Thursday, December 30, 2010

Full circle

We have been back and forth between home and the hospital since Monday.  On Monday we were here for an MRI and to prepare for radiation.  On Tuesday evening, we rushed off to "Urgent Care" because Ty's face was very swollen and the site where his VP shunt was very red.  Luckily the neuro team said he did not have an infection and we were back home by 1AM.  Exactly 24 hours later, the phone rang and we were told that his blood cultures from Tuesday night grew a "gram positive" which means his mediport may have become infected when they accessed him on Monday.  It never ends.  

We were told we had to come back in the middle of the night last night, and now I am sitting in the same hospital room where we stayed on our very first night at Memorial Sloan Kettering.  It is so surreal to think of all that has happened since that day.  I remember how it felt to watch the nurse hang his very first bag of Chemo.  I was sick with worry and high on hope at the same time.  Lou took this picture at some point during that hospital stay.

Just recently, I was walking in a public place and I heard little footsteps running toward me from behind... and for a split second I thought it was Ty.  I have been replaying that moment in my mind over and over again, trying to recapture and hold onto those few seconds where it was as if none of this had happened.  The moment where I had forgotten Ty can't walk anymore.  I torture myself by looking back at pictures of him and screaming "WHY, WHY, WHY?" over and over in my mind.  Just look at this beautiful picture that was taken a couple of weeks before diagnosis.  I want to jump inside and go back to this place. 

Despite the fairly rough week, Ty is really doing well and he is surprising the doctors left and right with how strong he is.  He has even gained two pounds!  His legs are looking delicious again as he puts some meat back on those bones :)  His new favorites include bacon, blueberries and happy meals.

The attending doctor said he would try and get us home today or tomorrow, because we can administer the IV meds on our own.  If we don't get home by early tomorrow, we will be stuck in the hospital through the weekend due to the holiday, but I don't expect that to happen.  I'm trying to stay positive. 

The radiaton and oncology teams are still debating whether or not we will begin radiation therapy next week (for many complicated reasons that I will explain once I have more clarity).  I will keep you all posted on that.  In the meantime, thanks to all of you who have reached out with ideas for housing in the city, you have been such a help.

I didn't send holiday greetings this year, but I did have some beautiful photos taken recently.  Enjoy!





Happy New Year.  XOXO from the Campbell's

Monday, December 27, 2010

The greatest gift

Christmas this year was incredible. Ty had a wonderful Christmas eve and Christmas day spending time with all of his closest family. He had the most beautiful smile when he opened his toys from Santa. Three years old is just such a great age for Christmas.

When we learned the results from Ty's MRI from December 9th, we were told that if Ty's disease continues to progress at the same rate - we may have as little as four weeks. Lou and I have been praying for a magical Christmas without pain and without significant clinical symptoms, and we got that amazing gift. These have been the most beautiful days of our lives.

Today we returned to the hospital for a baseline MRI and to prepare for radiation treatment (which will likely begin next Monday). We were holding our breath waiting to hear the doctor deliver the results - prepared for the fact that she may tell us his condition has worsened significantly. Thank God that was not the case, and thanks to all of you for your prayers. The disease appeared to be stable, so it hasn't worsened since the last MRI. This came as a surprise to the doctors because leptomeningial disease is known to progress rapidly. The radio-oncologist reassured us that the type of disease Ty is faced with responds well to radiation as a means to provide better comfort for him over the course of the next few months. We are on board and ready to give it a try.

We will never lose hope and we will never stop preying for our little fighter to beat the odds and continue to surprise us all. Just last night he decided he wanted to walk all the way across the house. I couldn't believe how strong he's gotten. I barely had to help him. His doctors are amazed. Go Ty!

Pictures soon!

Saturday, December 25, 2010

Christmas wishes

No more cancer, no more hospital. Ty declared this at the dinner table loud and clear last night, interrupting a conversation lou and I were having with our friends Rudy and lynda. That is ty's christmas wish (and for Santa to bring the remote control big foot - thank you friends of Karen!!!!).

I just finished putting presents under the tree and eating santas milk and cookies and despite how tired I am, I just can't go to bed without thanking all of the amazing people who have made this christmas so special for Ty. First, I didn't mention the amazing treat that Patrick Harten arranged for Ty during our trip to disney. He is an air traffic controller and our pilot made a special announcement for Ty Campbell during our flight that he got clearance to cut the line on the jetway and to fly over manhattan. Wow, was it breathtaking. And Ty was so excited to tell everyone on the plane "that's me!" when he heard his name.

When we returned home from Disney, our house was glowiing in christmas lights and decorations galore. I mean, you can probably see our home from outer space and I'm not exagerrating. Thank you Charlie, for arranging such a special surprise and to all of you near and far who helped make it happen. Alex and Sharon and, of course, Beth, win the long distance award for driving from long island to freeze their tails off decorating. I wish I could have captured ty's reaction for you, it was priceless.

Finally, we have received a multitude of special gifts from people near and far who have been touched by Ty. I can't begin to tell you how wonderful it has been and how much it helped make this Christmas easier for all of us on several levels. A special thank you to my long beach secret santas. ThAnk you! It was magical when I opened that box filled with toys for Ty and Gavin all wrapped up from Santa because I haven't had a chiance to do any shopping. What a lifesaver and I can't wait to see what's inside :)

God bless all of you during this holiday season and every day of the year. Merry Christmas! Can't wait to post pics tomorrow. We love you all. Xoxo.

