Thursday, June 28, 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 - statistically - it is likely Ty's cancer will return.  We pray every second of every day for more effective treatment options (with less brutal side effects) should that day ever come - which it won't. 

Here is the information on how to join Team SuperTy as a runner:
  • Visit http://www.braintumorevents.org/newyorkcity2012
  • On the upper left hand side, there is a gray button that reads Register Here. Click it.
  • Scroll down on the waiver and hit "I agree"
  • On the next page, select "Join a team" then select "SuperTy".  Hit "Continue"
  • Fill out the form and create an account with a unique username and password
  • Complete payment for the $25 registration fee (and any kick-off donation you want to make) by including a credit card and submitting for payment
  • You are all set!  Now you can edit your page, add photos or videos and start an email campaign to solicit donations.  It is all pretty easy to navigate.

If you can't attend the event but still wish to make a donation to our team:
  • Visit http://www.braintumorevents.org/newyorkcity2012
  • On the upper left hand side, there is a red button that reads Donate to Participant. Click it.
  • Enter "Cindy Campbell" in the search fields (or any of our team members, right now I'm the only one registered.
  • Click on my name when it appears (Pawling, NY)
  • When my page comes up, you will see a button on the upper right hand side that reads "Give Now".  Click it and follow the prompts from there
  • If you don't wish to donate online, there will be a link to print out a form as well. 

Now that I've posted the information, I am excited to see who joins us!  I know my sister's family will be running alongside us (even my nephews who are only 7 and 8).  I also heard from the very talented Lauren Brill and her cousin Becky Welch - both of whom are interested in running for Ty.  Lauren created http://www.doubtnoone.com/ to tell the stories of the most inspiring athletes you'll ever see.  Her videos are touching and heartfelt.  Thank you Lauren and Becky!!  Bring your friends :)

CLICK HERE to watch an amazing piece she produced for Ty. 


Ty had another great day today.  He was so happy, which means everyone was so happy.  I have so many cute stories to share, but my eyes won't allow me to look at the screen anymore.  Soon I will add information about the 10K in October, as well.  Thank you so much for all of your support!



Wednesday, June 27, 2012

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. 

SAVE THE DATES


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.  http://www.cornellneurosurgery.org/ways_to_give/atrt.html

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 in Riverside Park (Manhattan)... and then another 10K on October 13th in Prospect Park (Brooklyn).  We welcome each and every one of you to join us.  PLEASE.  These races are open to all ages, they are not very competitive (meaning if you need to walk some, you certainly can), you can set your own fundraising goals so that you are comfortable with whatever amount you want to pledge, and the registration fees are minimal ($25 or so). If you can't run with our team, we are also recruiting volunteers to help out with other activies on that day. 

We hope you will recruit your friends, family and neighbors and join us!  SuperTy himself will be there, and the cause is one that can help save his life.  I will post all of the detailed instructions by tomorrow, but wanted to make everyone aware of these planned activities in the meantime because they are approaching so quickly!!


Tuesday, June 26, 2012

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 hope he settled down okay once in the chamber.  I feel so bad.  Not just for Ty, but there are about 7 or 8 adults in there with him for their own therapy.  I imagine it must be torture hearing Ty cry for two straight hours.  I know what that's like all too well...  

I was at my breaking point with Ty yesterday.  He woke up happy, but by 8AM that all changed.  I wasn't surprised.  Whenever he is tired like that he goes bonkers.  He complained about head pain that didn't really exist (I've become an expert on this).  He cried incessantly for no reason at all.  He was smothering me with ridiculous demands and he was just plain sad.  Sometimes in the middle of his hysterics I would yell, "USE YOUR WORDS!! WHAT'S WRONG!" and he yelled right back... "I JUST SAD!!!"

