Friday, August 31, 2012

Ty can't run - Maybe you can? PART 2

Our next run to fund childhood brain tumor research is set for October 13th in Prospect Park, Brooklyn.  It is a 10K that we are doing along with Elizabeth's Hope (www.elizabethshope.com) in honor of Ty and Elizabeth Minter, a beautiful girl who lost her battle to rare pediatric brain tumors just months ago.  I have detailed instructions on how to join Ty's team and begin your fundraising efforts.  Please email us at tylouiscampbell@gmail.com and I will share those details with you. 

As always, there is no minimum fundraising requirement and we welcome everyone and anyone to join us.  The more the better!  We had such an impressive group at the 5K in July and we would love to have even more this time around! 

September is Childhood Cancer Awareness month.  A perfect time to do something for the cause! 

WATCH THIS

I am so inspired by this video that was posted by another Cancer Mom yesterday.  This man's cause is Cystic Fibrosis, ours is childhood cancer, but regardless - the message is the same.  People who raise funds through athletic events aren't just helping the cause in a tremendous way, the cause is also helping them to push themselves to new extremes, to grow as people and to make a difference in the world.  I was moved to tears. 

In addition to the 10K in October, Ty will be honored at a St. Baldrick's head-shaving event in Rockaway Beach on September 15th.  We will all be there, and would love to see you there, too! 

Saturday, September 15th
1:30 PM (family friendly event)
$10 admission per person, $20 per family
The Bungalow Restaurant & Bar
377 Beach 92nd St, Rockaway Park 11693

The "Hope is in the (H)air" event was created by Mighty Mikey's family.  Mikey is an adorable little boy just like Ty, who has been fighting brain and spinal tumors for four years.  He is a courageous six year old who loves Sesame Street and he will be joining his sister in shaving/cutting his hair to raise money for the cause.  We hope to see you there!


photo credit: goldisthenewpink.net

Tuesday, August 28, 2012

Kicking Cancer's Butt

Look at this incredible video of Ty kicking the seat in front of him in my car.  This is from yesterday afternoon.  He is finally feeling better and making some great progress!  This afternoon I convinced him to come in the pool with me again, and he was moving his arms and legs so much.  I saw a lot of his stomach muscles working hard, too.  I am so proud. 

CLICK HERE TO SEE HIM IN ACTION

September is Childhood Cancer Awareness month.  You'll be hearing a lot from me starting Saturday.  Please help us to spread awareness. 

Photo Credit: People Against Childhood Cancer

Monday, August 27, 2012

Healing hurts

I know I have said that this whole journey has been such a roller coaster, but it's been quite a while since we had such tremendous ups and downs over the course of just a few days.  I guess it's just a reminder to us that we are still on board with plenty of dips, turns and loop-dee-loops ahead.

I felt like I was on the crazy train instead of a roller coaster this time, though.  Lack of sleep makes me lose my mind almost as bad as Ty lost his on Tuesday night/Wednesday morning.  I waited to share any updates because I didn't want to worry you all!  Today I am fine.  Yesterday was a very good day, too.  We are getting back to normal in so many ways.  I will quickly retrace the course of the past few days to loop you in on Ty's progress.

On Wednesday I was up and caring for Ty and Gavin on about 45 minutes of solid sleep.  Ty had terrible head pain throughout the entire day... and it had been getting progressively worse over the course of two weeks.  I noticed he wasn't moving his arms and legs like he used to, and when I tried to test his strength it seemed that he lost so much of the ability he gained back over the summer.  He was barely moving his hands latterally, when before he was lifting them up as high as his face.  He wasn't responding with his legs to any of my requests.  I felt some muscle activation here and there, but it was so little compared to what he was able to do just days/weeks prior.  I managed to remain calm about it, but it was as if all of my internal organs were twisted like pretzels, and my mind was racing trying to figure out what could be happening besides tumor growth. It often crossed my mind that maybe we stopped the hyperbaric oxygen therapy too soon, but then I reassured myself that he began having bouts of head pain before he finished his course of treatment.  We had that scan to prove that it couldn't be shunt related and there weren't any spontaneous brain bleeds.  My favorite theory is that Ty was suffering a flare-up that is just par for the course as he heals. I decided to stick to that pleasant theory, especially knowing how much he has improved since yesterday. 

