Showing posts from November, 2010

Post #100!

Wow.  I can't believe this is the 100th post to Ty's blog.  With the exception of a couple of difficult days here and there, we have tried to post updates on a daily basis which would mean we began this painful journey more than 100 days ago.  After 20 days in the hospital this time around, it's beginning to feel more like 20 years... but when I look back to the days when our daily routine involved picking up a buttered roll on the way to preschool, and sunset trips to the beach after picking up the kids at the sitter, it feels like those normal family days were just yesterday.  We weaned Ty off of his IV morphine today, and converted his pain meds to oral.  It's been difficult to manage his pain, so we won't go home until tomorrow.  But, regardless, WE'RE GOING HOME TOMORROW!!!  Based on our previous experiences, I think just leaving the hospital will lift his spirits and help him to feel so much better instantaneously.  The doctors met with us around 3PM t


We are waiting for cytology on Ty's CSF, and we don't expect to be able to provide you with details until Wednesday.  The cytology is an examination of all the various cell types in his CSF in an effort to try and figure out his otherwise unexplained head pain.  In the meantime, we are patiently waiting for surgery tomorrow, and even more patiently waiting for discharge.  Ty continues to suffer from setbacks, the latest being an extreme bout of nausea and fevers, but as of this evening he was able to keep down his tylenol and now he is like a new little man.  He's happy as can be.  Here is a picture I took just minutes ago of Pop-Pop in bed with Ty.  Today he had him looking through toy catalogs and building upon his long list to Santa.  Speaking of Santa and the holiday season, a great friend recently suggested that I post a message about what we expect from our friends and family during the holidays.  It's true, I imagine some of you aren't exactly sure what t
Today we got some difficult news.  I don't have the energy to get into the details, but I will be sure to update everyone soon.  Don't worry, though... Ty is a fighter. On days like this, it's very easy to get angry.  I hate the world around me.  I am mad at God and at all the differents Saints that I've prayed to for all of their different causes.  But luckily, these feelings are fleeting.  I just have to look at Ty and I am reminded that he is a gift.  That those long eyelashes and perfect pillowy lips are to be cherished, and that we are all so blessed to have him.  This photo is Ty sleeping at 3 months old, but it might as well be Ty sleeping at 3 years old.  This is God's work. 

Brotherly love

Today was an incredible day.  Ty is feeling great!  His headaches seem to be gone altogether, he sat up a couple of times, he was wide awake all day and talking about how he's ready to go home soon.  "As soon as they get the tubie out of my head," he says.  The visit with Uncle Bill, Aunt Lorraine and GA-GA was great.  The nurses broke the rules for us and allowed Gavin to come into Ty's room - which was such a blessing.  Ty was so happy to see him, and when the doctor asked him, "how is your brother?" Ty replied "BIG!"  Lou and I think so, too!  Not sure what Aunt Theresa is feeding him, but she did tell me he ate two slices of pizza for dinner the other night and I noticed it is going straight to his thighs :) This was the best I could capture with my phone.  Brotherly love.  Doesn't Gavin look huge? Tonight Ty said something that made me run out of the room to cry.  He called me in close for a hug and a kiss, and after I gave him an e

We are thankful

We are thankful for our incredibly supportive family and friends.  We are thankful for the doctors and nurses who give Ty love.  We are thankful for Ty and everything he does.   We are thankful for our baby Gavin and his happy attitude through all of this.  Today we spent Thanksgiving at the hospital, and it was a good day.  We are so grateful for the time we have with Ty, especially when he is feeling well.  Today he had a good stretch of about 6 hours where he was awake, happy and without headaches.  It was a blessing.  There were several volunteers who served a delicious Thanksgiving feast in the playroom today that Lou and I particularly enjoyed.  All things considered, we had a nice holiday! Tomorrow Gavin is coming to the hospital!!  Today was the first day that Ty talked a lot about his brother, so I am excited to get them together tomorrow.  He wanted to see pictures of Gavin, and he said "I miss Ga-Ga."  I really wish I was able to record it, because it was so sw

Turkey Day at MSK... but it's okay

Well... we will not be going home on Thursday, but it's okay.  Ty had some setbacks today, including head pain and a scary episode where his heartrate skyrocketed.  My poor baby just can't catch a break. We spoke to neurosurgery and decided to hold off on the surgery that was originally planned for tomorrow.  Not because of what happened today but because the neuro team remains baffled by the amount of CSF fluid that is draining.  It continues to decrease, and it is at a level now that is practically insignificant.  Yet, he does not have an increase in intra-cranial pressure.  These two things alone would lead them to deduce that Ty does not require a shunt.  But, as I explained the other day, the enlarged ventricles that show on his CT are still a big concern.  We want to give Ty a bit more time to see if a slower weening process might help his body to learn to reabsorb CSF fluid without straining the ventricles.  We are going to "experiment" over the next couple o

Ty's Turnaround Day - FINALLY!

