Monday, August 29, 2011

calm AFTER the storm :)

Aside from a handful of flickering lights, the Campbell's were very lucky. We have power and we enjoyed being stuck in the house together watching DVDs. Unfortunately, we do not have phone cable or internet so I really don't have the capacity to update the blog. I miss my laptop!! Overall, Ty has been tolerating his chemotherapy very well. The first night Lou and I were nervous wrecks. We had placed plastic bins throughout the house and barely slept at night because we were waiting for him to get sick. Luckily, the pre-meds seem to be keeping his nausea under control and we are so grateful for that. The first day he had a terrible appetite, but that seems to be improving, too! Thanks so much for checking in. Hopefully we will be back online soon so we can share more.

Friday, August 26, 2011

Back on meds

Tonight we are officially back on meds.  Before bed we administered Temodar, one of the oral chemotherapy medications that Ty will be on for the next 21 days (at least).  We gave Ty a large variety of anti-nausea medications and sleeping meds an hour or so beforehand so hopefully he will sleep through any discomfort it causes.   We will be giving this to him twice a day.  The last time Ty was on Temodar was in June.  At that time he was also on Cisplatin (a different, stronger chemo)  and the dosage of the Temodar was different, so I don't know what to expect this time around.  In June his taste was very altered and he did suffer some nausea, but he didn't lose his hair and the medication was otherwise tolerated pretty well.  I hope the same happens this time around, but my fingers are crossed that it was the Cisplatin rather than the Temodar that altered the taste of food because getting him to eat is already such a challenge for us.

Over the past six weeks, Ty has been weened off almost all of his medicines.  I can't even begin to tell you the kind of freedom I felt.  Although his "med bag" still goes absolutely everywhere with us, there were a couple of times where I almost forgot it! We went days upon days upon days without even opening that damn thing, and it was glorious. I got so used to not needing to give him anything and for a while he was even eating enough of a balanced diet that I didn't need to give him supplements anymore.  Yesterday I cleaned out our medicine chest which, over time, had overflowed onto three additional shelves in our storage closet - that's right, I purchased what is fundamentally a piece of furniture with four drawers to hold all of his supplies and yes, it was overflowing - anyway, I am happy to say that I have a big box of medical supplies to donate to Haiti.  Despite the fact that we are going back on chemo, we are in good shape for now.  Good riddance!

Sadly, the med bag will be weighing me down a bit more from now on, but I am embracing it.  This is how we cure Ty.  Whatever it takes.  I hope I never need to set an alarm clock for around-the-clock medication every four hours, but I've done it plenty of times before and I'll do it again if I have to.  For now, anti nausea meds twice a day, followed by oral chemo an hour later is a walk in the park.  Really.  I am actually happy to have him back on medication because I don't want to take any chances with this disgusting disease.  Of course it is sad and I wish I didn't have to do this to him, but I believe with all of my heart that it will be successful and I am happy about that.  Some day..... Some day.....

On a lighter note, I tried to get out of our daily trip to the supermarket because of the certain pandemonium in advance of Hurricane Irene.  My clever Ty wasn't fooled.  Just because we went to the deli and CVS... that wasn't exactly the supermarket and it wasn't gonna cut it for that stubborn kid.  Sure enough, at the end of the day we waltzed through the aisles at the local A&P and stocked up on snacks we don't need.  Not a bottle of water in sight, I swear.  Over the past few days I've seen people buying enough bottled water to fill a pool!  But, hey, I'm not making fun.  I hope this isn't as bad as it potentially can be, but I don't blame people for being prepared for the worst.  I know better than anyone that it can always be worse than you expect.  Fingers and toes double crossed.  To all of my friends who are evacuated in Long Beach, come to my house in Pawling!  You are all welcome here and we would love to have you.  We have plenty of food, water and beer to get us through the weekend :)

TGIF!  With love from the Campbell's.

Thursday, August 25, 2011

The Road to Recovery

I think I may have posted under this title before, but after two solid months of steady improvement, I really believe that we are on the road to recovery.  I know that Ty has cancer and I know there is no end in <near> sight for his treatment, but I also believe that he will be cancer free one day and that we are heading in that direction.  After Ty's first surgery, I referred to a statement that his surgeon made several times... that we have only taken the first few strides in the marathon that is ahead of us.  After all we've been through this past year, I imagine that marathon as having a tremendous uphill slope for the first 10 miles or so, and we have just reached the height of it.  For the rest of this race, there will still be twists, turns, hills and bumps in the road, but God willing the hardest part is behind us.  I pray for that to be true with every ounce of my being. 

Ty is doing so good, I just can't imagine any different.  May his first year be the worst year.  There were several times over the past 12 months where I saw his life slipping away right before my eyes.  It was evil and brutal and so incredibly unfair. Sometimes I wish I could erase those visions because they hurt me so much, but most of the time I am grateful for them because I am able to look across the room at his face and reflect on what I almost lost.  I do this constantly.  I mean, constantly.  It absolutely consumes my thoughts... how close he has come so many times and how lucky I am to have him here with me still.  I am so incredibly happy to put this past year behind us, and I just know Ty will continue to get better.  Today we received a surprise delivery from a local restaurant that included an amazing Spiderman cake for SuperTy (thank you, Katie!).  Just look at that face when we celebrated over dessert tonight.  This is the face of a boy who is feeling damn good.  If it wasn't for his crazy hair (he is completely bald in the back of his head as a result of radiation), I don't think people would even be able to tell he is sick!  Even with that, I think it just confuses people.  They look as if they are wondering why on earth we would cut his hair like that :)  By the way, if you think Gavin looks huge in this picture, that's because he totally is.  At 2 years, 4 months he is the exact same height as Ty when we get him up on his feet.  What a goon!  :)

We'll sing our battle song for you, Super Ty!
Fordham Football is so totally awesome.  We received an email from them that teaches Ty the Fordham Fight song and they revised a verse specifically for him... "We'll sing our battle song for you, SuperTy!" it reads.  How cool is that?  I just have to share with you a few additional excerpts.  I hope they don't mind, I just couldn't believe what tremendous hearts these guys have...

