Emmas treatments in Mexico: Immunotherapy 3

Hi all

A lot has happened since last I wrote. I have been trying to collect information for bigger posts, but in the future, I will post smaller updates more frequent.

There has been a lot of things happening here in Mexico. It has been an emotional turmoil, to say the least.

We managed to get away for a day, to take Emma to the Bioparque Estrella, a nearby Zoo that is quite small, the cages are too small for the animals, but they do have a *huge* safari area, and hopefully the animals spend most of their time in there. Emma was happy. She got to feed zebras and giraffes and see a lot of animals.

It was a warm day, and Emma have some issues with the temperature when it is really warm. Fortunately for her, the temperatures have started to go down to be more bearable.

In Emmas case, she has been quite stable. The doctors see no progression at all in her tumour. When we are comparing the scans from when we arrive to now, there is no change in tumour size.

Some of the families in Monterrey currently doing this ground-breaking cancer treatment for their kids.

There is however a slight change in tumour intensity, and we can see in the graphs that the activity in the tumour is virtually none. This is very good news, but of course, not as good as some of the other kids are having, where their tumours have shrunk to less than half the size as when they arrived.

Emma is still happier and playing more. She even plays by herself now on occasion, something she hasn’t done in a long while.

Emma is still an avid fan of Peppa Pig, her absolute favourite. Peppa Pig .. and Spiderman!

We think she is starting to get a bit frustrated about not being able to walk and do things as she pleases, as she has been acting out on occasion and having some anger issues when she don’t want to brush her teeth, things like that.

Just recently she had a nasty fall off he bed, when she wanted to do more than she was able to (something we see happening a lot. She wants to walk, but has balance issues. She wants to go climbing, but she can’t), she was trying to slide off the quite high bed, and her leg/foot did not have the strength to support her weight, and she fell on her foot and thigh, and slammed them quite hard into the marble floor. Fortunately, nothing is broken, and she did not hit her head, just internal bruises, but it made a little girl who already have issues walking to walk even less. Fortunately, she is still in a great mood most of the time and wants to play. She is just finding it difficult to do so. Mommy’s glasses are still a fun thing to play with. She just loves to dress up, this little girl.

We changed a few things in the treatment for her. For starters, when she needs to get a needle in her port-a-cath, we are now doing it at the nearby hospital by a specialized oncology nurse. This is due to some of the other nurses at the other place where we get some treatments does not have the experience enough to set a needle in a port.

It *should* be as simple as feel the port under the skin, hold it between two fingers in one hand, and poke the needle in with the other hand. One prick, and it’s done.

3 weeks ago, when a non-experienced nurse was going to set Emmas needle, she missed the port, tried again, missed, tried again … then kept the needle stuck in her skin, and started moving the needle back and forth under Emmas skin, effectively cutting through the underlying tissues in her chest while searching for the port.

Emma was screaming and crying in pain. We had to stop the nurse, who then tried again, and missed and started searching. We had to stop her trying for Emmas sake, as she was in a lot of pain and very scared. Not to mention me and Marta who were in tears after seeing Emmas pain and had to intervene. We were furious, to say the least.

That day, it took us five hours before we had a needle in her port and the chemotherapy could begin.

Emma bounced back from this as well, she always does.

She is such a trooper, our little Emma. No side effects from the treatment, always thanking the doctors for the medication and I’ve said it before, she is the bravest of all of us.

Today, we are going in for Emma’s third immunotherapy, where they will inject treated T-cells in her body to make her own immune system able to fight her tumour. It will be our fifth treatment overall since arriving here, and the costs are astronomical.

Fortunately, our living arrangements are cheaper than back home in Sweden, and the food is cheaper as well.

Tonight, I will get another update from our doctors, if they see a change in the size of Emmas tumour. I predict they will see no change in size. Again. We hope that it would at least shrink just a bit, but so far, nothing.

Don’t get me wrong. If it never grows again, ever, the immediate threat to Emmas life is solved, but as we don’t know if it s simply sleeping and will grow in the future or not, we’re still having a ticking time bomb on our hands.

Emma didn’t deserve this. She deserves to be able to run and play and go to school like all other kids. We’re fighting every day for her to get there, but since her tumour is large and slow to respond, it will take more treatments. It will take time and money.

The time bit I can fix, but the money, we need help with.

So far, Emmas treatments have cost over $130,000 USD. Half of what we made in our fund raiser in only 2.5 months. Fortunately, our cost of living is cleared, since we are using our parental sick days for Emma, but the treatments are extremely expensive.

*Each* immunotherapy treatment costs over $31,000 USD.

Here, Emma is adjusting to life and making new friends every day. The bigger stores started putting up their Christmas decorations at the end of August!

Right now, the stores are filled with stuff for the Mexican Independence day, followed by Halloween in October. Emma loves all the Halloween decorations, and when we encountered an animatronic of three witches making a brew of some sort, Emma stopped and helped the witches stir their cauldron….

Every time we see a zombie or witch or “scary monster” as Emma calls them, she wants to stop and is totally fascinated by them.
Daddy’s girl.

As usual, if you want to donate and help us: here are the ways:

http://www.youcaring.com/goEmma
Become a monthly donor: http://www.goemma.se/become-a-monthly-donator-for-emma/
Paypal: micke@askernas.com
Swish (Swedish phone numbers only): 0767-608 360

Emmas treatments in Mexico: Immunotherapy 3 2017-09-07T15:02:29+00:00

#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