Quick update

Our little tough guy's been home now since Friday and considering what he's been through, he's doing pretty good. It's clear that there are certain times of the day/night where he is quite uncomfortable and definitely in pain. Even though he's taking Motrin and Tylenol, I'm sure that only can do so much. Nevertheless, he's very active - trying to master crawling, pushing up from his arms, playing with his toys, rolling over, pulling Josie's hair and punching mommy and daddy in the face.

All in all, he's still the same happy, smiley Trey-Trey that's he's always been.

We are still waiting for the cytogenetics test to come back - which is from what I understand a study of the chromosomes of the cells of the tumor they removed. It will hopefully confirm the earlier results of the initial biopsy they did last week.

Enjoying the warmer temps here in Roch and looking forward to spring.

Back Home!

Trey was released from the hospital on 03/20. His chest tube is out and we are managing his pain with just Motrin and Tylenol. We are amazed at how fast the little guy is bouncing back. Tim must have worn a path on the 4th Floor with the amount of time he spent strolling Trey up and down the hallway. He is definitely nosey again, so we know he is feeling better. We have to be careful not to disturb the incision so picking him up is a little tricky. Trey's right eye appears a little "sleepy" and that is because Trey has Horner's Syndrome which is caused when certain nerves are stressed or stretched during the surgery. Not harmful to Trey and should resolve itself when those nerves heal up over time.

The pathology is back on the tumor and the diagnosis is Stage 2 Neuroblastoma. The Bone Marrow tests came back clear. All previous urine and blood tests look positive and from all other scans it looks like the tumor did not spread. The doctors removed all of the tumor that was visible to them. The remaining small part that was not removed should not grow back and cause any more issues. This is not 100% guaranteed, but that is what is likely. If it did begin to grow back they are confident they could treat it. The next steps for Trey's treatment are close monitoring over the next several months to confirm that the tumor is not returning. At this point he will not receive Chemotherapy or Radiation treatment. This is all great news and we have no doubt that all the prayers for Trey have played a part in this positive outcome. Keep sending the positive vibes for our little guy. We are all happy he is home and starting his recovery. Josie is especially happy to have her little brother back. -Tim & Brandy

Trey's surgery

I just wanted to send out a quick update on Trey's surgery, since a lot of you wanted to be kept posted.

First off, Trey did great. It was a 3 hour procedure and when they were done, they felt good enough to take him off of the respirator since he was breathing well enough on his own. They originally thought he would have it for a while after. Secondly, they said that he didn't need to go to the PICU (Pediatric Intensive Care Unit), where they originally had him scheduled to go. Both were good signs.

The feedback from the surgical team that performed the surgery was very positive. They said that they were able to get a "gross total recession", which basically means that they were able to remove the entire tumor that was visible. In Trey's case, there was a "finger" extending outward from the tumor that was starting to grow into the spinal column. The neurosurgeon was able to get more of it removed (than he thought he'd be able to), but because of the risk of spinal chord injury he didn’t go too far. But they feel that they were able to get "99%" of the tumor removed. It was actually larger than we thought. The surgeon held his index finger and thumb apart about the diameter of a baseball when I asked how big it was. The oncology team is going to do a biopsy of what they removed to better understand the pathology of the tumor to help them determine the best course of action. We're hoping that they conclude that the tiny piece left over won't cause any potential risk to Trey, but we'll see.

We are encouraged by how the surgery went, but Trey is by no means out of the woods. With major surgery like this, there's always risks (infection, etc.). And since they opened up his ribcage to access the tumor, he is in quite a bit of pain..but he is on medicine for it.

Please keep the prayers and positive vibes going for our son. They absolutely help.

Trey Update

Well, we received some positive news today...Trey's right leg is fine and we can now move forward with surgery to remove the mass in his chest. His surgery is scheduled for Tuesday 03/17, St. Patrick's Day! Dr. Pegoli and Dr. Silberstein will be performing the surgery. He will be in the hospital about a week, starting in the PICU and then moving to the floor once he is stable. Thanks for all the prayers, dinners, phone calls, cards, positive vibes, babysitters and wine :) We are very lucky to have so many wonderful friends and family to support us. Positive thoughts for Trey! -Brandy & Tim