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

Merry Christmas all

This summer I was not sure Emma would see another Christmas.

Yet, here we are, and it is all thanks to you!

Due to unforeseen events, we are back in Sweden, earlier than expected and have the luxury of celebrating Christmas at home. However, the path that lead us back home was quite dramatic..

Emma had a shunt placed in October that would help her with the increased pressure inside her brain. It has helped her balance somewhat, but not to the extent we were hoping for. In fact, we have even suspected at times that the shunt was not working as intended.

In the first week of December we did our 8th Intra-arterial treatment, and the doctors told us that we could go to three months between treatments. The original plan was to make one more treatment in the beginning of January before moving to three months between treatments. Before being able to actually go home.

So, our apartment in Sweden was still rented out to a tenant, and we started looking in to possibly going back home before Christmas. The apartment we rented in Monterrey was paid until January 7th, so at the time we did not feel like we were in a hurry going home, especially not if we didn’t have a place to stay when going home.

I checked with our tenant back home and found out he was planning to move out around 17-18th of December, which opened up the possibility of going home before Christmas. I started to look for flights that would put us back in Sweden on or around December 19th, but found nothing that was really affordable. Travel is always much more expensive around the big holidays.

Then something happened. Something that made us pack up all our belongings and leave Monterrey and Mexico on a very short notice.

Emma had a small scab left in her head from the surgery when the shunt was placed. I suspected this was due to a suture from when she was stitched together that was still sticking out. I was right.

We gently removed this piece to make her scar go through it’s final healing process, and noticed it was a bit wet when removing the scab. Sort of like when you poke hole on a water-filled blister.

We didn’t think more about this at the time, but that day, Wednesday December 6th, Emma had the best day she’s had in a year. She had tons of energy, she was walking by her self back and forth between us in the apartment, she was in a great mood and just wanted to play all day long. We had not seen her like this in a long long time.

Emma went to bed around 8 as usual, and when I was getting ready to go to bed and sleep, since I was incredibly tired, around 11:30, I noticed something that woke me up. I mean, REALLY woke me up. Emmas pillow was wet. Emmas head was wet. The scar from the surgery was leaking cerebral fluids out from Emmas brain straight into her head and on to the pillow.

Fluids. From her brain.

Let me tell you, I went from being almost passed out due to being so tired to being extremely awake. My daughter had spinal fluids leaking out from her brain!

After making some calls and waking some people up, I first find out that it is not serious in itself, but it is a matter of great concern, as if liquids can come out of her brain, it also means bacteria can go in from the outside.

If there would be an inflammation or infection, it can lead directly to meningitis inside the brain. It could lead to a situation that was directly life-threatening!

As soon as Marta got home, I met a doctor who gave me a prescription for antibiotics and put her on antibiotics immediately. I also took an immediate decision. We were flying home as soon as it was possible.

I got an appointment with a neurosurgeon in Monterrey the next day in the afternoon, just to have Emma cleared for flying, and spent the rest of the day trying to rebook our flights to go home.

Rebooking the flights in itself was a big problem due to extreme weather in the US, making it impossible to reach Delta, and the price for rebooking our flight with Norwegian more than doubled in the two hours it took after I checked availability to after we had met the neurosurgeon.

Even so, we had no place to stay when we got home to Sweden, but had Emma’s wound been infected, She would not be able to fly and would need immediate surgery to remove her shunt, and 2-3 weeks in a hospital, a cost of $60.000-$80.000 USD. It would literally eat up the funds we had for her treatments. We had to get home before any inflammation or infection had time to start.

32 hours after my late night chilling discovery, we were on a plane bound for Los Angeles. 11 hours after that on a plane to Stockholm, where we stayed at a hotel in our neighbourhood until we got our apartment back. The first week was spent going back and forth to the hospital for examinations, for blood tests and monitoring of Emma.

The past week since we got the apartment have been spent with unpacking the roughly 90 boxes we had in storage and also some quick renovations as Emma is getting a bigger room at home.

Fortunately, Emma has managed to avoid infection or inflammation, so we are able to spend Christmas at home.

As the situation is, she will undergo surgery again for another shunt to replace the old one, on another part of her head, as the skin is so thin above her old shunt that it can literally burst if she just scratches it.. in which case we’re spending the next 2-3 weeks in the hospital anyway.

The surgery is planned for early January.

Our journey continues and this is all thanks to you, all thanks to everyone who has contributed, and continues to contribute so we can afford treating Emma.

Our next treatment in Mexico is planned for early March 2018, and we are hopeful that 2018 will be a good year for Emma.

We are now over 18 months after her diagnose. The statistics say that only 25-30% of the children affected with this horrible kind of brain cancer survive the first 5-9 months. Emma is a fighter.

I can’t begin to tell you how happy I am you helped us get this far. Please help us be able to continue fighting for her.

Have a very merry Christmas and a Happy New Year. Thanks to you, Emma is happily opening her Christmas parents together with us at her grandparents house, and playing happily with my parents cats.

Go Emma.

Merry Christmas all2017-12-24T13:53:59+00:00

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 time2017-12-01T21:14:43+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 Quo2017-11-05T03:55:26+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 32017-09-07T15:02:29+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 update2017-08-13T02:44:44+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 week2017-07-26T14:30:04+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 kids2017-07-19T19:05:46+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