Thursday, December 23, 2010

Next steps

We met with a pediatric radio-oncologist at Sloan Kettering today, and she feels that a four week cycle of radiation treatment might help Ty find more physical comfort over the next couple of months. Lou and I are very unsure, but we are considering it. We are weighing the physical discomfort versus the psychological discomfort that Ty would experience if we had to take him out of his element once again and subject him to daily anesthesia and draining hospital visits. It's such a difficult decision, I wish we had a crystal ball for this one.

Our next step is to have another baseline MRI next week to see the tumor progression at this point before making any moves. We will keep you posted.

If we do decide to move forward, we will need to sublease a large 2-3 bedroom apartment in manhattan for the month of January. Please reach out to Lou or me if you know of anything available or if you have any other suggestions.

LETS MAKE TY FAMOUS :)
In the past two days, three different strangers stopped me in public to tell me that they recognized Ty from the blog. I can't even begin to tell how much it means to Lou and I to know so many beautiful people love our little boy and are following his story. When Ty was born, we used to say that with a name like Ty Campbell he could be a famous football player, CEO, surfer or senator. We want Ty's story to touch as many people as possible. He is an angel and he inspires us. We hope he inspires you, too. Please share the link to the blog and to his video with all of your contacts to spread the word about his incredible fight by cut and pasting these links. Thank you for your continued love and support.

http://www.youtube.com/watch?v=vfXUvwTR-Z8
Www.tylouis.blogspot.com

Wednesday, December 22, 2010

Pictures, pictures and more pictures

Since Ty's most recent prognosis (and, even since way before that) I feel like we have been living in a whirlwind.  In this new reality it feels as if we are being wrapped up and driven by the amazing force that is love, prayer and hope coming from all of you who care for Ty.  We have been lucky enough to be given so many amazing experiences with our sweet little boy, I am so blessed to be able to build these memories.  If I tried to get into detail about what has taken place over the past couple of weeks, I would need hours... so instead I am saying it all with pictures. 


First, we were visited by Ty's favorite superheroes

Then, the local fire department arranged for a SPECIAL, EXCLUSIVE VISIT WITH SANTA

Ty picked out his own Christmas tree.  We cut it down at the tree farm and it couldn't be more perfect.

Ty hangs the first ornament, he chose to hang a candy cane (see it over to the right?)

We had our first snowstorm, and Aunt Debi rushed over to help Ty build a snowman, which was so special to him

Then came our amazing visit from Make a Wish, who granted us an amazing trip to Disney

Here's Ty in his new favorite hat getting ready to go!  He was very excited...

At Disney, Ty went swimming for the first time since he was diagnosed.  In the past, he has been terrified about being submerged because of his "tubies" but not this time!  He even walked with help from Daddy.

At our resort, we had ice cream for breakfast more than once.  Why not?

Ty had another personal visit from Spiderman himself - arranged by Make a Wish and Universal.  The following pictures show Ty giving Spidey a hug after getting his autograph - then Ty with a huge grin while he signed an autograph for Spiderman, who promised to show it to Hulk and hang it on his wall.


Ty only had one day where he really didn't feel well, but his pain finally subsided enough for us to rush to Animal Kingdom for a quick ride on the Safari ride - Ty took a lot of pictures (so cute!)

Of course, there were pictures with Mickey and Minnie Mouse...

And, the amazing people at Universal Studios arranged for a private meet and greet with Barney, and an escort through the park so Ty had immediate access to all the rides, the best seat for the parade and a front row ticket to the Grinchmas show (it was Ty's first experience watching the Grinch!)

Here is a great picture of Ty and Gavin after a long day, and Ty with his new Spiderman.  Now that we are home we are so tired - yet we are still buzzing with leftover excitement. 


Next - CHRISTMAS!!!  More tomorrow.  We will never lose hope!!

Thursday, December 16, 2010

A wish granted

We're going to Disneyworld!!  The Make a Wish foundation has granted a wish for Ty and we are leaving for Disney today, returning on Monday.  Ty is the perfect age for a trip like this, it is going to be nothing short of magical. 

The Make a Wish foundation turned this around in just three days for us, and they pulled out ALL THE STOPS.  They came over last night with heaps of Disney-themed presents and an amazing itinerary.  Did you know they have their own Make a Wish village at Disney?  It houses more than 500 people at a time and each family gets to stay in their own bungalow.  It's amazing.  The characters come to visit often, in fact, Mickey himself will be stopping by to see Ty tomorrow morning (shhh... it's a surprise), and they have a ton of things to do on and off site.  That way, if Ty is having a bad day we don't even have to leave in order to show him some amazing sights. 

I was told that the NYC chapter of Make a Wish grants more than 500 wishes a year, and the Hudson Valley chapter grants more than 150 a year.  The majority of children choose a trip to Disney.  It's devastating to think so many children are coping with such serious illnesses, but it's also incredibly beautiful to imagine all of those wishes being granted. 

