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.

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.

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.