Ty was awake from 9AM until 5PM today.  He was happy the entire time, and he didn't have a single headache that required additional morphine since 2AM.  What a breakthrough!   I enjoyed him so much today.  We laid in bed together, I sifted through my magazines while he sifted through his toy catalogs.  We started to cut out pictures of the toys he wants and paste them up for his letter to Santa.  I tried to get a video of him saying how he feels "bedda" but he wouldn't cooperate.  Take my word for it, it is music to the ears... and so adorable in his little voice. So... the good news is, we are probably going to get out of here on Thanksgiving day!  If that works out, I will be the most thankful of all, that's for sure.  Thanks so much for all of your prayers.  The bad news is that he still needs surgery to replace his internal shunt, but maybe that's a blessing in disguise.  Surgery is scheduled for Wednesday and if all goes smoothly we can hit the road the

Night #11 in the hopsital and counting

Well... it doesn't look like we will be getting out of here for Thanksgiving, but there is still a small chance, and I'm holding onto that until we meet with the neurosurgeon tomorrow.  As of this morning, Ty was showing great signs that he wouldn't require a new shunt.  The neurosurgury team was so enthusiastic about how little CSF has been draining since they externalized the shunt, that we were even talking about the possibility of removing the hardware and going home before Thanksgiving.  Then they did a CT scan and came back with the opposite conclusion.  His ventricles, which channel the fluid in his head, were swelled up to about 4X the size since his last CT scan.  This shows that the fluid is indeed building up and that he does require another surgery to have a new shunt placed.  The worst part about all if this is that the original shunt hasn't grown back any signs of infection on the cultures, which means that the entire process of removing it was futile

Another quiet day

There is still very little to report.  Ty has been sleeping all day long, waking up occasionally.  But he is in pain when he is awake so it's better that he just continues to sleep it off.  Of course, we know what this means.... he will probably start to feel good around 1AM and want to watch movies, eat animal crackers, and he will say "don't sweep Mommy!" if I try to close my eyes.  :)  We have been down this road before.  This picture was taken at home a couple of weeks ago.  Ty is showing off a bracelet and necklace that he made a few months ago when he was still in preschool.  He misses his friends and his teachers from Kids by the Sea very much.  Hugs and kisses to everyone from Ty. 

Let's make Ty famous!

We don't have much to report from the hospital today.  The testing of his intracranial pressure has been postponed until after the weekend because he drained a significant amount of CSF fluid overnight and his neuro team wants to err on the side of caution. In the meantime, please share Ty's video with everyone you know.  We posted it a few days ago, and we hope you will share among your friends and family.  We want everyone to follow Ty's story, and we plan on making more compilations as his journey continues.  We want Ty to have as many supporters as we can get because the power of prayer and positivity is unmeasurable.  Thanks! Ty Fights Cancer

Successful surgery today

After a completely sleepless night last night (Ty maybe slept between 4:30 and 6:00AM), we finally took Ty to the OR around noon today.  Needless to say, it's been a looooong day.  The procedure to externalize his shunt was successful and Ty has been sleeping it off.  It was expected to take couple of hours so Lou and I were able to get outside and grab some lunch together!  Tacos and beer.  I can't find the right words to express the guilt we shared knowing that we were, in some ways, looking forward to surgery so we could get away for an hour and go outside.  It's embarrassing to even write those words, but it's true.  The only times during our multiple hospital stays that we are ever able to get out together is when Ty is in surgery (and, of course, when we go home sweet home).  Sometimes it's hard to fathom that our life has really come to this.  That giving him a kiss, and telling him every thing is going to be okay while he stares into our eyes with horror

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

Peace and Quiet (sort of)

After a long day with a lot of whining on Ty's part, he is finally sleeping peacefully and without an incident of pain for the past four hours or so.  I feel so relieved, I can finally relax a bit, sort of.  The "sort of" is because we are sharing a room with another 3 year old who just woke up after a quiet, sleepy afternoon on her part and she sounds like Ty did all day long -- whining and yelling :)  They are taking turns. I always prefer to share a room with another 3 year old, because it makes me feel better about my little Ty-rant's behavior.  Whenever Ty shares with an older kid I feel so bad because I can only imagine how awful it must be to be super sick and trying to get some sleep next to my 3 year old who is up all night making demands.  At least when there are two of them together, as parents we can give each other that look that says... "I know."  Ty's white blood cell counts are on the up and up.  They took him off his neutropenic diet

