Round 2

Trey went in yesterday (Tuesday) for his second round of chemo and was discharged today. This round was only 1 day in-patient, instead of 3 days like his first round. We were admitted at 3pm and he was given a saline IV for 2 hours to hydrate him, then three consecutive infusions of three different drugs: carboplatin, cyclophosphamide and doxorubicin, for those keeping score at home. After the last infusion, he got saline for 3 more hours. They finally unhooked his IV at about 3AM.


All in all, little Trey did great. He didn't show any signs of nausea or major discomfort. The worse part for him seemed to be the confinement. For the 12 straight hours he had the saline and medicine hooked up to his Broviac catheter, he couldn't be more than 2 feet from the rolling pole that the medicine hangs on. He's at the age now where he's actually pretty quick on his feet and always wants to be walking (and running) around, so this means mom and dad have to chase him around the hospital with the rolling coat rack in tow. Or we have to constantly pick him up so he doesn't pull too hard on the tube going into his chest.




















Trey amusing himself in his hospital cage, I mean, crib.


We shared a room with a nice Amish family, although they didn't speak much and when they did it was in a distinct German dialect. Their little boy was around school-age and was mostly quiet so that was a plus for us. Little Trey could get some sleep but we sure missed the private room we had last time.

So Trey now starts his second cycle, which is 21 days. While he did really well during his first cycle, we're not sure how he'll react to the drugs he got yesterday. Two of the three are new (to him) so hopefully his anti-nausea medicine works again. The doctors also said that with more cycles come the risk of becoming neutropenic, which is when the white blood cell counts drop dramatically and you become very susceptible to infection. Definitely something we will be very aware of and will do our best to limit his exposure.

Day 16

Today is Day #16 and Trey continues to do well. His counts on Monday came back favorable and were on the rise, so no more daily shots for now. His platelets were still dropping but not drastically. We will see what Thursday's test results bring. He is looking good and acting more like himself every day. He is teething so sleep is still challenging but we are putting lots of miles on our cruising stroller! If we stay on schedule Trey should be admitted on Tuesday 07/28 for Cycle 2.

Although I continue to get more comfortable with my "nursing duties" it was made very clear on Sunday that I still have a ways to go. While I was trying to give Trey his shot I fumbled the needle and it fell on the floor, not before poking poor Tim in the leg though! Oops. No harm done and I am now holding onto the shot much tighter when administering it. (Sorry Tim!)

Trey is still going strong on the meatballs and pasta. Nana and Papa made a special batch of meatballs for Trey and Josie that should last through the weekend we hope. :)

Josie is enjoying her little brother (except when he tries to take her stuff) now that he can walk and interact with her. They both LOVE to watch Blues Clues! Tim and I know all the Blues Clues songs by heart. HELP!

Thanks for all the positive thoughts and prayers for Trey and our family.

Pass the Meatballs, Please

Today is day #10 of Trey's first cycle of chemotherapy (each cycle is 21 days) and he is doing well so far. He was in the hospital for three days to receive the chemo medications and has been at home since. He tolerated the medications well and the anti nausea medications helped a ton to keep Trey eating and feeling good. A nurse comes to the house two times per week to draw Trey's blood and help with dressing changes for his Broviac catheter. Dressing changes can be a three-man job is Trey is awake, two to hold him and one to do the dressing change. We have said from the beginning that Trey has a lot of Fight in him! Doesn't matter what it is, if he doesn't like it you are going to know about it. Tim and I flush his Broviac and give him his shot each day at home. Once I got over the initial shock that we actually had to do this at home, by ourselves I was okay. Still a little nervous about it but yesterday we did it by ourselves for the first time and it went just fine.

Trey is eating like a champ, enjoying 2 meatballs every day for lunch along with pretty much anything else he wants. We are all eating very, very well thanks to co-workers, friends and family members delivering meals each nite. I can't say THANK YOU enough for this, you are all wonderful! Josie is enjoying the meals too, much more variety than she is used to. Tim and I appreciate that there is food on the table with leftovers to spare. Like I said, our bellies are full and food is great fuel to keep going when everything else is so hectic.