Lou was away at a seminar in Boston from Thursday to Sunday and if it wasn't for my in-laws, I would have been completely lost in my worry without him here.  Thankfully, my amazing sister-in-law, Debi, took Gavin for hours on end so he could play outside and enjoy his cousins while I cared for Ty and gave him the attention he has been needing.  My mother-in-law took shifts, too, and at night my family stuck around to watch movies, do our nails and sleep with Gavin so I wouldn't have to leave Ty in the middle of the night to tend to him (Gavin wakes up several times a night ever since we moved him to a bed).  It was such a blessing, and I am so grateful. 

Friday morning Ty had terrible head pain that lasted about an hour.  I resisted giving him morphine because I didn't want to alter his mental state, especially after all he went through after our sleepless night (it took a long time for him to get back to himself - he was so irratable and emotional for two days following the episode).  Luckily, that morning was the worst in the past four days.  He was better in the afternoon and had a pretty pleasant Friday.  Then Saturday he was doing really good, I noticed he had more energy and more of an appetite.  He was moving a little more.  Then, yesterday it was like he was back to his old self.  Lou was home and Ty was showing off his arm lifts all day long.  He even went for a walk around the neighborhood and a swim in the pool for about an hour, which was only the second time all summer and the longest he stayed in the water.  It was great therapy for him.  "Splashing" Daddy and kicking... we had so much fun.   Yesterday was one of the best days we've had in a very long time.

So, I believe he is healing and sometimes healing hurts.  He is doing well and that means we are doing well.  Ty's health and mood pretty much dictates the health and the mood of the entire household and for now, all is good.  Thank you all so much for your concern and your support. 

With all of our love, the Campbell family. 

This morning is a lot of the same.  He is physically strong and he isn't suffering headaches. 



Wednesday, August 22, 2012

6:15 a.m.  That's what time he finally fell asleep.  Gavin up since 7.  How will Lou and I get through the day!?

Up all night

We had a good day at the hospital today.  It was very long, as usual, but Ty was feeling good - and he had a bed today which always helps because he is just that much more comfortable.

In response to his increasing head pain, the team ordered a quick CT to make sure his ventricles aren't enlarged and to look for any potential sides of a brain bleed.  The scan looked fine, so that's good, but of course it leaves us wondering why.   It's still concerning to all of us.  We are going to increase his neurontin to see if that helps at all (especially because Ty is experiencing pain in his feet which is likely neuropathic).  We may also end up pushing up his next scheduled MRI if it worsens.  Right now he is scheduled for early September, but we will likely do it sooner.

The real update for today lies in the fact that Ty and I are still awake, sitting on the couch at 2:30 in the morning.  He hasn't slept a wink and he is hallucinating.  Let me explain why. 

We had a consultation with the integrative medicine doctor at Sloan Kettering today.  We wanted to discuss with him the various herbal therapies, diets and supplements that we have read about over the past year to get a better understanding of what we can and cannot try with Ty.  The large majority of the herbs and supplements are contra indicative of his current chemotherapy regimen so they are out of the question (meaning, they may work well to keep his "good" cells strong, but they are also good for cancer cells and they can increase or decrease the effect of his current medications).  But we did walk away with some new supplements we will add to his shakes, and we have a better understanding of what we should and should not be experimenting with.  If you are interested, click here for a great resource on all sorts of herbs, vitamins and supplements and how they might interact with various treatment protocols. 

