The pathology report is back, and we finally have a name for our enemy: it is a choroid plexus papiloma. Our road has taken a sudden and unexpected turn- no, this is not a cancer. It is not a carcinoma. It is what is called a “benign” tumor, though I use that word with a sense of angry irony. There really is nothing benign about this thing.
It is actually a rare, slow-growing tumor found mostly in very young children. It may have been with Jack since day one for all we know. If you were to look up the prognosis on such tumors, you would find the results of your search to be encouraging. When removed, patients recover with very good results.
Jack’s tumor, as I have noted before, is extremely large. Worse, it is located, at least in part, in the brain stem. When Dr. Walter told us this, I found myself instantly back in PSYC101, remembering that the brain stem controls the body’s major autonomous functions. Things like heart function, lung function, and yes… swallowing, gagging, and coughing. Dr. Walter told us that choroid plexus papillomas are usually “a big yawn” surgically. But in Jack’s case that is absolutely not true, due to the size and placement of this tumor. The last thing you want to hear is that your son’s case is “challenging”, and “not straightforward”. Dr. Walter has been researching and talking to colleagues, looking for any information on chemotherapies for this kind of tumor in the hopes of shrinking it down prior to surgery. Since it is not fast-growing, chemo will not work, and Dr. Piatt doesn’t feel that Jack has enough time for us to wait for a few rounds of chemo, even if that was an option.
Additionally, this tumor is living tissue, with a blood supply. Thus, the surgery carries the same risks as last week’s biopsy- it is likely to hemorrhage, resulting in significant danger for Jack, and precluding the option that only part of the tumor might be removed, leaving the part near the crucial nerves alone.
We have just returned from a meeting with Dr. Piatt, Dr. Walter, and the main players on the PICU team, which John and I had initiated in order to fully understand what we are up against.
What we have learned is that surgically, Dr. Piatt feels that the best plan is going to be to get in there, and get it out. All of it. Immediately. The risk of permanent nerve damage to certain areas is extremely high. Thankfully, the areas likely to be damaged are NOT the areas controlling heart and lung function, but rather facial nerves, hearing (on the right side particularly) and the nerves controlling muscle function in the vocal chords and throat.
Imagine not being able to swallow. Feeding becomes impossible, of course, but any saliva you have will just pool in the back of your throat and eventually find its way down into your lungs, where it absolutely should not be. The only way to protect Jack’s airway if these nerves are damaged will be to insert a trachial tube. And the only way to feed him will be to insert a feeding tube into his side.
So, Bounce Back Jack’s journey has shifted from an expectation of a long and uncertain battle with cancer to a long-term, likely permanent disability. However, Dr. Piatt indicated that there is hope that through many therapies, Jack’s brain may be able to compensate somewhat for the damage. He may regain some functions that he will have lost. Where there is life, there is hope.
What I feel right now is an overwhelming sense of fear about tomorrow’s surgery. While the prospect of a serious disability left me feeling unsteady initially, that has passed. If Jack pulls through this, we will work hard to make sure that he will have a joyful life, which is exactly what we were planning to do before any of this happened. Nothing will really change but the details.
I’m going to try to live-blog tomorrow, with updates every hour until he is out of surgery. Surgery is expected to begin around 7:45 a.m. I’m also going to ask everyone who is lighting a candle for Jack, or who is keeping him in your thoughts, to keep those thoughts positive and to keep those candles brightly burning tonight and tomorrow. The surgery will determine everything.
We would never be able to handle this without your love and support, everyone. Thank you all for being on Bounce Back Jack’s team.