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 started having pain in the jaw and we could see the jaw growing again. By the time we started the trial six days later he was on a great amount of painkiller.
We started the trial, which just involves four pills that he takes once a day. We knew nothing about its chances of working. There were no results yet, other than from the laboratory.
Five days after starting the trial he was completely off painkillers and we could se that the jaw was no longer growing. A few more days and it was clear that it was shrinking. Today his jaw looks completely normal.
The most common side effect of the treatment is increased appetite, and this is certainly the case with Luca too. He is eating A LOT. After just two weeks he has gained back all the weight that we have been fighting so hard for him to gain since his last relapse. He has been hungry, happy and full of energy. No other side effects so far, which in itself is simply unbelievable after all that he has suffered in the last months and years.
From all that we can see, it seems that it is working. But the medicine is so new and there are so many unknowns. We have no idea how the other tumours in his body are doing. He could develop resistance at any time. They know that the medicine goes to the brain but no one knows how it affects a growing brain. “We just can’t believe it,” we said to the doctor during the last visit, “it just seems like such a miracle!” She reminded us of all the unknowns, but smiled and concluded; “yes, we are cautiously optimistic.”
After this first month of regular check-ups, we can take the medicine with us and go back to Sweden for Christmas. We’ll need to go back at the beginning of January for more tests and to get the next rounds of medicine.
No matter what happens from now on, what we got these last few week, going from where we were before we started, knowing that this was our last hope, and then seeing him like this again, is nothing less than a miracle. We are grateful beyond words. As for the future, we can only hope that the miracle will last. As his doctor said, we are “cautiously optimistic”.