Quick update...

Just wanted to post a quck update and a few recent pics of the little guy. Trey's first 1 month follow-up appointment went well. His counts from his urine and blood analysis were all good and the oncologist said he can resume a "normal" routine. We are very happy about this.

As we said in the last post, Trey had his Broviac central line catheter removed from his chest. He's extremely happy about this, and so is Josie since now she can be as rough with him as she wants (or as mommy and daddy allow).

Here's Mr. Tough Guy showing off his tube-free chest and scar.

He's so happy that he can take baths again (he couldn't take a bath since the beginning of July).

And finally, here's one of his new buzz-cut ("look ma, no hands").

So Long Tubies!

Trey had the surgery to remove his Broviac catheter this morning...WHOO HOO! We were at the hospital by 6:15am and home by 8:30am. Trey did great and is taking a little nap now. The doctor came out after the surgery and handed me the catheter in a bag so we could take it home! A little souvenir of sorts. I just had to attach a picture to show everyone. It is pretty neat to see it now that it isn't in his chest, just hope it is the only one we ever have as a memoir. Getting this out didn't come a day too soon as Trey's chest was so irritated by the adhesive and cleanser that he practically itched the dressing off the other night. Thankfully the tube was still in tact in the morning...Ugh!

Since we were saying goodbye to the tubies this morning, we did a little photo session last night so we can remember it. I included some pictures below. Once Trey is ready, he and Josie are starting at a new "school" together. Trey's first follow up appointment is at the end of this month. We hope for an uneventful visit. :) Lots of prayers and positive vibes for that! I can almost see things heading back towards "normal" sometime in the foreseeable future.

Take Care and Stay Healthy!

Lovin' it.

Trey's test and scan results are in and the news is favorable! His tumor has shrunk by 25% since the last scan in August. This is great news and the doctors believe the tumor should continue to shrink as the cells inside of it die. The tumor may not go away completely but as long as the cells inside of it are dead, that is OK. The MBIG scan showed the tumor still "lighting up" indicating abnormal cells, but the image was less bright than the previous scan. The doctor said this could be the abnormal cells dying off. Either way, she said it was all good news. Protein levels in his urine are all within normal ranges still. Next recommended steps are to monitor him closely with blood and urine testing each month and rescan in three months. Yep, that's right, NO more chemo scheduled. Whoo Hoo! So, I was ready to stroll down to the closest operating room and have them remove the Broviac catheter but I am settling for a scheduled removal in a couple of weeks. A real bath is just around the corner for the little guy. Thank you to EVERYONE for EVERYTHING especially the positive vibes and prayers for Trey. Keep 'em coming. He is doing just great and we are heading in the right direction!

Cycle 4 Complete!

Trey officially finished the 4th Chemo cycle on Monday October 19th. His counts are steady and he is going for the second MBIG scan this afternoon. Josie has been home from daycare the past week in an effort to keep everyone healthy as much as possible. Trey loves having his big sissy home because he has someone to play with and Josie likes being mommy's helper. It is nice to have them both here. Josie kisses Trey a lot and says that she is making his boo boos go away. What a sweet little girl (when she isn't tripping him or pushing him over). Trey took out a chunk of Josie's hair today though, so I think the tides are going to turn very soon. Prayers and positive vibes for our little trooper. Take Care.

Up, Up, Up!

Cycle 4, Day 15 and Trey's counts are back on the rise! No more shots. His platelets are still low but holding steady from last week so they should start to rise now that we stopped the shot. We met Trey's new oncologist yesterday and it went well. She is going to continue to consult with our previous oncologist as we proceed with Trey's care and that makes me feel more comfortable with the transition. Scans are set for next week and follow up on 10/26. Lots of prayers and positive vibes for Mr. Trey that he finishes out this cycle strong and his scans come back favorable.

Stay warm!