Poor kid.  I tried to give him an anti-anxiety medication to calm him down and help him nap.  It only made him more irritated.  I insisted on going upstairs with him for a nap (oh... how I wanted that nap!) but he just laid there for 45 minutes, whimpering in my ear.  I got so frustrated I threatened to take him to the hospital and the spiteful little kid that he is agreed.  He wanted to go!  Of course I wasn't really taking him to the hospital, but I did put him in the car and begin driving just to get him to sleep.  No.  Such.  Luck.  Not a wink.  After the fourth or fifth time he mentioned that he wants to go to the candy store and the vending machines at the hospital, I asked him if he'd rather go to the Arts and Crafts store closer to home (aka Michael's).  He was excited by that prospect.  Unfortunately, once we were there he cried the entire time about being there, and when we were leaving he cried about leaving.  Loud, embarrassing cries.  I almost lost it yesterday. 

Here's to a better day today.  He slept very well last night so I'm hoping for a happy boy when I pick him up from oxygen therapy and take him to Blythedale.  Fingers and toes are crossed.

Sunday, June 24, 2012

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 house, bedda.”  I was so happy, because that just proves that he really enjoyed himself on this much needed vacation.  Of course he will feel so good to be home, too.  It was the perfect amount of time to be away but I am ready to be home and resume with oxygen treatments and therapy because I was getting anxious about losing time (Ty probably feels otherwise about that part of being home).

We visited with Ty’s best friend Eva the other night.  She was so sweet, at one point she brought him over a cake she “baked” in her play kitchen, complete with candles.  There were three candles so Lou, Ty and I each had a wish.  We blew out the candle and joked about how we need to keep our wishes secret if we want them to come true.  When it was Ty’s turn, his face turned very serious and almost sad.   Lou and I looked at one another with concern.   How sad we would be if he wished for no more cancer, or if he wished to walk again.  He shouldn’t have to make such a serious and scary wish when playing around – or on his real birthday for that matter.  Keep him confident, keep him optimistic, keep him innocent to the horrors of what his cancer did to him.  Let Lou and I make those wishes.  After a little suspense, he flashed us his famous cheeky grin and yelled “I wished for candy!”  Phew. 

Reflecting on one year ago:
Exactly one year ago, Ty had two large tumors removed from his Cerrabellum via his second craniotomy.  He was in the PICU for a long time.  We were told he had recurrent brain cancer and that the likelihood of him surviving long-term is pretty much zero.  His neurosurgeon's exact words when we chose to move forward with surgery regardless were, “I want to give him a good summer.”  Here we are at the beginning of our second summer and although things aren't as we hoped, we are still living every day happy because we have Ty with us.  He keeps us smiling and grounded.  He is so special. 

When I went running to St. Catherine’s church one year ago, the priest who comforted me advised me that all I can do for Ty is continue being his mother, to walk him to the gates of heaven and to let him go.  One year later we are all still fighting and we are never gonna stop.  Lou and I celebrated his one year anniversary of the post-surgical MRI because it marks 365 without evidence of disease.  Here's the photo of Ty that I posted the day after his third major surgery/tumor resection.  He had been extubated just minutes earlier.  He's nothing short of miraculous.  SuperTy indeed.

Ty Campbell - June 22, 2011

Reflecting on two years ago
I looked up my photos from mid-June 2010 and can't believe how different our lives were.  Here is Ty in the backyard of our old house in Long Beach.  He's doing 3-D sidewalk chalk that I'm sure annoyed Lou a little when he got home from work.  It was always such a mess.  I used to try and wash down the concrete soon after.  Today I would pay anything for a slab of that sidewalk with Ty's chalk drawings to display in my home as if it were a world-renowned, priceless work of art. 


More muddy puddles await
We realize that Ty's physical progression has been slowing down.  I don't have much new to report. But that doesn't mean we’ll ever give up on his full physical recovery. We have so much confidence that we will see him doing this again, as a big boy.

Ty Campbell - July 4, 2009
Goodnight everyone. Thank you so much for your endless love and prayers. 

P.S. to Jenny:  I am so happy I saw you and that you got to see Ty.  It meant more than you know, I only wish we had more time to catch up.  You are a person that carries pure good and kindness on your shoulders.  You and your brother are in my prayers. 

