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.
In the middle of all this, his chief oncologist had to take a leave and disappeared for several months. The other doctors told us that we need to start preparing for the worst. At this point, he was no longer having his “good days” in between treatments; days that are so crucial, for him and for us, to be able to keep fighting.
But the tumors kept responding, slowly, and somehow his good days came back. Today, after just a couple of weeks of chemo break, he is full of energy and as happy as ever. He is so curious about everything, and his latest passion is learning about the body; how the different organs work, how cells are made, and yes, how cancer appears and the ways that it can be treated. We were so convinced he was a little engineer, but now perhaps oncologist is more likely. If you ask him what his plans for the future are, however, he will tell you its to be a pappa/baba!
Along the way, new treatment options presented themselves, but without any scientific evidence as to what is best for him. We’ve had a lot of discussions with doctors across the world with differing opinions about what to do from here.
Once again, a decision has been made and we are now set to go to Children’s Hospital Los Angeles (CHLA) to take part in a trial that just started. Luca will be the fourth kid in the world to enroll in the study of Pfizer’s new ALK inhibitor Lorlatinib (PF-06463922, https://clinicaltrials.gov/ct2/show/NCT03107988) which has proven to be very effective against ALK-driven neuroblastoma in lab environment. This is a Phase 1 study which means that there is no clinical evidence yet. What we do know, however, is that if the drug works, it will probably be a cure for him (unlike the chemo that he’s been getting so far, which in the best of cases buys him more time). This is huge given that we have exhausted all other options; chemotherapy, radiotherapy, immunotherapy and a combination of these with other novel therapies.
The trial will start on 13 November. We don’t know how long it will take to get the first results. We may need to relaunch our fundraising campaign if we run out of money as the 200.000 USD we have at his bank account was just enough to start the trial. But for now, what we need is prayers, love and hopeful energy. Your support means the world to us.
Please pray, hope and help us believe that this is the miracle we are looking for.
* This time, a few specific acknowledgements are in order. We are grateful to Pfizer, in particular the “Turkish gang” there (Tolga Tanguler, Berk Gundogan, Dilara Tezer and Caglar Ceritoglu – along with Koray Yildiz, who no longer works at Pfizer), who spent a tremendous amount of time and energy to make this happen, including bringing the CHLA option to our attention. We owe special thanks to Dr Yael Mosse from Children’s Hospital of Philadelphia (CHOP) who took care of Luca when our oncologist was unavailable and to Dr Araz Marachelian from CHLA who kindly accepted to take over Luca’s treatment – making that possible financially. Also, not to forget, none of this could have happened if it weren’t for Ingrid Ora and the team of doctors, nurses and other staff at Ward 64, Lund Hospital who have taken such good care of Luca over the last 3.5 years.