Treatment time

Treatment time.
 
In about an hour, we are scheduled to be at the hospital, where Emma will be sedated once again.
This will be the eight time we do this.
 
First up, she will undergo an MRI, a magnetic x-ray that will tell us a little more about what’s going on inside her hear. If the tumour has shrunk at all, if we are still rock solid at this status quo that have marked our time here…
 
… or worse. If her tumour has grown.
 
It is always with agony you await these results. We don’t have to wait more than a few hours for a preliminary result though, which helps.
 
Once her MRI is done, she will be moved into another room, where they will insert a micro catheter through her groin, leading all the way up into her head, where they will turn left and end up somewhere near the tumour area.
 
This is where they will inject the 8-11 different chemotherapy drugs being used.
 
The dosage is very low, as the drugs are released in the affected area.
 
This time around a few things are different.
 
A more potent drug against the evil H3K27M mutation that Emma has have been put in, and last time, she received something that should have triggered her immune system to react better.
 
Once more unto the breach, dear friends. Once more.
 
We will never stop fighting for Emma. Not as long as we still have money to pay for her very expensive treatments.
 
Unfortunately, the high medical costs are not covered by insurance or the Swedish government, and we need to pay for everything ourselves.
 
We couldn’t have done this without you.
 
Please help us raise more money so we can afford to keep fighting.
 
Together we might be able to save her life.
 
https://www.expressen.se/nyheter/cancersjuka-emma-3-ska-behandlas-utomlands/
https://www.dn.se/sthlm/25-miljoner-har-samlats-in-till-cancersjuka-emma/
 
Donate through Swish (Sweden only): 0767-608360
Donate through Youcaring: http://www.youcaring.com/goEmma
 
www.goEmma.se
Treatment time 2017-12-01T21:14:43+00:00

Status Quo

Hej mina vänner.

Det är dags för en ny uppdatering om Emma, det har det varit ett längre tag, jag vet.

Jag har avvaktat för att jag ville kunna göra ett odelat positivt inlägg. Ett sådant där inlägg som känns bra i själen, ett som motiverar, ett som ger tårar av glädje.

Det kan jag inte.

Jag kan inte mer än vara försiktigt optimistisk.

Vi har nu gjort totalt 6 behandlingar. 2 vanliga behandlingar med Intra-artäriell cytostatika, och 4 stycken med tillagd immun terapi (av typen ACT T-Cell terapi & Autolog denditrisk immunterapi, för den som vet jag talar om).

Emmas tumör, till skillnad från de ca 40 andra barnen som behandlas här, har inte krympt. Emmas tumör har inte blivit mindre, utan den är fortfarande i samma storlek som den varit nu en längre tid.

Å andra sidan är det positivt att den inte vuxit, då den här typen av cancer är ofta väldigt aggressiv.

Det är faktiskt väldigt positivt att den inte vuxit på så länge.

Den förändring vi ser hos Emma har varit i hennes beteende. Hon är gladare, hon sjunger mer, hon busar mer, hon leker mer. Hon trotsar oss otroligt mycket mer. Vi har gått igenom perioder då jag varit tvungen att hålla fast hennes armar och huvud för att hindra henne från att slåss, rivas och bitas när hon ska ta sin medicin.

Medicinen hon får av oss  är den epilepsimedicin hon har gått på i drygt ett år, som möjliggör det för henne att kunna leva ett någorlunda normalt liv. Den fungerar väldigt bra, då hon inte haft ett enda anfall sedan förra julen. Men hon vill inte ta den.

Att hon orkar slåss och kämpa för att inte ta sin medicin (och i vissa fall, för att inte äta viss mat) visar ju att hon har ork och energi, och att hon är fyra år, så det i sig kan väl ses som ett bra tecken.

Men det är just det enda vi har. Tecken.

Vi har tecken på att hon är friskare. Vi har tecken på att tumörens aktivitet minskar. Vi har tecken på att normal neurologisk aktivitet ökar i hjärnan.

Under tiden som gått sedan sista behandlingen har vi hunnit med en hel del.

I pausen mellan hennes tredje och fjärde behandling hann vi med att åka till Los Angeles några dagar.

Jag har fantastiska vänner som jobbar på Disneyland och på Universal Studios som hade fixat fribiljetter åt oss. Två dagar på Disney, och en dag på Universal. Emma var helt lyrisk. Knasigt glad, rent ut av.

Hon var så totalt inne i det, att hon glömde bort att hon inte kunde gå själv och gick några meter inne i Musse Pigg’s hus för att ta sig från en grej att titta på till en annan. De senaste månaden har hon vägrat ta ett enda steg utan att vi håller henne i båda händerna. Så dålig är hennes balans.

Att vara på Disneyland var ren terapi för Emma. Vi gjorde allt hon ville som vi hann med, och Emma var i fokus. Stort tack till Jimmy Moreno för att han gav oss fribiljetter till Disneyland under dessa dagar, och var våran egen personliga guide inne på området.

Universal studios var något jag trodde kanske var lite för vuxet för Emma. Jag hade fel. Universal studios har ju Minions! Emma älskar Minions! Hon åkte Minion-riden, träffade minions, och fick minion tröja. Hon älskade det. Vi besökte även Harry Potter landet och Emma tyckte det var jättekul att leka med trollstavarna och göra rörelserna så det hände något i skyltfönstrena.

Återigen har vi en fantastisk vän i Lara Khajetoorians Larkin som jobbar på Universal Studios (filmbolaget, inte parken) som fixade fribiljetter åt oss för Emma.