During this conversation, we discussed alternative options to help Ty sleep at night because he is just so restless.  We tried something new tonight because it is supposed to be safer, but it has had the complete opposite effect - I haven't seen him this restless in ages.  We were warned it was a possibility, like the kids who can't take Benadryl because it makes them wired, but never imagined it could be as bad as this! Yikes!  Poor Ty is out of his mind.  He has been WIDE AWAKE for hours.  He is so confused, the poor little guy, asking me things like "where are we?" and "where are we gonna go?" for the past 7 hours.  He is hallucinating, too, which has me so upset.  He told me "Mama!  Look!  There are things jumping on that picture!" and he also thought he saw ants on his grapes.  He tells me he wants to lay down when he is already laying down, and that he wants to put his arms around me when they already are.  At least he is mostly good humored about all of this.  I, on the other hand, might lose my mind soon.  Of course, this medication will be added to the "do not use - EVER" list. 

No news is good news on the pain front - at least for now.  I would write more, but I am just too tired to think :)  More tomorrow.  Thank you for always loving Ty.  XOXO and goodnight.  Fingers crossed for at least three solid hours of sleep tonight!

Monday, August 20, 2012

Pain, pain go away

Vacation is certainly over.  Ty is suffering.  He has been experiencing headaches for several weeks now, in fact I discussed it with his doctor at clinic two weeks ago, but it has been increasing in frequency and severity.  I am so sad and so sorry for him.  He cried so much today.  Sometimes he just screams for me from across the room and there's nothing I can do.  The only blessing in all of this is that they don't tend to last more than two minutes or so... but during those minutes time stands still.

I try so hard to heal him.  I put my lips to his head and I imagine transferring all of his pain so I can suffer through the headache.  It sounds silly, but I try to imagine sending healing energy and light from my forehead to his.  I whisper to him and I kiss him over and over and over again as I run my fingers through his hair as it begins to sweat from the pain.  I even starting softly singing the stupid song "pain, pain go away" instead of "rain, rain go away" because I thought it might make him smile.  It actually did :)  He thinks it's so funny if I pretend I don't know when I'm doing something wrong like that.  It never fails.  When Ty is sad, all it takes is a silly joke to turn him around and bring out his sparkling smile.  His belly laughs are infectious. 


I don't know what all of this means.  I don't think his shunt is causing any of this pain, and I certainly don't think it's cancer.  But I do think it's bullsh*t and I'm having a hard time expressing my feelings tonight.  I have been depressed and it's starting to take a toll.  His headaches bring down his energy and hinder his physical strength so any improvement in his arms and legs is at a standstill.  I am anxious because I worry that every day without improvement is lost opportunity.  I am making myself a little crazy.

Tomorrow we will be back at Sloan Kettering for his bi-weekly infusion for Avastin.  I'm sure we will discuss his increased head pain in detail, and debate on whether or not a scan is warranted.  We also have an appointment with a doctor of integrative medicine to discuss vitamins and supplements that we may be able to add to Ty's diet safely (he is a doctor at MSKCC so he is best suited to advise us on any contraindications while he is undergoing chemotherapy).  Tomorrow Ty also begins another 21-day cycle of Cytoxin and Accutane.  Two years this kid has been pumped with poison.  I simply hate it. 

But, on that same note it has been one whole year without evidence of disease.  So... I guess I can shout that in the face of cancer... HA!!!!!!!!!!!!! 

I should try and get some sleep.  Or, at least lay in bed until tomorrow.  Even after all this time, I spend my nights staring at his perfect sleeping face in complete and utter disbelief.  This just can't be real.  It just can't be happening to him... not to Ty. 

Wednesday, August 15, 2012

Ty the fisherman

“Celebrating” the second anniversary of Ty’s diagnosis has been very hard.  It hasn’t been much of a celebration at all, rather, it is an exercise in coming to terms and accepting that two years later we are in a more difficult place than we were the same time last year, and we have a very, very long road ahead. 

Being at the lake for our annual family trip has been a beautiful getaway, but we can’t escape the fact that Ty is unable to participate in 95% of the activities that his brother and cousins are enjoying.  They run around the house like crazy.  They go tubing and some of them tried waterskiing.  Today they are at an amusement park with waterslides while Ty and Gavin are stuck indoors watching TV.   Ty gets upset and doesn’t last very long if we bring him outside, and on the boat he usually cries and complains that it’s “too bumpy.”