Speaking of wishes being granted, we have been so blessed to have SO MANY amazing people supporting Ty.  The Guardian Brain Foundation has been sending packages filled with butterfly kisses and get well wishes since the beginning, and we can't wait to meet Mary and Kathy - they are like family (Mary, Long Island next week - I will call you!).  The Ryan McElroy children's cancer foundation here in our new town of Pawling sent Spiderman, Batman and Superman to our house last week -- which was an incredible experience for Ty that he's still talking about -- the local Pawling Fire Department stopped by last night with SANTA, a special visit just for Ty.  And, all of our friends near and far have been so amazing.  We can't express how touched and how grateful we are to all of you.  I still need to find the tether to our camera so I can upload some pictures, but I will be sure to share soon!

With all of our love...

Saturday, December 11, 2010

Our hearts are bleeding, our souls broken

The news we received following Ty's MRI was devastating.  It was not the miracle MRI we were praying for.  I'm sorry for keeping everyone on pins and needles, but I needed some time before posting this update so I could digest everything and control my emotions.  I will keep it short tonight, and I hope to have more time over the next couple of days to share with you all that is swimming in my head. 

When we were told that Ty had a tumor, it was the most horrifying news imaginable... but hearing that his cancer has metasticized and that there is no chance of a cure has completely crushed our souls, stolen the air from our lungs and shattered our hearts into a million pieces.  It has been a struggle just to keep breathing.  I have to sigh constantly just to catch my breath.

We have already arranged for on-call hospice care at home and we are setting up a trip to Disneyworld next week through the Make a Wish foundation.  We want this time with Ty to be magical.  We are told to be prepared for as few as four short weeks, or as long as three months.  During this time at home, Ty has been amazing. He believes he is getting better with every day.  He says, "I peel bedda all-weddy!".  He told me just yesterday that he's ready to visit his school in Long Beach and find another school near his new home.  I struggle to smile without tearing up and I tell him, "of course."  He has been so happy, his belly laughs keep me smiling despite my broken heart and my throbbing head. 

Today we went to cut down our Christmas tree.  Ty picked out the most perfect tree I've ever had in all my life.  He is so proud of his tree, I can't wait to brag on his behalf by posting some pictures.  We are living every day to it's fullest, and making sure that Ty is treated like the perfect, most special little boy that he is.  I want you to enjoy and appreciate every minute of his time with us through photographs, so I promise to share photos of his new superhero room and the pictures we took with Spiderman, Batman and Superman the other day.  I will also share pictures of him at the tree farm and with his choo choo train under the tree and so much more.  Next week we will make a trip to Long Beach to visit with Ty's favorite Eva, with his beloved Sissy and Colleen, and all of our friends and neighbors.  In the meantime, here is one I took with my phone this morning.  The loves of my life :)

Thursday, December 9, 2010

So much to tell you!

Thank you for your patience.  Finally!  We have a connection!  First, of course, I want to share an update on Ty.  After several tough days, he is finally doing better.  We came home from the hospital late on Friday, and returned to the hospital today for an MRI.  Of course he was nervous about going in, but when I assured him that we weren't staying and that he wouldn't be getting any needles he immediately turned around and he has been surprisingly playful with the staff instead of his usual shy self.    He is in MRI right now, and he is expected to get out around 1:30PM.  Rather than stick around and wait for the results, we are going to return home, wait for the full report from the radiologist and talk to his doctors about the results tomorrow.  As you may know, this MRI is a very, very important one so we want to be together when we get the results, and we want to be sure that the full report is in because our doctors have delivered terrible news in the past and then apologized for the error (remember when they told us the tumor grew almost 3X in size, but it was really just bleeding??!!??)

As you may recall, just over a week ago the doctors saw what they believe to be new tumor growth in various places up and down his spine, but they were unable to find any cancer cells in his CSF fluid to prove it.  In this next image they are looking for any changes that would prove whether or not the cancer has metastasized.  Please, God… we are praying for a clean image (or, at the very least, a cleaner image than the last one).  We are praying for the doctors to be wrong.... for this to be a magic MRI.  There is a possibility that what they were seeing is scar tissue from the various bouts of meningitis poor Ty endured, or signs of another infection that they were unable to pinpoint.  We will find out tomorrow, and until then we will be experiencing a level of anxiety that most can't even imagine. 

Now for a lighter update on Ty and the rest of the Campbell's…
I've noticed a trend with Ty where the longer he stays in the hospital, the longer it takes for him to adjust to being home on an emotional level.  He starts off very anxious, irritable and sad… but with time he gets more and more comfortable, slowly returning to himself.  This is certainly holding true this time around, but with every day he is winding down more, and his increasing laughter fills the rooms. 

It is a harder adjustment for him this time, too, because we MOVED!!  When we checked into Urgent Care on Thursday night last week, we were still at our house in Long Beach.  When we checked out on Friday evening we drove straight to our new home upstate.  He is excited and he loves it, but it is a lot to take in.  It's a lot for all of us.  Plus, Gavin arrived a couple of days ago, causing chaos.  (Note to Colleen and Sissy - I think you will appreciate this picture the most J).


They say when you are going through difficult times that you should avoid making any major life changes (i.e., don't change your job, don't move, don't get married…).  Well, in order to better accommodate Ty's needs, Lou changed his job AND we moved, all in about one week's time.  To say we are stressed out is an understatement, but it will work out and it is already coming together so quickly thanks to all the help from our amazing family.  The reason why we decided to do this is because at Lou's new practice he will have much more time off to spend with Ty, we were able to get a house with much more space to meet Ty's needs and we are now closer to Lou's family who can help with Gavin. 