Ty, even though you are still a little boy, you are stronger and tougher than all of us big football players can ever be. We hope our song helps you keep on fighting like we know you will. You continue to inspire us and make us all so proud to be your friends.

You are such a brave little boy for everything you have done and overcame. Your little brother Gavin looks up to you for everything, and we want you to know that you now have 100 big brothers to look up to on the Fordham football team.

Ty, what you go through every day is a complete inspiration to each and every one of us. We look forward to a long friendship ahead because once you’re a Ram, you’re a Ram for life! Best of luck with everything! God Bless.

I have dreams of Ty playing football at Fordham University someday.  Walking along that beautiful campus in his Maroon tee :)  Thanks, guys.  See you at West Point in October, if not sooner!

Wednesday, August 24, 2011

A new protocol for Ty - THANK YOU CHRIS!

Today we went for our weekly visit to the hospital and Ty is still doing well.  His blood work was perfect, but I’m sad to say he lost some weight.  Almost 2 pounds down, but his nurses suggested this may be because he is so much more active these days (which is true).  I just need to get a bit tougher with him about eating.  If he won’t eat better, I am going to start putting him on a belly tube feed at night so he gets the extra calories he needs to bulk up.  In the meantime, the team prescribed a medication to stimulate his appetite.  We'll see how that goes.

We also had a nice, long discussion with Ty’s doctor about next steps.  I am so happy to report that we have a new plan of action as opposed to the “wait until something happens” protocol that has been in place since Ty’s last surgery.  I don’t mean to sound as though Ty’s docs were doing him an injustice by not being more aggressive with the drugs we have been using since his cancer metastasized.  We had no choice but to wait for his bone marrow to recover, especially since he was neutropenic again just under four weeks ago.   I just hated knowing that the chemo we have been using over the past month (Avastin and Temodar) aren’t clinically proven to kill the cancer… they were only intended to prevent it from spreading until we had a better idea of next steps.

A great friend, Chris - who is extremely knowledgeable about the various oncology drugs available and clinical trials that are underway - was kind enough to meet us at the hospital and join our discussion with Ty’s doctor.  He has been doing a lot of research on Ty’s cancer and reaching out to various medical professionals on our behalf.  He has been an angel to us.  Unfortunately, Ty had a lot of demands so I wasn’t able to participate in much of the discussion, but Lou says it was one of the best meetings we’ve had about the details of Ty’s care in a long time and that everything was very positive.  I will share more details about the drugs we will be administering in upcoming weeks, but the bottom line is that we have a 27-week plan where Ty will be ingesting oral chemotherapy meds on a daily basis.  His bloodwork will be taken on a weekly basis and the drugs will be adjusted constantly in order to make sure his white blood cell count doesn’t drop to a dangerous level (in other words, we don’t expect him to become neutropenic often).  However, we will not begin this treatment until we have another MRI so we can be sure we are still dealing with microscopic disease.  If there are any additional tumors, our course of action will be completely different.  The MRI will be scheduled for sometime next week so please stay tuned on that… I will be asking for everyone to double-down on prayers and positive thoughts on behalf of Ty :)

Chris had nothing but good things to say about the new protocol that our doc has in place pending Ty’s MRI, and he also shared the details of an overseas study that had some very promising results with three children whose situations were similar to Ty’s.   In fact, there are a few decent studies that show positive results for brain tumor vaccines that we are exploring.  Unfortunately, in order to pursue this type of immunotherapy we need to have fresh, flash-frozen tumor tissue.  We were able to track down whatever has been stored from Ty’s previous surgeries, but unfortunately the samples weren’t large enough to create an experimental vaccine for Ty.  This approach is something we will pursue more aggressively should Ty’s MRI show any new lesions (which it won’t).  In the meantime, Chris has been SO helpful in getting all of the necessary paperwork in place and looking into options for grants and such so that if the time comes we will be able to jump on something like this.   Thank you, Chris, for taking us under your wing.

I realize this is a lot of detail, but I wanted everyone to know where we are at.  27 weeks sounds like such a long time, but when I say six months it seems so much easier to imagine.  No big deal, we can totally handle that.  The bigger question is, okay, what happens in six months if it IS working?  What happens if it ISN’T?  Truth is, because Ty’s cancer is so aggressive, there really is no end in sight as far as treatment is concerned.  If the new plan works, we will most likely keep on doing what we’re doing.  If it doesn’t, maybe we will be participating in one of these vaccine trials.  Who knows.  All I know is that I am happy we are moving forward with a more aggressive regimen to help Ty beat up his cancer.  Go Ty!  For your amusement, these are the passport photos I took of Ty and Gavin just in case.  I know it seems crazy, but we just want to be prepared to go anywhere/do anything for the best treatment options.

XOXO, with all of our love. 

Tuesday, August 23, 2011

Children's Museum and the Daily Planet

My parents had to leave late this afternoon, so I wanted to do something fun with Ty, Gavin, Grandma and Pop-Pop this morning.  We decided to head into Poughkeepsie to visit the Children's Museum, followed by lunch at The Daily Planet which was recommended by our friend and a huge hit with the kids (and me!).  The restaurant has a super hero theme and it was totally kid friendly, and delicious!  It was a great day without any real stress. 
Ty learns about gardening

The two of them in the fire truck, Gavin all dressed up

Here Gavin is saying "Arrrr!" like a pirate
We must have been in the car during the earthquake because none of us felt a thing.  In fact, this is the third earthquake I have been in and I never felt it, not once.  So, I can't really count any of them.  I have yet to really experience an earthquake and although I kinda feel left out, that's totally fine with me.  So thankful that there wasn't any damage done and no casualties.  Thank you, God. 

