#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