Last year when we were here I remember thinking how hard it was because Ty was recovering from so much trauma (he had just put his radiation treatments behind him).  But, he also had a couple of beautiful “firsts” during that vacation including sitting up at the kitchen table without any support, and taking his first few steps in almost a year.  I imagined that one year later, Ty would be back on his feet and able to enjoy the vacation at the lake even more.  That this year, maybe he could build sandcastles with his cousins and spend the days swimming in the lake.  The reality of his condition is making this vacation one that is filled with highs and lows, but Lou and I are still enjoying it very much.  Just being with my family without anything to do but talk, eat and drink has been therapeutic for all of us.  Ty is having a good time, and that is most important. 

Two nights ago, the sun was setting and my brother-in-law was getting all of the kids ready to go fishing on the boat.  Ty was whining to my mother  “I’m bored.”  My mom called for me from the other room and said, “Cindy, is there something that Ty can do, too?  He’s complaining that he’s bored.”  When I caught a glance, she was hiding tears in her eyes.  I didn’t know how it would turn out, but I asked him anyway… “do you want to go fishing with your cousins, Ty?”  He answered with a giggling, resounding “YES.”  Oh boy, what did I do?  How are we gonna pull this off?  Lou was great with him.  My Dad got him a fishing pole, Lou got him into a life vest without much complaint, and we all took some pictures as we sort-of staged a fishing expedition off the boat for Ty. 



While his pole was in the water, my niece said that she saw a fish nearby.  She was telling Ty to just be patient, because he could catch it.  I thought she was making it up, but within two minutes I heard Lou calling, “TY CAUGHT A FISH!  TY CAUGHT A FISH!”  I can’t make this stuff up.  I swear, God really pulls in some amazing favors when I am feeling my most sad or anxious.  No one else caught a fish that night.  No one but Ty.  Sure, it was a small one, small like Ty, and we threw it back with the biggest smile.  Goodbye little fish, go live a great life, thank you for visiting with us and making Ty so happy.

If you’re wondering what Gavin has been up to, don’t worry.  We would never leave him out.  He was busy driving the boat :)


We don’t have an internet connection at the lakehouse, so I am very disconnected.  I wanted to share this post with you all, though, so you know all is well.  I will be sure to share more photos this weekend.  Thank you for all of the encouraging posts you shared after I posted his two-year video.  Thank you for loving Ty so much.  We would all be lost without you. 

Saturday, August 11, 2012

This is our story

August 11, 2012.  How can it be two years later?  Two whole years!  And how much has happened in those two years, my God.  I have been keeping track of Ty's journey in a document saved on my computer.  It includes a timeline of events and almost an abridged version of this blog.  The one thing I don't think I've ever included here, though (in such detail, anyway) is what I wrote about the day Ty was diagnosed.  It was exactly two years ago from today and I just want to reflect.  I realize it may be too long to read through - but at the very least please scroll down and view the compilation video I created via YouTube.  You can't watch it from a mobile device (I think because of the rights on the song) so please, please, please watch from your laptop or desktop when you can. And feel free to share!  I love it and I hope you do too.  It is my love song to the greatest love of my life.  My Ty. 

Ty was a rambunctious toddler with curly blonde hair and an infectious smile.  He didn’t have any developmental delays, medical issues or neurological deficits prior to his diagnosis.  However, Ty was never a good sleeper since the day he was born.  He woke up frequently throughout the night crying and whining, but we could always soothe him back to sleep.  We discussed this with his pediatrician on several occasions and we even had him scheduled for a sleep study for some time in late August 2010.  After a week straight of increasingly sleepless nights earlier that month, we decided to instead take him to the emergency room for imaging.   He was crying and whining all through the night but he couldn’t tell us why and we just couldn’t stand it anymore.