Big Sister, Little Brother

Cycle 4, Day 9 and Trey is in good spirits today. We will see what his blood draw brings tomorrow. I wanted to post these pics taken last week. Trey got caught up in a "Dress Up" session Josie and I were having. I couldn't resist. Isn't he a cute Tinkerbell?

Thank You Thank You...THANK YOU!

Cycle 4 - Day 8 and Trey is doing well. His counts are holding strong and we are going to continue his cell booster shots until his next blood draw on Thursday. Fingers crossed that he can make it through the next few days without his cell counts crashing. Trey's oncologist has moved to a different dept. in the hospital so she has referred us to an oncologist that is new to the team and is from Sloan Kettering in NYC. We meet her on 10/12, I am eager to hear her thoughts on next steps for Mr. Trey. If Trey stays healthy through this cycle and his counts recover, the follow up MBIG and MRI are already scheduled for 10/20-10/23. On 10/26 we meet with our doc to review results and talk about next steps.

Trey Fest was this past Saturday and we can't say Thank You enough to everyone that was involved in the planning and attended this awesome event. We are overwhelmed by the generosity of our friends and family. The day was gorgeous and it was so fantastic to see everyone that is supporting our family and pulling for Mr. Trey to get better. There aren't adequate words to describe how wonderful everyone is and how very grateful we are. So, I just keep saying THANK YOU!

Josie has decided to be Snow White for Halloween and Trey is going to be Superman. Last year he was a Carrot and couldn't even walk so he didn't experience "Trick or Treating". This should be a fun Halloween. Josie will show him the ropes and probably help herself to any of his candy she thinks should be hers. Ahhh, big sisters!

Take Care.

Cycle 3 - Complete

Cycle 3 - Day 21! Another cycle behind us, whew. Trey had his blood drawn this morning and if his counts are still stable then we head back to Strong tomorrow for Cycle 4. He is eating and feeling good, so that is a plus that he heads into the cycle strong. I really, really, really hope that this is the last cycle. Trey's sleep is still all over the place. We'll work on that once he is better, for now, he should enjoy sleeping in mommy and daddy's bed! We will be in the hospital from Tues-Thurs. Tim is actually hoping to get more sleep in the hospital, so that tells you how little sleep we are getting now. :)

Plans for Trey Fest are coming together and we are so looking forward to this event. The friends and family that have organized this are truly awesome, I can't thank them enough. They have even put up with me butting in along the way, they know how I am so they are "managing" me well. I don't get out much these days in case you didn't notice so I am really, really looking forward to seeing people and getting a break from episodes of Blues Clues. Among the many donations that they have coordinated, I just wanted to mention one that I thought was just too cool. Palmer's Food Distributors are donating hots and hamburgers for the event (yummy) and they read Trey's blog and also donated an entire case of meatballs for little Trey! This is too awesome. It is also nice because Nana and Papa can get a break on meatball making.

Take Care!

Cycle 3 - Day 15

Trey's counts are back on the rise, so no more shots this cycle. He is eating meatballs and is almost entirely off of formula. Whoo Hoo! His sleep patters are completely messed up and at this point we're not even sure it has anything to do with his treatment. We've established some habits this cycle that are going to take some effort to undo, such as going to bed at midnight, sleeping until 10am and then settling in for a late day nap at 5pm. This has made our days and nights quite interesting.

If Trey's counts remain stable then he heads back into the hospital next Tuesday for the 4th round of chemo. This will be another three day stay...the fun never ends. Tim and I are looking forward to spending time with friends and family at Trey Fest next Saturday. For obvious reasons, Trey won't be able to come. Big Sis Josie will be there and will fill Trey in on everything when she gets home.

Positive vibes and prayers for our little trooper Trey! Many thanks to friends and family as always. I don't know what we would do without your help and support.

