Finally together again!
The whole family in the same place, albeit on the other side of the globe. To say that it is nice doesn’t begin to describe it.
Linnea and Kristian are so happy to be together again. Before we arrived they used to play computer games together online, Kristian in Sweden and Linnea in Mexico. We open a video chat at both ends of Giedres and my phones and they both laugh loudly and talk about where to go next to the game. The joy of us as parents to see them together again, in real life, is indescribable. Everyone has longed so.
When I see Linnea, I cannot understand on a level that she is just undergoing a tough tough treatment. That she is doing well is incredible, and if you see her today, and do not know about her story, one would not be able to say that she has a brain tumor. She's just like any other 6 year old girl, jumps, runs and dances.
Doctors now want to make two new immunotherapy treatments since it was one year since the first four immunotherapies. This is achieved by injecting new T-cells that can attack the tumor directly in the brain, but also by reminding the immune system how Linnea's tumor cells look via the so-called dendritic cells.
By last year we managed to transport Linnea’s biopsy of the tumor to Monterrey, we can base both the adaptive T-Cell treatment and the autologous dendritic immunotherapy on her tumor cells.
Linnea was the first to do this and so far, only 3 children in Monterrey have had biopsies stored exactly in the right way (fresh frozen tumor tissue and not in paraffin), and have enough tumor material to be able to base treatment on the own biopsy.
As far as we know, there are no other children in the world who have had a combined dendritic immunotherapy and adaptive T-Cell therapy based on their own tumor material. Linnea and we really break new ground in practice. Last year we saw very strong results after the immune therapies based on Linnea's own biopsy and we hope to see it again now.
The DIPG tumor has very low activity and is very small compared to when we started a year ago. We only need help to continue to treat her to make sure it does not grow back.
It's not ready until all is gone.
We do everything we can to continue to treat the brain tumor that Linnea has. Both she and the doctors in Monterrey do their job. We are so happy that Linnea is here today more than 17 months after diagnosis. And she's not just here. She is clinically strong, playing and enjoying life.
The choice to continue treating is easy, especially when we see how wonderful she is doing. But financially, it's hard to say the least. Recent unforeseen treatment costs have drastically reduced our financial resources and as it seems today, we have money until the end of June.
What happens if the money ends before the treatment is complete? I dare not even think about it ...
Yes, the emotional roller-coaster is not over. So what I'm focusing on right now is that we are here. Together and stronger than in a long time.
Most of you have helped us so much, and we will always be so grateful for it.
Please help us again. Not least by spreading Linnea's story into new channels.
Linnea is doing her part. Now let's help her.