Friday, June 22, 2012

This picture is worth a thousand words


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

Thursday, June 21, 2012

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 able to go back so soon after surgery and he can’t wait to show everyone the arts and crafts we snagged from the toy room on our way out.  Grandma came over to help out with Ty and Aunt Debi has been with Gavin so we should have an easy transition.  Ty hasn't required any pain medication since 6AM and I he looks unbelievable. All smiles from ear to ear.


When Ty woke me at six a.m. to tell me he’s ready to get up (huh???!!!) the first words he whispered to me were, “Mama, my head peels bedda.”  It was music to my ears.   Maybe this was a blessing in disguise and will ultimately result in fewer future headaches and faster physical improvement for SuperTy. 

Wednesday, June 20, 2012

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!!  Before I continue, I just need to make a statement about Ty's neurosurgeon.  We would never, ever blame him or anyone on his team for the number of complications that Ty has had with his shunt.  Nor would we blame his oncologist for any other treatment related issues Ty has experienced over the past year and half.  Ty's doctors are amazing.  They are vested.  And they are doing everything they can to help our baby boy.  Ty is simply a unique case with a lot of complications and we are happy that he is in such great hands.  They believe the secondary clog in the shunt tubing is due to an increased level of proteins in his CSF fluid.  This is not something that can be treated, however his neurosurgeon is going to try a different kind of valve to see if it helps prevent additional clogs.  Lou and I are also going to try pumping the valve every day to try and keep it flowing freely from now on... which is not a proven method but worth a try. 

I've been crying a lot today because of all my poor baby has to go through.  I am sitting in his room at the Pediatric Observation Unit in MSKCC (one step away from going to the PICU across the street) and I am just praying that the tubing that runs from the valve at the top of Ty's head into his abdomen doesn't need to be replaced.  The process for snaking that tube from the shunt valve down to his belly is actually pretty barbaric and it would make his recovery much more painful. They use a metal rod to snake the tubing under his skin from an incision in his abdomen all the way up to the incision on the top of his head.  It causes a lot of bruising and discomfort, as you can imagine. 

On the other hand, I am a little relieved that his latest issues are shunt related because at least I can say he doesn't have a random new brain tumor (which is what I live in fear of on a daily basis).  Not a day goes by that I don't worry about recurrence.  I thought it was totally unbelievable that Ty needed his seventh shunt revision just under 4 weeks ago.  I was flabbergasted.  I prayed with all my heart that it would be his last surgery for the rest of his life.  Today I am barely surprised that we are here again.  I totally accept it.  Of course I am beyond sad for him, but I am also exhausted, I am drained, I am weak, and I'm not sure if I have the fight in me right now. I'm glad I don't need it - that what we are dealing with today is something painful but fixable.  I need to get myself together if I'm gonna keep putting one foot in front of another on this never-ending journey.  Thank you for sticking with me and sending me your endless encouragement.  I feel your love and it helps me so much.

Gavin is also home with pink eye and I was just informed that he threw up his dinner.  He probably has a fever.  I feel very guilty for not being there.  This is the second time he's been sick like this when I've been in the hospital with Ty.  I want to be the one with my palms on his forehead, stroking his hair and whispering "shhhhh."  It makes me so mad that even the more difficult mommy moments with Gavin are being robbed from me.  I should be there!  I took this picture yesterday morning when he was getting a physical at our favorite pediatricians office.  Maybe he picked up a little something while he was there.  He was totally obsessed with the Rex doll they had in the waiting area.  You should have seen the fit he threw when I made him return it when we were leaving.  You would think the kid doesn't have 1,000 Toy Story toys of his own.  :)  My handsome boy. 



Tonight Lou made a comment that is so true.  We grabbed dinner at one of our favorite places while Ty was in surgery (it sounds terrible when I actually put that in writing), and our conversation went something like this:

LOU: Ty can't even enjoy this time being cancer free.  He never gets a break.
ME:  That's not true, the time between June and December last year was pure heaven.
LOU:  Yeah, but then he had a %$*^ing brain bleed that left him paralyzed on his left side.
ME: Yeah, but remember how well he was recovering?  That wasn't such a big deal because he started to get better.
LOU: Not a big deal??  Our four-year old son had what was essentially the same thing as a stroke.  To any other parent who hasn't been through what we have, that would be the most devastating thing to ever imagine their child suffering through!  He was left friggin' paralysed on one side of his body.  It's a really big deal!!  But wait, it gets worse.  Just when he starts to get better, he suffers a post-radiation lesion that takes out the other side even worse.  Now he is completely weak from top to bottom and can't even play with his toys. 

