Blog Posts
Only hours after we posted the last update Luca started to have pain, and since then he has rapidly gotten worse. The treatment hasn’t worked. It seems like we have reached the end of the road. Please keep him in your prayers and thoughts to be free from pain and for us to keep holding him in love.
The roller-coaster that we call our life has presented us with a few surprises since we last posted here. Slowly, but resolutely, Luca recovered from his first chemo and even managed to receive a second, reduced, dose without suffering much. As we were preparing to head off to Barcelona to start the immunotherapy, we got the news from that his disease is not considered to be stable enough to start solo immunotherapy, that the only available option now is a …
We are back to Lund; we will be here for a while. Luca could not start the treatment in Barcelona because his disease was not stable, and his tumours kept growing. His doctors are doing their best to get the beast under control. For now, we don’t know whether he will be able to get the treatment, where or when. For now, there is only “here and now”. He has had a very difficult few weeks, but today is a …
Unfortunately, Luca is not stable anymore. After four months of “normality”, the disease is back with a vengeance. He was taken off the LA trial, and after an intense weekend of email traffic among oncologists from four countries, we brought Luca to Hospital Sant Joan de Deu in Barcelona which offers the treatment developed by New York Memorial Sloan Kettering for which we did the fundraising two years ago. Time is running out; Luca is not well; so we need …
Luca has had a great two months. For the first time in a very long time he has been completely free from pain and difficult side-effects. The team at Childrens’ Hospital Los Angeles sent us back home for Christmas and New Year’s. Even though he liked Los Angeles a lot, Luca had been missing home, his toys and friends, so he was very happy to be back. He was doing so well that we did not hesitate to send him back …
It’s very difficult to find words to describe these last few weeks. Just before leaving Sweden we found out the results of Luca’s last scans. There was minor shrinkage in the tumours that he had, but other ones had started to appear. He was no longer responding to the treatments that he was being given. We were told that there was nothing left that could be done for him there, other than palliative treatment. On our way to Los Angeles he …
A week went by in Los Angeles, and so far so good. We had a long meeting with our new doctor, Araz Marachelian and her team. They are all great, already charmed by the little ninja. As Luca started suffering from tumor pain, they speeded up the process, dealt with bureaucratic formalities, and started the trial 3 days earlier. Luca was given his first dose of Lorlatinib yesterday, on 10 November Friday! Other than that, Luca is enjoying the good weather and spending …
Almost six months went by since we last updated. And this was probably the most painful part of our journey so far. The tumours were stubborn and the treatment was taking a great toll on Luca’s body. He was suffering a lot from side effects and we had to spend a lot of time at hospital with a number of neutropenic infections and other complications. At one point we were there 23 days in a row, including 3 critical nights at the intensive care unit. …