Sleepless in Fairport

Cycle 3 - Day 7 and so far Trey is doing well. He is not sleeping as much as he should, similar to how he was during the first cycle (remember the midnight stroller rides?). We think it is a side effect of one of the drugs he received this round. The past three nights he has been up until midnight! Big sister Josie is not too happy that baby Trey gets to stay up later than her. He sleeps in a little later in the morning though, so that is a plus. Yesterday afternoon Tim took him for a long stroller ride to try and get him asleep only to return with Mr. Trey wide awake. So, then I took a turn and put him in the car and drove around for a while. He was finally asleep then I turned the car off...AWAKE again! He powered through until Midnight with little more than one hours sleep the entire day! Crazy boy.

Trey had his blood drawn this morning so we'll know his counts later today. Hope all is well with everyone.

Cycle 3 - Day 4

We're home from the hospital and on another 21 Day Journey. Trey did well in the hospital and got a chance to visit all his buddies on 4-3600 again. We started the cell-booster shots today. The doc said that it is likely Trey's counts will bottom out again this cycle, which is normal. We hope his counts will recover quickly as they have in the previous two cycles. (prayers, positive vibes, fingers crossed...you all know the drill)

All things considered, Trey is doing just fine. He had his 15 month check-up last week and is "healthy". He is in the lower percentiles for height and weight but sometimes kids on chemo have to do some catching up after their treatment ends...or Trey is just short like his mom and dad. Either way, he is still too stinkin' cute.

Friends and Family are organizing a benefit for Trey..."Trey Fest" is Saturday October 3rd at Johnny's Irish Pub. Anyone who is following this blog most likely has an evite already. If not, let Tim or I know and we can get one sent to you if interested.

Have a great weekend.

Two More Rounds

The response back from Trey's doctors is to continue on with 2 more rounds of chemo. She came to this recommendation after consulting with other COG docs and they feel that with a 98% success rate with 4 rounds it makes the most sense to finish out the full 4 cycles. They do not have a good way of identifying those kids that are "good" with only 2 cycles and those that need 4. Surgery is not the recommendation at this time mostly due to the potential long term effects of spinal surgery on such a little guy. Trey will be admitted to Strong on September 8th for his 3rd round of chemo. This round takes 3 days to administer the medications so Tim and I will be chasing the little guy around 4-3600 next week. One medication requires Trey to be connected to a blood pressure machine while it is administered adding yet another moving part to the equation. Should be interesting. The journey continues. Lots and Lots of positive vibes and prayers for little Trey that he remains strong trough these next two (and hopefully last two) rounds. He is our little trooper!

Update

We met with Trey's Oncologist yesterday to review his MRI. Basically, according to the report the tumor is unchanged compared to the last MRI done in June. Not exactly the news we were hoping for but this is not bad news by any means. It's just news. Good news is, all of Trey's counts have recovered from the last round of chemo and the Doc noted she was pleased to see how his counts rebounded in both cycles. Good, strong little boy! His urine test done after cycle 1 showed his protein levels to be back within normal range which is a good indicator (but not the only) that the chemo is working on the tumor. Unfortunately, there is no way to know for sure if the tumor is still "alive" or not. For lack of a better phrase, this part just stinks, but we get over it and get on with it. Here we go!

Next steps...along with the results of Trey's urine test done yesterday, the Doc wants to consult with the other Peds Oncology Docs at Strong this Friday, reach out to the International Neuroblastoma group of Docs to get advice and also review all of Trey's MRI's with one radiologist to see if together they come up with the same conclusion regarding the progress of his tumor. After all that is done she will reconnect with us and hopefully have a recommendation or maybe options that we will have to decide on. Her initial thought is that we will either need to proceed with two more rounds of chemo and re-scan following or we wait 3 months and re-scan Trey to see if the tumor has grown. If we decide to wait the three months, they will keep a close eye on Trey, checking his urine monthly to see if the protein levels increase that would indicate there is new growth of the tumor. Either way, little Trey-Man's journey is not over just yet. They want to keep the Broviac in for now so my nursing duties will continue for a while longer at least. Keep up all the positive vibes and prayers for Trey. We are getting him better one step at a time. Trey is going in for his 15 month check up next week and his new favorite thing to do is whatever Josie is doing. She is less than thrilled with his new interest at times but does love that he thinks she is the funniest person on earth!