He's right.  When I think of what Ty has been through in the past six months - in the perspective that he is currently cancer free and still suffering like this - I can't help but realize how incredibly messed up it is.  When is this going to stop?  He's an incredible, deserving little boy.  Lou and I are not bad people.  That doesn't mean we're amazing, that's for sure, we're far from perfect but no one deserves this.  All I can do is channel all of my energy into prayers for healing and strength.  It helps me get through all of my moments of anger and frustration.  During Ty's MRI today, when I was in the middle of praying for Ty's full recovery (I was imagining him as a young man walking), at that moment he bent his knees and lifted his legs higher than I have seen in a very long time.  It was an involuntary cramp and it bothered him a little (we had to pause the MRI and restart that sequence because he shouldn't move during the imaging) but regardless, I believe that it was also a sign that he will get stronger......

...... I wrote the paragraphs above while waiting for Ty to get out of surgery.  My post was interrupted when he was returned to the room faster than we expected and I have been at his beck-and-call for the past four hours since.  He is doing phenomenal.  His surgery went well.  The valve and the shorter tube that was clogged from the burr hole in the skull to the valve was replaced, but the tubing that runs all the way into his abdomen was okay - which is great news.  No incision in the belly and much less bruising than if the entire piece was replaced.  He is wide awake and drinking tons of apple juice.  He told me that his head feels better and he's asking about when we can go home.  This kid!  I couldn't love him more.  Here's a photo of the latest incision.  The stitching from his previous surgery was still there so the skin was rather thin and will probably require a longer healing process this time around. 

 
His neurosurgeon understands how important it is for us to get Ty home as soon as possible for his own mental health (and ours).  As long as he remains stable - right now his vitals are perfect - then we can go home tomorrow afternoon.  Right now it's 2 in the morning, Ty is wide awake, and I feel like I can barely keep my eyes open.  It's going to be a loooong night, but I keep clinging onto the hope that we can head out of here in about 12 hours.  I can do another 12 hours. 

When we were on our way to the hospital, Ty was crying and he said that he was going to miss all of his stuff.  I told him that we brought his bag of stuff, but he cried even louder saying he was going to miss all of his other stuff.  When we were halfway here he said "I miss my nana blankie already."  I wish I remembered to bring that.  He also asked me and Lou to tell the doctor that he wants to still be on vacation.  The first people he asked to talk to after he woke up was Gavin and Mely.  He's so sweet.  I can't wait to get him out of here. 

 


Tuesday, June 19, 2012

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 physically uncomfortable at times.  Our heads are spinning every day, unsure if we should be doing something – taking him into the hospital.  But then he usually improves, his eyes will look better, and we start to exhale.  Until the next episode. 

I can’t explain what this feels like.  After two hours of lying with him this morning, both of us crying because of his head pain, I walked into the kitchen and toasted a bagel for breakfast as if life is normal and I should eat breakfast.  I stood there like a zombie, unemotional and spreading cream cheese thinking how bizarre it feels to fix myself something to eat while Ty is hurting in the room next door.  All morning poor Gavin has been busy entertaining himself (as he learned to do so well), because neither Lou or I have the energy to play with him when we become consumed with worry or sadness.  I keep hearing him tell Woody that he wants to take him outside to play, but I can’t seem to pick myself up, get dressed and take him out there.  I just want Ty to be better.  That’s all I ever want. 

My faith and optimism is being challenged.  My mind is playing a lot of tricks on me, and I feel like I have no control over the thoughts I’m having lately.  I sit with Ty and I beg God to relieve him and free him of his pain – but then I immediately retract my statement and clarify that I don’t want death to be the answer.  That I want him to live a wonderful, pain-free life here on Earth – with ME.  I don’t want God to misinterpret my thoughts and prayers.  I panic because I used the words “free” and “relieve him” which are so commonly associated with death and moving on.  I am not okay with that.  I never will be.  Ty is a fighter and I don’t care if heaven is something we should long for… I want him here with his family, growing up and enjoying life.  Doing the amazing things as a young man that we all know he is capable of.  I need to get control of my thoughts and stop making myself so crazy.