Last night, Ty was visited by Spiderman, Batman and Superman.  It was an incredible experience for him and I will be sure to post pictures ASAP.  In the meantime, please remember that we DO want to hear from you, so please send your holiday greetings to our new address (below).  Don't worry if you mailed something to the Long Beach address, either.  I will be back and forth quite a bit, and we also arranged for the post office to forward all of our mail.  Thank you!!

23 Bridle Way
Pawling, NY 12564

Monday, December 6, 2010

waiting for internet service

we haven't been able to post in a few days, so sorry to worry everyone.  ty was discharged from the hospital late on Friday, and he has been feeling better - slowly but surely.  we have been without internet service all weekend, but we hope to be back online with regular updates ASAP.  in the meantime, we are holding our breath until Ty's next MRI which is scheduled for Thursday. We are praying under every single breath that the doctors suspicions are proven wrong.  That whatever it was that they saw on his previous scan is gone.

p.s. please excuse the spelling and grammar. this is my first time posting from the phone.

Friday, December 3, 2010

Fever, headaches and 15 hours of nausea...

... means we are back in the ER at 2AM.  They don't have any beds available, either.  Not sure what to make of that or what that means for us.  Poor Ty just can't get a break.  He was doing great.  We had so much fun yesterday.  Then he woke throwing up this morning around 9AM and it still hasn't stopped.  I could barely get him to keep any anti-nausea of pain meds down, so we finally had to succumb and return to the hospital kicking and screaming.  Lou and I are barely keeping it together, but we are hanging on.

Ty, on the other hand, finally seems to be settling down and feeling a little better.  Thank God.  Hopefully we will get a room and be able to sleep after the emergency CT that is planned (who knows if/when that will happen).  Every time I think I can't take much more, I am hit across the head with much more.  So, I guess I can take it. 

Thank you to the incredible chef Sue Torres, owner of Suenos here in Manhattan, for sending a delicious meal to us on our first night home (and thanks to Janet for the personal delivery, too!).  What a treat!  We have our fingers crossed that we can enjoy the leftovers back home tomorrow. 

Wednesday, December 1, 2010

Buying time

We came home from the hospital today after 21 days, and I can't even begin to describe how it feels just to see Ty in the comfort of his own home.  As suspected, he hasn't even asked for one single drop of pain medication.  Mind over matter is an incredible thing.

Speaking of mind over matter, we have been recruiting all of you to send positive thoughts our way, and so far the doctors have not been able to confirm any bad news.  Although they haven't given us good news either, the fact that the cytology report today was "inconclusive" gives us hope and buys us time.  The doctors are on a mission to prove that Ty's cancer is spreading... and we are on a mission to prove the opposite through the power of prayer and positivity :)

Don't get me wrong, Ty's doctors would love more than anything to tell me that they are mistaken.  At this point, they saw something on a recent MRI that they believe to be disease spreading across his spinal cord, but without any cancer cells present under the microscope they can't be 100% sure.  As of today, the past three samples for CSF fluid have come back clean.  The plan now is to return to MSKCC later next week to repeat the MRI and CSF cytology.  While the team continues to warn us about what this might be because they don't want to give us false hope... hope is the power behind Ty's healing.  Hope is what is getting us through each and every day.  And, hope is something we will never, ever lose sight of, no matter what happens next.

Tuesday, November 30, 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 today and they said the cytology report has not been posted yet.  We will hear from them tomorrow morning whether or not Ty's cancer has become systemic, meaning whether or not it has spread to his CSF and the rest of his central nervous system.  If that is the case, we will have a lot of difficult decisions to make - but we will never lose hope and neither should you.  Right now, we obviously hope that the cytology report comes back negative.  If not, well, we will cross that bridge when we come to it.  In the meantime, keep the prayers coming, cross your fingers and toes, rub your favorite good luck charms and send positive light our way.  We love you all and we can't thank you enough for your support. 

Here is a video of Ty when he was 4 1/2 months old.  He was always the sweetest boy in the world.  I will never understand why cancer can attack such innocence and beauty.


Sunday, November 28, 2010

Patience

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 to do.  Should you send photos of your smiling children and holiday greetings filled with cheer while we are going through such difficult times?  Yes... absolutely.  Lou and I would very much like you to.  We love to hear from our friends, especially around the holidays, and it brings us joy to see how big your kids are getting, how cute your dogs are, how your family has grown, etc.  Please don't hesitate :) 

Tomorrow Ty will be having a new, sterile VP shunt placed.  If all goes well with his recovery and pain management, we expect to be discharged on Tuesday.  We can't wait to take Ty home.  He always does so much better when he is back in his element. 

Saturday, November 27, 2010

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. 

Friday, November 26, 2010

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 extra long hug he asked, "MaMa...You want me to get bedda?"  I got so choked up immediately, I could barely answer, "Yes, baby.  I want you to get better more than I want anything in the entire world."  I hope God was listening.

Thursday, November 25, 2010

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 sweet I almost cried.  Lou and I miss him beyond words, too. 

