Showing posts from December, 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. 

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

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, o

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 differe

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 s

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

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 t

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

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.

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 ou

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 withou