Just a quick recap of the craziness that has resulted over the past few days...
Thursday - Trip to MSKCC for an MRI. Results were very promising! What was believed to be progressive disease up and down his spine was actually diminishing. It's going away! The docs are baffled and we are on our knees in thanks.
Friday - Ty becomes so lethargic, he naps all day. By the evening, he is in out and of consciousness and wets the bed. We rush him to the hospital, barely able to keep him from slipping into a coma on the way in. As we suspected, his intracranial pressure (ICP) was dangerously high, causing increased hydrocephalus. His shunt was replaced in an emergency surgery to a programmable valve that can be adjusted according to his ICP. The docs believe we will see vast improvements in his pain, his equilibrium, etc., over the next few days.
Saturday - We are discharged. Ty seems to be doing well, but he still has a lot of pain. We're told it is going to take time to adjust to the new setting on the shunt, to we should go home and give it a day or so.
Monday - We return to the hospital for a CT scan because Ty's pain remains significant. The scan shows little improvement. The team decides to dial down his shunt a bit, so it drains easier. We leave after four hours during the height of rush hour. An hour into the car ride, Ty begins screaming out in pain. He begins saying that he feels sick. I pull over with my hazards, administer meds and begin rushing home at 80 miles per hour. He vomits all over the place several times on our way back. We talk to his surgeon who explains that he again needs to adjust to the new setting because he may be overdraining. That we should give it a day or so and lay him down so he is most comfortable.
Monday Night/Tuesday morning (3AM) - Ty is sleeping, but his breathing is VERY labored! When we wake him, he complains that his mouth feels funny. He lost his ability to drink from his sippy cup. His speech is very slurred. His pain is out of control. There is a major ice storm. We leave for the hospital again a couple of hours later. He is admitted immediately, another CT scan shows slight improvement in his ventricles (so his shunt is working well at this setting) but now his original tumor site shows a very dangerous mass that appears to be caused by ruptured blood vessels. Ty suffered a similar bleed at the tumor site in October while being treated with chemo, but that was believed to be a result of the tumor dying. This time we are told the bleed is likely the result of new tumor activity/growth due to the fact that we haven't been able to continue with Ty's chemo regimen since early November (infection, shunt complications, suspected lepto-meningial disease... I could go on about the various complications...).
So, now it's Wednesday. The tumor board met this afternoon to discuss Ty - AGAIN. The good news is, there are options and we are in the early stages of discussing a course of action with the intent to aim for a cure (as opposed to previous discussions that revolved around palliative care). The most recent scans show the suspected disease in his spine continues to disappear, and that in itself is a miracle. The doctors have absolutely no explanation as to why a lesion on his cervical spine #5 progressed so quickly in 12 days that they doubted he would survive Christmas, yet yesterday's scan shows that same lesion to be practically gone. What a kick in the face that the minute we reach for the champagne; a blood vessel in his original tumor explodes and puts him in what we are told is a critical state where the if the bleed continues it will be catastrophic. So far, he is stable and nothing is happening. They gave him a huge boost in steroids and he is talking well and really doing great. We are waiting it out in the PICU across the street from MSK and if he continues to do well over 48 hours the risk of another bleed will be much, much lower. In fact, they will move us to a step down unit tomorrow, observe through the weekend and look to send us home over the weekend.
We are told that there are several options to consider, including surgery, more chemo and radiation. We need to discuss with all of the individual teams over the course of the next week or so and make a decision on next steps by mid-week next week because we don't want to waste anymore time. I don't like any of these options for various reasons, but we don't have a choice... we have to do something.
Lou and I are feeling like we are at the end of our ropes, but we will find a way to hold on. It's as if we have come full circle and we are having similar conversations around chemo and surgery that we had with various medical teams back in August when he was first diagnosed. The tumor isn't as bad as it was when we started out, but I get the idea it is getting there. I don't know how much of this we can put Ty through again - but at the same time we don't want to dismiss any options if it can save our boy. We just don't know how we are going to get through this, but we've said that before and we pulled through. It's Ty's strength that inspires us and gets us up and over each and every hill - no matter how steep or how high. We keep the faith, we stare at his sleeping face for hours on end, and we are filled with hope and love. It is a powerful feeling and we will be okay, thanks to the strength of our little fighter.