I just know Ty is feeling better because this morning he wrapped his arms around my neck and insisted I hug him, face-to-face, for three hours.  I cherished every minute of it (despite the neck cramp and the twisted back from the awkward position I was in).  One of the hardest things about Ty being sick is watching him in pain.  Before this disease turned our lives upside-down, I remember fondly the sleepless "sick" nights when I would hold and snuggle my babies through fevers and bad colds.  How I could rock them to sleep and cradle them until they felt better.  When Ty is suffering, he can't be held.  In fact, he can barely be touched.  It hurts so much because I just want to hold him into the wee hours of the night.  The hugs this morning made my heart sing! 

Enjoy this picture of Ty with his chocolate turkey that Nana gave him.  See the smile?!  He is doing well!


Thanks to all of you for reading Ty's blog.  It means so much that you care enough to follow him on this journey of strength and courage.

Tuesday, November 23, 2010

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 of days and if it doesn't work he will have surgery on Monday.  If it weren't for the holiday weekend it would be as early as Friday, but our surgeon won't be here. 

We won't see our family on Thursday, but Gavin is going to come spend the day with us at the hospital on Friday and that will be such a great day.  We are really looking forward to it.  Thanksgiving isn't a holiday that Ty really understands, so he won't miss it.  And Lou and I are actually looking forward to a quiet day together, just us and Ty, with minimal interruptions from the hospital staff.  We are going to just enjoy each other for one whole, quiet day. 

Monday, November 22, 2010

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 next day.  We are most likely on track to start chemo on Monday, which means all of this pain and suffering really isn't going to end up delaying treatment much.  Again, thank you for your prayers!

Sunday, November 21, 2010

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.  No one can explain his headaches, either.  We need Dr. House to figure this out for us, because it's really making me crazy.  I just continue to chalk it up to tumor destruction, although the MRI doesn't show any significant inflamation or pressure on the brainstem. 

Who knows.  I just know that I want him to feel better, I want him to be able to get out of bed, I want him to play and I want to see Gavin more than you can imagine.  That is what has been hurting Lou and I the most this past week.  We miss our baby GaGa so much.  And we miss having a normal day: cheerios all over the floor, off to work, dinner, bath, bed. 


Saturday, November 20, 2010

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. 

Friday, November 19, 2010

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

Thursday, November 18, 2010

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 has become par for the course as we watch him being wheeled away by strangers down a long, scary corridor.  That we see our 18 month old baby Gavin by Skype every once in a while, and in person every week or two.  That we sit in a cramped, dark hospital room for days on end, eating from vending machines and going for days without taking a single step outside.  That on some nights, we have to listen to Ty say he's hungry and beg for snacks for hours on end because he is not allowed to eat for 12 hours before anesthesia.  I'm only sharing this perspective because I'm very, very tired today and not feeling as positive as I usually do.  Lou and I were just talking about how it is very hard having a child with cancer (of course), watching him suffer and knowing that things may not turn out well... but what's equally hard on a day-to-day basis is living with the lifestyle changes to our non-existent daily routine that we have experienced.  Like, showering in a bathroom shared by 30 people, using up my 10th travel size soap and shampoo because each time we're hoping for a short-stay. 

Tomorrow, the neurosurgery team will be testing his intracranial pressure to see if he will require another VP shunt.  Please pray that he is NOT shunt dependent.  If all goes in our favor, we will be able to clamp the shunt that is now externalized, his body will prove to be able to reabsorb the CSF fluid without increased pressure, and we will be able to remove the new hardware over the next couple of days.  If it turns out that he needs another shunt, we will be in the hospital for a minimum of another 14 days, and his treatment with be delayed until all of this nonsense with the shunt and the CSF infection is resolved.  We are on a winning streak with the chemo right now, and we don't want to slow down for even a second.  We want to go, go, go!!!  THANK YOU for your thoughts and prayers. 

Wednesday, November 17, 2010

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 he is having surgery to remove his shunt (which is now undoubtedly infected) and we hope that will help reduce some of the pressure he is experiencing.  He also had a procedure done last night to externalize the bottom portion of the shunt.  Lou and I were in the room to help Ty through it because he was concious with a local anethetic, but you know how it goes with Ty... what is supposed to be a quick and simple task turned into an hour-long, painstaking event where the surgeon was about ready to give up -- but thankfully he didn't and was ultimately successful.  And, on that same note (you know how it goes with Ty), he was amazing.  I could never be so brave as my three year old son.  Lou was incredible, too.  He kneeled by Ty the entire time, talking him through it every step of the way.

I have learned that things change rapidly, and we can never "plan" for anything or know what to expect ahead.  There are many twists and turns that we have no control over, but this little boy is rolling with the punches.  In fact, my doctor today reminded me of how my husband and I came to Sloan Kettering with the attitude of... "we want to be as aggressive as we can be... we're not messing around..." and he said that the chemotherapy regimen that Ty is on is much stronger than what any adult would be able to tolerate.  I didn't know that until tonight.  He said a grown man would never be able to handle the side effects.  That just confirms what we've been saying all along, that Ty has amazing strength and that he is a true fighter.

Monday, November 15, 2010

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 today, and if he can last for 24 hours without a fever we can go home (although, that's not looking very promising just yet).  Tomorrow is bound to be better. 

Sunday, November 14, 2010

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 arts and crafts, watching movies, and being funny.  In fact, he interrupted the doctors today to say "Muze me" (excuse me).  The first time we ignored him, so he said it louder... "MUZE ME".  We stopped talking and I asked, "what is it?"  He said "I fart" and gave us all a big smile.  He is a character.   