Ty didn’t have any neurological symptoms.  The doctor’s at Cohen’s Children’s Hospital (Long Island, NY) didn’t seem very concerned, but they reassured us that it was a good idea to get an MRI just in case.  Since his case wasn’t urgent, we had to stay inpatient for a second night because we were waiting for MRI/anesthesia availability.  Ty slept beautifully at the hospital.  Not even a whimper all night.   We laughed the next morning and couldn’t wait to get the MRI over with so we could go home looking like silly, worried parents.  At least we would be at peace knowing that he was fine. 

We packed up our things and couldn’t wait to go home.  Lou was standing in the hallway when he saw the neurology team heading down toward our room.  “Is it good?  Can we go?” he asked with a smile.  “No?”  With that he turned to look at me in slow motion and the walls began the melt.  The sounds in the room became muffled.  The world around us was falling to pieces. 


The devil was unveiled on a computer screen, right there in front of us.  The MRI image showed Ty’s profile with a tumor, about one inch in diameter, growing from his clivis and pushing against his brainstem.   No wonder he couldn’t sleep.  Lying down increased the pressure on his brainstem and was causing intermittent head pain. 

The following week was a blur.  We traveled to speak with several of the nation’s best pediatric neuro-surgeons.  We talked about the different approaches which ranged from cutting through his upper jaw (also known as a La Forte) to trying an endoscopic approach through his nose and mouth.  We spoke to strangers who had children going through similar surgeries.  We answered every phone call and followed through on countless recommendations (…”you must talk to this doctor… you must look into this facility… you must feed him apricot seeds…etc.”). 

During this short week at home, Ty began to fall apart before our eyes.  It was as if the tumor knew that the gig was up and decided to come out of hiding.  Ty’s speech began to slur.  He lost the ability to drink from a straw, then from a sippy cup.  His head pain was becoming unbearable and he started suffering during the daytime, too.  We went home with a smiling toddler and were told we had plenty of time to decide about surgery.  Instead we had to rush him into surgery with Dr. Steve Schneider at Cohen’s Children’s Hospital just days later.  Dr. Schneider is very well-known for endoscopic brain surgery in children and we were confident that this would be the best approach for Ty. 

And so our journey began. We hope you will continue to follow his roller coaster journey here on
www.superty.org and like him on Facebook at www.facebook.com/thelittlefighter.  Without the support of friends and strangers, we believe he would not have come this far.  A fighter he is, indeed. 

FOR YOU I BLEED MYSELF DRY
Ty, my love, that statement couldn't be more true.  Anything for you.  You are my everything.  Here is my love song to you on your two year anniversary.  XOXO. I love you big, huge, giant much.

CLICK HERE TO LAUNCH VIDEO

Or, you may be able to play it straight from here.  I prefer you try the YouTube link because it keeps track of how many times a video is viewed, but I know it can be troublesome (and vice versa as it pertains to playing videos straight from Blogger). 




Thursday, August 9, 2012

Last Day!

Ty entering the chamber for the last time

I just kissed Ty goodbye as he was rolled into the hyperbaric oxygen chamber for the last time.  I am so happy.  He did it!  Look at the smile on his face.  Oh, and the haircut, too!  So handsome.  I'm a very proud momma. 


Of course, he started to cry some crocodile tears as game time approached.  "I scared," he whined.  I just smiled and said, "C'mon, Ty!  After sixty times, you know the drill.  Everything is going to be fine."  I can't believe we have been doing this since his very first treatment on April 19th. As I was racing to the hospital this morning, late as usual, I was imagining how I would probably get pulled over for speeding.  After all this time, I expected it on our last day - especially knowing how often "Murphy's Law" tends to interrupt my daily life.  Alas, I was lucky for a change!  We arrived on time, no speeding tickets.  It was actually a pleasant commute this morning :)

I stop at a gas station for coffee every single day on my way to Phelps.  One time the man at the register - who never takes a day off - complimented me on my smile in the morning.  He said something along the lines of how everyone is always so grumpy in the morning, but I always come in with a positive energy.  That came as an absolute shock to me.  "Really?"  I said.  "Because my four-year-old son is waiting in the car; we are on our way to the hospital.  We do this every day for treatment that we hope will help heal some of the late effects he's had after radiation treatment for his brain cancer.  I don't feel very positive, but I'm glad I can fake it." 