My best friend in the whole world is giving birth to twin girls tonight!  These are her first babies and I can't wait for her to experience that explosion of love that she is about to understand.  So excited for her and her family and I pray with all my heart and soul that the babies are happy and healthy always and forever.  XOXO Dawn!

Tomorrow we will be spending the day at the hospital.  Ty will get an infusion of Avastin, and we will begin the oral Temodar later this week (Friday).  I am very anxious to do this.  Although I don't want to lose any of the amazing headway we have made, I am absolutely terrified that if we aren't more aggressive with his therapy that the beast will rear it's ugly head again and I never, ever, ever want to encounter that vile, disgusting, brutally evil beast again.  But if I do.... I am ready to keep fighting.  Waiting for it, in fact I'll never let my guard down, but hoping with every ounce of my soul that it never comes for us again.

Ty will also begin a full array of at-home services to help bring him back to his optimal potential.  Speech, Language, Occupational Therapy, Physical Therapy and Special Education... all in the comfort of our home.  It's going to be a lot for Ty to deal with, but I think he will get used to it and he will embrace it when he sees how much headway he makes with the help from all of these wonderful people who just want to help.  I am excited to get that started, too!  I would prefer to take him to a facility so he would have a place to go and a more social type of activity to look forward to, but with so many unknowns pertaining to the types of chemo we may be trying in upcoming months, we can't take any chances exposing him to public places in the future.  So, for now we will stick with at-home care, and that will be nice.   

Off to bed.  I look forward to reporting good things from his check-up tomorrow.  Here's to gaining weight and perfect bloodwork!  Thank you all so much for keeping tabs on Ty and for all of your supportive words and prayers.  It means so much to all of us.  XOXO, love Ty. 

Monday, August 22, 2011

Lots of thoughts

Thank you so much for all of the comments you made on Ty's year in review video.  I can't believe all this little man has been through over the past year.  Cancer is pure hell, but when it's an innocent child suffering it makes it even that much worse.  My heart breaks every day, even when Ty is doing so well, because I have to see my perfect boy covered with scars and medical hardware. 

My friend who has had her fair-share of chronic health issues since she was a child always reminds me that surgical scars like his and hers are purple hearts, and I couldn't agree more.  I will be so proud of those scars when all of this is behind us and I will look at them as constant reminders to always strive for better.  To always be the best I can be, to do everything I can to make a difference and to help others like me and like Ty.  I know that he will, too.  He's always been such a special little boy, and he will only become more and more amazing as he grows into a young man. Ty Louis Campbell is going to do amazing things with his life... I promise you that.  As his mother, I will make sure of it and I tell God that every day.  Please give us the chance. 

Everyone wants to be blogging :)

My biggest problem right now is carrying the weight and the fear of knowing that those days may not come because cancer is lurking around every corner.  I feel its evil presence all around me and I am literally living in fear.  Lou and I just can't bear the thought of the bottom falling out. The fear of what's next. What does cancer have in store for us? It's killing me! I hate this disease as much as I hate pedophiles and child abusers.  But on the other hand, I sit and stare at Ty all day long and I see only that he is healing.  I know he is getting better with every day, and the issues he still has with his speech, his eyes and muscular weakness are all "leftovers".  Minor issues that will fix themselves over time.  Argh!  Where is all of this going?  I have said this over and over again, I will gladly do this for another year or ten if it means Ty will be okay in the end.  That he will be able to live the life he deserves. 

Ty has been sleeping so much better over the past few weeks.  In fact, the past few nights we didn't even give him any sleeping medication and he did pretty good!  Last night he was tossing and turning a lot, and a few days in a row he woke up for a half hour or so in the middle of the night, but he was in a good mood and willing to go back to bed shortly thereafter.  What a big difference it has made in our lives!  Lou and I are actually well rested for a change, and it feels amazing! 

Now we need to work on his eating habits.  He is so stubborn about what he is willing to eat and his selections are far from healthy.  For example, the past two days he ate marshmallows and craisins.  Exclusively.  Washed down with yogurt drinks.  It's just so hard to get tough with him about eating better when I'm just so happy to see him able to eat whatsoever and knowing all he has been through.  I don't want to fight with him when eating is one of the few things he is taking control of in his life.  That, and wearing diapers.  He insists that they are more comfortable than underwear and he wants to keep wearing them even though he has been accident-free for weeks.  I let him.  Again, the poor kid has been poked and prodded and forced to do so many things against his will, I don't like to deny him the few choices he can make on his own. 

This weekend was great.  On Saturday we spent the morning with Ty's "adopted" football team at Fordham University.  Friends of Jaclyn coordinated the adoption and they were there to facilitate Ty's official "welcome" ceremony.  Fordham is such a beautiful school and the boys were all so warm and welcoming.  We are happy to be a part of this program and Ty's next team activity will be attending the upcoming game against Army at West Point!  I am so excited for that.  Looking out at all of those young men in their prime, Lou and I got lost in our hopes and dreams of Ty being just like them some day.  I think he will!  We brought Gavin along to meet the players, too, and I think he caught the football bug :) 

In between some ferocious thunderstorms on Sunday were also some beautiful pockets of sunshine and we were able to enjoy a fun pool day with our friends and neighbors.  It was so nice to have a normal afternoon and a house full of kids (and grownups) having fun.  My mom and dad are staying with us for a few days, too, which is always such a huge help.  Ty just loves having them around.  Finally, we celebrated our niece, Deanna's birthday over the weekend.  Happy birthday to both Deanna and her dad, Uncle Rich, who also celebrated his birthday this past week.  We love you guys so much!

Friday, August 19, 2011

Ty's Year in Review

I finally completed Ty's photo compilation from the past year. It was so hard to tell his story through chronological photos in under five minutes. When I first pulled all of the photos I wanted to share, the video ran for 13 minutes :) Over the past week I worked to cut it down to five minutes, and I love it.

