Long overdue update on Emma

Hello all.

Firstly, I’d like to apologize for not updating you in a long while.

We had plans on returning to Mexico, but mere hours before the flight, Emma started having cramps and severe pain in her leg, so instead of going to the airport, we went to the emergency room.

Once she was ok (We still don’t know what caused it), we were too far away from the latest MRI scan and decided to wait for another scan, which was scheduled on May 22nd.

The MRI in May showed the worst news possible. Emmas tumour had started to grow again. Not only grow, but it had also spread to a new area in the right frontal lobe and her cerebellum.

A second round of MRI was done a month later and it confirmed that not only was the new growth active, it was also very aggressive and had in just four weeks grown enough to so you could clearly see it on the images with your own eyes without taking any measurements or any knowledge about MRI scans.

The decision was taken to give her a second round of radiation, but before this could begin, Emma was again struck with bad news as she contracted a very severe case of pneumonia. Her bacteria level in her blood was extremely high, and she spent 10 days in the hospital with intravenously applied strong antibiotics and fluids.

Once her pneumonia was cleared and she was back to full health, she still needed to wait 6 weeks before she could be sedated to even do the radiation planning.

This means her tumour had over 2 months to roam free and grow aggressively.

One week after we started the second round of radiation (We started on August 6th), she was not doing well, and had her first rather big seizure in 18 months. Triggered by the treatment, we think. Emmas state was quite weak during this period.

After the radiation period of two weeks were at an end, Emma started to get better again. She even started Kindergarten again for a few weeks, when she again started to feel extremely tired. She started sleeping 18-19 hours per day.

After a second trip to the emergency room (they sent us home the first time) they found out that her heart rate was dangerously low. Her heart rate was around 50 beats per minute, even down to 41 when she was sleeping. At this point in time (October 6-7) I was sure we only had a little over a week left with her. Luckily, I was wrong.

We still don’t know what caused this, but the tumour in her cerebellum is very much a likely culprit. Her heart rate was back to normal a few days later, but she was exhausted for weeks!

Since then (This was early October), Emma has slowly gotten better. She now has energy enough to see other kids again, something she really loves. We also received the FIRST clearly positive news ever since this ordeal started.

In the last MRI, which was done in mid October, the scans showed that the tumour in her cerebellum had responded to the treatment. It had clearly shrunk. The other tumours were unchanged, which  considering the new tumour in her right frontal lobe was an aggressive one, is good news.

Here we are now. Emma is slowly starting to feel like Emma again.

For a while, the happy daughter we had was no more.

One theory is that she suffers from brain fatigue after the second round of radiation, but it might also be partly depression. She knows she is sick, but not how bad it really is.

We are hoping that she will keep building strength so we can take her on a short trip to Disneyland soon. We have been given a trip to Disneyland by the wonderful organization “Ellas Hjältar” (Ella’s Heroes), but since she have not been stable until now, this has not been possible to do. Yet.

Thank you all for caring about Emma and for being there for us. We know she wouldn’t be here if it wasn’t for you.

//Micke

Long overdue update on Emma2018-11-27T10:44:28+00:00