Thanks again for keeping tabs on our little fighter.  Your loving support keeps us strong.

Saturday, November 13, 2010

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 a downturn so I had to stay with him here at the hospital.  He has been having bad headaches more and more frequently, and I want to be here for when that happens.  It's not fair that a little 3 year old boy should have so much pain.  I feel so helpless, but at least I can hold his hands and whisper in his ear how much I love him until he feels better.  I know that Lou will represent us well at the benefit :)  To those of you attending tonight, we love you to pieces and we can't thank you enough. 

Ty made Lou and I so proud today during his CT scan.  When he learned he was getting a scan, he got very fearful that it would require a needle (which it doesn't).  He was so scared, he asked me to cover up his hands so the doctors wouldn't be able to pull up his sleeves to give him any shots.  I put socks on his hands.  Then, Lou explained to him that he had to hold very still during the CT scan, and we never thought he would do it.  He has always been under anesthesia any other time, but this was an emergency because of the headache he had this afternoon and the docs wanted to get him in there ASAP to rule out any dangerous intracranial bleeds.  We expected him to totally freak out once he was placed on the table and under that huge machine - but he didn't!  He barely even cried!  He held still for the duration of the scan, and he amazed all of the doctors with how well he understood and adhered to their instructions. 

Afterward I was so upset with the neuro team because they decided to tap his VP shunt to get a sample of CSF fluid for cultures.  I understand being cautious and ruling out the possibility of another CSF infection or shunt infection, but I just wish it could have waited because as far as Ty understood, he thought that if he held still for the CT scan he wouldn't get any needles.  Then an hour later, in walks the doctor with a needle to poke through his scalp, followed by his daily G-shot to boost his white blood cells :(  I hate this so much. Ty is my hero. 

It's been an exhausting day.  For everyone who went to the Public House, I hope you had a drink for me!  I am throwing them back with you all in spirit :) 

Friday, November 12, 2010

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.

Thursday, November 11, 2010

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 stretch, it's sad to think that we are back in the hospital overnight again.  Hopefully this will be a short-lived stay, and Gavin won't even notice we're gone.  Here's a recent picture of the little guy who is, by the way, getting HUGE!

Wednesday, November 10, 2010

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 office today!!  It was so great to put on work clothes and high heels.  It felt soooo normal.  Lou and I are cherishing every moment, however short-lived this normal time at home it may be. 

We are so blessed and lucky to have such an incredible support network.  Thank you for following us in this journey.  We look forward to sharing this with you until the day we can put this nightmare behind us.  And, when that day comes, we look forward to paying it forward for the rest of our lives.  This experience has changed us forever, in a very good way.  THANK YOU!

Tuesday, November 9, 2010

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 super clean head is just heavenly :)

We look forward to updating you after our appointment tomorrow.  In the meantime, enjoy this funny little snippet from a couple of months ago.  I just love Ty's face when he realizes he's on video, he slows down and looks over like... "I don't care, I'm not going to smile..."  :)

Monday, November 8, 2010

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 bought him a new potty seat, which the goofball proceeded to put right on his head.  Always a funny guy.


Sunday, November 7, 2010

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 amazing it is to feel normal at times throughout the day, even if just for a few minutes.  It's just round 2 so we still have a long road ahead -- Ty is scheduled for 7 cycles of chemotherapy with 6 weeks of radiation at the halfway point -- but we'll take the good with the bad.  And these past few days have been SOOOO good.  He is getting off the couch and walking across the room, he learned to play a few games that he loves (he is crazy good at Hungry Hungry Hippos), and he is cracking jokes left and right which is just so funny.  For example, we ate dinner at grandma's house tonight and she made carrots.  I jokingly said to Ty "I can't be-LIEVE Grandma thinks you're gonna eat CARROTS!!"  because he hates carrots.  He giggled... then hours later at home he called out to me laughing hysterically and he said... "Mommy!!  I can't believe Gamaw thought I was gunna eat CAWITS!" 

Friday, November 5, 2010

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 could see that it wasn't too painful.  After he took his own shot like a champ, he was so good he may as well have asked, "what else you got?" 

The cutest thing he said today was about GaGa.  He told me that he wanted to talk to Gavin and tell him about the hospital.  When I asked him what he wanted to tell Gavin about it, he said he wanted GaGa to know that it doesn't hurt too bad.  How sweet!  And, he wants Gavin to come with him sometimes.  Ha!  Easier said than done :)  He tells me that Gavin wishes he had tubies because they are so cool :)

Thursday, November 4, 2010

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.


Wednesday, November 3, 2010

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 little brother.  He really is so sweet.  We hope to get home tonight before Gavin is in bed tonight so we can give them to him (although they aren't really appropriate for an 18 month old!).  Last night was a late night and Ty didn't get to see him all day.   More tomorrow...

Tuesday, November 2, 2010

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. 


Monday, November 1, 2010

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.

Sunday, October 31, 2010

Trick or Treat

Thankfully, we have no news on the medical front to report todauy.  Just lots of Halloween fun.

Surprisingly, Ty was "okay" with the fact that Gavin had to dress up as Superman instead of Spiderman today.  He was just happy it was finally Halloween!!  We met up with all of our friends in the neighborhood and joined the adorable trick or treat caravan.  Ty was totally sweet as Spiderman...