Please share this with your friends, family and cyber networks. September is pediatric cancer awareness month (represented by a gold ribbon) and I am trying to get a head start on spreading the word. Ty's year in review is a perfect example of what hundreds of thousands of kids are going through every day in the US alone. Pediatric cancer is the number one cause of death by disease among children. There needs to be more research toward finding a cure for these most innocent victims of all. Together, we can raise awareness. Thank you.

BTW - Lou and I really enjoyed the concert Wednesday night, and Ty was such a good boy while we were out. He was sleeping soundly when we got in that night (at almost 3AM). I was so exhausted yesterday, but it was worth it to have a night out for a change. Maybe now we will do it a bit more often knowing what an angel Ty was when we were gone!

Wednesday, August 17, 2011

May name is KIIIIIIIIIIDD Rock!

Today we spent the morning with James, Ryan and Aunt T.  They slept over and Ty had such a great time having them around.  They really keep him entertained with loads of fun, big boy games and toys.  Ty and Gavin were just being kids and totally enjoying themselves.

Tonight... I am going to go out with Lou and friends to a concert!!!!!  I am a total nervous wreck and I seriously don't want to go, but Lou keeps insisting everything will be fine, that we need this, and I know he is right.  I mean, I love Kid Rock (Linda and Debi - be jealous, Catherine - stop laughing), the concert is outdoors near Woodstock and it is a totally beautiful day/evening.  It should be fun?  Oh, I hope I can let go a little and trust that Ty is fine.  This is a really big deal.  Nana and Papa are here, and so is Mely our beloved and most trusted babysitter.  Ty is in a great mood, he's eating well, he is happy.  We've gone out before, but never further than 2 miles and I always wait until Ty is sleeping or close to sleeping before leaving.

I am excited despite my nerves.  I hope we have a great night, and I hope even more that Ty does.  Goodnight all.  More tomorrow.

Monday, August 15, 2011

More fun with balloons

Almost as much fun as pulling on the strings of 365 colorful balloons on the ceiling, was wading through a sea of balloons on the floor!  When we left the house this afternoon to get Ty's bloodwork done, the balloons still filled the sky in the boys' playroom.  When we returned, the pressure must have dropped or something (it's been raining like crazy) and we came home to a floor covered in rainbows.  The boys got such a KICK out of that! 

In fact, all those balloons on the floor inspired Ty to practice his walking for a very long time.  I know I keep bragging about how strong he is getting, but he is really walking well!  I think it will only be a matter of weeks before he can stand and walk independently!  I hope so, anyway.  He deserves this SO MUCH.  His new found independence has already changed our lives so significantly and we are only a fraction of the way there.  Please pray for Ty's continued improvement. 

Today I can put Ty down on the floor in a sitting position, and not worry too much about whether or not he can support himself.  I don't allow Gavin to get too close because Ty is definitely still wobbly (and Gavin can be rough), but it is such a gift to be able to walk away and to watch him playing on the floor with cars, or blocks, or tools.  I can also put him in a shopping cart and walk away, or in a booster seat and watch him "do art" at the kitchen table.  Tonight, for example, he was fingerpainting.  He's such a clown; he told me he was painting "Thin-dee" and he started laughing hysterical.  That means he was painting me, Cindy.  He never calls me by my name, I don't know where that came from, but he thought he was the funniest kid around when he came up with that one.  I am just so proud of him.  Finally, we have a home filled with giggles.  We are having fun. 

That's not to say we don't have our daily issues.  Ty did throw up today during lunch, not sure why, and getting his bloodwork turned into a stressful, two-hour ordeal (I don't even want to get into it), but compared to what our daily life was like just weeks ago we are living in a whole new world.  It's been almost, dare I say it.... normal!

Thank you for your continued support.  I have been working on Ty's "year in review" video and I can't wait until it is ready for posting.  Love to you all! 

Sunday, August 14, 2011

Balloons and Bubbles!

Picture a rainy, dreary morning.  It's always on those days that the kids get up way too early, and on those days I usually chose to overindulge the night before and stay up way too late enjoying one too many glasses of wine. Something about a rainy day also gets the kids crazy!  All of you with children know exactly what kind of morning we were having.  It was dragging on, three cups of coffee still didn't cut it, and Ty was crying non-stop over every little thing.  Thankfully it wasn't because of pain or because he wasn't feeling good.  He was just tired and cranky.  I kept saying things like, "Ty... C'mon!  You know better than anyone that there are much bigger reasons to cry than the fact that your craisin just fell between the couch cushions.  What's the matter with you today?"

Just at the right time in our painful day, the doorbell rang and we had the most exciting, unexpected surprise.  BALLOONS!  Hundreds of them!!  Literally, Ty received a delivery of 365 helium balloons to represent the days he's been fighting this vicious and passionate fight of his.  Can you imagine his face?  Here is his expression of complete awe holding his first balloon as they started rolling in. 

This was an anonymous gift that has touched our hearts.  I hope the thoughtful person who brought this cheer into our home this morning sees these pictures because I want him or her to know how it completely turned our day around.  The balloons completely fill the ceiling in the playroom, and I couldn't keep the boys out of there for the rest of the day!  In fact, we left about 20 of them upstairs so we could bribe them into coming back to the kitchen for dinner :)  It looks amazing.  It's also overwhelming to look at when you think how each balloon represents one day with cancer.  Wow. 

The rest of the day was spent playing and watching DVDs.  Nana and Papa came over to treat us with a delicious dinner for all of us tonight, and I am sitting here full and content.  I even convinced Ty to take a tubby tonight (he fights me so much every time) and he shared his bubble bath with Gavin tonight for the first night since I don't know when.  In fact, I can't ever imagine them sharing a bath post-diagnosis.  It was so cute and I was so happy to see them enjoying one another like that.  They were playing by pouring water over one another's heads just like old times.  Just seeing Ty able to sit up in the tub is enough to make my heart melt :)  I had to cut Gavin out of this one because he was being a lunatic as usual. 