I’m scared.  It was only two weeks since yesterday that we were in the hospital for an emergency MRI due to head pain and vomiting and everything turned out fine.  What is going on now??  Lou and I actually think he may be having issues with his shunt again.  The stress level we are experiencing is indescribable.  We want to make pretend vacation is all fine and good, but we are also aware of how dangerous it can be if we ignore these recent symptoms.  Lou is looking to arrange for a scan locally, just to check his ventricles and make sure hydrocephalus isn't building.  We will keep you all posted.  Thank you for your thoughts and prayers.  Poor Ty.  Such a fighter.  Life is so unfair.  Cancer is the devil. 

Sunday, June 17, 2012

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 you how much that meant to me. It was very special for me to hear those words, thank you. I am so happy that Ty has touched so many people. He is a special little boy and I am so lucky to be his Mommy. PS - I have resorted to posting from the i-pad because I can't get online with my regular computer. I can't post the pictures I want to post, I can't figure out how to create a break in the paragraph, and this post was very delayed (I wrote it last night but couldn't get it up until Sunday afternoon. Tonight I will find a way to post the video montage of Lou and Ty in honor of Father's Day and I hope to get to a Starbucks tomorrow so I can share some pictures and type on a normal keyboard. As always, thank you for all of your postive thoughts, posts and prayers.

Thursday, June 14, 2012

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 decent amount of time to “build sand castles”.  By the way, I told Ty that his hair is out of control and he said, "I gunna grow my hair wheelie long."  I guess he's going for the British rock star look for now... that or the Robin Thicke bouffant.  Either way, he's stylin'. 


On Thursday of last week, Ty went to therapy at Blythedale and we said “goodbye” to all of his amazing therapists for this mini-hiatus that we have embarked on.  It is a little scary knowing that we will be missing several days of therapy (both in the oxygen chamber and at Blythedale), but Lou and I are committed to keeping him active, stretching him out and doing everything we can to try and maintain some of the headway he has made in therapy so far.  Lou is especially dedicated and knowledgeable on that front, so I know Ty won’t fall behind during the break.  If anything, I hope his therapists see improvement upon our return.  Lately I am seeing the most change is in Ty’s overall head control (he can’t hold his head up, but he can move much better from side to side and he isn’t having as much stiffness/spasms in his neck).  Also in his speech.  Ty is getting louder and louder and I am so grateful for this because there is nothing more frustrating for us both when we can’t communicate well.  Finally, his lower arms, his hands and his wrists are getting a little stronger.  I am seeing some slight lifting of the wrist (only when he is not working against gravity), his grip is a bit more controlled (he can hold onto simple objects without his hands going into spasm) and his lifting at the elbow is getting higher (he can almost lift his hands up to his face when he is sitting upright).   All of this tells me that the signal from his brain is there, that it is getting stronger and that it will continue to do so.  I just wish it could happen faster for him.  He is working so hard, he wants so badly to get better.

I can’t tell you how many people have told Lou and I that they feel nothing but confidence in Ty’s full physical recovery.  I have been told that magical things are going to happen for him, that he will turn a corner soon, that he will do amazing things and that he will continue to beat the odds by a number of people who have dreamt it, or who just feel it in their bones.  That means so much to me.  It is empowering to hear some validation from someone else.  We are not the only ones who believe in Ty – there is a whole wonderful community of people who love him and believe in him and knowing that brings tears to my eyes every day.  Happy tears, of course.
 