The man told me that I am not faking it, that it is a natural gift I have. I don't take compliments well, and am embarrassed to share it here because I feel very much the opposite.  Anyway, my point of the story is this.... somehow, when I picked up my coffee this morning, that same man knew something was different about today.  We rarely exchange much more than "good morning, how are you" but today, he reached out unexpectedly and took my hand.  "How are you?" he asked in his adorable accent.  When I answered "good, thank you," he didn't let go of my hand and I felt like he was searching my eyes for more.  So... I gladly explained how today is Ty's last treatment and that I hope I won't be seeing him very often anymore.  He was genuinely so happy.  So was the girl who is always working the register next to him.  We didn't have to exchange many words.  I promised I would come back to say hello now and then, and he wished us all the best.  It's always so strange to me when a person can get a good feeling, a real understanding, from another complete stranger.  What an amazing world we live in, filled with so much peace and beauty.  I'm grateful for the warm and fuzzy our short exchange gave me this morning. 

Of course, it's not easy for me to maintain that perspective.  There's certainly an overabundance of evil and wrongdoings to counterbalance the good - like the cancer that attacks our innocent children.  But Ty's cancer is losing.  It has only made my love stronger, my heart bigger and set my fighting heart ablaze with something fierce. 

This exact time of day on August 9th, 2010 - two years ago to the minute - Lou and I were sitting in the Emergency Department of Cohen's Children's Hospital, watching Ty pass every neurological exam and answering the same questions over and over and over again.  We hadn't slept at all the night before and we spent most of the night on the phone with different doctor's and wondering if we should go to the hospital.  Early that morning, once we had someone to watch Gavin, we headed over with no idea what was in store for us.  I remember those first days in the hospital SO well.  I never imagined that hospital stays with our little boy would become part of our regular life over the next two years.  On Saturday, August 11th, it will be the two year anniversary of Ty's diagnosis.  We are going to run away that day.  We're hitting the road bright and early to take a family vacation.  As Ty likes to say... "EAT MY DUST!" We are outta here. 

Tuesday, August 7, 2012

Loooong Monday

Yesterday was a long and boring day.  I will try not to bore you with too many details, but since we spent the majority of the day at the hospital after oxygen for a regular check-up and infusion, I think it's time to share some medical updates.

First, Ty is almost done with oxygen therapy.  Thursday is our last day.  He was SO upset in the chamber yesterday, he cried for me almost the entire time (he is in for two hours every morning).  It makes me sad that it never got any easier for him.  In fact, he seems to be fighting me more and more as treatment is coming to an end - which I take as a good sign because he must be feeling better if he can put up such a fight!  You should have heard him screaming as they were closing the door this morning.  Yelling, "Take me back outside!!" over and over again.  This is not the boy who barely had the strength to whisper when we began.  I have the team here at Phelps Memorial Hospital to thank for that.  For not being afraid to take on a very unstable four-year-old and help to make him better. 

Second, Ty's bloodwork is still perfect on this daily chemo regimen.  He also showed some pretty decent strength in his arms and legs when he tried to fight us at the time of accessing and deaccessing his port.  He was angry and it showed!  As much as I hate the needles, I was happy to see him so trying so hard to move.  He is definitely our little fighter.  Saturday will mark two years since his diagnosis.  I can't get over how much he's grown and how much our lives have changed. 

What else?  His surgical site is healing well from the latest shunt revision.  It looks very red and irritated, but no signs of infection and all of the stitches are gone.  The shunt seems to be working just fine.  The team believes his intermittent headpain is largely due to muscle pain in his neck more than intracranial pressure - although occassional pressure waves are not ruled out and likely par for the course when it comes to Ty.  All-in-all, it was a good day because Ty is doing well. 

