Essentially, Ty has come full circle and we pretty much landed back where we started from… we're back at square one, heading toward a major surgery with the hopes of removing enough tumor so Ty will be cleared for proton beam radiation treatment at Mass General. The difference is that we have so much more knowledge and experience being a "cancer family" this time around, and that will help us through the tough road ahead.
When I think back to the time we spent in the hospital prior to his first major surgery (debulking and resecting his tumor in August), I remember having this idea that we would follow some sort of schedule. I couldn't have been more wrong or more inexperienced in dealing with a chronically ill child. Anyone who has had the unfortunate experience of suffering through a cancer diagnosis with a loved one knows that there is something called a "roadmap" that doctors present to the patient in an effort to lay out the treatment plan. A roadmap indicates what type of chemotherapy will be received, when, for how long, radiation details, timing, etcetera. I thought this meant we had a plan, and that things would go according to plan.
Prior to Ty's diagnosis, we were a super busy working family. I was an organized person who liked having control over everything. I thought I could keep working on a limited basis with sporadic time off for doctors visits and sick weeks during chemo (and I did try to hang in there for quite a while). I thought we would know what to expect from treatment… so he has surgery, then he starts his first round of chemo in September, round 2 in October, round 3 in November, then we would be off to Boston for radiation December - January, followed by a couple of low dose rounds of chemo before we could wrap it up and put all of this behind us. Anyone who has been following his story knows that not a single thing on Ty's "roadmap" went as planned. With every step forward, we faced two steps backward. Despite this, he has also beaten so many odds. He has completely surprised and baffled his doctors on many levels. For this reason, we are going to keep fighting.
As a result of countless setbacks, Ty has not been treated with chemo since early November. Because of these delays in treatment, Ty's original tumor site has recently experienced a lot of activity, meaning there has been growth in addition to dying tissue in a place where there is simply no room for the resulting changes in the size and shape of the tumor. Chemo has caused spontaneous hemorrhaging and when the tumor site bleeds it causes significant pressure on Ty's brainstem. This has led his doctors to decide that continuing with chemotherapy is no longer an option. It's just too dangerous. So, we are going to try to remove the rest of the tumor surgically so we can still get him to radiation. It is our only chance for a cure… and we are told it is risky and it is a long shot. We are scared beyond words, but if we do nothing at all the loss is just as great, so how could we not go ahead with this incredible leap of faith?
I hope that provides some background as to how far we have come, and why we are now faced with a plan that requires us to essentially start over. Please keep the prayers coming. Ty is such a trooper, and I have a feeling that he will continue to amaze us all.
Throughout the course of Ty's painful journey, our amazing friends and family have been so supportive. To every single person that reads this blog, checks up on Ty via facebook, reaches out via email, or posts comments - whether we have met you in person or not - we are tremendously grateful. I say this all the time and I mean it… we want as many people as possible to be touched by Ty's story. Thank you for caring, for walking alongside us down this difficult path, and thank you for sending your positive thoughts, your prayers, your energy and your love. XOXO to all.