#goEmma - Help SAVE our daughters life #fightcancer

For: Emma Askernas
Stockholm, Stockholm County, Sweden
Organizer: Micke Askernäs
$261,683
of $350,000 goal.
Raised by 1165 donors
74% Complete

The Story

Update: You can also donate throughSwish in Sweden: 0767-608 360

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.

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 $15.000-$17.000 US Dollar, (or for you Swedes, somewhere around 130.000 SEK). 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 $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.

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.

Fundraiser Updates

Posted on August 13, 2017

Posted on August 13, 2017

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 mostof 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


Posted on July 26, 2017

UpdateImage

Posted on July 26, 2017

#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


Posted on July 26, 2017

UpdateImage

Posted on July 26, 2017

Second Treatment Done! (July 19th)

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!

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