It’s very hard to put into words what it feels like to spend time back in Long Beach.  I am so excited to see everyone and to spend time at the beach – my ultimate zen – but at the same time I am haunted by memories of what used to be.  Watching Gavin play at Magnolia Park, the playground where Ty spent most of his time, makes me want to burst out in tears.  Walking past our old house and imagining Ty running in the lawn makes me want to bust open the doors and reclaim it.  Sunday I took Gavin down to the ocean and watched him as he grabbed fistfuls of sand and threw them in the waves over and over and over again.  When he was a baby I used to pick them both up after work and take them to sit at the ocean for an hour before our dinner/bath/bed routine.  Ty would do the exact same thing, throw sand in the waves, while Gavin crawled on the blanket.  Again, seeing Gavin enjoying all of the things that Ty can’t is heartbreaking.  I am sure that a lot of what I long for isn’t necessarily Long Beach, but the life we had here before cancer invaded our happy home.  I want my life back.  I am a better person and mom for having been through all of this, but I would rather be the person I was before because my Ty doesn’t deserve this.  It’s so unfair to him. 

This morning I took Ty and Gavin to the local candy store for some delicious chocolates.  The woman working behind the counter wasn’t familiar to me.  She didn’t realize there was something wrong with Ty, at first.  She just thought he was sleepy (like everyone does).  Even after she saw the neckbrace and the way I propped him on my knee to see the chocolates, she didn’t shy away from interacting with him and I loved the way she talked to him.  She was so soft, so warm and so kind.  I instantly knew she was a loving person.  “He’s just so tender” she told me, and I couldn’t agree with her more.  What a perfect insight coming from a complete stranger.  Ty is tender and pure. 


It’s been so long since I’ve been able to write, it’s impossible to recall all of the details from the past week.  As I mentioned, we were at Blythedale last Thursday.  Friday morning was our big meeting at the Pawling  Elementary school to discuss Ty’s future in the education system and what kind of services he will be awarded.  I am pleased with how that went.  The special education department clearly cares and they want to give him everything he needs to succeed.  It’s just hard for me to sit in that conference room and talk about a school environment for my son that is so very different than what I imagined for him just three months ago.  He will be getting a lot of PT/OT and speech and a special education specialist to conduct at-home tutoring every day until Ty is physically able to attend school. 

After the meeting we left for Long Beach to kick off the weekend.  As I mentioned, we had a wedding on Saturday so Friday night was a wonderful rehearsal dinner.  My mom and dad graciously watched the boys so Lou and I could enjoy ourselves.  The we had the best time at the wedding.  Really.  It was a perfect day.  The wedding took place in the afternoon, the weather was perfect, and we got home in time to put the boys to bed so there wasn’t much stress over Ty’s medication and such.  The only hiccup in the evening was when my mom called to tell me that Ty threw up, but it was an isolated incident and that happens.  As long as it doesn’t happen more than once, I try not to panic.  Sunday was a big post-wedding brunch at the hotel and I took Gavin for a long walk on the boardwalk.  Later that day my cousin and some of my best friends since elementary school came out to spend the day with us and we had a great time at the beach with all of the kids.  That was the one and only time I got Ty out there on the sand, but he really enjoyed it.  I had him sitting in my lap as I built a sand castle and made sand cupcakes.  The other kids showed Ty the sand crabs they were catching and Gavin was bringing him buckets of water.  All things considered, it was actually pretty normal.  He didn’t last long, but Lou was there to take Ty back to the house so I could spend more time in the water with Gavin.  It was a great day.  We spent Monday recuperating and walking all over town with Ty and Gavin.  And eating!  We’ve been doing a lot of that.  Yesterday was wet and rainy so we all snuggled indoors for the most part and today I took the boys to the mall and to visit with Grandma and Pop-pop.  We are having such a great time. 


One last update before I sign off.  Ty started a new cycle of oral chemo (etoposide again) and his eating habits have completely changed yet again.  This always seems to happen when he changes medication.  He hasn’t been eating much of anything at all (and he had been doing so well with that just last week!) but I am happy to report that he is drinking milk again for the first time in probably eight months.  Out of the blue, he decided he wanted to try it again.  In fact, I returned to the living room after doing dishes to hear Ty and Gavin laughing this morning.  “Look” Ty said, and he took a sip from the straw.  I was so confused until I realized that Gavin had helped Ty by propping up his cup, and Ty was able to reach the straw on his own.  It was so cute!  You can see from the picture that he is really balancing the cup rather than holding it up, but regardless, it made him feel proud and independent.  :)

Wednesday, June 6, 2012

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 with him today.  She also worked with him on writing a list of things to pack for our upcoming vacation at the beach.  Both the list and the popsicle sticks became Ty's obsession of the day (and probably for several days from now on).  All day long he held them tucked under his arms unless he absolutely had to let go (i.e. for physical therapy) in which case he asked me several times if I had his list and sticks - just to be sure.  They are now in the bag with his other favorite things.  The bag that goes everywhere with us.  So cute.