Thank you

Lou and I would like to extend our most sincere thanks to everyone who attanded the event at The Public House last night.  And, a special thank you to Charlie for organizing everything, and to all those who donated items for the silent auction.  Your thoughtfulness and your generosity moves us to tears.  I wish I could have been there more than you know.  I miss you all so much. Ty is doing okay, but not great.  He has had a lot of significant head pain today, but his shunt tap showed no signs of intracranial bleeding this time around, and no signs of infection on the cultures that were drawn (at least, not yet).  These headaches may end up being par for the course, which is a shame, but better than repeat bouts of meningitis or bleeding.  We'll see.  He is hooked up to a constant morphine drip again, and sometimes he requires additional medication when it gets bad, but his incidents of pain have been isolated and he is otherwise feeling good.  He is still eating well, doing ar

Missing everyone tonight

My cousins Chris and Susan came to visit today.  They drove all the way from New Hampshire and Maine to support Ty, and I can't tell you how great it was to see them!  I am truly touched.  When they got to the hospital, Ty had just started feeling better after a severe headache episode.  I was so happy that he was doing okay because I wanted to spend some time with them, but of course we got whisked away for a CT scan right in the midst of their visit so it was cut short.  Regardless, Ty is still asking about them and playing with the toy dinosaurs they brought... it really brightened our day.   Thank you Chris and Sue!! Uncle Harry and Aunt Theresa also stopped by and Uncle Harry decorated the wall in his room with a picture of the one and only Rocky Balboa.  Ty thinks it is soo cool.  He really is surrounded by so much love and support, he is one lucky little guy. I was really hoping to get out tonight to see everyone who is coming out for the benefit in NYC, but Ty has taken

TY FIGHTS CANCER - The first video compilation of our little fighter

Please enjoy this short video that we pulled together with the help of our cousins Pete and Debbie at DV Depot, and their creative video editor, Nayim Saati.  Ty has watched it over a dozen times and he just loves it.  He is a HAM, and his face lights up whenever I encourage him to show it to any of the hospital staffers! We are still in the hospital, but he is in pretty good spirits, thank goodness!  We expect to be here for as long as he is running a fever, so who knows what that means.  Fingers crossed that we get to go home fairly soon.

Exhausted in the ER

Awww, poor Ty.  He had his first episode of severe head pain just after dinner tonight, and it was so alarming we rushed him off to urgent care (grandma came over to watch Gavin).  We gave him some heavy duty painkillers beforehand, and now he is doing just fine - no worries.  Unfortunately, though, he is running a low fever and we are being admitted for the next couple of days.  We will be here for as long as he runs a fever.  He was doing so well!  I really thought we might get through this cycle without having to stay overnight.  I am just hoping that the pain he had was an isolated incident and that he won't have to suffer from any more headaches any time soon.  It's just not fair.  Here we are, all three of us with bloodshot eyes, waiting to get checked into our room which we are told won't be until after 1AM.  We got here at 9.  Argh! Lou and I were just talking yesterday about how nice it is to have our family back.  We had Gavin home with us for such a nice long

Neutropenic but still home with us

Ty's bloodcounts are low.  He is neutropenic which means he has no white blood cells and we have to be very, very careful with him.  Not so easy during cold and flu season when you have a little brother who is always full of boogies, but we are managing okay :)  We have to essentially treat him like a newborn because it is very dangerous if he gets sick.  He hasn't needed a transfusion yet, which is great news and a huge surprise.  Last time he was already running fevers, having daily transfusions and suffering from headpain at this point in the cycle.  He's doing so much better this time around and we pray this trend continues. The doctors suspect he will require platelets and red blood cells on Friday, so we will be back at the hospital to do that in a couple of days.  All in all, Ty is doing awesome.  He has been such a sport about it, and he just loves being home.  THis is the longest stretch in which we have all been home since August 8th.  I even went into the offic

Fingers crossed for a good visit to the clinic tomorrow

Ty has an clinic appointment first thing tomorrow, and we are looking forward to receiving positive news from his oncology team.  Of course, they won't know how effective the chemo has been as far as diminishing the tumor is concerned, but we are so happy that he hasn't been running a fever yet and that he hasn't been suffering from any severe head pain since we started the second cycle.  Hopefully, this is a sign of what we can expect moving forward with his treatment plan.  Ty has been home from the hospital for 11 days and he has been "tubie free" for 5 days (no needles in his mediport).  He took a couple of fully submerged baths for the first time since August because we didn't have to worry about getting all of his "hardware" and bandages wet.  Although he was very apprehensive about getting in the tub, I can only imagine how good it must feel for him to get all nice and clean in a warm tubby.  Snuggling him in his towels and smelling his supe

How cute

Ty is still feeling pretty good.  He got his bloodwork done today and although his counts are getting low, he doesn't need any transfusions just yet and he is still feeling really good.  Today Ty asked me why people have been giving him presents, and I told him that it's because a lot of people know about his cancer, and they know it hurts sometimes, and they want him to feel better.  Later today, he asked me to tell everyone about the needle he got this morning when they did his bloodwork because it "weelly hurt".  I told him okay, that I would post it to his website so everyone could read about it.  Then he paused for a minute, and said... "Mommy, I want you to also tell everyone who got me presents 'thank you.'"  So... TANK YOU.  XOXO, love Ty. Ty was just potty trained this summer right before we first checked into the hospital.  Now he is lazy and hooked on using a pee-pee can instead of going on the potty.  In an effort to break the habit, I

Happy birthday to Lou!

