Wednesday, November 17, 2010

More setbacks among some really good news!

The good news first or the bad news?  The good news?  The MRI report shows significant reduction in the tumor size, so the chemotherapy is still working!!!!!  Not just keeping the tumor under control, but shrinking it.  We are so optimistic, but also very anxious because this type of tumor has a bad reputation for responding well to chemotherapy, and then becoming resistant further down the road.  So, we hope to get a good enough margin after the third or fourth cycle so we can plan for radiation as soon as possible.  And our doctors think that we are well on our way!

The bad news.  The bad news is just so hard to share in detail because I don't even want to talk about it.  Ty is suffering through another bout of meningitis, and it's just so unfair.  The pain he is experiencing is unbearable to watch.  He is running high fevers, he is sweating profusely, he is terrified of moving even an inch because of how much it hurts, and he is often nauseous from the head pain.  Tomorrow he is having surgery to remove his shunt (which is now undoubtedly infected) and we hope that will help reduce some of the pressure he is experiencing.  He also had a procedure done last night to externalize the bottom portion of the shunt.  Lou and I were in the room to help Ty through it because he was concious with a local anethetic, but you know how it goes with Ty... what is supposed to be a quick and simple task turned into an hour-long, painstaking event where the surgeon was about ready to give up -- but thankfully he didn't and was ultimately successful.  And, on that same note (you know how it goes with Ty), he was amazing.  I could never be so brave as my three year old son.  Lou was incredible, too.  He kneeled by Ty the entire time, talking him through it every step of the way.

I have learned that things change rapidly, and we can never "plan" for anything or know what to expect ahead.  There are many twists and turns that we have no control over, but this little boy is rolling with the punches.  In fact, my doctor today reminded me of how my husband and I came to Sloan Kettering with the attitude of... "we want to be as aggressive as we can be... we're not messing around..." and he said that the chemotherapy regimen that Ty is on is much stronger than what any adult would be able to tolerate.  I didn't know that until tonight.  He said a grown man would never be able to handle the side effects.  That just confirms what we've been saying all along, that Ty has amazing strength and that he is a true fighter.


  1. I know you can survive through these tough times. I wish it weren't so unbearable. You guys are doing a great job fighting the fight. And thank god for the good news to help us stay optimistic!

  2. Hes an amazing little boy.. hes going to make it!! Just keep the faith and remember all the 1000's probably alot more, people praying for him all over the world!! You and Lou are going through alot, but we also see you guys are all fighters!! GOD BLESS Kathy Brunelle