With all that is happening on "the inside", Trey has trouble falling asleep even when it is clear he is exhausted. This is just part of the process I guess. Fortunately, the stroller tends to put him to sleep if nothing else will work. Tim and Trey enjoyed a nice stroll on Monday at Midnight, but it did the trick and he was asleep. What a good little guy.

We are told that the next several days are when Trey's red and white counts will drop to the lowest of the cycle. Keep Trey in your thoughts and prayers to stay strong and healthy through these difficult days. The Bauzas will likely be on "lock down" until his counts start to rise again.

Tim, Brandy, Josie & Trey

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.

The next couple weeks

Mr. Trey has a number of follow-up appointments over the next 2 weeks to help us get a better picture of his current health, since are at the 3 month period post his surgery.

Tomorrow (6/16) he will have an MRI and Wednesday we will be doing a 24-hour EEG. The EEG is to get a more thorough look into his brain activity to see if we can determine what might be causing his random, sporatic head tilting. He will have to wear the headgear with all of the pads/wires for 24 full hours. We have NO idea how we will keep him from ripping it off of his head, but we'll see.

Next week Trey will get his MBIG scan. We will bring him in on Tuesday and they will inject him with the radioactive dye and he will get scanned that day, the following day, and the day after that (that's right...3 days). Then on Thursday we meet with Dr. Asselin, his oncologist, and she will go over the results of all of the tests.

Please keep our son in your prayers for a clean bill of health.

Post follow-up visit update

We had our first follow-up appointment with Dr. Asselin, Trey's oncologist, two weeks ago and we're just getting around to posting the latest update. Because they believe they got most of the tumor removed, and because the biopsy they did after it was removed showed low counts of certain cells, she is sticking with her plan of careful/close monitoring. So what this means is that in June he will need to go in for an MRI and a MBIG scan, which once analyzed will give her a very good picture if what - if any - neuroblastoma is still present in his body.

Not to gross anyone out but I'm posting a picture of his incision/scar because I know a lot of you were curious about where they went in.

One thing we are trying to figure out is why he periodically makes what appear to be a somewhat uncontrollable tilting of his head towards his right shoulder. He probably does it once or twice a day, for about a couple seconds. It doesn't seem to bother him as far as being in pain, and we can't correlate it to anything obvious. It may seem like we are being over-reactive to such a minor "twitch", but with everything he's had going on we just don't want to take any chances. Brandy took him in for a EEG brain scan a few weeks ago which didn't show anything. None of the doctors he's seen have said that this is a common side effect of neuroblastoma or the surgery, so we are goign to keep pressing until we can figure out what it is. The neurologist that oversaw the EEG said he wasn't terribly concerned based on his observation of Trey.

So that's the latest. Other than that, he's doing really well. Finally figured out how to crawl and now is on his way to walking - or at least trying.

Mad love to everyone who has stepped in to babysit Trey during the work week throughout this month-and-a-half recovery period so Brandy and I can get back to work - especially Gramma Mary and Nana Kathi. Don't know what we would do without them.

For the frequent visitors

A couple people have (jokingly) given me a hard time for not posting more updates. "I want to see a new post every day". Honestly, there isn't that much to report right now. The way I see it, no news is good news. Next Monday is our first follow-up appointment since the surgery with Dr. Asselin, the oncologist, and she'll likely get Trey on a specific, regular testing schedule. More to come.

We did meet with Dr. Silberstein, the neurosurgeon, last week for a quick follow-up. He was very happy with how things went. He did talk a little about Trey's Horner's Syndrome, which is what is causing Trey's "sleepy" right eye as well as his inability to sweat on the right side of his head. This was caused by the disruption of Trey's right sympathetic nerve during the surgery, which is where they had to cut the tumor off of. You can see Trey's new look in the picture below. He's basically giving you the eye 24/7.

Dr. Silberstein said that usually it corrects itself over time. It could be a matter of months or years. In some cases, usually with adults with Horner's, they have it the rest of their lives. If this is the worst that comes out of all of this, we would be ecstatic.

Bye for now.