Showing posts from June, 2012

Ty can't run but maybe you can? Join our team!

As promised, here are the details on how you can join our team for the upcoming "Moving Towards a Cure" 5K in New York City on July 21st.  The SuperTy team is recruiting as many willing and able participants as possible.  The registration fee is minimal, and you can pledge whatever fundraising amount you wish so there little pressure in that aspect.  If you can't run the 5K, but still want to volunteer at the race, CLICK HERE to fill out a volunteer form. We would be so honored to have your help. A large percentage of the funds raised by the hosting charity - Miles for Hope - will go directly to Ty's neurosurgery team at Weill Cornell's "Children's Brain Tumor Project."  Their research specifically targets rare, pediatric brain tumors.  AT/RT (Ty's cancer) being one that they are looking at closely.  Lou and I feel very strongly about raising money for the Children's Brain Tumor Project because we live every day knowing that - statisticall

What a difference a day makes

I will work on the information for the upcoming events during Ty's oxygen therapy tomorrow morning (the only time I have to concentrate) but I just couldn't go to sleep before sharing a quick update about today.  Ty was great.  The best.  What a difference from yesterday.  When Ty feels good... when Ty is happy... it affects all of us.  Our entire family has been in a great mood today.  It was infectious and it was wonderful.  Here is my favorite picture from today.  I also have to share this picture from today, posted alongside a photo of Ty when he was a toddler.  He has the same exact ridiculous grin in both. Even his hair is similar :)  I love it so much, I could just EAT HIM!!  Goodnight.  XOXO.  More tomorrow. 


As you all know, Ty has a rare and aggressive brain cancer.  His pathology and course of treatment is most similar to what is called an Atypical Teratoid Rhabdoid Tumor (AT/RT). Ty's neurosurgery team at Weill Cornell Medical Center has been making inroads toward new therapies and genetic sequencing on children's brain tumors.  All of their research and trials are running under a new endeavor called The Children's Brain Tumor Project.  We are thrilled that they approached us with the idea of having Ty Louis Campbell represent the AT/RT community on behalf of their efforts toward finding a cure for his type of disease (and all childhood brain tumors).  Here is a page on their website that uses Ty's story as an example of this rare and aggressive type of cancer. PLEASE JOIN US In an effort to support the Children's Brain Tumor Project, we will be setting up teams to run in an upcoming 5K on July 21st i

Ty the Terrible Tyrant

Mr. Misery himself Yesterday was a terrible day with Ty.  He was so out of sorts the night before, I guess from returning home after such a long break, that he barely slept a wink.  He was happy and adorable all night long, he just had too much on his mind to settle into a nice slumber.  Which, of course, equates to no sleep for me and Lou, either.  Gavin has been waking up three times a night, too, but that's because he was used to sleeping in the bed with me on vacation and now he is back in the crib.  I think it will take him a week or so to get back to routine.  At least he goes back to sleep pretty easily (unlike his brother). We were supposed to resume oxygen therapy yesterday, but after such a sleepless night, and the OUTRAGEOUS thunderstorm that was underway when my pointless alarm went off, I decided to take one more day so Ty could catch up on his lost sleep with a nice afternoon nap.  Instead we returned today, and he was screaming and crying the whole way in.  I

Farewell for now...

Long Beach, June 23, 2012 We spent the last two weeks in an old, very dated but adorable little beach bungalow.  It had none of the luxuries the boys enjoy at home, like a pile of toys, a DVD player or cable TV, yet they had more fun over the past two weeks than they’ve had in a long time.  It feels like we spent months in Long Beach instead of two weeks.  We visited our old church several times, we spent time with people we love and miss so much, and we all had a lot of time at the ocean.  The beach is the most freeing place in the world.  God is everywhere you look and in the air you breathe.  It feels wonderful there.  I was sad to leave this morning on such a beautiful day. When we were driving away, Ty told me that he really loves our new home.  I told him I was so glad, but that we were leaving and going back to our real home now.  Our big house upstate with all of his toys and his super hero room.  He thought about that for a minute and then he said “I still like this hou

This picture is worth a thousand words

Peelin' Bedda yesterday afternoon.  Need I say more?  This kid is a rockstar. 

