells will be primed to recognize Emma’s cancer cells.

Tuesday and Wednesday next week, Emma will undergo what is called “light chemotherapy”, which is the equivalent of the normal chemotherapy she has gotten back home. Just sit and wait while the heavy drugs are pumped into her body intravenously.

Thursday, August 3rd, Emma will undergo her third inter-arterial chemotherapy treatment, which also includes another MRI and re-introducing the primed T-cells into her body, so her own immune system can start fighting her cancer.

Thursday is also the day we will get some results of how her tumour has reacted since the last round of chemotherapy.

Many children get a high fever for the next week after the immunotherapy, and how Emma will react we don’t know. We do know that a fever, or at least higher temperature, is a good sign, as it can be a sign that her immune system is working hard against the tumour.

This also means that in the forthcoming week, we will be spending well over $30,000 USD (or about 300.000 SEK) on Emmas treatment.

And that is for ONE round of immunotherapy. Emma will need at least 4-6 more.

Then we are back on “normal” arterial infused chemotherapy only, and we have no idea how long we will be on that treatment.

Thank you for supporting us.
www.goEmma.se
Swish: 0767-608 360

#goEmma – how to spend $30,000 USD in one week 2017-07-26T14:30:04+00:00

Balloons for the cancer kids

One of the things I’ve occupied my time with here in Mexico, is to learn how to make assorted balloon animals to cheer up the other 40 or so kids that are here for the same cancer treatment as Emma.

I have never worked with balloon twisting, I learned a handful some 25 years ago, but since they are so generic, I figured I needed to up my game a bit.

Whenever we go to the hospital with Emma, I am taking some balloons with me, and here are a few of the designs I’ve started learning, to get away from “poodle, generic dog, dachshund, giraffe and sword” which were the only ones I could do prior to coming here.

Let me just say, that when you see a child that is so ill it has problems communicating with its surroundings and you know that its mind is still fully working, still fully cognitive, almost bouncing up and down from tiny convulsions caused by laughter, it is a very moving moment, and something I will keep on doing for any of these kids or their accompanying siblings that are here.

Next big issue is: Where do I get good quality balloons when I run out? 😮

Balloons for the cancer kids 2017-07-19T19:05:46+00:00

Second treatment done.

On Monday this week, we did the second treatment of Emmas tumour here in Mexico.

Since the first treatment, 18 days earlier, Emma had been tired for the first week, her legs were really failing her badly for the first couple of days, but she soon snapped back to normal.

We have seen a change in her mood, she likes to have more fun, is more engaged in the things we do, and have started playing with things spontaneously. All this is really good signs. We have also got her to stop taking steroids.

The steroids are used to reduce swelling inside the head, but also to increase mood and increase appetite. However, in this program that we are on, getting rid of the steroids is a must before going to phase 2, the immunotherapy, which is really where the big strides against the tumour is happening. As far as I understand, the steroids themselves suppress the effectiveness of the immunotherapy, so it cannot be done until Emma is rid of them.

Next treatment, which is in a little over 2 weeks, we will be getting our first immunotherapy session. It also means that the cost per treatment is going from about $15,000 USD per session (about 140.000 SEK) to over $30,000 USD (close to 300.000 SEK per treatment).

Yes, health care really costs this much. In fact, what we have been getting for the money we paid out is far cheaper than the actual cost would be back home in Sweden, just that our social health care service picks up the bill.

Emmas tumour has not shrunk, but it has not progressed further. This, in combination that we have removed the steroids and she is still in good mood, is a big step forwards.

Right now, Emma is resting, she is a bit worn out after the treatments, but no nausea, no vomiting, no headaches. All very good signs. It also means that the scare of possibly having to surgically implant a shunt is over for now. Clinically, she is doing great.

Next step is to get a follow up where all the MRI images will be shown and we will see comparison of the tumour prior to the first treatment and prior to the second treatment. After that, we will plan for having her blood draw, which is needed for the immunotherapy, and for a light chemotherapy session and introducing the now special force trained white blood cells back into her blood stream and triggering her immune system to start attacking the tumour!

Second treatment done. 2017-07-19T17:44:06+00:00

FÖR I HELVETE FÖRSÄKRINGSKASSAN!

(Apologies for this post being in Swedish. It is about the ineptness of the governmental social network that is supposed to help you when, for instance, your child gets cancer…)

Nu är det i princip klart. Försäkringskassan godkänner inte läkarintygen på cancersjuka Emma ens för VAB hemma i Sverige, och vägrar betala ut VAB när vi behandlar henne i utlandet för egna pengar.

