Hello All, Some of you may have already heard, as we began having the preliminary results and discussions last week… but for those of you who have not, I am the bearer of rather unfortunate news: we have now confirmed the existence of a new malignant tumor growing on the side of my right nostril. It is NOT neuroblastoma, but rather another rare and potentially quite aggressive skin cancer known as a “sebaceous carcinoma”. It will require a number of major facial surgeries; the first one is currently scheduled for next Monday, March 23rd . It is all being managed at Sloan Kettering, with the input of my initial Neuroblastoma team and all of my long term doctors, and I am confident that I am in the best hands possible.  I will go on to explain it all in detail, but for a quick summary, you may refer to the following paragraph. (What the internet kids call a “TL;DR: too long; didn’t read”) The immediate next step is the excision of the tumor; this procedure will likely take place in multiple stages, and will necessitate the removal of a large portion of my cheek and the majority/entirety of my right nostril. The reconstruction process promises to be very effective, but also rather extensive. To rebuild my nose, I will require a “forehead flap”, connected by a “Stalk” of flesh and folded over a piece of my ear cartilage, for approximately 30 days, which is an insane sounding but actually quite ancient procedure with truly remarkable results.  As you can imagine, this is going to require me to spend an extended period of time staying in as close proximity to MSK as possible—likely at least 2 weeks, and easily more than a month, if things do not go perfectly smoothly. In the past, we had first stayed at the Ronald McDonald House, and later had access to a family residence nearby, but neither of those are currently options. This represents a significant expenditure that is completely beyond my resources to cover, and is only the beginning of a long list of inevitable expenses. We are estimating at least an additional $3,500-5000 in costs over the month following the first surgery…and as soon as I heal from this series of procedures, I have to resume the process of having all of my teeth removed and replaced by dentures.   I did have a much smaller one removed in 2017, but was totally unaware of its significance and the risk of recurrence. (this is a longer story for another time). Nevertheless, I first noticed it at the end of January and as soon as my dermatologist first saw it, have been attempting to get to the bottom of it, requiring multiple biopsies and a pair of CT scans. The good news, as it is: although it is rare and rather aggressive, it is thankfully NOT neuroblastoma, and confined to a single ‘lump’. (knock on all the wood!) It is, perhaps somewhat oddly, called a “Sebaceous Carcinoma”. A biopsy of my closest lymph node came back clear, and we are hopeful that we will be able to manage it exclusively with surgery. Once the initial resection has been performed, we will know much more detail about the cancer itself and whether any additional steps will be necessary.  Although we have caught it very early and it is still quite small, less than 2cm around, its location, and the fact that it is a recurrence, add more factors to an already complicated picture. So, in order to meet the rather contradictory aims of “making sure we get everything” and “making sure we take as little as possible”, they will likely perform the excision in two steps” the first operation, removing the mass of the tumor and the immediately surrounding tissue of my cheek and right nostril (my lips and eyelids etc will be untouched, but the margins will extend over a significant portion of my face), and then leaving this excision for 72 hours while pathology is performed around the entire perimeter of the removed tissue. If any additional cancer is detected, it will be removed, otherwise/and then the wound will be closed and the first phase of the reconstruction will be carried out. The reconstruction will be quite extensive and require multiple phases as well; the first likely being the creation of the “Forehead flap” to facilitate the creation of the new nostril. It is a very difficult operation to verbalize or visualize, and I am certainly not sharing and images unbidden, but searching for “forehead flap nose replacement” seems to give a good approximation, not to mention plenty of examples of exceptional end results. Supposedly the operation, with some slight variations, has been performed since 2000 BC…hard to imagine! After the forehead flap is created, it must be left in place for approximately 30 days in order for the new blood vessels to establish themselves, at which point another operation will be done to undo the flap, and then we embark on the dental journey...   More updates to come, thank you all, yet again, for your generosity and understanding...