The actual hospital experience was grueling (we were there 5 hours for 1/2 hour infusion), but some days are just like that.  The ninth floor, sadly, is very busy at times.  It shouldn't be, but it is bustling.  All those little baldies and their families.  Sometimes I catch the eyes of a new cancer mom and I think, "that was me two years ago, staring at the wall wondering how this happened to me, to my baby.  She will be okay, I hope."  When I was the new one on the floor, I kinda hated the veteran moms.  Not because they deserved my angst - just the opposite - but because I didn't want to be one of them.  I was resentful at the way they navigated the toy room, knowing where everything is.  How they knew lunch is delivered in the side room on Wednesday's and you have to be first in line if you want a tuna sandwich.  How they wore their bracelets and their hope t-shirts.  I wanted to run away from it all.  Now I embrace it because I was forced to, and can barely remember life before cancer.  I can never try to hide from such a painful reality again.  Instead, I will keep doing what I can to change it by sharing Ty's story. 

Yesterday I had a casual conversation with a dad about the various types of positioners he purchased so his disabled son can sit upright at home.  Last week I spotted a dad that we shared a room with a year ago and I knew immediately that it wasn't good news.  Relapse.  I'm so sorry.  Can I get you a tuna sandwich?  The ninth floor looks like rainbows and butterflies - but it is pure hell on earth.  And it is our home away from home.  I am just so grateful for the amazing nurses and doctors who have the courage to walk those halls alongside us.  They are the greatest caregivers in the world and they are helping families like mine fight against terrible odds, guns blaring, laughing like lunatics as we shoot at the sky. 
 
Riding the elevator to the 9th floor

Love to you all.  XOXOXO.

Sunday, August 5, 2012

Go Team GO!!!

Pan-Mass
186 miles on a bike in two days.  That's how Team SuperTy is spending the weekend, all because of him.  I can't even imagine.
 
You may recall that last year Lou's sister, Debi, trained alongside him to run the NYC marathon for Fred's Team - raising thousands of dollars for pediatric cancer research.  This year, she decided to push herself, yet again, but on a bicycle.  She is joined by two great friends of ours, Chris Larkin and John Dimase.  Lou and I (and our entire family) are just so thankful.  Go Team Go!  Here is a post from Debi's facebook yesterday.  She truly amazes me.  Be inspired:
 
So today is the big day! John Dimase, Chris Larkin and I will begin our Pan Mass Challenge in Wellesley, MA and bicycle 84 miles to Bourne! We will shower in trailers and sleep in a tent! I love an adventure and I'm just so excited! It's such an inspiration to be surrounded by so many people who want to make a difference and put an end to Cancer! I RIDE FOR TY, because I can! Today while I struggle & sweat he will be my inspiration! My Aunt Connie who fought the fight and lost the battle, will be with me today as I ride like the wind! Too many suffer! Frank Bartalomao is a friend who is presently battling this disgusting disease, he will be in my thoughts today, too!


Go Team Go - WE LOVE YOU!
PMC donates 100% of every dollar raised to the Dana Farber Cancer Institute.  Money raised for Team SuperTy is tagged to specifically aid pediatric cancer research.  This year, the ride will raise $36 million, which is more money than any other athletic event in the country. That's incredible beyond words.  It gives me so much hope for new treatments that will save Ty and so many others like him.  Donations will be accepted through the months of August.  If you can support Team SuperTy, go to www.pmc.org, click "donate" and search for Team SuperTy.org.  THANK YOU.

Swim Across America - Team Ty

A couple of weeks ago, another amazing group of people created a team to swim in the Long Island Sound on behalf of Ty.  Team Ty raised thousands of dollars for cancer research at Memorial Sloan Kettering, and I couldn't be happier that they asked to dedicate this year's swim to our family.  I am humbled and in awe of how many beautiful people fill this world.  Their actions move mountains.  I am so lucky to know so many loving, generous people, and to be touched by so much kindness from others I've never even met. 