THANK YOU for all the dinners once again...Tim's belly thanks you also!

Never a Dull Moment

Trey had his MRI yesterday and did well overall. They noticed some congestion in his chest while doing the scan and Trey came out of the procedure with a croupy-cough from the breathing tube. All normal stuff but hasn't happened to Trey during past scans. Later, his breathing was faster than normal and then he developed a slight fever. So, after taking his temperature many, many, many times (anyone who knows me should not be surprised by this) we headed to the emergency room to have him checked out just to be on the safe side. He checked out just fine and they sent us home. We were in and out of there in a little over three hours which is unheard of. They put us on the fast track and we appreciated it because the least amount of time exposed to those hospital germs the better!

Outside of yesterday's events, Trey is acting more and more like himself every day. He has become quite attached to his blanket and the tags on it. He cannot be fooled by any other blanket either. I had to wash his and Josie's blankets today. I gave him a substitute to use but he continues to reject it. I had to resort to driving him around in the car today to get him to sleep and sneak the blanket into his crib once he fell asleep. Little stinker.

Cycle 2 Complete!

Today is Day 21 of Cycle 2 so technically Trey has completed his second round of chemo. His counts are all stabilizing and he is healthy. Tomorrow is his MRI to see what progress the chemo has made on his tumor. We have to wait until next Monday (8/24) to learn the results when we meet with Trey's Oncologist. Positive vibes, lots of prayers and some good 'ole fashioned finger crossing that the chemo has had an effect on the tumor. This little guy wants to go swimming in a bad way but we have to wait until his treatment is complete and his Broviac is out. Hopefully next week we will have more information regarding next steps for Trey's treatment. Take Care!

On the Rise...

Cycle 2, Day 15 and Trey's white blood cell counts are back on the rise! No more shots for this cycle. His platelets continue to drop but we are still in a safe range, hopefully they will start to go back up soon too. After a weekend of not feeling much like himself, Trey is getting back on track. He just finished a great breakfast and is enjoying an episode of Hi-5 before we go outside to play. Thanks for all the positive thoughts & prayers!

Lock-Down for The Bauzas

Today is Cycle 2 - Day 12. According to yesterday's blood draw Trey's ANC is Zero, which means he has no infection-fighting white blood cells right now and is at high risk for infection. Mr. Trey is on lock down until his counts begin to rise again. The Nurse Practitioner told us to use precautions to keep him healthy but keep a realistic outlook as we can't live in a bubble (she doesn't know me all that well yet because that is exactly what I would try to do!). Anyway, I am trying not to go overboard and we are keeping a close eye on little man Trey. By Monday we hope his counts will be back on the rise.

The doctors have told us that children tend to feel "yucky" when their counts are low and may not be themselves. Also, the cell booster shot we give him each day may also cause his bones to ache a bit. Our little guy just isn't himself but he is still eating and drinking well so he is good. He has spent this morning watching Blues Clues on his floor pillows and eating mum-mum treats. We are heading out for our stroller ride and he should be snoozing in just a bit. Thanks for all the positive thoughts and prayers!

Cycle 2 - Day 8

Today is day 8 and so far Trey is holding up well. He had a routine EKG this morning at Strong and did just fine. As of yesterday's numbers, his counts are still dropping but not drastically. We started up the shots again to boost his cell counts. (I have not stuck Tim one time this week. Whoo Hoo!) Trey is not himself as far as eating and sleeping go but we just keep trying different things until something works. He still likes his stroller rides and has depleted the supply of meatballs we had in the freezer from Nana and Papa. A new batch is on the way.

We continue to eat wonderful dinners thanks to family and friends...THANK YOU!! Josie has become quite possessive of her little brother these days. She calls him "her baby" and warns Tim and I not to hurt him. What a nice big sister!

We will keep you posted on Trey's progress. Keep up all the prayers and positive vibes for Mr. Trey.

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.

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