Ty is getting so strong and so determined to get walking again.  It's adorable.  I will post a video very soon, but the bottom line is he gets up and walking with someone holding both hands up to a dozen times a day.  He can make it across the room and down the hall.  He even insists on going up and down the stairs (which requires more assistance) and he likes to try "jumping" over different things.  He yells to Gavin, "I'm gonna beat you!!!" with excitement and enthusiasm.  It is amazing, this kid. 

Tomorrow, bloodwork at a local hospital.  Tuesday an overnight visit from my sister and nephews, Thursday a meeting with the Special Education board at Ty's future school to discuss Speech therapy, OT and PT for Ty, Friday we go back to Sloan Kettering for the next round of chemo.  Please pray that it is working and Ty continues to improve until he returns to his optimal health.  Thank you so much for all of your love and support. 

XOXO, love Ty and the rest of the Campbell's. 

Friday, August 12, 2011

365 Days of Cancer

  • 365 days of cancer
  • 167 nights in a hospital bed
  • 16 surgeries
  • 44 days of radiation therapy
  • More than 50 CT, X-rays and MRI scans

This is how Ty spent more than 1/4 of his life so far.  But, during this year-long journey, Ty and our entire family were also blessed with all of the following:

  • 1 ride in the front seat of a Long Beach fire truck
  • 1 surprise meet and greet with Spiderman, Batman and Superman who came to our home
  • 1 meet and greet with Santa Claus who came to our house with the Pawling Fire Departent 
  • 1 amazing Make a Wish trip to Disneyworld
  • 1 very special fly-by of Manhattan while Ty was traveling (thank you Patrick)
  • 1 meet and greet with Barney
  • 1 more meet and greet with Spiderman who visited our hotel room in Disney
  • 1 Broadway show – Spiderman Turn Off the Dark
  • 1 adoption by the Fordham Football Team
  • 1 over-the-top decorated house for Christmas thanks to dozens of friends and neighbors
  • 1 very special adopted family member in Mary Pallotta and the Guardian Brain Foundation
  • 2 amazing fundraisers hosted on Ty’s Behalf by Robert Manzoni Memorial Fund and the Iron Riders MC
  • 1 "Pajama Day" fundraiser at Sunshine Schools in Pawling
  • 1 fundraiser for Mahopac "Relay for Life"
  • 1 friend who ran a marathon for Ty
  • 3 friends (including Aunt Debi) who completed their first triathlon for Ty
  • 3 friends who shaved their heads in honor of Ty for "St. Baldricks"
  • 2 friends who participated in "Cycle for Life" in Ty's honor
  • 2 children who asked for donations for Ty in lieu of birthday gifts this year and 1 extended family who did the same at Christmastime instead of exchanging gifts
  • 750+ lollipops delivered to our home
  • Countless meals cooked for my family from caring friends and neighbors
  • Beautiful blankets and shawls that go everywhere with us - hand knitted by the most loving people in the world (shout-out to Ma Sullivan, Tracey McCarthy and Lisa Martin!!)
  • Toys, games, stuffed animals, costumes and artwork that Ty will forever cherish
  • Visits from friends near and far who come just to pray for Ty and wish him well
  • Countless cards from children and adults across the country.  I keep every single one!
  • 4,099 "likes" on Facebook (c'mon, let's break 5,000!)
  • More than 700,000 visits to this blog

Of course, Ty's speech is still compromised.  In the attached "thank you" video, he says he's still beating up cancer... thank you everyone... I love you...

This list doesn't even scratch the surface of the blessings we have been graced with over the past year, and it doesn't even include all of the random acts of kindness that have been directed toward me and/or Lou.  It truly helps to counteract the hell we are also living in, and we thank you.  Even the simplest "hello to Ty" on Facebook brightens our day.
Tonight Lou and I took Ty out to celebrate with a "big steak." This was also a gift from someone we have yet to meet.  My nephew's generous football coach told us he wanted us to do something fun with Ty to celebrate, and that's exactly what we did (thank you Coach Shilling!).  He was such a good boy at the restaurant and we really enjoyed it.  The only incident occurred when he had to go to the bathroom, and it was kind of refreshing because it was no different than any parent's experience with a three-year old in a public place who immediately has to "go pee-pee."  The picture below is dark because of the lighting inside the restaurant, but look at that smile!

Today is a happy anniversary because Ty is here and he is doing great.  I hope to celebrate 60 more anniversaries of this date with him by my side.  XOXO to everyone, and good night. 

Thursday, August 11, 2011

We had our first scare in a while, but Ty is okay

I didn't post yesterday because Ty got sick at night.  Now that he is feeling better, I am convinced it was something he ate, but at the time I couldn't be sure and it was very frightening.  After an evening of over indulgence in chocolates, yogurt smoothies and other treats, he started complaining of a tummy ache.  Totally normal, I wasn't concerned, but I felt bad that he had painful cramps.  The scary part came when he developed a severe headache soon after.  It was bad and I ended up giving him morphine for the first time in weeks upon weeks.  He fell asleep early, woke up for a couple of hours in the middle of the night (and he seemed fine), but after he woke again in the morning he started getting sick and throwing up again.  It was so scary, I thought I was going to have to take him in for a scan.  Luckily, Ty felt better as the day went on and he was completely back to normal by the afternoon.  Of course I spoke to his nurse and we hashed out the various things that could be causing his sickness, from the best to the worst-case scenarios, and since his head pain was isolated and didn't persist she felt he was fine and that the pain was probably caused by pressure building after so much abdominal discomfort.  I pray so hard that is all it is.