Here he is with one of the popsicle sticks tonight.  He was showing off to Gavin.  It's so funny, the things that kids get a kick out of.  He is also getting a g-tube feed of pedialite, in case you are curious about the huge syringe on the pillow.  He hasn't been drinking enough fluids during the day, but his eating has improved tremendously.  Finally, he has regained some of his appetite. 


One of the things Ty looks forward to the most when he gets to the carnival is winning a goldfish prize at one of the games.  He got the idea from an episode of Max and Ruby and he won't let it go.  It became such a big topic of conversation over the past few weeks that my parents recently surprised him with a pet fish of his own.  Meet Max and Morris (yes, I know, it's only one goldfish... tell that to Ty).  This is the very first pet the Campbell family has ever had and we love him :)


While Ty was at therapy today, Gavin sweetly fixed all of his pillows on the couch.  Our babysitter told him that he is the best brother and to that he replied "and, Ty is the best bro-ver, too!"  So sweet. I love how they love each other.  I wish I captured Gavin trying to feed Ty on video today.  He was shoving pretzels in his mouth waay to rough, but he really meant well and was genuinely trying to help.  Ty was such a sport about it, too.  I thought he would be in hysterics, but he just laughed and laughed at his crazy brother. I love how these two love each other.   I can't bear the thought of them ever being apart.  God willing, they never will be.  

Here they are resting together.  I feel like I should probably be doing the same thing.  Good night everyone.  As always, thank you for your love and support. 





Tuesday, June 5, 2012

Bedda

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 us.  What a good boy he has been through all of this.  Then he went to school and therapy all day, and he even worked hard with his at-home occupational therapist for an hour after we got home.  Usually a long day like today would have wiped him out and left him completely irritable, but he was nothing but happy and pleasant all day.

Ty Louis Campbell continues to amaze me in every way.  His ups and downs remain a mystery which can be so frustrating, but I am just so glad that today was a perfect day and he was on the up and up.  May he be even bedda tomorrow and every day hereafter.  God bless our little fighter.

Monday, June 4, 2012

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 terrible disease.

The party was outdoors and when we left the house it was the most beautiful, perfect day.  We took extra time to change the boys into shorts, tees, and sunglasses, and to lather them up with sun block in advance.  In typical Campbell fashion, we pulled up to our VIP parking spot with a huge, black storm cloud hot on our trail (that cloud is my nemesis).  The storm rolled in at the height of the party, but luckily it really didn’t last long – and it certainly didn’t damper anyone’s spirits.  We finally had a chance to get out as a family, and we met so many nice people there. 

Ty and Gavin both had a great time.  Ty is still talking about how much “pun” he had at the “burr-day party.”  Lou and I tried explaining that it was a fundraiser, not a birthday party, but Ty thinks we don’t know what we’re talking about.  He looks at us like we’re weirdos  when we try to explain the difference.   In fact, he loved the raffles so much, that he has added a strip of raffle tickets to his pile of “stuff.”  This is a really big deal.  Ty’s “stuff” consists of his favorite things that have to go with us everywhere.  It used to include two car squinkies, his shooting ice cream cone, his train, his motorcycle Spiderman and his Captain America.  Captain America is still a favorite, but now he is joined by Ty’s two robots, his stuffed Max doll, a random coloring book that he got after some recent bloodwork, his candy, a toy book and now, the strip of tickets.  All of those things go with us absolutely everywhere.  He’s so funny about it.  Check out the baller himself with his tickets in this picture from the fundraiser :)