I korta drag innebär det att försäkringskassan berövar oss ca 30.000 kronor efter skatt , pengar vi i stället måste ta från Emmas behandlingspengar PER MÅNAD för att kunna överleva och leva här i Mexiko.

Det innebär att vi nu under den tidsrymd vi beräknar befinna oss här, inte har råd till alla behandlingar som Emmas cancer kräver, som krävs för att rädda hennes liv!

I förlängningen så är det alltså byråkratin på försäkringskassan som gör att vi kanske inte har råd att rädda livet på vår dotter!

Vill ni hjälpa oss att stötta oss i behandlingen, och bidra lite extra för att hjälpa oss kompensera för det här idiotiska beslutet, går det bra att Swisha till 0767-608 360 eller donera via paypal till micke@askernas.com eller gå in på www.youcaring.com/goEmma

Bli månadsgivare här:

http://www.goemma.se/become-a-monthly-donator-for-emma/

#argsomettbi
#goEmma

Det är två saker som just nu ställer till det för oss. En lösbar, en icke lösbar.

1. Läkarintyget från vår onkolog som visade en klar försämring skrev “oviss framtid” och ingen tidsbestämning på läkarintyget då det i Sverige bara finns ett slut, men man vet inte hur lång tid det tar.
Då det inte finns ett slutdatum, har F-kassans regler som säger att det slutar gälla enligt dem efter två månader. Emma är alltså inte längre allvarligt sjuk, enligt dem, så vi skulle inte få vabba i Sverige utan ett nytt intyg. Det går att lösa.

2. Vi avkrävs (helt plötsligt) på ett intyg från Svenska läkare som säger att Emmas tillstånd inte blir sämre av resan eller behandlingen här. Något en Svensk läkare aldrig kan skriva, då detta är en experimentell behandling, en medicinsk trial, som görs utan att de behandlande läkarna eller sjukhuset här har publicerat specifika detaljer om behandlingen. Att Emma kommer att dö om vi är hemma tas ingen hänsyn till. Alls.

FÖR I HELVETE FÖRSÄKRINGSKASSAN! 2017-07-14T15:20:15+00:00

An update from Mexico

Wow!

On June 27th, we set sail (well, technically we flew) for Monterrey in Mexico.

After a few very stressful weeks, we managed to pack our personal belongings, putting our stuff and essentially our lives in storage and left all we know for an unknown future.

We were scheduled to have one stop in New York, and a restful 4.5 hours before proceeding to Mexico. Plenty of time to go through immigrations, pick up our bags, go through customs, recheck the bags, grab something to eat and finally go through the security check again before boarding the plane. An easy trip.

Or so we thought.

The plane was about 2.3 hours delayed from Stockholm!

This made our lay over time very short, and once we arrived at JFK airport, the personnel that was supposed to operate the gate was not there, so we had to wait an additional 15 minutes for them to arrive.

Once we got off the plane, we had 1 hour 35 minutes until our next flight was leaving, and we still had to go through US immigrations, a procedure that sometimes can take up to two hours, depending on when you arrive. After immigrations, we still had the luggage, customs, rechecking the bags and a security check to do.

Fortunately, we had booked wheel chair assistance for Emma, as she has issues walking, and that made all the difference for us. We had someone to drive around Emma in a wheel chair, and got access to all the fast lanes available.

Once we got to the security check for boarding, with 45 minutes before the plane should take off, 4 out of 4 bags were scheduled for random checks. The medication, the electronics, everything. Typical.

We hade it out of there, just in time. Once we arrived at the gate, the boarding started almost immediately. We were going to make our flight. We were going to make the first appointment which was the next day!

Monterrey is a very beautiful city. It is in fact several cities grown together, sort of like Los Angeles, and we technically spend most of our time in San Pedro.

Our first consultation with Emma was on Wednesday the 28th, and it went well. The list of complications that could happen during the procedure included stroke. Not a thing you really want to hear when you’re going in for a severe treatment like this.

Normal side effects are: headache, back pain, tired, dizzyness, back pain, nausea, vomiting.

On the morning of June 29th, we went in at 9 am to the Hospitales Angeles de Valle for our first treatment. After paying the hospital fee of $87,000 mexican pesos (not including the cost of the medication and the fee for the doctors, which will be at least twice that amount; roughly $15,000 USD in total (or in Swedish krona: about 140,000 SEK) and several hours of waiting, Emma got rolled in to do her first MRI and do the arterial incision treatment.