And baby GaGa made a super handsome Superman...


Ty was so excited for Halloween, he even wore his new Spiderman pajamas several nights in a row beforehand so he could get into character (thanks so much to Mary Palotta at the Guardian Brian Foundation).  He also had some fun with the vampire teeth that a sweet college friend of mine, Katie, sent with a fun package for Ty.  I could just eat him up. 



Gavin and Daddy had a great time trick-or-treating, too.  It was the first Halloween that Gavin was old enough to get excited about, and I think he really enjoyed it!!



Saturday, October 30, 2010

A fun day at the hospital, followed by a great day at home

We returned to the hospital yesterday for a morning appointment at the day clinic.  It was a simple visit, Ty had to have bloodwork done and the needles in his mediport changed (they need to be changed once a week).  The needle change is the worst, Ty's face is soo sad when it comes time for that and he cries like crazy, but it's fairly quick so at least he calms down soon after.  I just feel bad because now every few hours he furrows his brow and asks..."mommy, they gonna change my needle?" and I tell him "no. not today, not until next week," but he doesn't understand the concept of next week so he asks me again a few hours later.  He is scared, and I don't blame him, but aside from the needles he is so brave and really very accustomed to everything.  He never even complains when the nurses take his weight or his vitals (in fact, he helps them by sticking out his arm for blood pressure before they even ask, and putting his finger out for the heartrate, things like that).

It was the cutest day at the hospital yesterday, I was so happy we were there on the Friday before Halloween.  Each and every staffer -- the nurses, the receptionists, the doctors and the surgeons, were dressed in costume.  They also had seven wardrobe racks filled with donated costumes so every kid could dress up, and they decorated the entire floor.  It was adorable.  When we first checked in there was a magician performing for all the kids.  Then, there were special Halloween arts and crafts followed by a huge trick-or-treat parade through the hospital (Ty and Gavin got soo much LOOT!).  It was fun.  Ty was tired and a bit apprehensive so he wasn't as excited as he might have been under different circumstances, but it still made it much easier to be there.   

Ty seemed to really understand the difference between the day hospital and when we are admitted as inpatient, so we decided to explore the option of treating Ty's chemo outpatient next week instead of staying overnight Monday and Tuesday.  The doctors at Sloan are so kind and understanding.  They agreed that if it is better for Ty mentally, then we should try the outpatient approach for this round and see how it goes.  Seeing what a difference it makes for Ty to be home, Lou and I are excited about this option and we are now scheduled to start chemo on Tuesday, Wednesday and Thursday next week (but we will go home each night).  Yes, it's gonna be an exhausting routine for a few days, but everyone knows nothing feels better than being in your own bed -- especially when you're not feeling well. 

Today we had a really relaxing day at home, and Ty is getting back to his old self.  When I see him looking and feeling so much better with each passing day, it's hard to believe that he has such a terrible sickness inside.  It's just not fair that we have to start this all over again, to make him so sick again.  This simply has to work. 

Aunt Dawn stopped by this afternoon and we all went to Party City to buy a new costume for baby GaGa.  Ty has a Spiderman costume and Gavin has a Superman costume, but Ty has made it VERY clear that he wants Gavin to be dressed like Spiderman, too.  We tried, but there weren't any Spiderman costumes left!  Ty is not taking no for an answer either, so it should be interesting tomorrow when we get them dressed up to go trick-or-treating.  I predict Ty will have a bit of a tantrum when he realized that GaGa isn't dressed like Spiderman per his request. 

This evening Lou and I were able to relax with our friends Grace and Rossano.  It's always so great when we can get together with friends the few times we have the opportunity, so thank you guys for coming down and giving us a couple of hours of normal, everyday conversation :)

Happy Halloween!  I promise to post pictures tomorrow. 
XOXOXO, with love from Ty

Friday, October 29, 2010

Walking zombies

I didn't have a chance to post last night because I passed out nice and early.  Ty didn't sleep well at all on our first night home so I was hoping to catch up on some much needed sleep.

No such luck.  Lou and I were up with Ty from 12:15AM - 4AM watching movies and meeting his demands.  His schedule is way off because of all the time in the hospital.  There were times I wanted to get mad at him, but then he would be so cute when he says "I can't sweep" and he let's out these big, grown up sighs. 

We have an appointment this morning at the day clinic.  Ty needs to have the needles on his mediport changed once a week (which is truly a horrible, terrible experience for all of us - he is terrified of it).  He also needs bloodwork done and his weight taken before starting chemo again on Monday.  We are going to bring baby GaGa with us, so at least they can have some fun together in the giant toy room there.  I think MSKCC is hosting some Halloween activities today, which Ty should love.  Thanks for reading out posts!  :)

Wednesday, October 27, 2010

Ty 1 - Cancer 0

Today the Tumor Board at Sloan Kettering concluded that Ty's first cycle of chemotherapy was effective.  The pressure on his brainstem, which caused such major setbacks last week, has decreased by more than 50% and he is showing major signs of clinical improvement.  The tumor appears smaller than it did 10 days ago, which shows that what we hoped was blood is now being reabsorbed by his body.  He's talking better, walking... he's getting his old self back.  We are not out of the woods by any means, this is still only the beginning, but at least it means we can continue with the next cycle of chemo as planned. 

