Treatment Started and Scan Updates

Jonathan finally started the Accutane treatment! He started on Wednesday night, to be precise, and has a prescription for two weeks, after which lab work and a physical is done to ensure he is handling the side-effects and is receiving the correct dosage. I'm just happy he finally started something, although I'm a little worried about continuity of care when we move from California to The Netherlands. We still have, at least a month before we need to figure that out, so hopefully the transition will be painless (from a red tape perspective).

We also got the results from Jonathan's MIBG and PET scans, and both came back negative! In one breathe, this is good news and I could just imagine that breathe is the exhale. In the other breathe, in this case the inhale, I'm cautiously optimistic because these two scans are not sensitive enough and we're not sure whether the PET scan is a true indicator or not, i.e. is it NB hot? Regardless of all the doubt, it is good to know there is currently no significant tumor in his body (at the moment).

When I look back to when we discovered his third relapse in June of this year, and the realization that the MIBG scan is not sensitive enough, I still remember all the worry and anguish on whether this 3rd relapse was going to follow the normal path or continue to be the anomaly that Jonathan is lucky to have, i.e. slow growth. A relapse with Neuroblastoma is usually quite aggressive, and I still remember the two fathers in Southern California who lost their sons in their battle with Neuroblastoma. Jonathan has and continues to be an anomaly with regards to this disease and I'm hoping he continues to be, especially in a good way.

In the early stages, we used to wonder how long we would have our son with us, usually measuring in single digit years. Now we feel his status has moved to more of a chronic case, in which it will always be part of his life, and we wonder whether Jonathan will outlive us or we would outlive him. For the moment, it's good to be in the position we are in, and we are definitely enjoying the "brief" respite.