Sad day

It is my sad duty to inform you that Emma Askernäs, our beloved daughter passed away in the evening of September 2nd, after fighting her horrible cancer, Diffuse Midline Glioma, for 38.5 months.

Emma was a brave fighter. Only 50% last 5-9 months, and only 10% lasts two years.

We love her so and she is missed by us all.

Rest in peace, Emma. I love you.

Sad day2019-09-02T23:07:49+00:00

Worst news possible

Emma has been growing increasingly tired the past weeks, and her energy to do things has just dwindled down to nothing.

Now, at times, she is struggling to breathe, it feels like she is fighting for every breath, and as a result her pulse is much higher than usual.

Finally, after fighting for it for weeks, we finally got a MRI this week. This was Tuesday.

Then came the results on Thursday.

Bad day.

Bad MRI results. Emma’s tumours are all growing.

Doctors have officially given up all hope of curing or even slowing down the tumour.

All treatments have stopped as they have proven themselves useless against her tumour and Emma is now on pallative care.

Our time with Emma is now extremely limited and we will do our best to make her comfortable and happy.

We need some time to land in this new reality and I humbly ask that you don’t call. We are reserving that for the immediate family for now.

Also, please don’t send links to potential cures you may have read about. We have done all we can do at this point and the ONLY thing you’ll accomplish is giving us anxiety and a feeling of not done everything in our power to help Emma.

We truly have.

#fuckcancer

Worst news possible2019-06-29T09:15:26+00:00

From Bad to Worse

I feel like the wind was knocked out of me Wednesday.
Once again, the MRI scans showed very very bad results.

Even though the large tumour in Emma’s Thalamus (central part of the brain) and the smaller, more aggressive outgrowths around the temples have not moved much, there is “significant growth” of the tumour in her cerebellum.

Compared to a few months ago, this area is almost doubled in size. I have outlined the area in red. (Left picture is now. Right picture is less than two months ago).

At this moment, the doctors have ONE more chemotherapy drug to try. One.

Let’s say that since it is the last one, it is not the one they feel is most likely to work on Emma’s tumour.

Unless something new has come over the horizon on the conference in Budapest her doctors are attending today and tomorrow, we’ve pretty much reached the end of the road as to what we can throw at her tumour.

Yesterday , Emma woke up early and in a great mood. She has no idea…

From Bad to Worse2019-04-05T08:13:08+00:00

Long overdue update on Emma

Hello all.

Firstly, I’d like to apologize for not updating you in a long while.

We had plans on returning to Mexico, but mere hours before the flight, Emma started having cramps and severe pain in her leg, so instead of going to the airport, we went to the emergency room.

Once she was ok (We still don’t know what caused it), we were too far away from the latest MRI scan and decided to wait for another scan, which was scheduled on May 22nd.

The MRI in May showed the worst news possible. Emmas tumour had started to grow again. Not only grow, but it had also spread to a new area in the right frontal lobe and her cerebellum.

A second round of MRI was done a month later and it confirmed that not only was the new growth active, it was also very aggressive and had in just four weeks grown enough to so you could clearly see it on the images with your own eyes without taking any measurements or any knowledge about MRI scans.

The decision was taken to give her a second round of radiation, but before this could begin, Emma was again struck with bad news as she contracted a very severe case of pneumonia. Her bacteria level in her blood was extremely high, and she spent 10 days in the hospital with intravenously applied strong antibiotics and fluids.

Once her pneumonia was cleared and she was back to full health, she still needed to wait 6 weeks before she could be sedated to even do the radiation planning.

This means her tumour had over 2 months to roam free and grow aggressively.

One week after we started the second round of radiation (We started on August 6th), she was not doing well, and had her first rather big seizure in 18 months. Triggered by the treatment, we think. Emmas state was quite weak during this period.

After the radiation period of two weeks were at an end, Emma started to get better again. She even started Kindergarten again for a few weeks, when she again started to feel extremely tired. She started sleeping 18-19 hours per day.

After a second trip to the emergency room (they sent us home the first time) they found out that her heart rate was dangerously low. Her heart rate was around 50 beats per minute, even down to 41 when she was sleeping. At this point in time (October 6-7) I was sure we only had a little over a week left with her. Luckily, I was wrong.

We still don’t know what caused this, but the tumour in her cerebellum is very much a likely culprit. Her heart rate was back to normal a few days later, but she was exhausted for weeks!

Since then (This was early October), Emma has slowly gotten better. She now has energy enough to see other kids again, something she really loves. We also received the FIRST clearly positive news ever since this ordeal started.

In the last MRI, which was done in mid October, the scans showed that the tumour in her cerebellum had responded to the treatment. It had clearly shrunk. The other tumours were unchanged, which  considering the new tumour in her right frontal lobe was an aggressive one, is good news.

Here we are now. Emma is slowly starting to feel like Emma again.

For a while, the happy daughter we had was no more.

One theory is that she suffers from brain fatigue after the second round of radiation, but it might also be partly depression. She knows she is sick, but not how bad it really is.

We are hoping that she will keep building strength so we can take her on a short trip to Disneyland soon. We have been given a trip to Disneyland by the wonderful organization “Ellas Hjältar” (Ella’s Heroes), but since she have not been stable until now, this has not been possible to do. Yet.

Thank you all for caring about Emma and for being there for us. We know she wouldn’t be here if it wasn’t for you.

//Micke

Long overdue update on Emma2018-11-27T10:44:28+00:00

Stability and going back to Mexico

Latest news about Emma:

Last MRI scan showed continued stability. No reduction, but no growth.

She has started walking by herself again and keeps on playing, dancing and singing.

Now we’re off to Mexico again on Friday for further scans and more intra-arterial treatments. 💪🏻

#goEmma

#fightcancer

Stability and going back to Mexico2018-03-05T10:16:26+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

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 raiser2017-05-25T13:50:41+00:00