We have a pre-chemo appointment on Friday and we are scheduled to check back in for round two starting Monday.  It stinks because we worry that just when he starts feeling good and getting comfortable at home, we have to start all over again.  Poor little guy.  He is so strong. 

Psychologically, this has been a tremendously difficult for Ty.  Each time he switches environments, he is very apprehensive and very depressed. But, unlike an adult, we have to remember how resilient kids are and how quickly they recover.  He was sad this morning, indecisive, nothing would cheer him up and he napped for almost four hours... But, by 5PM, he was already showing huge improvements.  In fact, we had so much fun tonight watching movies, reading new books, doing arts and crafts.  He is in great such great spirits now, I am so happy.  He has said and done so many things tonight that I will cherish, I wish I had a video camera on him 24 hours a day so I could capture each and every one of those special moments and those glowing, sparkling smiles.  At the risk of sounding cliche, that face and the adorable things that come out of that mouth of his are just priceless.

Tuesday, October 26, 2010

Back home

Three-year olds can be so smart.  Ty has been reluctant to show any sort of excitement about going home.  I swear, it was as if he was thinking, "I'll believe it when I see it."  Every time I asked him if he wanted to go home, he would say "no!" very firmly.  It wasn't until after his MRI today, when the nurses actually disconnected him from his IV pole, that he started to smile and ask about going home.  He was very smiley on his way down the elevators and out the door, and he was talking to everyone, which shows he was in good spirits because when he's feeling sad he is very shy.

He certainly isn't himself yet, and I completely understand, but he is getting there.  He is beyond attached to me, I can barely put him down or take him off my lap, let alone leave the room.  The hardest part is seeing how needy he is when I try to spend time with Gavin.  Poor Gavin hasn't been home for 2 weeks and all I want to do is kiss him and hug him but I have to be careful not to upset Ty too much.  It's a balance.  Gavin is also thrilled to be home, he has already destroyed the place :)  He is so funny and so cute, we really missed him.  He's gotten so big in just two weeks!

Needless to say, we are all happy to be home.  And, I'm happy to report that although we won't have the final results from Ty's MRI until later tomorrow, the doctor's initial reading shows that the pressure on the brainstem has decreased significantly and they will most likely want to continue with the chemotherapy regimen (which is what we were praying for, because that means it's working so far).  Tomorrow's post will be more telling on what our next steps are... but we expect Ty to be home at least through the weekend so he can enjoy trick-or-treating.  In fact, the other day I asked Ty how he would like to decorate his room because he needs to get a new, more accommodating big boy bed, and he said he wants a Halloween room :)

Monday, October 25, 2010

Still surreal sometimes

Some days, I still can't believe this has happened to me... to us.... to our beautiful, undeserving Ty...  Sometimes it still feels like it isn't real. 

We took a family vacation the last week of July.  I was just a normal, working mom with two baby boys taking some much needed time off.  At the time I thought I knew what stress was, trying to balance deadlines and dinnertime on a daily basis.  I remember I even facilitated a virtual work meeting while at the lake house and kept up on my blackberry so I wouldn't come back to a tremendous workload.  A week after I returned to work, I found myself taking my perfectly happy, healthy boy to the hospital on a hunch that something just wasn't right. 

Today, we are still here.  Four surgeries and three hospitals later, I'm still laying next to my now 3-year old boy in a hospital bed, computer on my lap and Max and Ruby on TV.  Sometimes it's so routine it's as if my life has been like this for ages, other times I can't believe it's been more than a couple of weeks, let alone almost three months.  Life can change so unexpectedly.  Surprisingly, you learn to accommodate.

Although it's unfair to Ty that I am learning life's lessons at his expense, there are some very important perspectives I will always carry with me after living this nightmare.  First, that people are kind and good.  I have been so surprised and touched by how many beautiful people have been so tremendously supportive--some of whom I haven't been in touch with for over a decade, some of whom I've never even met.  At the beginning of all this I was warned that I may end up being disappointed in my friends and family because times like these can be very telling.  Instead, I feel the opposite.  My best friends will never change and will never disappoint.  My family has shown me how strong our ties are, even those family members who live furthest away and those that I don't hear from frequently have been sending their unending love and prayers and giving me strength.  My work colleagues have been beyond supportive.  My oldest friends and acquaintances have sent caring emails, checked in on me via facebook, sent gifts, attended fundraisers and made donations.  Complete strangers have become true friends.  I hope to be a better, more thoughtful person from this day forward as a result of this.

The second biggest learning to come out of this is my overall perspective on life.  I used to get so stressed over everything, especially trying to find time.  Now, I think "what's the worst that can happen?"  So I miss a deadline, or I am late on a payment.  The worst thing imaginable is happening right now, and this, too, will pass.  Time will go on and eventually it will be okay.  In fact, today Lou got in a car accident driving my new car.  It was bad, but thank God no one got hurt.  That's all that matters.  The car will get fixed and I could care less. 

MRI tomorrow, then we are homeward bound!!  Hopefully we will be on the road around 2PM.  The tumor board meets on Wednesday to discuss his situation (yes, there is such a thing as a "tumor board") and we will find out their recommendations on next steps Wednesday afternoon. Thanks to everyone for your support.