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 to pre-school. The doctors in Lund were amazed; our friends here were amazed. It was as if he had never been sick.
Then it was time again for a short trip to LA for scans and check-up. We had some of the tests done in Sweden, but were not informed of the results. In any case, what mattered most was the full body scan (MIBG) he was going to have at CHLA.
Unfortunately, the results were disappointing for both his doctors and us – even more so considering how well he was doing. The tumours were all there; in fact, a new one was discovered, though his doctor in LA believes it may have been there all along, just not visible on the first set of scans. There was no way of making any exact comparisons; the tests he had two months ago were deficient due to technical problems. We knew that the tumours were not growing, at least not as fast as before, but we found out that they were not shrinking either. In other words, Lorlatinib was doing what chemo did over the summer, i.e. keeping the disease in check, stable. So far at least, it was not curative.
Now we are back in Lund. Luca is still doing fine, and back to his normal life. We are still “cautiously optimistic”, though perhaps more on the cautious side of the equation. We knew even before the trial began that the problem with drugs that target ALK mutation is “resistance”; the tumours adapt to them and stop responding. Lorlatinib was specifically developed to overcome this problem but as we wrote earlier, there is so much we don’t know about it. And we learned that the response of the children who are on the trial is “mixed” so far (a very short period of time to be scientifically meaningful to be sure), with some developing resistance after just a few weeks.
While we keep hoping and praying that these good days will last, we decided to raise the alarm level to yellow and to have a plan B. If the worse were to happen, we won’t have much time to act. Needless to say, we will not stop fighting until our hero, our little ninja stops fighting. His doctors in Sweden have already made it clear that there is nothing more that they can do for him here, other than palliative treatment. However, we have been in touch with Hospital Sant Joan de Déu in Barcelona, which has started a trial with the new type of immunotherapy that was once recommended for him at Sloan Kettering, New York. They have accepted to treat him if we were to find out that he starts progressing on the current treatment. The costs of treatment in Europe are much more reasonable than in the US, but we have already used a big chunk of our funding in Michigan and Los Angeles. In case there is an unfortunate turn of events, we may need to relaunch the fundraiser and try to take him to Barcelona.
Until then, we have nothing to do but to continue hoping that the miracle lasts. And as always, we need your prayers, good will and energy. They brought us so far; we are sure they will take us further.