Vacation - Take Two

As unbelievable as this has been, we are grateful that we ended up in the hospital for just under 24 hours – this may be a record for us.  We were so anxious to leave today, that we were harassing the nurses about meds and discharge since morning to make sure we were out the door before Ty even had a chance to get comfortable.  It was a miserable hospital stay this time around simply because Ty whined a lot and only slept from 3 – 6AM, then again from 9 – 11AM.  That means I slept even less.  You should see me, I’m a train wreck – but at least I’m FREE!!!  Let vacation Part II begin! Lou made a joke on our way back from the hospital today. “Woo Hoo!  Partytime in Long Beach!  Just because one overzealous partygoer had to have his stomach pumped, doesn’t mean the party’s over for everyone.”  Tee hee.  At least we can laugh about this crazy life.  And switch gears on the drop of a dime.  Right now, we are trying to get back in vacation mode.  Ty is, too.  He is excited that we were abl

Are you f'ing KIDDING ME????

I'm sorry about the foul language, but there's really no other way to express how unbelievable this is right now.  Lou and I are waiting for Ty to get out of surgery.  As I mentioned, we had growing concern over his crossed eyes and his head pain.  Today we finally decided it was time to go into MSKCC for an exam and possibly another MRI.  Throughout the exam, it was more than obvious that his neuro-oncologist was concerned.  We weren't surprised.  Then, during the MRI the technicians stopped in the middle and told me they were just taking Ty out for a quick exam.  In walked a neuro-surgery resident with whom we are quite familiar.  He wanted to make sure Ty was responsive, and he asked me several questions about recent symptoms.  After the quick Q&A, he told me that they have already seen the first few images from Ty's MRI and that his ventricles were clearly enlarged.  They were concerned and would likely do surgery immediately to replace the shunt. POOR TY!! 

A bowl full of worry with whipped cream and a cherry

Our time in Long Beach is flying by.  We are squeezing in as many visits with friends and loved ones as possible, while Lou and I also try to take some time for ourselves to walk the boardwalk or eat some pizza uninterrupted.  It’s been a very nice break from everyday.  Ty has been doing well at the beach, too.  Much better than last year because he is willing to go out on the sand and spend some time there. We were able to prop him up in a chair and he seemed to enjoy just watching the waves.  We just have to be extremely careful about sun exposure because of the Accutane he is on.  Gavin, of course, couldn’t love it more.  These great days at the beach are the whipped cream and cherry sitting on top of our bowl full of worry. While we are so happy to be here, and Ty and Gavin are clearly enjoying themselves, this week has still been filled with ups and downs.  Ty has had head pain that required morphine three times.  His eyes are crossing on and off again.  He is very physicall

Beach days

After a great night with friends last night (Janice, thank you so much for hosting such a fun party – we all had such a great time, especially Ty), today was the perfect day to relax on the beach. My family came to Long Beach for a day at the beach, and it was wonderful. The weather is supposed to be nice again tomorrow, so Father’s Day should turn out to be another great day at the beach. It’s also been therapeutic for Ty. We do some stretching by playing with a fishing pole toy, and he helps me with the shovel when we fill the pail with sand. Little things like this help him to feel like he is still able to have fun. He was happy at the beach today, so Lou and I were happy, too. I met a stranger at the supermarket in Oceanside today. I was with the boys because we needed milk and a few things for lunch. She introduced herself to me and told me that she reads this blog to check up on Ty and that she can feel/relate to the love I have for my boys in my writing. Erica, I can’t tell