Swim Across America is an inspiring event.  I found this video on YouTube and it brings me to tears.  Thank you, Team Ty, for loving my son and doing so much for the cause.  I hope to meet you all some day.  Maybe to swim alongside you in the future :)


Carnival Fun
The Pawling Fire Department hosted a carnival this week, and for those of you who have spoken to Ty in the past month or so, you know that going to a carnival (in fact, having one in his own house for his birthday) is what he dreams of.  So, this was a very big event for the Campbell Family.  Ty rode on the roller coaster (the baby one, of course), he caught a shark in the fishing game, he popped a balloon with a dart and he came oh soo close to beating his cousin in the water gun race.  We came home with piles of totally unnecessary stuffed animals and bellies full of sausage and peppers, funnel cake and cotton candy. 

Gavin driving his Hot Rod

My beautiful nieces spent the week with us, and they filled our house with so much laughter.  They went home to Long Island yesterday and I miss them already.  Before leaving, though, we gave them a nice, queasy stomach after riding this crazy, upside-down ride that I wouldn't step foot on. 


All-in-all, things have been great.  With the exception of some occasional head pain. which makes me so mad (argh - Ty should be free of headaches for the rest of his life!), Ty is otherwise doing well.  He is getting stronger and he is so proud of any new movement.  He even went in the pool with me and his cousin Kayla the other day, which was incredible.  It was great for his physical therapy and he was smiling the entire time (any other time he went in the pool he hated it and cried the entire time).  Hopefully he will be doing more of that before the summer is over.  I'm sick of seeing him sitting on that couch watching TV show after TV show.  It's so hard to find things for him to do! 

Speaking of which, today we are getting out of the house as a family.  Not sure where we're going, but we are going to get in the car and enjoy this beautiful day.  XOXO to all. 

Thursday, August 2, 2012

During our morning drive, I couldn't stop watching Ty through the rear view mirror. He is just so beautiful.  He looks so good, too!  I was picturing the baby that he was before cancer, and was in awe at the big, almost-five-year-old boy in the reflection today.  I am the luckiest person alive because I am his mommy.  He is the love of my life.  I could stare at him for hours and hours and hours.  Please pray that he stays with us, that he remains cancer-free forever and that he fully recovers from all the brain trauma he has suffered.  Like I said the other day, the sky is the limit!

As thankful as I am to have him, I am also so sad all the time.  Always so sad because of how unfair all of this is.  Our whole family has been robbed of so much, even Gavin.

Lou and I wanted to have our babies close together so that they would grow up close.  We wanted them to be the best of friends and to enjoy growing up together.  These pictures were taken in the Spring of 2010.  When life was perfect, but I didn't realize it. 




I don't think Gavin even remembers that his brother was ever able to run around and play with him. He doesn't remember all the fun they had. All he knows is that Ty cries a lot. That Ty has a lot of appointments so his Mommy will be gone all day. That Ty gets a lot of attention because he's always sick. That Ty sits on the couch and watches TV all day, every day, because he can't do much else. When he wants some extra attention, sometimes Gavin takes one of Ty's buckets and pretends he is throwing up. That is SO NOT NORMAL and today I am upset about it.  This was not supposed to be our life. 

I don't want to complain.  That's not why I created this website.  Instead, I should be sharing updates on Ty's journey, so here is the best one I can think of (and it's a really good one!):  Since March, Ty has been so weak that his voice was very low.  He simply didn't have the strength to speak any louder than a high-pitched whisper.  It was also very difficult to understand him because of the very low muscle tone and decreased oral mobility/coordination.  We used to get so upset with one another whenever I was driving somewhere because he would try to tell me something but I couldn't understand (especially because I couldn't turn around to read his lips).  I would beg him to stop talking to me until we got to where we needed to go be, and that would hurt his feelings so much.  It was torture.

Over the past couple of weeks, however, he has improved in leaps and bounds.  We have the cutest conversations during our commute, and I don't need to see his lips moving to understand what he is saying.  We play a lot of "I Spy" and he tells me funny stories.  I especially love it when he tries to sing again :)  He is very slow with the lyrics, but he is proud and he sings "twinkle twinkle little star" as loud as any other preschooler.  It's the most beautiful sound in the world. 

Thank you, everyone, for all of your positive thoughts and prayers.  Ty is getting "bedda" by the grace of God and because of all of you.  XOXO.