Time to kick some ass

We appreciate all of the calls and emails asking about how Trey is doing since his surgery. There actually is a lot going on which I'll summarize here. Quickly, though, Trey is feeling, looking and acting great but we're not out of the woods yet.


The post-surgical 3-month MRI and MIBG scans we did a couple weeks ago indicated that there is still some remaining neuroblastoma tumor present. So while the surgeons did an amazing job back in March removing the larger mass from his chest, the little bit that they left (remember the "finger" that was growing into his spine that they decided was too risky to try to get out?) is still there and has actually grown ever so slightly. Our doctor had said that this was a possibility, although we were hoping that once the larger mass was removed the remaining "finger" would shrivel up and die, which does happen sometimes. But, unfortunately it didn't. The MRI showed what appeared to be tumor present in that spot, and the MIBG scan showed that there is still active neuroblastoma cells.

Because of the tricky location of this piece (it's actually present in both the spinal canal going into the spinal column and the column itself) the oncologist and neurosurgeon had to evaluate the risks and benefits of surgery vs. chemotherapy for the best treatment plan. Surgery was possible, but based on its location, they would not be able to remove 100% of the tumor with one surgery. Chemotherapy - and specifically the drugs they would use for this type of tumor - has shown to be effective 90% of the time with similar cases as Trey's. So we decided to take the chemo route to see if we can get rid of this thing without the need for surgery/surgeries.

The doctors have assured us that Trey is not in any immediate risk, but because this thing is in his spinal column, they'd prefer to get started sooner vs. later.

So on Monday we took Trey in to get his Broviac central line catheter put in his chest. It is essentially a tube that goes right into the large vein that leads directly to his heart. Because Trey will be getting medicines and fluids infused in him frequently, he won't have to get pricked with a needle every time now. Brandy and I will have to undergo some training on how to clean and care for the catheter since Trey will be home with it throughout this process.

For his first round of chemo he needs various drug combinations over a 3 day period, so he was admitted on Tuesday and will be discharged on Thursday. Each round/cycle is 21 days. The standard protocol for his type of cancer is 8 rounds, but doctors are seeing some good results after 4 rounds. Our oncologist wants to do some tests after 2 rounds to see what kind of effect the medicine is having. So at this time, it's too soon to tell how long he will be on chemo. We are praying that it works and he will not need to endure another operation or multiple operations.

Right now, we are focused on his health during the treatment period. The biggest risk is infection, since the chemo will significantly lower his white blood cell counts at various times during these cycles. With his body not able to fight infection, he would need antibiotics administered via IV at the hospital should he get sick. We would like to avoid this. This is also why it is so important that we do our best to keep the Broviac catheter clean and care for it appropriately.

Brandy has taken a temporary leave from work to stay home and care for Trey. Her company has been very supportive and flexible, and so we are grateful.

That's it for now. As I said, we've got a long road ahead of us but we are still positive about Trey's prognosis and potential for a complete 100% cure.

I'm adding some recent pics. With all that Trey's been through, he just won't stop smiling.