Feels like home

We arrived in Long Beach (NY) late Friday afternoon, and it has been a non-stop whirlwind ever since.  I’m so, so sorry for the delay in updates, but we had very limited internet access and every time I tried to post something, my computer would shut down.  I’m happy to finally be back online right now, but please don’t be alarmed if this happens again while we are away from home.  The connectivity is just very spotty and it’s driving me crazy.  We’ve been having a great time in our old neighborhood – it really feels like we are back home.  We are visiting with friends and family, stopping into our favorite food spots and stores, and saying hello to all of the familiar faces that we miss so much.  Everyone has been so warm, it feels like we never even left.   All-in-all, Ty has been doing great.  He is so happy to be here and he has been willing to do a lot of things that are normally out of his element like taking long walks in the stroller and even going on the sand for a dece

Another happy day

We had another great day today.  Ty and I got to sleep in an extra hour and we had a really nice time at Blythedale.  He was happy all day.  I even treated him to Candy World on the way home because I was enjoying him so much.  When we were driving through the parking lot of the Danbury mall, Ty noticed that there is a huge carnival set up.  He told me he wants to go and that we need to bring his tickets (yes, we are still carrying around the raffle tickets from the fundraiser, apparently he thinks they are interchangeable with any carnival).  Everything changes when Ty is feeling good.  When he has pain, when he whines through the day... I share those same terrible feelings all day.  I carry the same aches and pains, depression and overall crankiness with me.  The whole family does.  But days like today can make us all feel so refreshed, so happy and so grateful.  Today was a good day.  Ty's speech therapist gave him some cherry and grape flavored popsicle sticks to take home


I was leaning in close to Ty, kissing his cheeks and eating his chin when he whispered to me with a smile, "my legs disappeared." Then he kinda giggled.  I joked, "Huh? When? Where did they go?"  Then he looked at me and his face turned so sad.  "I don't know," he answered in a low voice. It took a lot not to tear up when that happened, but I held it together and I told Ty that his legs were still right there, and that slowly they would come back to him.  He seemed to accept that.  My poor baby. Despite that conversation, Ty was incredible today.  Like a completely different little boy compared to yesterday.  He looked amazing (everyone was stopping me to tell me so).  He was very happy.  He didn't wince or complain about pain; not even once.  He had his 30th treatment in the hyperbaric oxygen chamber and now gets to take two weeks off before returning for another 30 - this will be a much needed break from the early morning routine for both of

No rain on our parade

Yesterday was a huge, multi-vendor fundraiser for Ty’s Fund and Alex’s Lemonade Stand (Melissa, how can we thank you enough?).  Dozens of our friends and neighbors, many who we never even met, joined together to help the amazing DeVitto family to set up and run this amazing event.  Ty is still talking about how much fun it was!  They had a bouncy house where Gavin went wild, arts and crafts, amazing raffles, pizza, baked goods, games and over a dozen vendors selling wonderful products to support the cause.  Lou and I are sending out tremendous thanks to the DeVitto family for opening their beautiful home to hundreds of people on Ty’s behalf.  And, thank you to the dozens of people and kids who volunteered to help out.  Finally, thanks to all those in attendance, and to all those who donated products for the raffles… your generosity is beautiful and humbling.  Yesterday was such a testament to just how many people really care about Ty and all the little warriors fighting this terribl

Back on pain medicine

We were so excited for the weekend, but then Ty started complaining of head pain again.  By yesterday afternoon, after an unsuccessful attempt to manage his pain with Tylenol, we had to resort back to using morphine.  It made Ty feel so much better, but it broke our hearts as parents.  Why can't he just catch a break?  It doesn't really make sense that he would have an increase in head pain and we are very worried - and just so sad for him.   It's just not fair! Ty was weened off narcotics for almost two weeks with very few complaints about head pain.  When we gave it to him yesterday, he ended up vomiting twice afterward.  Lou and I think it was just a side effect of the medicine since it hasn't happened again, but it broke my heart when Ty said "well, I guess I can't eat strawberries anymore."  I tried to explain that it was the medicine, not the strawberries, but he refused to listen to that reasoning.  I know Ty and it will be months upon months befo