Today, I’m worried. Really worried.
In the past few days, we have increased Emma’s steroids to give her more energy, to make her happier, but all she wants to do is sleep.
Every day, just rest, just sleep. Nothing more.
We try and suggest things that she loves to do, but she just wants to sleep or lie down and be near Marta or me.
We started to form a plan on what to 6 days ago, and I am wearing myself out, doing all I can in order to prepare for what we need to make that plan work, to make that plan doable, to do the one thing left that we can do, to save Emma’s life.
But she is tired. All the time.
This is the girl who is always smiling, always laughed, always did things just to make herself and us laugh. Our very own little ray of sunlight in our lives. The girl that the doctor’s and nurses really remember for her energy and her strength.
We have to save Emma.
We have to do whatever we can to save Emma.
I am so afraid that unless we can get Emma to the ONLY private clinic in the world, that has managed to treat children with Emma’s terrible cancer to a state that there is no evidence of disease, we won’t have her for very long. She has already beaten the odds by being one of only 30% that survives one year with her brain tumor.
Our only hope to save her, is take her to Monterrey in Mexico for treatments, and stay as long as we need. Maybe 8 months, maybe a year. To pause our lives. To place our jobs, our careers, our hobbies, our friends on hold and just go. But to go, we need money. Money for her treatments, money for living expenses as we cannot work, money for plane tickets.
The treatments alone range from USD $15,000-$17,000 per treatment. She will need at least 10-12 treatments with chemotherapy cocktails and immune therapy. She will need several days in an Intensive Care Unit for monitoring after each treatment in the beginning to monitor her vital signs. There will be tests, medicines and everything we take for granted here in Sweden.
If we can’t raise enough money to do this treatment, Emma’s remaining time on this earth is most likely measured in months, not years. We don’t even know if she will see another Christmas.
We will need to raise around USD $250,000 in order to save Emma’s life.
Please help us now, before it is too late.
Please help us.
Emma’s tumor is called “Diffuse Midline Glioma”. It is a very close relative to “Diffuse Intrinsic Pontine Glioma”. The only real difference is that it is located next to the pons. It shares the same mutation called H3K27M, which is a very nasty mutation. This mutation is also the key.
Tests done on this tumor in he past 40 years have not managed to find a cure. 200 medical trials have resulted to nothing. Most of these trials are single drug trials. In this center in Mexico they recognize this, and is therefor using a mix of several chemotherapy drugs that are designed to attach this mutagen from several sides, to corner the cancer, if you will. It is also distributed through intra-arterial chemotherapy. Basically that means they administer the medicine right into the affected area rather than just distributing it in the normal blood stream.