Two hours later, we are standing in the Intensive Care Unit waiting for her to wake up. Dr Siller came in and told us that everything had gone very well, the catheter had been inserted in the groin, with a small hose going all the way up to the brain and the procedure had been a success.

While drifting between sleep and half awake, her pulse rate is fluctuating. Not something you want to see, but her pulse went as low as 48 beats per minute and sometimes up to over 90 beats per minute. Fluctuations as such is not bad, but this was going up and down and quite erratic, and was a bit unsettling.

We were told that it could have to do with the anaesthetics, and the fact that she was half asleep, half awake and drifting back and forth. Someone also mentioned this could be due to the steroids.

Fortunately, her pulse went back to normal, and once she woke up, she only wanted one thing: food!

First meal after this experimental treatment: A banana!

After we got rolled out from the ICU a few hours later and spending the night at the hospital, Emma woke up in a great mood (way too early for me, as usual) and demanded food. I mean that. Demanded.

She got her favourite: Scrambled eggs.

We’re now at two days after the treatment, Emma is doing fine, no visible side effects, but she is rather tired. That’s ok. I’ll take tired any day over any of the other side effects.

Our most pressing hurdles is our apartment in Stockholm, which is still not rented out, and it bleeds money. We need to get our lovely place rented out as soon as possible, so please help and share this link:

http://www.bostaddirekt.com/Private/estate.aspx?id=34638

We will be staying here in Mexico with Emma and have treatments every 17 days with time for Emma to recover in between and once we start doing the immunotherapy, costs will go through the roof: ONE immunotherapy treatment costs about $30,000 USD, or in Swedish terms: About 250,000 Swedish krona.

We have at this point no idea how many Emma will need, but the variation is somewhere between 4-7 treatments, just to give you an idea of how much it will cost us.

As usual, if you can, please donate on https://www.youcaring.com/goEmma or if you are in Sweden, you can always send a Swish payment to 0767-608 360.

Thank you all from the bottom of our hearts for giving us the chance to save Emma’s life.

-Micke, Marta and Emma.

#goEmma.

An update from Mexico 2017-07-01T16:34:31+00:00

Finally!

My dear friends.

first off I must say that I was rather taken back by all the love and care shown by everyone for little Emma. We know we have a very wonderful and special little girl, and I look forward to the day she is old enough and I can show her just how many people’s lives she has already touched.

Since we started the fund raiser, we managed to get it viral, with several articles in most of Sweden’s biggest newspapers. Celebrities and others have shared, retweeted and so many people have helped us reach the first stepping stone: To get enough funds that we can go to Monterrey in Mexico and start Emma’s treatment.

We got word last night that they want to start Emma’s treatments in about 2 weeks, and have asked that we are on location before the end of the month.

We have reached over $250,000 USD, which is a great start, barring any unforeseen circumstances.

What will the money go to?
Two words: Emmas treatments.

Emmas very expensive treatments, which every time will include a full MRI scan, a day in the Intensive Care Unit (ICU), the very expensive drugs used in the chemotherapy, and the doctors and nurses used in the special procedure. The early treatments will cost around $15,000-$17,000. Each.

When Emma is well enough to move in to phase two, the immune therapy is added on top of this, which bumps the total cost per treatment up to around $25,000-$27,000.

In case Emma gets ill, or needs more care, and requires intensive care, it is also something we need to pay for, and the cost of this is about $5,000. Per day.

The doctors Dr Siller and Dr Garcia have their offices in the children’s hospital Clinica 0-19 in Monterrey, but the MRI’s and the procedures and actual treatment of Emma will be done at the Hospitales Angeles.

Emma will be receiving treatments every 3 weeks, roughly to begin with, and the precise schedule of when the different types of treatments, is all relative to how she will respond to her treatments.

In two weeks time, I need to sort out all paperwork here in Sweden, I need to make sure to all authorities that we are not emigrating, we are simply going on a long trip to treat our daughter, I need to rent out our apartment, need to find a place to stay in Monterrey and sort a number of things in the mean time.

Thank you all from the bottom of our heart.

Today is a good day.
Today is the day when this emotional roller coaster between no hope and almost utter despair that we’re on, actually brings hope.

You made this happen.
You made this possible.

You have been carrying us when we have been so worn out from constantly banging our heads against the wall.

For that, I can’t ever thank you enough.
Now, let’s fight Emma’s cancer together.

#goEmma

Finally! 2017-06-15T09:19:53+00:00

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

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(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