I just want to take a minute to explain where Ty is at with his diagnosis because I've had some questions lately.  Right now, Ty's disease most likely still exists, but it is microscopic.  In his most recent scans, no tumors are visible for the first time ever, and without a tumor burden wreaking havoc on various parts of his brain Ty was finally able to bounce back physically.  He was also weened from tons of meds, which helps him to feel so normal!  However, since Ty's cancer metastasized in May (meaning it spread), we are told that it is only a matter of time before his cancer reappears and it will, ultimately, result in him succumbing to his disease.  To that I say "Not necessarily!"  I look at him and I think... maybe he will just continue to improve and be that amazing miracle.  Maybe when his cancer spread, it only seeded itself in two places and those two tumors were removed completely in June and successfully radiated?  You never know, and it is possible.  It happens.  Period.  People have and do survive Stage 4 cancer and I will never lose hope for Ty.

So, the plan is to continue chemotherapy.  Chemo is a systemic treatment (meaning it attacks the entire body, head to toe) which is most important when treating metastatic disease because it is no longer a focal area and we can't anticipate if/where it may appear next.  But we are always open to alternative therapies.  In fact, we are currently in the very early stages of pursuing brain tumor vaccine options thanks to a great friend who has done so much to keep us informed of the newest, most successful experimental medications and we will keep you posted on our progress in that pursuit. Even if we can't get approvals or such treatments, or if Ty is not a candidate this time, we will never stop searching. 

I'm sitting here watching some crazy show called Toddlers and Tiaras and it is so incredibly ridiculous I keep getting distracted.  Is this for real?  I wanted to crack up laughing when one of the moms, after torturing her four-year old daughter through hours of hair and makeup, complained about how stressful it was to be a pageant mom.  Yeah, I guess hearing your baby cry when she is being forced to wear uncomfortable clothes and when she doesn't sit still to have her hair extensions put in it can be stressful.  Geez.  C'mon.  Get some perspective on what is important.  Do these moms get some kind of weird self-fulfillment if their daughter is decided to have the best fake tan, the best fake smile, the best makeup and the best fake hair?  Do they really believe that makes her the prettiest of them all?  And why do they care?  The most beautiful girls in the world to me have no hair at all. All children are so beautiful, why should they have to be told so in a competition?  I am so sorry to go off on such a tangent, but this whole thing is striking a cord with me because my world is just so incredibly different, I guess.

Anyway, tomorrow is Ty's one year anniversary of the day he was diagnosed.  I am working on a "Year in Review" video for you all, but it may not be finished until the weekend.  I don't want to rush it.  Lou and I are going to take Ty out on another "date" at the nicest restaurant in town to celebrate.  What a year it has been.  What more can I say.  Pictures soon!  XOXO.  Thank you.

Tuesday, August 9, 2011

Long day at the hospital today

The hospital was SO busy today.  We arrived this morning at 10AM for a one-hour infusion of Avastin, but we didn't leave until 4:30!  It was torture.  They were so busy that Ty wasn't assigned a bed, either.  Which means I had to find ways to keep him entertained for hours on end without being able to lie him down for a nap or a TV show.  He started asking to go home within the first hour.  It was probably payback for all of the times my brother, sister and I tortured our parent's during roadtrips :)

I have to admit, though, it is kinda nice to complain about the normal musings of a three-year old.  His behavior today - although it was driving me nuts - was so normal and appropriate for a little boy who's feeling good and healthy and who just doesn't want to wait around anymore. 

His bloodwork was 100% normal for the first time since - I don't know - probably October 7, his very first day of chemo.  I am not exaggerating.  His red blood cells, white blood cells and platelets were all in the normal, healthy range. His electrolytes, including his potassium, magnesium and calcium, were all perfect. YAY! That's because he has been eating so well.  No more supplements!  He looks so amazing that jaws were dropping on familiar faces.  My favorite thing is to see a nurse pass by who hasn't seen Ty in a long time because they do a triple-take before smiling big or shrieking with excitement. "He looks great!" I hear this over and over again and my heart just sings. 

One woman even asked me, "Where's Ty?"  This is a woman who works on the inpatient side and you know we have spent waaaay too much time there.  In all seriousness, she didn't even recognize him because he is off the steroids and looking so healthy. 

Finally, after a steady streak of losing weight or remaining the same, Ty gained two pounds in the last week and a half!  Go Ty! 

I saw a little girl we know and her mom this morning.  She still has four more weeks of radiation (she is doing the six week course that Ty went through a couple of months ago).  She was looking good and I can't stop thinking about her today.  Her name is Meredith, please pray for her, too.  One morning when we were all waiting our turns for radiation (the kids go first because of anesthesia), I overheard the following dialog between them.

Meredith asked her mom, "Did you wish for me?"
and of course her mom answered, "Oh, yes. Of course I did!" 
"What did you wish for?"
"I wished for the cutest little girl to be all mine, so I could hug her and squeeze her just like this!"
The little girl giggled when her mom squeezed her and rocked her on her lap, then she said with a smile, "I bet you didn't want a sick one, though......"
"I wanted you," said her mom.  "No matter what, YOU are everything I ever wished for."

Her answer was perfect.  My sentiments, exactly.  Goodnight everyone.  XOXO.

Sunday, August 7, 2011

How did we get here?

One year ago today I put Ty down to bed around this time and he woke up just a couple of hours later. We had just returned home from our annual vacation at the lake the week prior, and ever since we got home he was increasingly whiny and restless each night. He always woke up, asked us to sleep in the room with him, wanted to move to the couch in the living room, and then he would just whimper and let out these sad, high-pitched cries for hours on end.

During the day he was perfectly fine other than being utterly exhausted (as were Lou and I), but there was something wrong each night after his head hit the pillow. We thought it was behavioral. That maybe during vacation he was having so much fun staying up and watching shows with his cousin that he was now fighting sleep. I still regret how I would yell at him at night, "STOP IT, TY! JUST STOP IT!" Lou and I were so irritable in the middle of the night, losing our patience with his antics.