Väl tillbaka hade vi två behandlingar vi skulle göra. Vi gjorde en PET-CT scanning av Emmas hjärna för att få en idé om hur aktiviteten egentligen ser ut i tumören. Tyvärr kan en sådan scanning även vara missvisande, då strålskador och andra roliga bieffekter från Emmas strålbehandling hon gjorde hemma i Sverige, kan ge felaktiga (högre) utslag. Scanningen visade att det finns aktivitet, men värdet var inte så högt. Planen är att göra en till om några månader, för att se om den metaboliska aktiviteten i tumören minskar.

Efter fjärde immunterapibehandlingen var det dags att resa igen.

Den här gången åkte vi hem till Sverige.

Emma har ju problem med vätskorna i hjärnan som inte absorberas eller kommer ut som de ska, och var i behov av en shunt.

Även om läkarna här i Mexiko är fantastiskt duktiga, valde vi att åka hem och låta Svensk sjukvård genomföra operationen som vi sköt upp i juni och ge Emma en shunt. På det viset fick läkarna hemma i Sverige träffa Emma, se hur hon mår och göra en egen bedömning.

Det gav också oss en möjlighet att ordna med lite administrativa saker som behövde fixas på hemmaplan. Emma fick även chansen att vara med på sin kusins tvåårskalas, och träffa mormor, farmor och farfar, något hon verkligen tyckte om.

Att vara hemma var konstigt. Vi var hemma, men inte *hemma*.

Vår egen lägenhet är ju uthyrd året ut, så av en fantastisk kvinna som heter Lena, fick vi låna hennes lägenhet som stod tom i samma område vi bor i. Lena är en person som följt oss, som läst om Emma, som vi inte kände innan, och hon är ytterligare en helt fantastisk människa som funnits där och hjälpt oss otroligt mycket med att låta oss bo i hennes hem. Vi kan inte nog tacka henne för det.

Emma fick sin shunt. Allt gick bra, men vi såg inte den här omedelbara balansförändringen vi hoppades på. Det kommer att ta tid, sa neurokirurgen. Trycket i Emmas hjärna har varit där ett tag, och det kommer att ta ett tag innan det balanserar sig igen. Under tiden har Emma fått en barnrullator för att hon ska kunna röra sig lite själv och gåträna.

Emma älskar sin rullator, och även om vi bara använder den inomhus, så börjar hon få upp ganska mycket fart i den och har inga problem att gå eller svänga.

Balansen har blivit bättre, dock. Vi märker det. När hon går, propsar vi på att hon bara ska hålla i en hand, inte bägge som tidigare, och det fungerar jättebra. Ibland glömmer hon bort sig och släpper det hon håller i, för att stå tokstadigt och göra något en stund, innan hon kommer på att hon inte håller i sig.

Vi tror att det ligger mycket i huvudet, att hon är rädd för att hon ramlade så många gånger när hennes balans blev kraftigt sämre.

(För den som undrar, så att balansen blev sämre, berodde på ett ökat tryck i hjärnan av den vätskan som byggdes upp i huvudet, då de naturliga vägarna ut var blockerade av cancern. Varken cancern eller behandlingen i sig hade något direkt att göra med balansförändringen, utan det berodde på ökat tryck i hjärnan.)

Tre sjukhusbesök med prover, tre dygn på Astrid Lindgrens sjukhus och en dag med uppföljning blev det för Emma innan hon fortsatte rehabiliteras hemma och läka såret efter operationen innan vi två veckor efter ingreppet åter flög tillbaka till Mexiko.

Väl här, har vi fortsatt gåträna med rullator, och hunnit med att fira Halloween och Dia de los Muertos.

I skrivande stund är det lördag. om två dygn är vi på plats på sjukhuset här i San Pedro igen för att göra en ny behandling och magnetröntgen.

Det känns som att efter att trycket i hjärnan nu har minskat, att det kan vara en helt ny spelplan. Kanske vi får svaret att tumören äntligen krympt denna gången? Jag vet inte. Jag hoppas det, av hela mitt hjärta.

Emma är en fighter och tack vare er kommer vi fortsätta kämpa så länge Emma inte far illa av behandlingen. Jag har alltid sagt att jag vill inte förlänga något lidande. Jag vill köpa tid, men tid med kvalitet. Tid då Emma får fortsätta vara Emma. Hennes välbefinnande betyder allt.

Jag vet att behandlingen här hjälper, men att det i vissa fall har tagit lite längre tid.

Det är snart 17 månader sedan Emma fick sin diagnos. Medellivslängden på den här typen av hjärncancer är 5-9 månader utan ett standardiserat sätt att bota eller bromsa förloppet. Emma spöar statistiken. Emma kommer att klara det här.

#goEmma.


Som alltid, vi kunde inte vara här och kämpa för Emmas liv om det inte vore för Er. Vi gör myrsteg framåt och det kommer att behövas många behandlingar till innan Emmas cancer är besegrad.

För att hjälpa, kan ni besöka www.youcaring.com/goEmma och lägga en donation som går direkt till Emmas behandling.

Ni kan även betala via Swish, eller göra en donation direkt via paypal på https://www.paypal.me/askernas

Tusen tack för er medtanke. Vi måste få in närmare en miljon till för att Emmas behandlingar under 2018 ska kunna genomföras. Emmas senaste omgång behandlingar och undersökningar här i Mexiko (under en veckas tid) kostade oss ca 285.000 kronor. (ungefär $34000 USD). Utan er hade det inte varit möjligt.

Status Quo 2017-11-05T03:55:26+00:00

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