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.
Donate through Swish (Sweden only): 0767-608360
Donate through Youcaring:
Treatment time2017-12-01T21:14:43+00:00
Go to Top