Posted on August 13, 2017
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 mostof 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.