But on this very night, 365 days ago, I decided to call the doctor sometime in the middle of the night. Earlier in the week we had already made an appointment for a sleep study on August 20 (2010), but I couldn't stand the sleepless nights anymore. What if he is in pain but since his 2-year old vocabulary is so limited he doesn't know how to tell me? The physician on call said that the sleep study sounds like the best approach, but if we wanted to subject him to a potential MRI with anesthesia we should take him to the Children's Hospital. Early the next morning, we had someone come over to watch Gavin and we were on our way. We just needed some peace of mind. We needed someone to prove to us that it was behavioral/psychological/habitual rather than something crazy like a brain tumor or something...

The first doctor to examine Ty said that our story about the nighttime crying is definitely odd and that we were doing the right thing to insist on an MRI, but then the neurologist examined him and found absolutely nothing of concern. She said they could fit us in for an outpatient MRI on August 16th. That wasn't soon enough for us - just the thought of another night of inexplicable crying was too much. We decided to get admitted to the hospital and wait for some time on the MRI schedule where a pediatric anesthesiologist was available.

We ended up spending three nights at the hospital waiting for that opening (long story).  For the most part, Ty slept beautifully on those nights which made the attending physicians doubt the necessity of the exam and reducing the urgency for them to squeeze us into the schedule.  Ty passed time racing up and down the hall on a ride-on train toy and making Play-doh pancakes.  We felt like silly, worried parents, but we weren't leaving there without a scan regardless.  God how I wish I could return to those days before we knew the truth.  That Ty has cancer.  Life was so much easier, sunnier, happier.  Even those three days in the hospital... when I look back we actually had some fun making the best out of the situation.  I remember feeling so sorry for the kids in the toy room and especially the parents of those who had no hair.  I never thought that would be me.  That I would soon be standing among them wearing the same ugly shoes.

Lou and I sat in the MRI room while Ty got his scan.  I had never had an MRI so I had no idea what it was like, but the noise was definitely more than I expected.  While Ty laid there sleeping, Lou and I sat in two chairs against the wall, holding hands but unable to talk to each other because it was too loud.  It felt like an eternity. 

When it was finally over, we were so happy.  Time to go home!  We were sent back to Ty's room to wait for the results and to allow Ty to recover from anesthesia.  Within 20 minutes we were all packed up and anxious to get out of the hospital - never to look back.  The fact that he slept well and that the neurology team didn't seem concerned had Lou and I feeling good about the results.  Lou said, "I'll go bring these bags to the car while we wait."  When he got to the hall he stopped because the team was approaching.  I watched his profile as he asked if the results were in.  "Yes?  Okay, great.  Are they good?"  His face dropped in slow motion as he turned to me and said, "We have to go out there.  It's bad." 

Still, I stayed positive.  We didn't know yet.  Maybe it wasn't a tumor.  "Bad" might not mean "cancer bad."  We were brought into a private conference room.  An ugly, closed off little room that offered no comfort.  I remember the nurse who was there, how she sat back in her chair as if she was relaxed.  I remember the neurologist, how I hated her face and I how I wanted to yell in it for making me think he was perfectly normal.   How her soft voice and monotonous delivery made me hate her more. I know it's not her fault that Ty has cancer and I don't really hate that person, but I hate that day, the news she delivered to me and the way she delivered it more than you can imagine.  If I close my eyes, I can put myself right back in that room with those same people only the yellow walls start melting and the room starts spinning every time I think about it. 

It all made sense afterward.  Ty's tumor was right at the base of his skull, basically in the middle of his head behind his nose and sitting just on top of the spine.  It was so severely pushed up against his brainstem that when he laid down at night, the pressure would build.  That was the only indicator so far that something was wrong, and he wasn't able to express to us how his head was hurting.  My poor baby.  How could I have yelled at him when he was in such pain!! 
After we met with the neurosurgeon, the oncologist and the social worker at Ty's original hospital, we were sent home to do our own research and select a neurosurgeon for his resection.  We made appointments with several of the best neurosurgeons in the state of New York over the course of the next week.  Within two days, I swear I told Lou Ty was slurring his speech a bit.  He thought my mind was messing with me, but then the next day he couldn't use his sippy cups or suck from a straw anymore.  It was as if the cancer was caught so it didn't need to hide anymore.  All of a sudden Ty was falling apart in front of us, and FAST. 

We arranged for surgery less than two weeks later, and so our journey began.  Thank you for being here with us every step of the way.  Without the love and support of all of you, I don't know how I would have come this far.  Sharing Ty's story is so important to Lou and I, and you are helping us to do that.  I am in the process of pulling together a chronological photo journal of Ty's fight and I can't wait to post it later this week, for our one year anniversary of his diagnosis.  In the meantime, I am reposting the video from our last vacation in case you didn't get to see it yesterday :)

Saturday, August 6, 2011

Vacation recap

We are home and everyone is doing great.  We spent a week at the lake with Grandma, Pop-pop (my parents), Uncle Harry, Aunt Theresa (my sister), and our nephews James and Ryan.  Aunt Debi and our beautiful niece Deanna also came to stay with us for a few days.  The kids all had such a great time and there's nothing better than spending time like this with family.  We are so grateful for such a wonderful week.  Tomorrow we hope to have a nice, quiet day at home before we return to the hospital on Monday for routine bloodwork and Ty's next dose of Avastin.  We should begin the oral chemotherapy this week as well, hopefully ASAP. 

I tried to capture this past week in this video.  Enjoy!  XOXO.

Friday, August 5, 2011

Amidst smiles, my heart aches

Tomorrow we are heading home.  I am ready to go, but also sad to leave.  I think I always feel that way toward the end of any vacation.  We have had great luck with the weather – nothing but beautiful clear and sunny days.  We enjoyed fires on the beach at night, boat rides and sand castles during the day. 