We had a great weekend.  Yesterday was Lou's birthday, so Ty was very excited to pick out a card and a cake beforehand.  Card had superheroes all over it, the cake had strawberries on it.  He loved singing happy birthday so much, we did it again tonight at Grandma's with the half of cake that was leftover.  Happy birthday to Lou, who has been my rock through all of this.  He was able to enjoy a fun night out in Long Beach with his best friends for his birthday.  I was so happy he was able to get out and celebrate after we had such a nice night out on my birthday just a month ago.  I was afraid he wouldn't be able to because what if something happened where I need to take Ty to the hospital, but Dawn offered to sleep over and we had a great night, too, just chatting away until the late hours.  Ty is still feeling really, really good.  He is so smiley and he has fun throughout the day that it makes me forget there is anything wrong with him.  I can't tell you how amaz

What a wonderful day!

Ty had an amazing day.  It was as if he didn't just undergo treatment at all. Now, I've been warned by others who have been through this that some individuals tend to feel really great just before they get slammed, and I'm prepared for that -- we just wanted to enjoy his great mood to the fullest today, and we did.  The most exciting thing we accomplished today was taking him off his backpack of fluids, and having Mommy remove his "tubies" from the comfort of his own home.  Don't get me wrong, there was nothing comfortable about the process, he was totally freaking out when I had to peel the huge bandages and pull out to gi-normous needles from his port, but after we were finished he told me that I do it better than the hospital.  Later today when he had to get his "G-shot" (a daily shot to help boost his white blood cell counts) he completely refused the numbing cream beforehand.  He is one tough cookie.  I had Lou give me a shot first, so he coul

A restful day

All things considered, today was a pretty uneventful day.  Ty is totally pooped and he slept a lot, but otherwise no complaints.  Yes, he is still getting sick sometimes, but we are trying to stay ahead of it with his anti-nausea meds and he's doing pretty good.  No appetite today, and he's already got some sores in his mouth :( but he doesn't complain about a thing.  I love him so much!!  We all do :) Here is a cute, very short video from when we left the hospital after his first round of chemo.

Ty did great!

Chemo is complete.  We have to come back for an appointment tomorrow to check his fluids and take some blood cultures, but he has otherwise completed Round 2 and he did great.  I just feel bad because he had a pretty rough morning on our way in. We left the house at 6:15AM and the poor baby was sick from 6:30 until we arrived at 7:30.  Lesson learned!  I will never take him in the car like that without giving him anti-nausea meds in advance.  I felt SO bad!  I did give him some medication in the middle of the night, just to be ahead of the game, but it was too soon to give him another dose before getting in the car.  Next time I will time that better :) Ty ran a low fever earlier in the day, but since noon he has been feeling really good.  Playing games, visiting the toy room, watching movies, and he still has a pretty decent appetite.  I am very impressed. Ty made a couple of fun Fall crafts with Nana and Aunt Debi today, and he just told me that he wants to give them to his littl

A long day at MSK!

Wow.  We checked into the pediatric day hospital at 7:30AM and we won't be leaving until 7:30PM.  Ty gets some very strong doses throughout the day (three different types of chemo) and then a lot of hydration and co-medication to treat the potential side effects of the chemo.  He has been a real trooper all day.  Some whines here and there that he wants to go home, but only when he's tired.  Otherwise he's eating like a champ in between small bouts of nausea, and he's generally happy.  I love that he is getting more comfortable with these processes and with the hospital staff.  I couldn't get a very good picture of him, but here he is being a champ. Back tomorrow for another long day.  Hopefully we will finish up early on Thursday. 

Anxious for tomorrow

Ty woke up at 3AM last night, and we've been up with him ever since.  In fact, he's still wide awake, watching a movie with Lou and I.  I can barely keep my eyes open, and he's asking me to cook him up some sausage and peppers.  It's true... and it's 9PM.  Today was a very emotionally charged day for Lou and I.  I'm sure it was fueled by the fact that we aren't getting enough sleep, we are under a lot of stress, we are apprehensive about starting another round of chemo and, of course, we are simply worried sick about Ty.  I'm sure all will go well tomorrow.  I'm so happy about the fact that we are trying to do this outpatient.  I think Ty is going to do better this way.  Thank you, everyone, for your unending love and support.