Lou, Melissa and SuperTy


Today turned out to be a very long, scary day.  Lou and I decided to take Ty to Sloan Kettering after his oxygen treatment because he complained of head pain and vomited a handful of times over the weekend.  The symptoms reminded us of what it was like when Ty still had tumor burden on his brainstem, so we feared the worst.  The decision to head to the hospital happened so fast, I wasn’t even able to alert you all and call on your prayers in time.  Luckily, Ty’s angels were there and his MRI today showed that everything looks fine in the brain.  Why he hasn’t been feeling well remains a mystery and we just have to keep a really close eye on him (it’s not as if we ever don’t, anyway).  Lou and I feel like we live our lives on a battlefield, taking cover, dodging bullets, constantly on edge.  Today, we are exhausted, but we are in this for the win.  Cancer fears all of us :)

It’s 8PM as I write this and we are still on our way home.  We left so early in the morning, I won’t even get a chance to see Gavin awake today and that really bothers me.  I guess the plus side about going to the hospital today is that we were able to get Ty’s infusion of Avastin that was otherwise scheduled for Wednesday.  Now we won’t have to go back this week and we can rest easy for a few days knowing that his scan was stable.  We also picked up his Etoposide and Accutane so he can begin his next chemo cycle at home on Friday (he's almost done with this course of Temodar).  Ty did fairly well today, too.  No narcotics.  No nausea.  And, he barely complained of head pain.  He was tired and spacey earlier in the day which had all of us concerned, but later in the afternoon he perked up and was having some fun in his room playing games, reading books and watching TV.  Thank God.
 
Next weekend one of my favorite people in the entire world is getting married.  I am beyond honored to be in her wedding party and sharing this special day with her.  Christina, I love you and I can’t wait for Saturday.  Your wedding is going to be just perfect. 

The most beautiful bride-to-be


She is getting married in Long Beach (New York) so Lou and I decided to take the entire family back to the old neighborhood for a vacation with all of our Long Island friends and neighbors.  We will be heading out there on Friday and staying for two weeks!  Fingers crossed for some great weather, but even more importantly, fingers crossed that TY is feeling good and happy the entire time.  We will take a LOT of pictures. 


Sunday, June 3, 2012

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 before he goes near a strawberry.  This is upsetting because most days the only thing he eats is pretzels and strawberries.  Maybe a couple of grapes here and there.  Feeding him will always be a challenge as long as he is on treatment, but I continue to make my shakes from baby food which helps to ensure that he gets his daily nutrition. 

I was praying that yesterday would be an isolated incident.  Ty slept very well through the night and he didn't wake up until almost eight.  He was wide eyed and smiling when I brought him downstairs, but soon the crying began.  The head pain was obvious.  I had to give him more morphine and now he is feeling better.  It breaks my heart that my four-year-old is high on narcotics just to get through the day.  This is so not okay. 

As I'm writing this post, Ty interrupted to tell me that he doesn't have to go to the hospital because he feels better, and that he wants to play on the floor.  When he was sitting and scooting around my house just two months ago, all I wanted for him was to get up on his feet.  To be able to stand and walk.  Now all I want is for him to be able to sit up so I could put him on the floor with his brother again.  I want him to be able to feed himself, to hold a toy in his hands.  I am so sad for him in so many ways.   

Don't worry, my hope is forever unwavering.  I am just sad this morning, but feeling better already because Ty and Gavin bring me so much joy despite it all.  Today we will be taking the whole family to a big fundraiser for our special boy, and we are excited to see how many people here in Pawling will come to show Ty their support.  The sun is shining and it's going to be a beautiful day. 

Here is just a funny picture of Ty with a gummy brain on his forehead.  Gummy brains are good for the brain :)


Ty just interrupted me again to tell me that he wants to go to the beach to fly a kite, and dig, and put sand in buckets.  We will be heading to Long Beach for a vacation in the old neighborhood soon, and I can't wait to bring him to the beach.  I hope he is happy there.  We will help him to do all of those things, and try to make it as normal as possible for him. 

Here's Ty flying a kite in October 2010, the day before he had his first chemo infusion.  This is the last time he stood on the beach independently.  Some day he will do this again.