I shouldn’t be sad.  Ty has been so happy during our time here.  He looks absolutely amazing, he is getting so strong and he is gaining more and more confidence in himself.  He is feeling good.  No headaches, no vomiting in several days.  He is eating well - although he drives us crazy with how picky he is - and he hasn’t had a single accident since he was strong enough to get back on the potty a couple of weeks ago.  I’m so proud of him.  He is so strong, and so willful.  He is my dream come true.

I have been enjoying our time here immensely, but I would be lying if I said this vacation has been filled with 100% happiness.  Instead, my heart aches with every beautiful sunset, every infectious giggle and every moment of silence I get.  I don’t want to go home to more chemotherapy and anticipation.  I don’t want Ty to have to suffer through this anymore, I just want this improvement to continue until he is returned to optimal health.  I just don’t want to face the reality of having a child with cancer.  I want every existing cancer cell in his body to be obliterated.  I want what Ty prays for every night and wishes for on every star… “no more cancer, no more hospital.”  Ever since I caught him quietly whispering that phrase to a blinking toy ring in the hospital during his very first treatment, that saying has defined the very essence of my soul.  It’s all I can ever wish for… for Ty, and for everyone. 

Lou mentioned putting a deposit down on a lake house for next year and I immediately felt sick.  This lake has been a vacation spot for my family ever since I was a baby myself, but if things don’t go well I don’t think I ever want to come here again.  I have too many beautiful memories of Ty here.  Below I posted a photo of Ty at the lake every year since he was born.  All week I have been haunted by the thought of ever coming here without him.    

I try to remind myself that he already beat the odds by being here this year, but it doesn’t help me feel better.  The other day I was on the boat with the whole family and Ty was crying before falling asleep because he couldn’t get comfortable.  I thought about how he should be standing at the front of the bow, with wind in his hair like his cousins.  About how he would otherwise be running around with them all week, fishing and digging and swimming.   I cried under my sunglasses and even though I heard my family talking and discussing things like what we should have for lunch or how we should spend the rest of the afternoon, I simply wasn’t there.  I was somewhere else completely.  These moments of heartache have been frequent during this vacation, but they don’t last long and for that I am grateful.  I guess it’s just impossible to forget the reality of our situation, even during the happiest of times, and maybe that’s a good and safe thing.  I don’t know. 

Ty is excited about how strong he is getting.  He constantly calls across the room, “look Mama!” so I can see him knocking his knees together, or pulling he feet up to his chest independently.  He has been practicing his walking at least two or three times a day, and he can get all the way across a room with assistance.    

Gavin has been making us laugh constantly.  He is loving the lake and having so much fun.  He just loves to roll around and tackle everyone.  He has been SO good with Ty, too.  Helping out when he is practicing walking, giving him hugs and kisses, holding his hand on the boat.  He is our comic relief and our greatest blessing. 

As I mentioned, we will return home tomorrow and I will return to posting more frequently.  Thank you so much for always checking in on us.  It is very therapeutic for me to be able to share with you all, and I look forward to having internet service again!  XOXO and all of our love.    

Tuesday, August 2, 2011

Having a great time in the Adirondacks

We are having so much fun at the lake.  Since I have very limited access to the internet (I’m going to try and post from the local library) I am going to share a bunch of pictures to help show how things are going so far.

Ty did get sick twice when we arrived at the rental house, but I’ve been giving him medication and it seems to be under control.  He also lost the hair in the back of his head the day we got here as a result of the radiation, so we are finding hair all over the furniture, his clothes, etc., but he doesn’t seem to realize what’s happening.  Lou brought an electric trimmer with him so he tried to create a “fade” and it looks fine.  We are here with Ty’s amazing cousins James (7 years) and Ryan (6 years) – and James allowed Lou to trim his hair, too, in order to show Ty that it’s not a big deal.  Besides, Ty is so handsome, a big bald spot can’t change that J

James has been entertaining Ty non-stop with magic tricks since we arrived.  He has new “Harry Potter” glasses, he made a magic wand out of a nice stick that he painted gold, and Ty thinks it is just the greatest.  Ty even sat through a Harry Potter movie last night with his cousins.  He had no idea what was going on, but I think he just wanted to be hanging out with the big boys.  Here’s Ty holding his magic wand, and James with his new glasses.

The influence of his cousins is going such a long way.  They were coloring, and Ty wanted to sit at the table and “do art” which is something he hasn’t been doing very much of lately because he doesn’t like to get out of his comfort zone much – i.e. the couch.   He is getting so strong, he wrote his name to my utter amazement.  Look!  It isn’t very clear and he started drawing some other scribbles around it, but it’s been almost a year since he’s been able to even draw a line with any sort of coordination… I am so happy he remembers how and he was so proud of himself.

Lou set up a big tent with blow-up chairs for Ty down at the lake, and so far he’s been willing to spend some time there.  It doesn’t last long, but I’ll take what I can get.   Gavin, on the other hand, would spend all day down there in the water if he was allowed.  He has pretty much been running around naked since we got here.   Here’s big G after a long day of running around.

Ty has been practicing his walking every day.  He is getting very strong.  He can take about 50 steps across the room with some support under his shoulders, and then he stands holding onto me for another ten seconds or more.  It’s so wonderful.  Here is standing with me yesterday.

Finally, Ty is sitting at the dinner table independently.  I still can’t get over it.  We have a special harness chair that we bought for him so he could sit at the table at home, but he absolutely hates it and never gets off the couch unless it’s to sit on my lap.  I think it’s the influence of his cousins that had him sitting on his own, eating lunch with Aunt Theresa.  Unbelievable.  Brings tears to my eyes.

I will try to keep you posted every couple of days until we get home.  Thank you so much for loving Ty and for praying for him.